We made it to Houston safe and sound earlier. We are at Jesse's sister's house on a really bad internet connection, but I thought I'd try to update everyone.
We'll be heading over to MD Anderson tomorrow around 11am. Check-in is at 1pm, but we want to get there early, learn our way around, and get some lunch. After looking over a map Jesse's brother in law had, it looks like a huge facility. It's located in a medical district area with multiple other specialized hospitals.
We plan to take our laptops to play around on and kill time if we have to wait around tomorrow. If they have any type of wireless connection, I will try to make a post or two and let everyone know how things are going.
About Me
- aymztx
- Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -
Tuesday, June 30, 2009
Friday, June 26, 2009
PET Scan Results
Received my PET Scan results last night. In addition to the known lump in my right breast, and the biopsied axillary node, there are several other possibly affected axillary nodes on that same side. They also saw a few things in my chest area, but seem to think that they are most likely granulomatous, but they did not rule out the small chance it could be metastases.
All test results including x-rays, scans, reports, biopsies etc will be going with me (or have already been sent) to MD Anderson. They are going to do a thorough review of all of them and offer their opinion. Hopefully, by the end of next week I should feel pretty confident that I have all the information I need to make a decision.
On another note, we may still be in Houston next Friday (July 3). Katie has her finale' at her swim class where the parents get to see what all they've learned. I know Katie is really going to be disappointed if I have to miss this. I've asked Maegan to try to video tape it if she can, but I was also hoping that some family might be able to show up (especialy if we can't be there), so that she will feel like she has someone there to see her accomplishments.
If any of you are available, and would like to go, it's at 10:30 am, Friday, July 3rd, at the Central Aquatics Center (715 Mary Dr, Hurst, TX). You would want to be there no later than 10:30 because it will only be a 20 min demonstration (they are going to reward them with 10 min of free play at the end of the 30 min class time). You will need to enter and park in the parking lot that is accessible from Pipeline, between Hurstview and Buena Vista. The front, main gates will NOT be open, so you would need to enter through the back gate (which is easiest to access from the parking lot I described. If you have trouble finding the back gate, you can park at the main gate and walk around the waterpark to the back, but there is no way to drive through from Mary (despite what the maps show) . The best map I could find is here: http://www.ci.hurst.tx.us/Departments/Parks/Central.htm
All test results including x-rays, scans, reports, biopsies etc will be going with me (or have already been sent) to MD Anderson. They are going to do a thorough review of all of them and offer their opinion. Hopefully, by the end of next week I should feel pretty confident that I have all the information I need to make a decision.
On another note, we may still be in Houston next Friday (July 3). Katie has her finale' at her swim class where the parents get to see what all they've learned. I know Katie is really going to be disappointed if I have to miss this. I've asked Maegan to try to video tape it if she can, but I was also hoping that some family might be able to show up (especialy if we can't be there), so that she will feel like she has someone there to see her accomplishments.
If any of you are available, and would like to go, it's at 10:30 am, Friday, July 3rd, at the Central Aquatics Center (715 Mary Dr, Hurst, TX). You would want to be there no later than 10:30 because it will only be a 20 min demonstration (they are going to reward them with 10 min of free play at the end of the 30 min class time). You will need to enter and park in the parking lot that is accessible from Pipeline, between Hurstview and Buena Vista. The front, main gates will NOT be open, so you would need to enter through the back gate (which is easiest to access from the parking lot I described. If you have trouble finding the back gate, you can park at the main gate and walk around the waterpark to the back, but there is no way to drive through from Mary (despite what the maps show) . The best map I could find is here: http://www.ci.hurst.tx.us/Departments/Parks/Central.htm
Thursday, June 25, 2009
Schedule Changes
Received a phone call from MD Anderson after they reviewed the recent Axillary Node biopsy. They are now classifying this is metastatic disease and rather than seeing a breast surgeon first, they want me to see an oncologist. They only had July 1st or July 13th available, so I chose July 1st not wanting to put this off any longer.
Jesse's mom will be here Monday and we've contacted his sister in Houston to make sure that the change in plans is ok with her, so it appears everything is covered.
I rescheduled my breast consult for July 9 at 10:30.
All events have been updated on the calendar.
Jesse's mom will be here Monday and we've contacted his sister in Houston to make sure that the change in plans is ok with her, so it appears everything is covered.
I rescheduled my breast consult for July 9 at 10:30.
All events have been updated on the calendar.
Wednesday, June 24, 2009
PET Scan Done and Genetics Results
Went in for my PET Scan today. They made me drink this white shake like mixture and then injected me with some radioactive glucose. It made me really nauseous and I had to wait quite a while for it to get into my system before they did the scan. I ended up getting sick, but afterwards felt mostly ok. Results should be back in a few days.
Genetics test came back today. After hours of waiting (since I had missed the initial call which of course came while I was doing the PET scan) I found out I am negative. Good news for a change!
Genetics test came back today. After hours of waiting (since I had missed the initial call which of course came while I was doing the PET scan) I found out I am negative. Good news for a change!
Monday, June 22, 2009
Axillary Node Biopsy Results
Radiologist from Baylor called me back this morning and let me know the results. The lymph node she had suspected is positive for cancer. This means during my surgery they will need to take out that lymph node along with a few others.
I have a PET Scan on Wednesday that should show if any other nodes or organs are affected. The radiologist says she suspects it's just the nodes in the breast area. I hope she's right.
So coming up this week I have:
PET Scan Wednesday
Genetics results Thursday
Reconstructive Surgery Consult July 2
2nd Opinion at MD Anderson July 6-7
I have a PET Scan on Wednesday that should show if any other nodes or organs are affected. The radiologist says she suspects it's just the nodes in the breast area. I hope she's right.
