Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy

BlairK

Dear TheLadyGrey - I had to register on the website first with a user name and password.  The panel discussion is awesome but still does not eliminate the dilemma.  I will look into the book when I go home. I had 6 hectic days in Hong Kong with a packed schedule full of meetings.  Now I am back in Beijing.  Then in the evenings I would go on this bulletin board and the internet in the search of answers which now is beginning to weigh on me. At least it is NOT effecting my work - just my ability to get a long night's sleep.  With the panel discussion, it is interesting that 4 out 5 oncologists from some of the best breast cancer hospitals in the US would NOT treat and only the oncologist from MD Anderson aggressively treats T1a HER2 positive tumors.  In our choice between Sloan Kettering and University of Pennsylvania for a third opinion, the second oncologist recommended Penn so we will go there but we have to wait until December 27th.  I hope it can be expedited.  My wife seems afraid of Sloan Kettering and she spent a lot of time on their website.  I just hope that if Penn is the tiebreaker - my wife will follow their advice and then when my wife makes her final decision she will feel comfortable with it and not look back.

TheLadyGrey

Thanks dragonfly -- I did get to read it after registering.  I'm not sure what the point of the registering thing is - they are highly unlikely to sell me anything or, hopefully, see me again.  I've gotten spoiled with open source. \

Not helpful in my ongoing but so far unsuccessful effort to find the study that says "BAD IDEA."  While it is consistently sadly to the contrary --  high grade, with lymphovascular engagement and ER/PR-, the three factors cited in kicking things up from T1a, which I convinced myself I am, to TCH.  

The good news being I am becoming ever more convinced that my treatment of TCHX4 is at the lowest end of the possibilities -- those doctors were talking about The Red Devil for my profile!  

Harumphh....I came perilously close to feeling grateful, but caught myself in time. 

exbrnxgrl

That is a good book for children, Lady Grey. Additionally, the ACS has some printed info about how to tell children about a parents cancer. Blair, of course you can't say anything without your wife's participation. At age 8, your children are not that"small" and try as you may to protect them I suspect they already know that something is amiss. The problem is, if they are not told the truth, they will invent all kinds of things in their own minds, including blaming themselves. I am no expert on breast cancer or any medical problems but I am an expert on elementary school aged children. I have seen, too often, the ill effects of hiding a major life event from a child. I hope your wife can come to understand this and you can both help your children with what is happening in the family. Yes, this is another thing to add to your very full plate, but it is so important for your children's emotional health. Caryn

BlairK

Dear exbrnxgrl - I had a nice day today at the Great Wall (my 6th time - different parts) and the Ming Tombs (Ding Tomb and Changling Tomb).  My wife has shared with me her thinking as of today and that is she is heavily leaning toward the second oncologist and no chemo/herceptin but yes to Arimidex.  However, she is keeping an open mind until we can go visit Penn and the third oncologist.  It is well established from all the posts to my thread that T1a HER positive is a controversial area which poses a great dilemma.  My wife is a positive person so for her, if there is a risk of anywhere from 5 to 20 percent that the cancer can come back (the panel discussion had those ranges), she prefers to believe there is a 80 to 95 percent chance that it will not come back.  She only seems to want chemo and herceptin if it is established that it is absolutely necessary and she buys in to the NCCN guidelines.  We both are greatly troubled by the first oncologist who added three foci of 3.5 mm, 1 mm and 1 mm together to nudge things over 5 mm so the guidelines would recommend treatment.  All the guidelines and even posts on this bulletin board say that treatment decisions are made on the basis of the largest foci (largest tumor).  I took a ruler and drew a 3.5 mm line on a piece of paper.  It is so small and tiny.  By the way, I did not mention a story that happened today at the Great Wall.  A group of women got lost and asked me for help.  In talking about my job and the fact I fly between Asia and the US a lot, I told them my wife has cancer.  One of them said "what tyoe" and when I said breast cancer she said that she had that too.  She had a BMX and chemo - HER2 negative but 6 cm.  She is alive and well after 5 years and said - "look at me - I had cancer and now I am climbing the Great Wall".  Anyway, I guess the most important thing for me to remember is that it will be my wife's decision.  If the decision is no chemo and herceptin, then I think the key thing will be to establish how my wife will be monitored.  I will ask a lot about that later.  But first we must have the meeting with the third oncologist in December.  My wife is looking forward to the vacation that we will take during Thanksgiving with the kids and I hope it will be relaxing for both of us.

