I just received my MRI results. The tumor has shrunk significantly. They said the first time it was so large and merged into my normal cells they weren't able to measure accurately on MRI, but this time they were actually able to differentiate the tumor from the normal breast tissue and it's down to 1.2cm x 1.3cm x 1.3. I know on the last ultrasound it was around 2.1 cm x 1. something... so I'm pretty sure they are accurate on this one.
Anyhow, good news today. This also buys me some time to make decisions on the surgery. I will have one more Taxol Thursday, lab only next Thursday(Yay! a week off with no chemo!), then start my FEC (5Fluorouracil, Epirubicin and Cyclophosphamide) chemo the following Thursday.
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, September 29, 2009
Monday, September 28, 2009
MRI Results
Just talked to a nurse at Dr. Krekow's office (my oncologist). I'm not going to have MRI results until late Tuesday or early Wednesday. The waiting is going to drive me insane!
Also, haven't heard nothing back from either of the two people at MD Anderson who were supposed to be looking into my question. However, I did receive a phone call from a Patient Navigator at the American Cancer Society. She told me to call her tomorrow if I didn't receive the call backs I expected today. She is not sure what she can do, but is willing to try to advocate on my behalf.
Also, haven't heard nothing back from either of the two people at MD Anderson who were supposed to be looking into my question. However, I did receive a phone call from a Patient Navigator at the American Cancer Society. She told me to call her tomorrow if I didn't receive the call backs I expected today. She is not sure what she can do, but is willing to try to advocate on my behalf.
Thursday, September 24, 2009
More Frustration at MD Anderson
Here's a log of the last week and 1/2 I've been fighting to try to get a simple answer to the question: "Do the radiologists at MD Anderson feel they can effectively screen me after lumpectomy?"
9-14-2009
Called and spoke to someone in screening department at MDA. They told me I had to go through my primary doctor out there, which is my oncologist Dr. Pusztai.
Called and spoke with Gina Garcia, Dr. Pusztai's nurse. She said to send an email using my.mdanderson.org to Dr. Pusztai explaining in detail what I was requesting.
Sent email to Dr. Pusztai, return receipt.
9-18-2009
Received a call from Gina Garcia saying that Dr. Pusztai had read the email and agreed that they couldn't help me with this unless I came in and made an appointment with Dr. Pusztai. Explained to her that I was currently in weekly chemo treatments locally and that I only had a week to make a decision. She sent me back to screening.
Called my patient advocate at MD Anderson Sonya Tucker and left a voice mail explaining my situation.
Received return receipt for email AFTER phone call with Gina Garcia
9-21-2009
Called Sonya Tucker again, since I hadn't received a return phone call. Someone paged her and I was able to speak with her directly. She said she would take care of the problem by emailing radiologists and speaking with Dr. Pusztai's office. She said she would call back on 9-22-2009.
9-22-2009
Waited for call from Sonya Tucker. Did not receive a call.
9-23-2009
Frustrated and fed up, I asked Jesse to advocate for me. He called back to advocacy office and spoke with someone named Luz. She said she would make sure Sonya Tucker called us back.
9-24-2009
Received phone call from Theresa. She said to call my breast surgeon's office (Dr. Fieg) and speak with his nurse Tina Miller.
Jesse called back to advocacy office and spoke with Luz again. She said she would have Sonya Tucker's supervisor, Michelle Walker call us back.
Called American Cancer Society and asked if they had any external advocates who help with this type of situation. They said they would have a patient navigator call me back in 1-2 days to see if they had any ideas.
Called Dr. Fieg's nurse, Tina Miller. She said she would email radiologist who read the diagnostic mammograms and ultrasounds I had done in August and see if she could get an opinion from them. She says she will call back in 1-2 days.
Received another call from Michelle Walker. She was trying to get me to come in next week to discuss all this. I explained to her that I can't. That I didn't feel it was necessary since I'd already consulted with a breast surgeon while there. She seemed to think I needed a consult to discuss my surgical options again. I told her I was well researched and understood my options, and that I had already consulted with a breast surgeon down there already. I told her to think of it as a post office visit question. I also told her if it was a matter of money, I'd pay for an office visit. At the end of the call she said she'd try her hardest to get me an answer. Hopefully she will...