So coming up this week I have:
PET Scan Wednesday
Genetics results Thursday
Reconstructive Surgery Consult July 2
2nd Opinion at MD Anderson July 6-7
Friday, June 19, 2009
Axillary Node Biopsy
Went in this morning for my ultra sound. Ultra sound confirmed loss of fatty hilum. The radiologist recommended the axillary node in question be biopsied on the spot. After she explained the procedure, I decided to have it done. They did it in the office under local anesthesia, and it was no more painful than the core breast biopsy I had a few weeks back. They said it may be a little more sore due to the area and that I should avoid heavy lifting for a day or so. I should know results by Monday.
The radiologist seems very dedicated to this cause. She not only took the time to call me back and answer my questions yesterday, she also only does breast radiology. She has been doing this for 20 years. She is off next week on vacation, but is still willing to call me Monday and give me my results personally. She is an MD with certification in Radiology, specializing in Diagnostic Radiology according to the American Board of Medical Specialties website.
She said that the benefits of knowing this information (should it come back positive) would be:
Just found some more research that may make the doctor at Baylor a VERY reliable source for information:
"Baylor researchers also spent two years studying 305 breast cancer patients who had undergone sentinel lymph node biopsy to determine when the cancer was most likely to metastasize to help improve survival rates."
Full article here: http://www.bhcs.com/AdvancingMedicine/AreasOfResearch/Diseases/Pages/CancerResearch.aspx
And here is the procedure I had done today in detail (not for those who are squimish about needles): http://radiographics.rsnajnls.org/cgi/content/full/27/suppl_1/S91
The radiologist seems very dedicated to this cause. She not only took the time to call me back and answer my questions yesterday, she also only does breast radiology. She has been doing this for 20 years. She is off next week on vacation, but is still willing to call me Monday and give me my results personally. She is an MD with certification in Radiology, specializing in Diagnostic Radiology according to the American Board of Medical Specialties website.
She said that the benefits of knowing this information (should it come back positive) would be:
- Possible change of treatment options (chemo prior to surgery) to prevent further spread to other parts of my body
- Knowing going into surgery that I would have all lymph nodes removed
- Avoidance of sentinel node biopsy at surgery time, and possible false negative result that would result in an additional surgery to remove nodes
Just found some more research that may make the doctor at Baylor a VERY reliable source for information:
"Baylor researchers also spent two years studying 305 breast cancer patients who had undergone sentinel lymph node biopsy to determine when the cancer was most likely to metastasize to help improve survival rates."
Full article here: http://www.bhcs.com/AdvancingMedicine/AreasOfResearch/Diseases/Pages/CancerResearch.aspx
And here is the procedure I had done today in detail (not for those who are squimish about needles): http://radiographics.rsnajnls.org/cgi/content/full/27/suppl_1/S91
Thursday, June 18, 2009
To Biopsy or Not to Biopsy
I spoke to the Radiologist at Baylor-Irving who wrote my MRI report. She answered most of my questions and recommended a follow up Ultrasound to further investigate the loss of the fatty hilum on the axillary lymph node she noticed on MRI. I am scheduled to go in tomorrow morning for this.
Should this come back positive, she will most likely recommend an axillary node biopsy be done. My nurse at my breast surgeon's office says there is no advantage to this, other than avoiding the sentinel node biopsy at the time of the surgery (and that's only if the biopsy came back positive). The radiologist says that it might save me an additional operation. I'm thinking it might give me a better idea of whether to expect radiation or not, but not sure if knowing that is worth another minimally invasive procedure.
I also received some discomforting news regarding why the MRI came back inconclusive. According to the radiologist, I have some of the most dense breast material she has ever seen. She said that even MRI most likely wouldn't be able to detect small tumors (less than 2 cm) until they were larger. She said, should I choose lumpectomy over mastectomy, that I would need to do mammography every 6 months (despite the fact they are unable to read them), and that I could only have MRI screenings once a year (I didn't think to ask why, but guessing insurance issues or some health risk).
With the family history, prior breast cancer etc... and knowing that I've already had to have 5 biopsies in the last 7 months, I can see these screenings becoming a real hassle. They would be more likely to investigate every little thing, thus leading to endless biopsies every 6 months. Also, there is the additional fear of them not finding something deep down in the breast tissue until it is at a late stage due to the density to consider.
At this point (of course this might change as new information is presented to me, particularly after I hear what MD Anderson has to say) I am definitely leaning towards bilateral mastectomy just to be done with this and not have to deal with this over and over for the rest of my life (whether it just be the endless screenings and biopsies or an actual second cancer). Although I know this is probably the best decision, and afterwards I'd probably be glad I made it, I'm still considering lumpectomy due to my extreme fear of surgery and the pain and suffering afterwards. Right now, I'm trying to decide which is worse: dealing with the fear and hassle over and over or going through the scary process of a full blown surgery. It's like being on that old game show(was it called Let's Make A Deal or something?) where you have to pick door 1 or 2 and both have goats behind them.
Should this come back positive, she will most likely recommend an axillary node biopsy be done. My nurse at my breast surgeon's office says there is no advantage to this, other than avoiding the sentinel node biopsy at the time of the surgery (and that's only if the biopsy came back positive). The radiologist says that it might save me an additional operation. I'm thinking it might give me a better idea of whether to expect radiation or not, but not sure if knowing that is worth another minimally invasive procedure.
I also received some discomforting news regarding why the MRI came back inconclusive. According to the radiologist, I have some of the most dense breast material she has ever seen. She said that even MRI most likely wouldn't be able to detect small tumors (less than 2 cm) until they were larger. She said, should I choose lumpectomy over mastectomy, that I would need to do mammography every 6 months (despite the fact they are unable to read them), and that I could only have MRI screenings once a year (I didn't think to ask why, but guessing insurance issues or some health risk).