KC71579

Blair

I would also be deeply troubled by onco #1, and would never treat with that onco regardless of chemo/no chemo recommendation.  You are not supposed to add up the foci, as you already know, the largest tumor rules.  To me, that alone would make me reluctant to treat with that oncologist.  Just my opinion  

Good luck at UPenn and with your wife's decision.   

Omaz

BlairK - Did you see this review article?  I know you like to read the original work and I came across it in my file.  LINK

Ann Oncol. 2011 Jan;22(1):17-23. Epub 2010 Jun 20.
Small HER2-positive, node-negative breast cancer: who should receive systemic adjuvant treatment?  Joerger M, Thürlimann B, Huober J. 

BlairK

Dear KC71579 - I will remember your posts as being extremely helpful and relevant to our situation.  My wife does not plan to go back to Oncologist #1 although I liked him.  She seems to have discounted his opinion because of a variety of reasons especially adding up the three foci to nudge things over 5 mm and the rush to treatment initially not following the breast surgeon's recommendation to wait six weeks after the surgery date.  She likes Oncologist #2 and CINJ so she plans to follow up there after our visit to Penn.  If I have to be in Asia when the visit to Penn happens, my mother and sister will go with my wife to visit and I will write out all my questions for the oncologist at Penn in advance of the meeting.  I guess I would ask you again - how does CINJ monitor you?  Do they do any additional tests to make sure you are cancer free?

BlairK

Dear Omaz - Thanks a lot for the article.  The link has the abstract - how do I get to the entire article?

Omaz

BlairK - Did you try clicking on the icon in the upper right corner?

BlairK

Dear Omaz - I found it.  The whole article is long and very technical.  Thanks a lot for sending it.

KC71579

I don't go to CINJ.  They were just my second opinion hospital, but I don't treat with them and haven't been there since 2/2010.  My oncologists are local.  I am monitored via mammo, u/s, mri, and bloodwork.  And, I rotate visits with my team of 4 doctors, seeing one a month.     

BlairK

Dear KC71579 - My wife had a double mastectomy so mammograms are no longer possible.  What does u/s mean?  What type of blood work.  Have you ever discussed full body scans or cat-scans have specific organs?  We can't do much more until we go to Penn.  Again, I really appreciate your posts.

Omaz

BlairK - My general sense from what I have read about small HER2+ tumors is that they do benefit from herceptin.  Is treating your wife with herceptin and an AI a possibility?? 

BlairK

Dear Omaz - We have two opinions - (1) TCH with cytoxan plus Arimidex and (2) no chemo, no herceptin and arimidex only (I assume AI is hormone therapy and arimidex).  The following things are driving me a bit crazy - the risk of reoccurence and how to monitor my wife if she follows the recommendation to not have chemo.  The side effects of chemo and herceptin are more scary to my wife than the risk that the cancer can come back and for me the risk of the cancer coming back and not detecting right away is scary.  The NCCN guidelines for less than 5 mm say only hormone therapy.  So we are going to have to go to get the third opinion.  Your case at 2 cm is clear cut - chemo and herceptin and hormone therapy.  My wife's case is in the gray area and full of uncertainty about what to do.  By the way, Herceptin is not FDA approved by itself - it must be used with chemo and AC->TH and TCH are the two approved regimens.  Anyway, I hope you are doing well.  I will have to go back and read your earlier posts.  Thanks a lot.

Omaz

BlairK - True about the herceptin and chemo, I also read that.  Did your wife have the oncotype DX done?  That would seem like a good choice in her case because she is ER+ EVEN THOUGH she is HER2+.  I have read of some women here with small tumors (1cm) that were ER+ and HER2+ that did have the oncotype testing done.  Usually with HER2+ oncotype DX isn't done because chemo is a given but maybe with smaller tumors it might help with the decision making.  I am currently on tamoxifen and hope to switch to an AI soon.  AI=aromatase inhibitor like femara, arimidex and aromasin.

KC71579

Hi Blair

U/S=ultrasound.  I had a lumpectomy with radiation, hence the MRIs and mammograms.  I am not exactly sure what the game plan will be for your wife with BMX and follow up.  My oncologist runs a full blood panel with tumor markers.  Full body scans are usually only warranted or covered if the patient becomes symptomatic.  Unfortunately, many of us stage 1 gals are not given full body scans at diagnosis, but I did have a CT too just after diagnosis and prior to radiation.  I also have pelvic and abdominal ultrasounds because Tamoxifen has been harsh on my ovaries (being that I am so young and pre-menopausal).   

