Radiation for Spine Bone Mets Pain

Had some major pain the other day and it hasn’t gone away.  They say it’s due to the spine metastasis.   They say the only thing that is going to help is radiation, so I went in to get set up for neck/shoulder radiation on Wednesday.  It was kind of a weird process.  They have to create a mask and attach you to the table so your head and neck are in the same position each time.  This is to ensure the radiation is delivered to the exact same spot every time.  There is a good article with a picture in it located here:

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Heading back home

On the way back from Houston. Only a few things new to report.

The breast oncologist at MD Anderson recommended a pill form chemo drug called Xeloda, and an injection or short infusion drug for bone metastasis, xgeva/zoledronic.  They said I will stay on these drugs as long as they appear to be working.

They did not have any major clinical trials for my specific situation at this time, but asked if I would allow an additional core biopsy of one of the tumors be conducted, in the near future, for a research study they are doing on the genes of these types of tumors.  I agreed to participate.  I'm willing to do anything I can to help with research.

On the road again

Heading down to Houston this morning.  I have a breast oncologist appointment at MD Anderson on Monday.  I have two new masses to report since my last oncology visit locally.  One on the other breast and one between my neck and shoulder.

Fortune cookie

Two really good fortune cookies at the restaurant today

Living With Cancer

Someone posted a slideshow of some pictures from someones life during cancer and it inspired me.

I had it embedded, but it only showed 15 slides....so go to the link and see the full thing.

 

http://www.photosnack.com/my-slideshows/details/phkiqc1x?jsalbum=1#

Cancer in Pictures

Not much I can say other than I pretty much refused to let many pictures be taken of me during my fight.  I think this time I'd like to have few to leave behind.  Maybe these will make people get their mammograms and verify those lumps.  Very emotional.. have a kleenex ready.


http://www.viralnova.com/wifes-cancer/

Sometimes it's good to be wrong

Ok, I made a call to the American Cancer Society to verify some of the conclusions I had drawn.  Even though I did find some information regarding pan cytokeratin (aka pankeratin) and basal cell subtype, this might not necessarily indicate the subtype on this preliminary report, but rather have been used to confirm the adenocarcinoma.  When you get into this level of pathology the unknowns throw you sometimes.  I definitely am hoping to have drawn the wrong conclusion and will know for sure after talking with the Breast Oncologist at MD Anderson on Monday. 

So at this point, let's just stick to what appears to be the known facts that have been proven via biopsy:

• Fine Needle Aspiration (FNA) confirmed breast tumor on same breast, opposite side, ductal type carcinoma
• Fine Needle Aspiration (FNA) confirmed scalp tumor, adenocarcinoma (no confirmation on type)
• Both biopsies are Grade 3 (agressive) and poorly differentiated

Grey areas:

• Assuming the unknown adenocarcinoma on the scalp is most likely metastasis from the breast tumor.
• Assuming this is a recurrence of the original invasive ductal carcinoma I had in 2009.
• Assuming the ER/PR status is the same on both tumors, but until I see the report, no way to confirm.  Nurse at MD Anderson confirms ER/PR status is positive, but for one or both, she was not sure.
• Local oncologist says it is a recurrence in the breast with scalp metastasis and possible spine (neck area) and liver metastasis (both unconfirmed by show on films)

Guesses from reading pubmed articles, research studies, and other scholarly resource articles, that may or may not factor into the equation:

• Basal like cell carcinomas tend to be positive for pan cytokeratin 
• Basal like cell carincoma subtype may cancel out ER/PR positive benefit
• Spine and liver metastasis indicate poorer prognosis

There... I like being wrong when it's in my favor!  Still not a great prognosis, but definitely looking better than the one I was suspecting.  I did this more for my benefit than for any other reason.  I needed to sort all this out into neat little groups to get it straight my own head. 

The information contained here gets pretty deep into some of the pathology crap I've taken the time to educate myself on in order to better understand what the information from the tests is telling me. Please don't feel bad if you are lost by the jargon.  When I have the information confirmed I'll post it and explain in regular terms what it means.

Cytokeratine Positive, BUT...

Most likely good news!
Basal like cells, BUT...

ER/PR POSITIVE!!!!