With the family history, prior breast cancer etc... and knowing that I've already had to have 5 biopsies in the last 7 months, I can see these screenings becoming a real hassle. They would be more likely to investigate every little thing, thus leading to endless biopsies every 6 months. Also, there is the additional fear of them not finding something deep down in the breast tissue until it is at a late stage due to the density to consider.
At this point (of course this might change as new information is presented to me, particularly after I hear what MD Anderson has to say) I am definitely leaning towards bilateral mastectomy just to be done with this and not have to deal with this over and over for the rest of my life (whether it just be the endless screenings and biopsies or an actual second cancer). Although I know this is probably the best decision, and afterwards I'd probably be glad I made it, I'm still considering lumpectomy due to my extreme fear of surgery and the pain and suffering afterwards. Right now, I'm trying to decide which is worse: dealing with the fear and hassle over and over or going through the scary process of a full blown surgery. It's like being on that old game show(was it called Let's Make A Deal or something?) where you have to pick door 1 or 2 and both have goats behind them.
Wednesday, June 17, 2009
MRI Questions and PET Scan Scheduled
PET Scan has been added to my calendar. It will be done on June 24th at 10:30 am. Maegan should be available to take Katie to swim lessons, but I would not mind having a back up just in case.
Today when I went to pick up a copy of the MRI films from Baylor in Irving, I spoke to someone and requested to talk to the doctor who had interpreted my MRI so I could ask her some questions. She should be calling me tomorrow. I made up a list of questions to ask her. Here is what I came up with (any input or additional questions you might ask would be appreciated):
All questions are in regards to the three paragraphs at the bottom of the first page of the report labelled: "Impression: Known Biopsy Proven Malignancy".
1.In the first paragraph of this section it states that there is extensive bilateral background enhancement, severely limiting the evaluation for any other possible lesions".
The reason I am concerned about this, is that they have difficulty on mammograms and ultrasounds due to the density of my breasts. I have been told that MRI is the most effective screening method for women with dense breast tissue. I am making decisions for surgery at this time and knowing that I have an effective screening method is important to me. If MRI is not an effective screening method for me, I may be more likely to go with a bilateral mastectomy vs unilateral mastectomy or lumpectomy + radiation to prevent risk of tumors not being found at earlier stages.
2. In the last paragraph it talks about a lymph node involvement indicator involving the loss of the "fatty hilum". I did some research online using pubmed and google and only found a couple of studies with less than 100 participants in each. I was unable to get any information on the use of this as an indicator from the American Cancer Society, National Cancer Institute, or Susan G Komen.
Today when I went to pick up a copy of the MRI films from Baylor in Irving, I spoke to someone and requested to talk to the doctor who had interpreted my MRI so I could ask her some questions. She should be calling me tomorrow. I made up a list of questions to ask her. Here is what I came up with (any input or additional questions you might ask would be appreciated):
All questions are in regards to the three paragraphs at the bottom of the first page of the report labelled: "Impression: Known Biopsy Proven Malignancy".
1.In the first paragraph of this section it states that there is extensive bilateral background enhancement, severely limiting the evaluation for any other possible lesions".
- Does this mean that they were unable to tell, due to the density of my breasts, if there were other possible lesions/tumors in my breasts? Or, does it mean that the MRI was a bad MRI?
- How effective IS MRI for screening dense breasts?
The reason I am concerned about this, is that they have difficulty on mammograms and ultrasounds due to the density of my breasts. I have been told that MRI is the most effective screening method for women with dense breast tissue. I am making decisions for surgery at this time and knowing that I have an effective screening method is important to me. If MRI is not an effective screening method for me, I may be more likely to go with a bilateral mastectomy vs unilateral mastectomy or lumpectomy + radiation to prevent risk of tumors not being found at earlier stages.
2. In the last paragraph it talks about a lymph node involvement indicator involving the loss of the "fatty hilum". I did some research online using pubmed and google and only found a couple of studies with less than 100 participants in each. I was unable to get any information on the use of this as an indicator from the American Cancer Society, National Cancer Institute, or Susan G Komen.
- How effective an indicator is this? (ball park figures would be great if you have them even)
- Are there any studies you know of that are larger that I could look at?
- If you are unsure, is there a source I could go to that might be able to provide me with some research and information on this?
Tuesday, June 16, 2009
Possible Lymph Node Involvement?
Read this earlier:
This article was posted on the Imaging Technology News website on June 12, 2009
Breast MRI, Lymph Nodes Good Indicators of Breast Cancer
This is from my MRI Report:
"Although MRI is nonspecific in regards to lymph node involvement, there is a 1.2 cm right axillary lymph node which has lost it's fatty hilium, suggesting the likelihood of involvement. "
This article was posted on the Imaging Technology News website on June 12, 2009
Breast MRI, Lymph Nodes Good Indicators of Breast Cancer
June 12, 2009 - Enlargement and abnormalities of axillary sentinel lymph nodes located in the armpit area near the breast are predictive of cancer, according to initial research conducted at University of Florida Shands Cancer Center and published in the Journal of Magnetic Resonance Imaging.
What more accurately indicates the spread of disease is the loss of a key part of a normal node's structure called the fatty hilum that more accurately signals the spread of disease, not the size of the node or enhancement.
"We found that the loss of fatty hilum in an axillary lymph node on MRI correlated with finding the spread of breast cancer in axillary nodes at the time of surgery," said Stephen Grobmyer, M.D., an assistant professor of surgical oncology and endocrine surgery at the UF College of Medicine, who noted that not all nodes without fatty hilum necessarily had cancer.
The findings also reinforce the value of using MRI to determine the extent of breast cancer prior to surgery, which is capable of detecting more than 95 percent of invasive breast cancers.
The UF study retrospectively examined 56 female patients ranging in age from 30 to 82. All women had a sentinel lymph node biopsy. Fifteen women had cancer in the nodes that required complete removal. Four of eight patients in whom a loss of fatty hilum was seen in an axillary node on MRI were found to have cancerous lymph nodes at the time of their breast surgery. By comparison, only 11 out of 48 patients, or 23 percent, with all fatty hilum in place had cancer.
