< 5 mm HER2+ IDC...why NOT chemo???
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OK, so I had my 2nd, 2nd opinion yesterday...LOL.
He was GREAT. So, so compassionate, exactly what I needed. He was very caring and seemed to understand that treating the mind (which I feel like I'm losing with all of this stress, LOL) is just as important as treating the body. Thus, he suggested we run a PET scan of my body to reassure me that as of now (since you never know what the future holds) I don't have any metastatic cancer anywhere. (yes, I know this can lead to false positives...hoping I don't have that stress). They will be setting me up for this soon. He says he can tell that with all that I have been through that I am way stressed out and obsessing, and he wants to try to put my mind at ease or, at worst, give me some answers. He also wants to run some blood work to check tumor markers (again, I know these are not foolproof - hopefully they won't cause me MORE anxiety) and also will be checking my vitamin D level.
He said in terms of treatment, we really need to see what the calcification is in the R breast (a residual calc was seen on mammo AFTER my BMX) before we make any final recommendations - b/c of course - if that is cancer, depending on how big it is or the kind it is, that can totally impact the ballgame. Of course it could just be artifact still, too. Either way, we need answers on that before deciding how to proceed. I see the surgeon next week about doing a biopsy.
He did say that if it ends up that all we are dealing with is the L 3 mm HER2, then we have some decisions to make. He acknowledged that much of the time tumors this small, even HER2+, are not treated with chemo/Herceptin. However then he said he knows that now people are saying we need to look at not just the size of the tumor, but really consider the biology that may make it more aggressive (re: HER2). He said if it comes down to peace of mind for me, he is willing to give me Herceptin only (instead of giving it with chemo, which is the standard way it is given). Herceptin only has fewer side effects than chemo. So the risk of giving it for the unknown risk of my size tumor may balance out, whereas the risk of doing chemo w/Herceptin may be too high when the risk of my tumor is unknown. I hope that makes sense.
He didn't seem to think that waiting another 5 weeks to start Herceptin (i.e. after rads) would make a huge difference.
Anyways, I was really encouraged, and he was so, so compassionate and seemed to look at caring for my whole being (i.e. mental status!) vs. just my medical status. I'm not sure exactly where this is all going and of course I reserve judgement after meeting with him/dealing with his office more, but I am leaning towards choosing him as my medical oncologist.
So no - not a strong consensus - (1) strongly says no tx except Tamox (2) urges chemo with Hercep (3) offers Herceptin only if that gives me peace of mind.
I'm leaning towards Herceptin only.
BTW, how many of you have had your infusions in your doctor's office, instead of the hospital? These last two docs, I think (need to ask on 2nd one) do their infusions in their offices. That scares me a bit...ie. if you have an allergic reaction, are they equipped to handle it? It will be a question I ask my doc, but I was wondering what other's experiences have been with this. Maybe I am worrying over nothing, but if you haven't figured it out...that's a character flaw I've got that isn't going away! LOL
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The infusion room is in my doctor's office. But, they just declared it a "hospital-based" clinic so you tell what that means! The MO is always in the office during infusion days. Thats how it works here. Well at least that was what they said at my chemo training. I will Find out next Thursday.
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Dancetrancer... I started a thread...INFUSION ROOM ETIQUETTE. Check it out because it describes sisters experiences and descriptions of their treatment locations. I take my 6 month Zometa infusions in my doctor's office.
Glad you found a doctor that brings you comfort and reassurance. Again, good luck. You have been such a trooper bringing valuable info to our sisters! -
dancetrancer - I was going to PM you to find out the meeting went. He does sound really good. Did you ask him about the grade? Maybe herceptin only is the way to go seeing it wasn't grade 3. Hope the rads are going OK.
Sue
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Sounds like you talked to a guy like mine, and got some really good answers. At least ones where you can be part of the decision.
My infusions are in the oncs office also. But the office is i. Themedical building attached to the hospital, so incase of a dire emergency, they could get you someplace fast. The folks in the office are very competent and well accessed though. There isnt much they dont have at their disposal, including a full-time pharmacist that mixes the chemo and anything else they need. -
Hi, I feel the same way. Maybe we can talk. You can email me at bmmargie@yahoo.com.
I also need someone to talk to. Afraid of recurrence, and seeing oncologist soon.
Hugs,
Margie
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Dancetrancer - I am so glad you are finally getting some answers and some options. My treatments are also in my onc's office, but they are connected to the hospital. I wasn't ever concerned about needing the hospital though.
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Dancetrancer,
It sounds like you've covered all your bases and found a doctor that you are comfortable with. That alone, is half the battle
My infusions are also done at my Oncologists office in the "Infusion Room". It is a large room with recliners lining each wall, the nurses station is located in the middle of the room. From there they are able to monitor us at all times. They are usually fluttering around the room checking on each patient anyways. I have never felt like safety was an issue at my center. The nurses are very well informed on the different chemo meds and their reactions. They are well equipped to handle any reactions or events that might occur. Also My doctor is always in the office on the days of my infusions. Being a nurse myself, I picked a facility I felt 100% comfortable with and that I felt would offer great care. -
Hi Dancetrancer - It sounds like you are in the same dilemma that my wife just went through. My thread which I think you have been reading documents everything. It took my wife several opinions to reach the final decision to have chemo and herceptin. For me, I have heard several stories about women who had 2 mm HER2+, did not have chemo and herceptin and had a reoccurence and did not make it. Anyway, I will continue to read your thread and I wish you good luck in reaching a final decision.