9/28/2009
Received a phone call from Maegan Jansen, Patient Navigator at American Cancer Society. She said if I don't receive a call back from Tina Miller or Michelle Walker today, to call her and she will try to advocate for me.
Getting really frustrated with this! I have MRI on Friday, should have results on Monday, and if it hasn't shrunk I have to make a decision regarding surgery. Without this information, I really don't feel I can make a well informed decision. Why would a cancer center, KNOWING you are already going through a difficult time, make getting such a simple question answered so difficult?
9-14-2009
Called and spoke to someone in screening department at MDA. They told me I had to go through my primary doctor out there, which is my oncologist Dr. Pusztai.
Called and spoke with Gina Garcia, Dr. Pusztai's nurse. She said to send an email using my.mdanderson.org to Dr. Pusztai explaining in detail what I was requesting.
Sent email to Dr. Pusztai, return receipt.
9-18-2009
Received a call from Gina Garcia saying that Dr. Pusztai had read the email and agreed that they couldn't help me with this unless I came in and made an appointment with Dr. Pusztai. Explained to her that I was currently in weekly chemo treatments locally and that I only had a week to make a decision. She sent me back to screening.
Called my patient advocate at MD Anderson Sonya Tucker and left a voice mail explaining my situation.
Received return receipt for email AFTER phone call with Gina Garcia
9-21-2009
Called Sonya Tucker again, since I hadn't received a return phone call. Someone paged her and I was able to speak with her directly. She said she would take care of the problem by emailing radiologists and speaking with Dr. Pusztai's office. She said she would call back on 9-22-2009.
9-22-2009
Waited for call from Sonya Tucker. Did not receive a call.
9-23-2009
Frustrated and fed up, I asked Jesse to advocate for me. He called back to advocacy office and spoke with someone named Luz. She said she would make sure Sonya Tucker called us back.
9-24-2009
Received phone call from Theresa. She said to call my breast surgeon's office (Dr. Fieg) and speak with his nurse Tina Miller.
Jesse called back to advocacy office and spoke with Luz again. She said she would have Sonya Tucker's supervisor, Michelle Walker call us back.
Called American Cancer Society and asked if they had any external advocates who help with this type of situation. They said they would have a patient navigator call me back in 1-2 days to see if they had any ideas.
Called Dr. Fieg's nurse, Tina Miller. She said she would email radiologist who read the diagnostic mammograms and ultrasounds I had done in August and see if she could get an opinion from them. She says she will call back in 1-2 days.
Received another call from Michelle Walker. She was trying to get me to come in next week to discuss all this. I explained to her that I can't. That I didn't feel it was necessary since I'd already consulted with a breast surgeon while there. She seemed to think I needed a consult to discuss my surgical options again. I told her I was well researched and understood my options, and that I had already consulted with a breast surgeon down there already. I told her to think of it as a post office visit question. I also told her if it was a matter of money, I'd pay for an office visit. At the end of the call she said she'd try her hardest to get me an answer. Hopefully she will...
9/28/2009
Received a phone call from Maegan Jansen, Patient Navigator at American Cancer Society. She said if I don't receive a call back from Tina Miller or Michelle Walker today, to call her and she will try to advocate for me.
Getting really frustrated with this! I have MRI on Friday, should have results on Monday, and if it hasn't shrunk I have to make a decision regarding surgery. Without this information, I really don't feel I can make a well informed decision. Why would a cancer center, KNOWING you are already going through a difficult time, make getting such a simple question answered so difficult?
Tuesday, September 22, 2009
MRI
MRI is scheduled for Friday. I should know if the chemo has shrunk the tumor by next week. Again, for those who haven't been reading, if the tumor has shrunk or stayed the same, I'll continue with second round of chemo called FEC. FEC is a combination of three drugs: 5Fluorouracil, Epirubicin and Cyclophosphamide, each with their own side effects. I will have the treatments once every 3 weeks. Symptoms may be more severe.