For more information: www.health.ufl.eduThis is from my MRI Report:
"Although MRI is nonspecific in regards to lymph node involvement, there is a 1.2 cm right axillary lymph node which has lost it's fatty hilium, suggesting the likelihood of involvement. "
Monday, June 15, 2009
Test Results
Received some test results today:
CT Abdomen:
No evidence of metastatic disease (Metastasis (Greek: displacement, μετά=next + στάσις=placement, plural: metastases), or Metastatic disease, sometimes abbreviated mets, is the spread of a disease from one organ or part to another non-adjacent organ or part.)
NM Bone / Joint Whole Body:
No abnormality identified
FISH Test:
HER-2 Gene negative.
CT Thorax w/contrast:
Inconclusive. They want to do a PET scan to look at a few things.
CT Abdomen:
No evidence of metastatic disease (Metastasis (Greek: displacement, μετά=next + στάσις=placement, plural: metastases), or Metastatic disease, sometimes abbreviated mets, is the spread of a disease from one organ or part to another non-adjacent organ or part.)
NM Bone / Joint Whole Body:
No abnormality identified
FISH Test:
HER-2 Gene negative.
CT Thorax w/contrast:
Inconclusive. They want to do a PET scan to look at a few things.
Saturday, June 13, 2009
Power Outage
Sorry I haven't updated the blog for a few days. We were without electricity from Wednesday night until Friday evening. We were so happy when the power came on around 7pm last night.
Wednesday, Jesse and I went to a consultation at a plastic surgeon in Colleyville. He examined me and told me what he was willing to do. He only gave me one option and used words like "disfigured", "never look natural", etc. I was not impressed with him at all. I left feeling a bit discouraged.
Thursday, I went in for the genetics test. It was pouring rain and I got drenched going from my car to the door. I went back for my testing and the doctor there went over everything. She explained to me what they were looking for, why, and how it would be useful in my decision making and treatment. She also explained to me how knowing could help reduce my family's chances of cancer. They were very thorough. All that was required to do the test was a signature and a tube of blood. I'm starting to look like a human pin cushion with all these IV's and blood draws!
Thursday afternoon, we went back to Dr Brian's office and she checked my biopsy site to make sure it was healing well. All was fine there. She had the results back from the MRI, and it was good news. They did not find any other suspicious areas in either breast. Only one worrisome thing, is that they suspect it may be in the lymph node under my arm. There is no way to know for sure until they do the sentinel node biopsy during my surgery.
Friday, I went to Harris HEB for my CT Scan and Whole Body Scan. When I arrived at 7:30 they brought me back and injected the contrast for the Whole Body Scan. It needed to be in my system for about 3 hours or so before they could do the whole body scan. They went ahead and did the CT Scan in the meantime. It was just a donut shaped thing they moved me in and out of. There was an automated voice and these goofy green emoticons that told you when to hold your breath. It was hard not to laugh. Once they were done with that one, they let me go for a while and I was able to get some breakfast. We went back at 11am for the whole body scan.
The whole body scan was long and boring, but nothing too horrible. They put you on a flat board on a track and it slowly moves you along and takes pictures. It starts at your head and creeps along. You can barely tell you are moving. It takes a complete image of your entire skeleton from head to toe and the contrast they gave me makes the inside of the bones show up. They use this test to look for cancer in the bones. I should have results from both tests early next week.
Friday afternoon, we went over to my dad's house for a bit and took a little break from the heat. Our electricity was still off and it was hot and humid. We swam and charged up all our devices. While I was over there, I called MD Anderson again and left another voice mail.
MD Anderson called me back and I got good news! They said they can do the second opinion for me. They can get it done in two days even. I am scheduled to go in July 6th and July 7th. They want to do their own mammogram and ultrasounds on July 6th, but they can use all the other test results, including the biopsy slides that I already have. They will have another pathologist review the slides, provide me a new pathology report showing their diagnosis, and I will meet with one of their breast surgeons to discuss treatment options on July 7. I think I will have all the information I need to make good decisions on surgery and treatment after that is completed.
This coming Tuesday, I am going to go meet with another plastic/reconstruction surgeon. I saw some of this surgeons work when I talked to Dr Brian on Thursday. She had a book of before and after results and if he can do as well for me I'd be able to definitely live with it. Jesse has to work that day, but I've asked my sister to come along with me. I'll try to blog and let everyone know how that goes on Tuesday.
Wednesday, Jesse and I went to a consultation at a plastic surgeon in Colleyville. He examined me and told me what he was willing to do. He only gave me one option and used words like "disfigured", "never look natural", etc. I was not impressed with him at all. I left feeling a bit discouraged.
Thursday, I went in for the genetics test. It was pouring rain and I got drenched going from my car to the door. I went back for my testing and the doctor there went over everything. She explained to me what they were looking for, why, and how it would be useful in my decision making and treatment. She also explained to me how knowing could help reduce my family's chances of cancer. They were very thorough. All that was required to do the test was a signature and a tube of blood. I'm starting to look like a human pin cushion with all these IV's and blood draws!
Thursday afternoon, we went back to Dr Brian's office and she checked my biopsy site to make sure it was healing well. All was fine there. She had the results back from the MRI, and it was good news. They did not find any other suspicious areas in either breast. Only one worrisome thing, is that they suspect it may be in the lymph node under my arm. There is no way to know for sure until they do the sentinel node biopsy during my surgery.
Friday, I went to Harris HEB for my CT Scan and Whole Body Scan. When I arrived at 7:30 they brought me back and injected the contrast for the Whole Body Scan. It needed to be in my system for about 3 hours or so before they could do the whole body scan. They went ahead and did the CT Scan in the meantime. It was just a donut shaped thing they moved me in and out of. There was an automated voice and these goofy green emoticons that told you when to hold your breath. It was hard not to laugh. Once they were done with that one, they let me go for a while and I was able to get some breakfast. We went back at 11am for the whole body scan.