Even though the biopsy results indicate Basal like cells (due to the staining coming back as cytokeratine positive), which is usually triple negative, I have just confirmed the results from MD Anderson saying that my tumors are ER/PR positive. I do not have a copy of the official report yet, but the nurse and MD Anderson confirmed it verbally over the phone.  Again I have defied the odds it appears by getting an ER/PR positive status on a basal like cell subtype.

This means that the tumors will most likely respond to not only chemotherapy, but also to Endocrine therapy.  Having more drugs that it will respond to gives you more treatment options and longevity because you have more treatment options available to you. Additionally, ER/PR positive is usually less aggressive and has longer remission periods and a better prognosis. 

I haven't researched the ER/PR positive thoroughly to see if the basal subtype negates the good part of ER/PR positive, but I'm definitely sure it's better than ER/PR negative of any subtype.  I asked both the local oncologist's nurse and the MD Anderson nurse and neither seemed to know.  I'll do some research online and let you know what I find.

But YAY!  Not a cure, but definitely a ray of hope!

Preliminary Biopsy Reports Showed Up

I logged into MD Anderson this morning and the preliminary biopsy reports were posted.  There was only one thing, the subtype, that was included that was not told to me previously.  No ER/PR or HER2 status were indicated, but it’s most likely what they call “Triple Negative” which means ER/PR negative and HER2 negative based on the subtype.  Here is the text from the initial biopsy.  I’m sure there will be more information in the future indicating ER/PR and HER status more specifically.

 

SPECIMEN SOURCE

A. Soft tissue, right superior ear, FNA

GROSS DESCRIPTION

0.66 x 0.66 x 0.49 cm nodule

Immediate assessment for specimen adequacy was made (×1).

DIAGNOSIS

POORLY DIFFERENTIATED ADENOCARCINOMA (see comment)

COMMENT

Immunostain performed on a smear show the tumor cells to be positive for pan-cytokeratin. The finding supports the above diagnosis.

Control is appropriate.

 

 

Adenocarcinoma is simply the grouping invasive ductal carcinoma falls under.  It will probably be more clearly defined on the final report.  Testing positive for Pan-Cytokeratin, from my research, appears to indicate the tumor is a basal-like cell and most likely triple negative.  Here is a link for you to understand better what basal-like breast cancer subtype means:

 

 

http://ww5.komen.org/BreastCancer/SubtypesofBreastCancer.html

 

#END

My Amazing Support Network

Every day I am so amazed by the support I am getting from everyone both at work and at home.  I think it's true that you don't know who really cares about you until you go through something like this.  The ones who don't really care about you will disappear when a crisis occurs and often reappear when it's passed. I can attest to the truth of this concept first hand.  I lost a few friends through my first two cancer episodes.  It hurt initially, but looking back I believe it was preparing me for this - the last and biggest fight I'll ever experience.  Their true colors have shown and they are not here to make me feel bad.  I am instead surrounded by a network of friends who seem to get more involved in my life when I have a crisis!  How wonderful is that?

I want to thank my wonderful husband.  He's been there every step of the way through all of this.  I honestly could not have made it this far without him.  He tells me I'm beautiful all the time despite my scars and deformaties from past surgeries.  He is there by my side every time he can be and goes insane when he can't be there due to other obligations.  He listens to me rant and makes sure my prescriptions get filled.  He does all the dirty work behind the scenes that no one really sees.  He even helps with the yucky stuff like drains after surgery!   My husband is an amazing man and I am grateful for him every day.

Jesse has a friend down in Pearland who opens his home to us every time we come down for tests or treatment at MDA.  Chris has gone so far as to give us a key and let us stay even when he is not there.  When he is there, he is a wonderful host.  His entire family has been amazing.  His mother made me a pad to use in the car while driving back up after surgery.  His daughter had a crab boil one time when we were down there.  His youngest son entertained us on the back porch swing and rode 4 wheelers with Katie.  Without the use of his home, the cost of care down there would be a lot higher.  Thank you for treating us like family and opening your home.

Next is my mother.  When no one was else was able to go down to MD Anderson during the Sarcoma period, she was there.  She took precious vacation days off to make the trip.  She also helps us by taking Katie to school on the days Jesse has to work and she takes care of our pets while we are in Houston.  She lets me call and vent when I get frustrated with my doctors and she does whatever she can to be supportive.  She has also gone to appointments here with me when Jesse is unable to get off work or short on paid vacation days.  Thank you for being there, mom!