On the other hand, if the tumor hasn't shrunk, the oncologist thinks I should have surgery. Although I understand her point of view on this, I'm a little apprehensive to do this prior to the second round of chemo. If the tumor is gone, the only way to measure, the second round of chemo's effectivenes, is to wait and see if the cancer comes back.
On the other hand, if the tumor hasn't shrunk, the oncologist thinks I should have surgery. Although I understand her point of view on this, I'm a little apprehensive to do this prior to the second round of chemo. If the tumor is gone, the only way to measure, the second round of chemo's effectivenes, is to wait and see if the cancer comes back.
Monday, September 21, 2009
Advocate on the Case
Called today and spoke with the Advocate at MDA. She is going to try to email a radiologist or go through Dr. Feig's office (the breast surgeon I saw when I was down there in August). Hopefully she'll be able to get the answers I seek.
Still Waiting
I called and left that message last week for the advocate at MDA. I stilled haven't received a return call. Also, although the nurse at Dr. Pusztai's office claimed that Dr. Pusztai had read my email and said the same thing, I didn't receive the return receipt on it until a day later. If I don't hear back from the advocate today, I guess I'll have to find another way to make some noise.
Saturday, September 19, 2009
Thursday, September 17, 2009
No News Would Have Been Better News
Checked message responses on mymdanderson.org and no response yet from the oncologist. I talked to my oncologist when I went in for chemo today and she said I should wait until after they do the MRI to determine if the tumor has shrunk or not before I make my decision. She also said if I just can't make up my mind, I can always start with the lumpectomy and later decide to do the mastectomy, but I can't do it the other way, so ...
Scratch that.. In the middle of typing this blog entry, I received a phone call from the oncology nurse at MD Anderson. She said that Dr. Pusztai, my oncologist, had read the email I sent and that he said the same thing she did. I would have to make an appointment with him. I explained that, I was currently receiving weekly taxol treatments and that would be impossible. I also explained that I needed to make a decision before the treatments ended. I also explained that I didn't need a consult with an oncologist, I needed to talk to a radiologist, preferably one that would be involved with screening me. She told me that she could not set that up for me. I would need to talk to the screening department. She sent me back to where I started. How frustrating is that? By the time I calmed down enough to take action, it was after 5pm. I went ahead and left a message for my advocate at MD Anderson, Sonja Tucker. Now, I'm waiting for a call from her. Hopefully, I will hear from her in the next few days and she can get this cleared up.
In other news, I received my hats and scarves from www.tlcdirect.org that Christine ordered for me. They are awesome! Thank you Christine! I especially love the scarf. I never thought I'd be a scarf person, but it's so comfortable to wear around the house. I even got brave today and wore it out, in sort of a gypsy style, with big earrings.
Yesterday, I started working on adding some human hair to hats. I picked up the hair fairly cheaply at a little beauty supply in east Fort Worth. It came on a roll, and I believe it is normally what is used to do weaves. My mother gave me some assistance on figuring out the best way to approach this. We spent several hours lining a hat that was scratchy, fighting a cheap sewing machine, and whip stitching some hair into another hat(which will still need one more layer of hair to not look too thin). Thanks Mom! Below are a few pictures showing how it was done and how it looks on me.
Inside Hat
Stitching Detail
Scratch that.. In the middle of typing this blog entry, I received a phone call from the oncology nurse at MD Anderson. She said that Dr. Pusztai, my oncologist, had read the email I sent and that he said the same thing she did. I would have to make an appointment with him. I explained that, I was currently receiving weekly taxol treatments and that would be impossible. I also explained that I needed to make a decision before the treatments ended. I also explained that I didn't need a consult with an oncologist, I needed to talk to a radiologist, preferably one that would be involved with screening me. She told me that she could not set that up for me. I would need to talk to the screening department. She sent me back to where I started. How frustrating is that? By the time I calmed down enough to take action, it was after 5pm. I went ahead and left a message for my advocate at MD Anderson, Sonja Tucker. Now, I'm waiting for a call from her. Hopefully, I will hear from her in the next few days and she can get this cleared up.