The whole body scan was long and boring, but nothing too horrible. They put you on a flat board on a track and it slowly moves you along and takes pictures. It starts at your head and creeps along. You can barely tell you are moving. It takes a complete image of your entire skeleton from head to toe and the contrast they gave me makes the inside of the bones show up. They use this test to look for cancer in the bones. I should have results from both tests early next week.
Friday afternoon, we went over to my dad's house for a bit and took a little break from the heat. Our electricity was still off and it was hot and humid. We swam and charged up all our devices. While I was over there, I called MD Anderson again and left another voice mail.
MD Anderson called me back and I got good news! They said they can do the second opinion for me. They can get it done in two days even. I am scheduled to go in July 6th and July 7th. They want to do their own mammogram and ultrasounds on July 6th, but they can use all the other test results, including the biopsy slides that I already have. They will have another pathologist review the slides, provide me a new pathology report showing their diagnosis, and I will meet with one of their breast surgeons to discuss treatment options on July 7. I think I will have all the information I need to make good decisions on surgery and treatment after that is completed.
This coming Tuesday, I am going to go meet with another plastic/reconstruction surgeon. I saw some of this surgeons work when I talked to Dr Brian on Thursday. She had a book of before and after results and if he can do as well for me I'd be able to definitely live with it. Jesse has to work that day, but I've asked my sister to come along with me. I'll try to blog and let everyone know how that goes on Tuesday.
Wednesday, June 10, 2009
Tests and More Tests
Yesterday I had a breast MRI at Baylor in Irving. The scan itself wasn't too bad. The worst part was the IV they had trouble getting it into my veins. They tried my arm first, and were able to find a good vein, but they couldn't get the IV to go up into it good. They tried my hand and had the same problem. They ended up bringing someone else in who was finally able to get it into my arm. The IV was needed for the last scan which required some contrast dye. The only other issue we had was that my orders hadn't been sent to the right place when I went in to register. I should know the results later this week or next week.
Today, I have a consult with breast reconstruction doctor. I'm leaving my daughter with Barbara who used to watch her when she was a toddler. She's agreed to take her on a drop in basis, as needed, for $5/hr which really helps to relieve the worry of not having someone to watch her during my tests and procedures.
Today, I have a consult with breast reconstruction doctor. I'm leaving my daughter with Barbara who used to watch her when she was a toddler. She's agreed to take her on a drop in basis, as needed, for $5/hr which really helps to relieve the worry of not having someone to watch her during my tests and procedures.
Monday, June 8, 2009
More Phone Calls
On the phone all day again today. This morning I called MD Anderson and spoke to someone regarding my situation. They hooked me up with someone at their breast center (Nelly B Conelly Breast Center). I explained my situation to them and they said that would be feasible to get all the necessary visits done in a 5-7 day period. They checked and said that they had some appointments available the last week of June. They asked me to fax over my pathology report, insurance card and x-rays(????). I have the x-rays, but I haven't figured out exactly how to fax an x-ray yet. I was told to call the center than did the x-ray and they could do it.
I called Diagnostic Health where I had the x-rays done and they said there was no way they knew of to fax the x-rays. I asked about getting copies of my originals... They said they could give me copies of the ultrasounds, but had no way to copy the mammograms. I called back to the person I was supposed to fax the information to and left a message asking what she wanted me to do. She hasn't responded yet.
I received a call from Dr Jonathan Heistein's office. He is a plastic/reconstructive surgeon. They wanted to set up an appointment for a consultation on Wednesday. they will discuss my options should I choose to do unilateral or bilateral masectomy. Added this to my calendar.
Called North Hills Family practice and got Katie's camp physical set up. I had almost forgotten about this! She has to have it completed before she leaves for camp on Sunday. I also picked up a new swim suit and the dress up dress for her "glamour night" at her Glitz and Glam Girl Scout camp. I still need to go over her packing list and pick up a few things and get her packed and ready for camp.
I called Barbara, katie's old babysitter and asked her to help with child care during all these appointments. I'm trying not to put too much on anyone who is helping out. She said she's willing to do hourly drop ins for $5/hr. Nice to have her as a back up and know that I dont have to worry about getting that covered.
Went to the office where I have the genetics testing on Thursday to pick up my information packet. Spent an hour or so going through all that. Made some phone calls to gather information to fill the family history form that's required. The information was really eye opening. If this test comes back positive it can increase my risk of getting breast or ovarian cancer in the future (or a second occurance) significantly. Also, family members would have a 50% chance of carrying the mutated gene, and with it the increased chance for certain cancers.
I also went back to the breast surgeons office to pick up another copy of my pathology report. The last one had some of my personal information wrong on it and I wanted a copy with it fixed to fax to MD Anderson. When I got the copy, they had added some test results I hadn't seen before to the bottom. This is what was added:
Also asked them about filing a complaint due to my misdiagnosis. Hoping to get something done to prevent this from happening to me again or someone else. They gave me a resource that will check into the state laws and see if I have a case. If I have a case, they will contact me with legal referral.
Came home, too tired to cook. Went out to Luby's to get some dinner. Then came home and soaked in the jacuzzi tub for a bit. Started re-thinking MD Anderson. If I go there, katie wont be able to go to her swimming lessons. I really dont want to impact her life with this anymore than I have to. Not sure what to do about this yet. Maybe the local doctors would be good enough?
I called Diagnostic Health where I had the x-rays done and they said there was no way they knew of to fax the x-rays. I asked about getting copies of my originals... They said they could give me copies of the ultrasounds, but had no way to copy the mammograms. I called back to the person I was supposed to fax the information to and left a message asking what she wanted me to do. She hasn't responded yet.