I'm really thankful for my manager at work and the things she has done to make this easier for me and allow me to continue to work without long periods of absence.   Without me even asking, she has arranged for me to be able to work from home.  I will still keep my cube at work and can come in when I feel up to it, but I won't be obligated and can work here on the couch in my pajamas on those post chemo days when I'm not feeling well enough to drag myself out.  If this wasn't enough, she went one step further and spoke with Jesse's manager at work (we work at the same place) and asked if it would be possible for him to also work from home when necessary so that he could be here to take care of me.

Another manager at work came by and told me him and his church were praying for me.  He asked if I would mind if he put together some kind of fund raising effort to try to come up with some funds to help when the medical expenses start to pile up.  How amazing is that?

I came home to find a care package one day from my step mother.  It contained a book about "what cancer can't do", a pen, a card, and beautiful cross with the pink ribbon in the center.  She's also volunteered to help in any way she can with Katie.  She said they will keep her any time I need to go to Houston and even offered to pick her up on the days I normally would to make things easier for me! 

My dad has smoked brisket, hot links, chicken, and ribs this week for us to help out and save me from having to cook.  My step mother has brought these over both times right off the grill and still warm enough to eat.  They were awesome and are all gone!  I never was a big fan of these items, but these were really good! My dad is also paying to have Katie's DNA analyzed.  This may give us clues in the future and help Katie avoid being the 3rd female in my dad's line to have metastatic breast cancer.  I do not have the BRCA1 or BRCA2 gene, but perhaps there is another gene they will find in the future that will link my case to my dad's biological mother.  If so, Katie's DNA will be out there and she will be alerted by 23andme of the discovery. Perhaps knowing this information will offer prevention, screening, or more targeted treatment options for her.

A friend I've had since elementary school invited me to go to the new Perot Museum in Dallas today.  I went with her and had a blast. By the time we got done, I'd almost forgot I had all this going on.  Things just seemed like old times again! I'm thankful for those who distract me from my disease and give me these fun experiences. It means a lot more to me than you'll ever know.  The gift of time and being in there in the moment with someone is one of the most valuable gifts you can ever give someone.  She also took the time to listen to me rant when I was frustrated and then checked up to see if I was ok the next day! Kim you are awesome!

Then there is my manager, again, and the vendor we do computer support for who got together and arranged for me to have a full hour on a flight simulator.  I support a flight safety school where the airline pilots go for required training.  Use of one of these machines typically costs $1500/hr.  Jesse and I will be going Monday morning.  An instructor will meet us and we get to try to fly a PC12 aircraft (picture below).  I'm thankful for not only the manager who worked this out for me but the desktop lead with Compucom, the FlightSafety International representative who I work with regularly, the instructor that volunteered to give me the lesson, and FlightSafety International for letting me tie up a $1500/hr machine for an hour.  I look forward to this on Monday!

Last, but definitely not least, are those of you who have read and commented on my Facebook posts or private messaged me to make sure I am doing ok.  I actually do feel better when I have the opportunity to talk about things.  I have a lot on my mind and sometimes it helps to just discuss it with someone to get it straight in my own head. 

Cancer can be a very lonely disease.  You can feel like you are alone despite all the people around you.  I know it's hard to know what to say or not say and people often do not know how to even start the conversation.  I've been on both sides, remember?  I was also once scared to talk to people about these things!  I feel terrible about letting my discomfort stop me now.  I wish I had made the effort, but I didn't know how much it would have meant.  I'm giving you the opportunity to know pre-cancer (hint, hint).  Most people with these types of things going on (I won't say all because every one is different) like to talk about it.  Pre-cancer diagnosis, I was always worried I'd do or say something inappropriate and leave the person worse off than if I had said nothing. Now that I'm on the other side, I realize it's the silence and avoidance that hurts the person much more than ANYTHING you could ever say. So put on your big girl panties, get out of your comfort zone and say hello to that person you know who has cancer!