I saw my oncologist today.  21 months cancer free   After I finish Tamoxifen in 3 years and 3 months (but who's counting LOL), I will be switched to Femara.

When are you guys heading to UPenn?  Waiting is the worst part.  Once you have a game plan in place, it all becomes much easier as the other ladies will tell you.  The gray area is a crappy place to be for sure.    

     

TheLadyGrey

Blake, here is one I had not seen.http://annonc.oxfordjournals.org/content/early/2010/06/19/annonc.mdq304.full

Head spinning, but very thorough.  

I'm 36 or so hours away, but have not given up on my quest to find the "don't do this" article.  Something in me is holding me back.  Wish I knew what.

By the way, I met for quite a long time tonight with the first Penguin Cold Cap couple in the area -- lovely people.  She finished in April and I can testify she has her hair.  She reported that 4 other women in the area have used the Cold Caps with excellent results with TC or TCH.  

Her husband handled her caps -- it is quite a fiddle to get them switched out with dry ice and so forth, but she did have her hair!  They are coming over tomorrow to walk us through the pitfalls -- lovely, lovely people.

It may be worth sharing the "Hope for Hair" idea with your wife.  I'm not seeing andriamycin-- very hair unfriendly -- as remotely appropriate for her (I have, after all, graduated from Internet Medical School at the Post-Graduate level) so there is reason to believe she can hang onto her hair if she decides to go forward and if that is an issue for her in resisting treatment -- and it TOTALLY is for me!  

So far, the responsiveness and level of support from Penguin has been superb.   

BlairK

Dear Omaz - I asked both oncologists about Oncotype DX and they both said because of the HER2 positive it is not indicated and of little value.  I will ask the third oncologist.

BlairK

Dear KC71579 - The appointment at Penn is currently December 27th - an agonizingly long wait.  My wife is trying to move it up even if I can't be there in which case I will write out all my questions for my wife to take with her.  I need to be much better informed and educated on the follow up.  How does an oncologist know that a patient, even a patient that has had chemo and herceptin, is truly cancer free.  You say that scans are only warranted if the patient is symptomatic.  But most cases where a patient is symptomatic imply that the cancer would be more advanced to cause symptoms.  I need more clarity on follow up and monitoring to feel comfortable with a no chemo and no herceptin recommendation.  The opinions on reoccurence risk in the various articles which have been posted on my thread are all over the board.  I think nobody really knows.  Two of the other threads under HER2 positive are interesting - "When Does Reoccurence Occur" and "Anybody 10 Years Out" (I don't have the exact words down right.  The fact that there are women who have survived 10 years with this is very encouraging.  Thanks again for your post.  I hope you will remain cancer free forever.

BlairK

Dear TheLadyGrey - Very clever of you to shorten my name BlairK to Blake.  Again I really like your colorful writing style.  Anyway, I know you have a very scary time coming up soon with chemo and herceptin.  For my wife, losing her hair is NOT an issue in considering the no treatment recommendation from the second oncologist.  She is more comfortable with the second oncologist than with the first oncologist and she is very eager to hear what the third oncologist recommends.  The biggest factor with the first oncologist is that he added up the three foci to get 5.5 mm instead of basing things on the largest at 3.5 mm.  She now knows the NCCN guidelines advocating no chemo and no herceptin for under 5 mm.  She is concerned about the side effects.  I am concerned more about the reoccurence risk.  Since you are a lawyer if I recall correctly then the jury is still out on our situation and we are waiting for the third opinion and the December visit to Penn.  I wish you good luck with your chemo and herceptin and I hope you will have minimal side effects.  Please write and let us know how you are doing in that colorful writing style of yours.  BlairK

SpecialK

Blair - just read your post to KC71579.  Just wanted to say different oncologists have differing philosophies on follow up care for patients, both for those who have had chemo and those who haven't.  Some do bone, CT, or PET scans, and some just wait for symptoms.  Some do tumor markers and some don't.  This has to be part of the dance in choosing your oncologist.  It amounts to style points and you have to determine your comfort level with watch and wait.  My oncologist did a pre-chemo PET scan, pre-chemo and post-chemo tumor marker CA27/29, and offered me a post-chemo PET, which I had.  How frequently they check, and with what modalities, may be the criteria with which you choose your oncologist - especially if your wife opts not to have chemo/Herceptin.