I received a call from Dr Jonathan Heistein's office. He is a plastic/reconstructive surgeon. They wanted to set up an appointment for a consultation on Wednesday. they will discuss my options should I choose to do unilateral or bilateral masectomy. Added this to my calendar.
Called North Hills Family practice and got Katie's camp physical set up. I had almost forgotten about this! She has to have it completed before she leaves for camp on Sunday. I also picked up a new swim suit and the dress up dress for her "glamour night" at her Glitz and Glam Girl Scout camp. I still need to go over her packing list and pick up a few things and get her packed and ready for camp.
I called Barbara, katie's old babysitter and asked her to help with child care during all these appointments. I'm trying not to put too much on anyone who is helping out. She said she's willing to do hourly drop ins for $5/hr. Nice to have her as a back up and know that I dont have to worry about getting that covered.
Went to the office where I have the genetics testing on Thursday to pick up my information packet. Spent an hour or so going through all that. Made some phone calls to gather information to fill the family history form that's required. The information was really eye opening. If this test comes back positive it can increase my risk of getting breast or ovarian cancer in the future (or a second occurance) significantly. Also, family members would have a 50% chance of carrying the mutated gene, and with it the increased chance for certain cancers.
I also went back to the breast surgeons office to pick up another copy of my pathology report. The last one had some of my personal information wrong on it and I wanted a copy with it fixed to fax to MD Anderson. When I got the copy, they had added some test results I hadn't seen before to the bottom. This is what was added:
- Estrogen Receptor: 90% positive
- Progesterone Receptor: 75% positive
- Her-2 by IHC: No overexpression detected
- Her-2 by FISH: See separate report
- Ki-67: 30% Receptive
Also asked them about filing a complaint due to my misdiagnosis. Hoping to get something done to prevent this from happening to me again or someone else. They gave me a resource that will check into the state laws and see if I have a case. If I have a case, they will contact me with legal referral.
Came home, too tired to cook. Went out to Luby's to get some dinner. Then came home and soaked in the jacuzzi tub for a bit. Started re-thinking MD Anderson. If I go there, katie wont be able to go to her swimming lessons. I really dont want to impact her life with this anymore than I have to. Not sure what to do about this yet. Maybe the local doctors would be good enough?
Saturday, June 6, 2009
2nd Opinion Options
Spent some time today considering and researching second opinion options. I talked to several people, people who have had breast cancer, people in the medical field, and people at American Cancer Society. After looking at all the options, I've decided to try to get a second opinion from MD Anderson in Houston.
I know it's in Houston and a bit of an inconvenience, but we spoke to Jesse's sister and she has no problem with us staying with her for a week or so if we need to. I'm going to call them Monday and see if a week would be enough time to do whatever needs to be done to make an accurate second opinion. I really don't want to be gone longer than that. I also heard there is a chance it may be difficult to get in there. They are a world renowned cancer center and many people want treatment there. I don't plan to do treatment there at this time, but would value their opinion on my diagnosis and treatment. Information on MD Anderson can be found on their website which is located here.
If they are unable to take me in a reasonable period of time or I can't work out the specifics and get everything that needs to be done in that short of a period of time, I may go to Baylor or go with some of the recommendations I got from family/friends. I'm not sure yet which would be a better choice.
If any of you care to comment on which you'd go with and why, it would be appreciated. I just want to make sure that I get a second opinion I can trust and that it correlates with the opinion of the doctor I'm seeing now. I don't want to find out later down the road that something was overlooked, something was misdiagnosed, or that I had newer less extreme treatment options that were never mentioned.
I know it's in Houston and a bit of an inconvenience, but we spoke to Jesse's sister and she has no problem with us staying with her for a week or so if we need to. I'm going to call them Monday and see if a week would be enough time to do whatever needs to be done to make an accurate second opinion. I really don't want to be gone longer than that. I also heard there is a chance it may be difficult to get in there. They are a world renowned cancer center and many people want treatment there. I don't plan to do treatment there at this time, but would value their opinion on my diagnosis and treatment. Information on MD Anderson can be found on their website which is located here.
If they are unable to take me in a reasonable period of time or I can't work out the specifics and get everything that needs to be done in that short of a period of time, I may go to Baylor or go with some of the recommendations I got from family/friends. I'm not sure yet which would be a better choice.
If any of you care to comment on which you'd go with and why, it would be appreciated. I just want to make sure that I get a second opinion I can trust and that it correlates with the opinion of the doctor I'm seeing now. I don't want to find out later down the road that something was overlooked, something was misdiagnosed, or that I had newer less extreme treatment options that were never mentioned.
Does the Phone Ever Stop Ringing?
Yesterday I spent the entire day on the phone. All of the offices that I have tests at were calling to set up appointment times and get me pre-registered. I also had to make a few calls to family to get information and ask for help with my daughter next week while I'm at all these appointments. I think I was on the phone more yesterday than I have been the entire time I've had the phone!
I'm trying to keep all these appointments straight on my online calendar. Next weeks tests shouldn't be too invasive, but I'm not looking forward to having to go to a different office almost every day next week.
I also need to decide this weekend where to get a second opinion to verify the diagnosis and treatment options. I've had several recommendations from multiple sources. The nurse at Cancer Resources recommended MD Anderson in Houston or any local university cancer center. I asked about Baylor and she said that would be a good one. Another friend recommended a surgeon she liked in Plano. I also spoke with my brother who works at a hospital and he asked around and gave me several recommendations. I'm not sure which recommendation to go with.
I've never had a problem in my life making decisions. Most of the time I just pick something and go with it. If I was wrong, I could always deal with the consequences later and usually find a way to fix it. But when you are making decisions that could possibly effect your life (or at the very least your quality of life), it suddenly becomes more difficult.