I am so lucky to have you all.  Feel free to say hello or ask questions about things I have going on.  I may get emotional sometimes, but it's a good thing and helps me to get it out.  If you don't like to talk online, let me know and I'll send you my phone number(if you don't already have it).

Also, please, watch what you say that will be visible or audible to Katie.  I am waiting a bit longer until I have a little more of a game plan before going into what this cancer diagnosis means.  She knows the cancer is back and there will be treatment in the near future and that is all I've really told her so far.  Here in the next few weeks, after we have a better game plan, I plan to sit down and fully explain it all to her.  Please let me be the one to do it.  It could be very harmful for her get the information second hand.

I want all of you to know that if at any time the whole thing gets overwhelming for you, I'm still here.  Cancer does not change who a person is and make them automatically someone you cannot go to.  I will still be here for you.  If you need to cry or aren't handling the news well, talk to me.  Maybe we can cry together!  It might help us both!  Yeah yeah... I'm going through a bunch right now, but I always have time for my family and friends.  Even if I have to drag you along to a treatment session to do it! 

Everyone hang in there.  We'll get through this a day at a time.  Here's something for you to read if you want more information.  Great brochure from a group called METAvivor:
 http://mbcn.org/images/uploads/LBBCGuideMBCNewlyDiagnosed12.pdf

So Here We Go Again

So here we go again.  The cancer is back.  This time, with a vengeance.  The consultation with my local oncologist on Wednesday confirmed what I had already deduced from the reports - Stage IV Metastatic Breast Cancer. It's managed to come back and invade multiple parts of my body.  All is fairly small at the moment, but it's there and it's everywhere.  It's in my liver, my spine, and on my scalp.  And this time, it's here to stay.

For those of you who are unaware, stage IV breast cancer is currently incurable.  The best you can hope to achieve is a long period of remission.  The treatment focuses on prolonging of life.  They give you a chemo treatment or a hormonal treatment (if you are ER/PR positive) or a targeted therapy (if you are HER2/NEU positive) for a short period of time and check to see if it's working.  If it is shrinking the tumors, they continue for a while, then stop and wait for it to come back. If it isn't working, they stop and switch to a new drug. 
 Your life expectancy, or prognosis, is dependent on the number of drugs you are responsive to and the periods of remission it provides.  Surgery is fairly pointless because even if they removed everything they could see, there's still more in your lymph nodes, blood stream, and most likely other areas that just haven't shown up yet.

I know it's a lot to absorb and probably doesn't make a lot of sense to those who aren't familiar with the terms, but the cancer is a grade 3 or poorly differentiated cancer this time.  What this comes down to is that it's a very fast growing aggressive cancer that is difficult to manage.  I haven't received the biopsy results with the ER/PR status or the HER2/Neu status yet.  These are tests they do to determine what feeds the cancer.  If the results are ER/PR positive, it means that it is fed by Estrogen and Progesterone.  Tumors of this type can be controlled by blocking estrogen to the tumor.  If the tumor can't feed it can't grow.  ER/PR negative tumors have an unknown food source and hormonal therapies do not work on them.  My two oncologists (one here and one at MD Anderson) are betting on this coming back differently.  My MDA oncologist has a feeling it's going to come back as an ER/PR negative tumor, while my local oncologist is leaning towards ER/PR positive.  There is good and bad to both.  ER/PR positive is easier to beat.  There are more therapies available because you have chemo and hormonal treatments to choose from.  It tends to reoccur more often.  ER/PR negative, on the other hand, is hard to beat, but if you can get it into remission and manage to survive for 5 years, there is a chance it may not reoccur for years or possibly never come back.  The HER2/NEU is the other type and it used to be one of the worst, but they now have a targeted therapy that specifically targets these cells and make it more manageable.

I've been waiting on the biopsy report.  Waiting and waiting and waiting.  I check the mymdanderson.com website multiple times every day waiting to see what the receptor status will be.  It will answer a lot of questions I have regarding my options for treatment.  I keep getting told it takes a while to do the staining and all that in the lab that is required.  The waiting is the worst part of all this.

I think this is enough to throw out there tonight, but I have a feeling I'll be updating this more often.

Metastatic Breast Cancer

Good article on Breast Cancer Mets


http://ww5.komen.org/Content.aspx?id=6442452380