BlairK

Dear SpecialK (by the way one of my favorite cereals in addition to Kashi and oatmeal) - This kind of post is really useful and appreciated and I hope I get a lot more of them prior to our visit to Penn.  Waiting for symptoms makes me anyway very nervous.  I do not know how my wife would feel about that until I get home.  Some kind of scan combined with blood tests seem to be the way to go and if it were me would make me feel more comfortable with the no chemo no herceptin recommendation.  But it is not me, it is my wife.  I will have a long talk with her when I get home.  I DO NOT understand the waiting for symptoms approach.  If cancer causes symptoms then in many cases it is advanced.  Look at breast cancer.  DCIS is often asymptomatic.  If it is detected by a lump, then those tumors are relatively large and the stage could be more advanced.  Anyway, thank you very much for your valuable post and I hope I get a lot more of them before our visit to Penn.  I hope you will have good health and a great Thanksgiving.

SpecialK

Blair - happy to be in the company of Kashi and oatmeal!  Those of us who have received chemo are in the same boat with the watchful waiting if our docs choose not to do scans/markers periodically.  I feel fortunate my oncology center feels that these screening tools are of benefit. The mixed bag is that scans and markers won't keep the cancer away - by the time it shows up there, even if asymptomatic, it has spread.  It is a dilemma, isn't it?

Thank you for the wishes for good health and holidays.  My 23 year-old son, who goes to school in Virginia, will be home for Thanksgiving.  I have only seen him a few times since I was diagnosed so it is always good to spend some time together.  If I remember correctly, you get home soon from your business trip and then take a vacation with your family.  Try to forget all this and focus on having some fun together!

suzieq60

Blair - my onc only did scans after I had surgery. He said the risk of being exposed to the additional radiation is not worth it, yet he insists my DH have a CT scan every year. His risk of recurrence is much higher than mine. I think that's what he weighs up in the decision. I did talk to him about what to watch for re bone mets and he said if I have any pain that won't go away to call him and he would request a scan. I forgot to ask him what to watch for re liver mets though - will do that next time I see him.

Sue

Omaz

BlairK - My understanding is that usually the docs say that oncotype is not indicated because the HER2 component will make the test come back with a high recurrence score and they are intending to do chemo because of the HER2 component anyway.   Seems to me in your wifes case that 'they' can't have it both ways - no chemo because the tumor was small and no oncotype because of the HER2.  I am not sure if I am expressing this thought well - it's early in the morning!

dragonfly1

Blair and Omaz I had suggested the same thing i.e. normally the oncotype test is not indicated for Her2+ because chemo is automatically recommended but I would think in a case where it's so unclear what to do that the oncotype may actually be helpful. The score may provide some very relevant data to make the best decision. I think if I were leaning against chemo, I'd at least insist on the oncotype test for peace of mind. It's just more data to factor in...

Omaz

Thanks Dragonfly - I was trying and you said it better!

suzieq60

I did some research into the oncotype test for HER2 - what I found was that all it does is confirm the HER2 status.

Omaz

Hi Sue!  I have seen different scores though for the few women on the Boards who are ER+HER2+ and did have the test but I think all were above the cutoff for chemo.  If we assume that the score will reflect the HER2+ then why wouldn't women with small tumors who are HER2+ be recommended to have chemo/herceptin?  I am just wondering what the logic is...thanks

TheLadyGrey

My impression -- and it is no more than an impression -- is that HER2+ gets awarded so many oncopoints that the remainder of the oncotype criteria could be close to zero and you would still get a high score indicating chemo.

It wasn't appropriate in my case because the HER2+ piece is ER/PR- and, in my oncologist's view, HER2+ trumps everything, do not pass go or collect $200 on your way to adjuvant therapy.

I'm wondering though if I haven't been hornswaggled.  It is awfully convenient that my invasion measured 6 mm (combined, although I don't think it is near that simple), a mere millemeter above the cutoff.  The more I read, the more it seems clear that MDA placed a lot of significance on that number.  If I got out the thumbscrews and put that pathologist under the bright lights I wonder if he wouldn't say he is well aware of the MD Anderson study and pegged me at 6 mm because he saw the report going to my oncologist, didn't like the look of it, and knew exactly what she would advise.

I'll never know, but it does bother me.

Oh well - I'm doing this so my kids will stop worrying and for no other reason.  The biggest difference between me and Mrs. BlairK is that she doesn't have adult children who will harass her unto the ends of the earth if she doesn't do the therapy.  Mine will. It is the least worst of several bad choices.  At least I hope so.