In other news, I received my hats and scarves from www.tlcdirect.org that Christine ordered for me. They are awesome! Thank you Christine! I especially love the scarf. I never thought I'd be a scarf person, but it's so comfortable to wear around the house. I even got brave today and wore it out, in sort of a gypsy style, with big earrings.
Yesterday, I started working on adding some human hair to hats. I picked up the hair fairly cheaply at a little beauty supply in east Fort Worth. It came on a roll, and I believe it is normally what is used to do weaves. My mother gave me some assistance on figuring out the best way to approach this. We spent several hours lining a hat that was scratchy, fighting a cheap sewing machine, and whip stitching some hair into another hat(which will still need one more layer of hair to not look too thin). Thanks Mom! Below are a few pictures showing how it was done and how it looks on me.
Inside Hat
Stitching Detail
Wednesday, September 16, 2009
Navigating Bureaucracy at MDA
MD Anderson has to be the most frustrating health care system I've ever had to deal with. You make a phone call to try to obtain something as simple as an answer to a question, and they send you from person to person. You have to be VERY persistent, even if you go to an advocate, to get an answer. Here is a copy of an email I was told to write, after attempting to get my question answered by two different people.
| Date: | 09/16/2009 08:15:11 AM |
| To: | Dr. Pusztai Clinical |
| From: | TOWNSEND, AMY |
| Subject: | Screening |
| Message: | I called the screening department to talk to a radiologist there at MD Anderson, to find out if they thought that I could be effectively screened following lumpectomy. The nurse there called me back and said I could not talk directly to a radiologist. She said I had to go through your office and have someone in your office contact a radiologist and request this information for me. I called your office and spoke with Gina Garcia. She said that I should send an email with my specific question, so here is my question: I am reconsidering lumpectomy as an option for surgery after consulting with Dr. Feig and several plastic surgeons, including one at MD Anderson, and finding out that my reconstruction options after mastectomy would be severely limited. My concern is that after surgery I will not be able to be effectively screened for a local recurrence due to the density of my breasts. Since I was misdiagnosed here by our local screening facility, I would not feel confident returning to them, so I am interested in having my post surgery screenings done there at MD Anderson. In order to make an educated decision (regarding the type of surgery I have), I am seeking the opinion of a radiologist(or radiologists) there at MD Anderson as to whether they feel they could effectively screen me. I know that mammograms and ultrasounds are not a perfect science, but I am wanting to know if they feel they could, with some accuracy, screen me effectively. I had a mammogram and an ultrasound done at MD Anderson in August. If one of them could take a look at my films and offer an opinion it would greatly assist me in making my decision. It was mentioned to me that I might have to come down there. This is not an option at the moment, as I am currently doing weekly Taxol treatments. In 3 weeks they will be complete. At the end of the treatments, an MRI will be done to determine if my tumor has shrunk. If it has not shrunk, my oncologist here is recommending surgery. I need to make the decision before then so I can get the surgery scheduled. Anything you can do to assist with this would be greatly appreciated. Thanks, Amy Townsend |
Thursday, September 10, 2009
Dallas Morning News Article
If anyone is interested in seeing the Dallas Morning News article I am in, it will run Sunday, September 20th. It will be in the paper as well as online. When I find it online I will post the link.
Lack of Government Support on Cancer Prevention
I've been reading a book called "The Secret History of Cancer" that really goes into detail about how much our government is aware of but not sharing. In 1936 a conference was held where carcinogens like asbestos, smoking, and workplace related chemicals were discussed. Many of these were not banned for decades, and some are still in use. Some that are still in use are detailed in the linked report. It's pretty much impossible to avoid all these things. The only thing that is going to make a difference is for government to ban them and force the companies to find alternatives. Many of the items in the report are banned in the UK and other countries, but not in ours. North America has the highest breast cancer rate of all countries. Wonder why?