I'm trying to keep all these appointments straight on my online calendar. Next weeks tests shouldn't be too invasive, but I'm not looking forward to having to go to a different office almost every day next week.
I also need to decide this weekend where to get a second opinion to verify the diagnosis and treatment options. I've had several recommendations from multiple sources. The nurse at Cancer Resources recommended MD Anderson in Houston or any local university cancer center. I asked about Baylor and she said that would be a good one. Another friend recommended a surgeon she liked in Plano. I also spoke with my brother who works at a hospital and he asked around and gave me several recommendations. I'm not sure which recommendation to go with.
I've never had a problem in my life making decisions. Most of the time I just pick something and go with it. If I was wrong, I could always deal with the consequences later and usually find a way to fix it. But when you are making decisions that could possibly effect your life (or at the very least your quality of life), it suddenly becomes more difficult.
Friday, June 5, 2009
Diagnosed with Invasive Ductal Carcinoma
Back in August 2008 I noticed a palpable lump in my right breast. I went into the gynecologist to have it checked out. They referred me for mammograms and ultrasounds. They advised me that the lump I felt was most likely a benign cyst and told me not to worry about it. However, they noticed several unusual looking spots on my left breast, and referred me to a breast surgeon to have these biopsied.
I went in a few weeks later and had the two cysts on my left breast biopsied using fine needle aspiration. The liquids were checked and both came back as benign.
The lump on my left breast was still there and continued to grow over the following months. It became rather large (you could feel about an inch or an inch and half of hard mass there). It bothered me some due the size and location, as it rubbed against my bra line. It wasn't that bad, so initially I wasn't too worried about it. Then I developed another small lump on my left breast in a different location, so I thought it might be a good idea to go get it checked out and get them both drained.
In order to do this, I had to go in and get another set of mammograms/ultrasounds. I decided to go to another doctor this time for the aspiration though. The last one was terrible! She was very unprofessional and had a bad bedside manner, so I asked my GYN to recommend another one. She referred me to Dr. Mary Brian.
I made an appointment with Dr. Brian on Wednesday June 3, 2009. It was supposed to be a consultation only, but after looking at the x-ray films, she decided to go ahead and drain the cysts that day. They drained the newer smaller cyst first with no problems. Then when they went to drain the larger original cyst, they found it could not be drained. It was a solid mass rather than a fluid filled cyst. She decided to take 3 biopsies of the tissue using core needle biopsy. The biopsy was not much fun, but they used a local anesthetic so it wasn't very painful during the procedure. After the procedure there was a lot of bleeding, so they had to tape me up. I have a bandage over it now that I can't remove until Monday where they made the incision. There is a little discomfort there, but it's tolerable.
The results from the core biopsy came back the next day around 2pm. The results confirmed that it was malignant and that I had a moderately invasive ductal carcinoma. There was also some cancer cells seen in the lymphatic vessels. They are not yet sure if it has actually reached the lymph nodes.
She went over the treatment course she recommended that same afternoon. It involves first doing some further tests to determine if the cancer has spread to other parts of my body (CT Scan/Whole Body Scan, MRI). She also wants me to do a test to see what the chances are of it recurring after treatment (Genetic testing for BRC1 gene). These should be completed in the next few weeks.
After that, I have to decide based on all the results, which option I would like to go with to remove the cancer. I have to either choose lumpectomy + radiation (where they take out just the lump area and a small margin of good cells around it) or unilateral or bilateral masectomy (where they take off one or both breasts) and possible radiation.
Lumpectomy is less invasive, but if you have a high risk of the cancer coming back, may not be the best option. Masectomy would lower my chances of it reoccuring in that breast or in bilateral, either breast, but is a more serious surgery that would require more healing time and reconstruction afterwards.
While they are in there doing either the lumpectomy or the massectomy, they are going to remove my sentinel lymph node. They will send this to a pathologist and have them look for cancer. The results of this will tell them if it has entered my lymphatic system. If it has, they will need to remove some of my lymph nodes in a separate surgery. They will also insert a port in my chest area while they are in there. The port will be used for direct access to my blood vessels for the chemo therapy.
Once the cancer is removed, by either method, they are recommending chemotherapy. This is the thing I'm really dreading the most. I've seen so many people go through this and they just look miserable. I hate to lose my hair and all that as well. I talked to some women on a breast cancer chat the other day though, and they gave me some options on where to get free wigs and some pretty funny stories of their mishaps with their wigs etc. So it made me feel a little better about this, but still really dreading it. They claim it is necessary due to the invasiveness of the cancer I have. Even if they dont find anything on the scans, there may possibly be cancer cells floating around in other parts of my body that haven't formed into tumors that could cause my cancer to return in the future.
The whole thing sounds pretty scarey initially, but after reading through all the facts and information, it appears that, although it is going to be is a not so fun experience, I have little to no risk of dying from this form and stage. I just have to do the things they tell me to do, deal with the pain, nausea, embarrassment and other side effects of it.
Before I start all this, I decided it would be a good idea to get a second opinion on the diagnosis and treatment plan. I wasn't sure how to go about it, so I contacted the local chapter of the American Cancer Society last night. They gave me some steps to take to do this. They also told me it is very normal for someone to request a second opinion when it comes to treatment this invasive, and that my doctor should not be insulted if I mention it. I hope this is true. I like this doctor so far and dont want her to think otherwise. I just feel like I need to be sure that I really do have this and that the treatment plan she chose is completely necessary. The first step was to call our health insurance provider and make sure that they would cover a second opinion. I had Jesse do that this morning.
When Jesse called to confirm coverage for the second opinion, they assured him it would be covered. They also transferred him to Cancer Resource Services. That is a benefit his employer offers to assist people going through cancer treatment. They are going to find me a doctor to consult with for my second opinion and should be calling me back to answer any questions and give me details. They also can provide a consult with an oncologist if I'd like to do that. I'd like for them to retest the core sample at another lab and provide me with their interpretation of the results (diagnosis) as well as what they'd recommend as a treatment plan so I can compare them.
If anything is different, I guess I will ask them why they recommend this or that or think the diagnosis is different so I can do some research and decide who I believe is right. If both come up the same, it will help to know that two doctors agree that this is what I have and what I need to do.
I believe I'm still somewhat in shock over all this. Two days ago, I was going in for a consultation to get a harmless cyst or two drained. Today, I have breast cancer and am facing surgery, radiation and chemotherapy. It's amazing how your life can change so suddenly in just a couple of days...
I went in a few weeks later and had the two cysts on my left breast biopsied using fine needle aspiration. The liquids were checked and both came back as benign.
The lump on my left breast was still there and continued to grow over the following months. It became rather large (you could feel about an inch or an inch and half of hard mass there). It bothered me some due the size and location, as it rubbed against my bra line. It wasn't that bad, so initially I wasn't too worried about it. Then I developed another small lump on my left breast in a different location, so I thought it might be a good idea to go get it checked out and get them both drained.
In order to do this, I had to go in and get another set of mammograms/ultrasounds. I decided to go to another doctor this time for the aspiration though. The last one was terrible! She was very unprofessional and had a bad bedside manner, so I asked my GYN to recommend another one. She referred me to Dr. Mary Brian.
I made an appointment with Dr. Brian on Wednesday June 3, 2009. It was supposed to be a consultation only, but after looking at the x-ray films, she decided to go ahead and drain the cysts that day. They drained the newer smaller cyst first with no problems. Then when they went to drain the larger original cyst, they found it could not be drained. It was a solid mass rather than a fluid filled cyst. She decided to take 3 biopsies of the tissue using core needle biopsy. The biopsy was not much fun, but they used a local anesthetic so it wasn't very painful during the procedure. After the procedure there was a lot of bleeding, so they had to tape me up. I have a bandage over it now that I can't remove until Monday where they made the incision. There is a little discomfort there, but it's tolerable.
The results from the core biopsy came back the next day around 2pm. The results confirmed that it was malignant and that I had a moderately invasive ductal carcinoma. There was also some cancer cells seen in the lymphatic vessels. They are not yet sure if it has actually reached the lymph nodes.
She went over the treatment course she recommended that same afternoon. It involves first doing some further tests to determine if the cancer has spread to other parts of my body (CT Scan/Whole Body Scan, MRI). She also wants me to do a test to see what the chances are of it recurring after treatment (Genetic testing for BRC1 gene). These should be completed in the next few weeks.
After that, I have to decide based on all the results, which option I would like to go with to remove the cancer. I have to either choose lumpectomy + radiation (where they take out just the lump area and a small margin of good cells around it) or unilateral or bilateral masectomy (where they take off one or both breasts) and possible radiation.
Lumpectomy is less invasive, but if you have a high risk of the cancer coming back, may not be the best option. Masectomy would lower my chances of it reoccuring in that breast or in bilateral, either breast, but is a more serious surgery that would require more healing time and reconstruction afterwards.
While they are in there doing either the lumpectomy or the massectomy, they are going to remove my sentinel lymph node. They will send this to a pathologist and have them look for cancer. The results of this will tell them if it has entered my lymphatic system. If it has, they will need to remove some of my lymph nodes in a separate surgery. They will also insert a port in my chest area while they are in there. The port will be used for direct access to my blood vessels for the chemo therapy.
Once the cancer is removed, by either method, they are recommending chemotherapy. This is the thing I'm really dreading the most. I've seen so many people go through this and they just look miserable. I hate to lose my hair and all that as well. I talked to some women on a breast cancer chat the other day though, and they gave me some options on where to get free wigs and some pretty funny stories of their mishaps with their wigs etc. So it made me feel a little better about this, but still really dreading it. They claim it is necessary due to the invasiveness of the cancer I have. Even if they dont find anything on the scans, there may possibly be cancer cells floating around in other parts of my body that haven't formed into tumors that could cause my cancer to return in the future.
The whole thing sounds pretty scarey initially, but after reading through all the facts and information, it appears that, although it is going to be is a not so fun experience, I have little to no risk of dying from this form and stage. I just have to do the things they tell me to do, deal with the pain, nausea, embarrassment and other side effects of it.
Before I start all this, I decided it would be a good idea to get a second opinion on the diagnosis and treatment plan. I wasn't sure how to go about it, so I contacted the local chapter of the American Cancer Society last night. They gave me some steps to take to do this. They also told me it is very normal for someone to request a second opinion when it comes to treatment this invasive, and that my doctor should not be insulted if I mention it. I hope this is true. I like this doctor so far and dont want her to think otherwise. I just feel like I need to be sure that I really do have this and that the treatment plan she chose is completely necessary. The first step was to call our health insurance provider and make sure that they would cover a second opinion. I had Jesse do that this morning.
When Jesse called to confirm coverage for the second opinion, they assured him it would be covered. They also transferred him to Cancer Resource Services. That is a benefit his employer offers to assist people going through cancer treatment. They are going to find me a doctor to consult with for my second opinion and should be calling me back to answer any questions and give me details. They also can provide a consult with an oncologist if I'd like to do that. I'd like for them to retest the core sample at another lab and provide me with their interpretation of the results (diagnosis) as well as what they'd recommend as a treatment plan so I can compare them.
If anything is different, I guess I will ask them why they recommend this or that or think the diagnosis is different so I can do some research and decide who I believe is right. If both come up the same, it will help to know that two doctors agree that this is what I have and what I need to do.
I believe I'm still somewhat in shock over all this. Two days ago, I was going in for a consultation to get a harmless cyst or two drained. Today, I have breast cancer and am facing surgery, radiation and chemotherapy. It's amazing how your life can change so suddenly in just a couple of days...
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