This report is lengthy, but worth skimming through:
http://www.bcaction.org/PDF/StateofEvidence.pdf
This report is lengthy, but worth skimming through:
http://www.bcaction.org/PDF/StateofEvidence.pdf
Friday, September 4, 2009
8 Down 4 to Go
Finished my 8th chemo treatment yesterday with a photographer from the Dallas Morning News in tow. A Dallas Morning News photographer you ask? Yes, a Dallas Morning News photographer went with us to chemo yesterday. Here's how it came about:
Back in July when I found out Jesse was going to be laid off, I called the American Cancer Society and spoke to an insurance advocate regarding our options. I wanted to know that we would be ok and would have insurance no matter what. I was concerned about what would happen if we could not afford the cobra and wanted to find out more information on the lapse in insurance and pre-existing condition clauses. Last week, she called and said that she had received a call from the Dallas Morning News requesting to talk to patients who had cancer in the DFW area and had faced difficult financial situations such as ours. She asked if I minded if she gave the reporter my contact information. I agreed to it, and the reporter called me. I spoke with him, answered some questions and he initially said a photographer would be out last Friday. Well, the photographer didn't show or call and I thought it was a dud deal. But, Monday the reporter called back and told me they were still interested in doing my story and that a photographer would be calling me. She called me Wednesday and asked if I minded if she came before chemo, followed me to chemo and videoed and photographed the entire process. I agreed to it.
She showed up Thursday around noon. We spoke for a while and she was very nice. She rode along with us in the car and asked questions while we drove. At the chemo office, they made me sign a special release. She followed me into the lab room for my labwork and then into the infusion room. Once in the infusion room, we tried sitting in the normal seating, but due to HIPAA privacy laws, they moved us to a special room. Anyhow, it helped pass the time at chemo as she asked both of us more questions and videoed.
After we got home, she talked to my daughter some and asked some more questions. She also took video of my shelf where I keep all the things my chemo angels and others have sent me. She told me the article should run in about 2 weeks and they would be in touch with me to tell me when. It will be in the paper as well as on the website, which is located here: http://www.dallasnews.com/ If you take the paper or check the website regularly and see it, and I haven't posted that I was told, please let me know.
Oh, and for those that are wondering, I decided to just go with a hat on. I didn't think I could handle dealing with that dang itchy wig during chemo, especially with a photographer there. I think I looked pretty good.. at least I hope so!
Back in July when I found out Jesse was going to be laid off, I called the American Cancer Society and spoke to an insurance advocate regarding our options. I wanted to know that we would be ok and would have insurance no matter what. I was concerned about what would happen if we could not afford the cobra and wanted to find out more information on the lapse in insurance and pre-existing condition clauses. Last week, she called and said that she had received a call from the Dallas Morning News requesting to talk to patients who had cancer in the DFW area and had faced difficult financial situations such as ours. She asked if I minded if she gave the reporter my contact information. I agreed to it, and the reporter called me. I spoke with him, answered some questions and he initially said a photographer would be out last Friday. Well, the photographer didn't show or call and I thought it was a dud deal. But, Monday the reporter called back and told me they were still interested in doing my story and that a photographer would be calling me. She called me Wednesday and asked if I minded if she came before chemo, followed me to chemo and videoed and photographed the entire process. I agreed to it.
She showed up Thursday around noon. We spoke for a while and she was very nice. She rode along with us in the car and asked questions while we drove. At the chemo office, they made me sign a special release. She followed me into the lab room for my labwork and then into the infusion room. Once in the infusion room, we tried sitting in the normal seating, but due to HIPAA privacy laws, they moved us to a special room. Anyhow, it helped pass the time at chemo as she asked both of us more questions and videoed.
After we got home, she talked to my daughter some and asked some more questions. She also took video of my shelf where I keep all the things my chemo angels and others have sent me. She told me the article should run in about 2 weeks and they would be in touch with me to tell me when. It will be in the paper as well as on the website, which is located here: http://www.dallasnews.com/ If you take the paper or check the website regularly and see it, and I haven't posted that I was told, please let me know.
Oh, and for those that are wondering, I decided to just go with a hat on. I didn't think I could handle dealing with that dang itchy wig during chemo, especially with a photographer there. I think I looked pretty good.. at least I hope so!
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