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Thanks BlairK - yes, I have been following your thread, and it has been very helpful to me. Thank you!!!
At this time I am in a waiting period - three things to be completed before I make a decision:
1) I have a suspicious calc in the R reconstructed breast that needs to be evaluated further. Mammo and US to be repeated this week. PET scan showed some mild increased activity in the R reconstructed breast - it is suspected to be benign but as we all know further testing is prudent. If additional cancer is found, of course this would have to be added into the analysis.
2) I wish to finish rads before deciding on further treatment. Done with 10 of 28 tx right now.
3) I will be going to MD Anderson for a final opinion after rads is finished. Since they are the authors of the t1a,b HER2+ study most talked about, I feel they are most likely to treat these small cancers aggressively. I want them to look at my entire case - including my age and the fact that my mitotic score is low (1), and then give me their final opinion. If they say they don't feel I need further treatment (aside from Tamoxifen), I will feel much more confident forgoing tx. If they feel I should have treatment, I now have a local onc who is willing to provide it. My local onc is aware that I am going to MD Anderson and is assisting me with the referral.
My PET scan results, which I just got today, were negative for any signs of metastatic disease at this time - yahoo!!! This is the most mental relief I've had ever since I found out the HER2+ news.
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That's great news, dancetrancer! Congrats on good results!
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Sounds like a solid plan, dancetrancer, glad you have worked your way to it in the way most logical to you. Each person is so individual.
I do wonder, however, how well the average person with less flexible resources but a similar diagnosis could work their way through the same process in the present medical system.
A.A.
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AA, I know. I feel very fortunate that I have had the ability to read about this (and understand it) and research it extensively, and then have had the ability to get the additional consults I wanted. At a minimum, I hope that my thread will help others with the same diagnosis who have to walk this path and make a difficult decision.
And for my fellow research-reading geeks, check out this article. It's theoretical (mice studies) and can kind of creep you out to think about circulating tumor cells, but, you have to keep it all in perspective. I just really like to understand the how and why behind things - it doesn't mean it is going to happen to you. This may explain those rare cases of DCIS that they find later metastasized.
Systemic spread is an early step in breast cancer
Breast cancer cells can break away from their primary tumor and spread to distant sites at a much earlier developmental stage than previously thought, scientists have found.
Using a novel technique to visualize disseminated tumor cells (DTCs), Christoph Klein (University of Regensburg, Germany) and colleagues show that breast cancer cells can populate bone marrow and lung tissue when the primary tumor is still at a pre-invasive, in situ stage.
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Next, the researchers took bone marrow samples from 607 women with breast cancer at various stages between DCIS and T3.
Using the same staining technique, they found that cytokeratin-positive DTCs were already present in the bone marrow of patients with DCIS; moreover, the presence of DTCs was not associated with tumor stage.
Klein et al propose a new model of metastases whereby dissemination of founder cells is a distinct early step in cancer progression that is necessary, but not sufficient, for metastatic outgrowth.
They add: "The understanding of which mechanisms promote the outgrowth of disseminated tumor cells often after extended periods of cancer latency might be key to the prevention of the lethal metastases."
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Kinda glad I went aggressive!
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Great article!!
dancetrancer - I'm glad you are working everything out. Hope the rads are being kind to you.
Sue
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It does make one wonder just what might be some of the possible causes for it to have happened to some mice and not others.
No proof, of course, but it could be something as relatively simple to address as vitamin D level, given that most bc patients have abominably low levels at time of diagnosis (in part due to the low RDA, and in part possibly due to some general change at midlife for us that reduces our vitamin D levels).
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One of my oncs really believes in the Vitamin D thing. He feels it needs to be higher than what is considered "normal" (which is somewhere in the 30's) to improve the immunity of someone who has had cancer. He suggests I take Vit D supplements (2000 to 5000 mg a day I think!) beyond my daily vitamin (he will run bloodwork to avoid toxicity). I'm not doing anything until I'm done with rads (not supposed to take any supplements per RO) and have had time to vet this Vit D thing for myself. Not interested in taking that research on just yet, but it is on my list of things to learn about.
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On the other hand, maybe the mice were just dark-chocolate-deprived....
(I aim high, to be neither low vitamin D nor dark chocolate-deprived, and work very hard at both.)
My onc in Seattle also favors chemo for small tumors. But he is also the one who never bothered to mention to me that I was HER2 positive, and who thinks telling a 51-year-old woman she will "probably go through menopause" with chemo is all one has to say about the SE's.
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I'm all for the dark chocolate if that is the answer - bring it!
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Dear dancetrancer - Did you have a lumpectomy instead of a mastectomy? Would that be the main reason for radiation first? There was also a panel discussion debate among five oncologists (posted on my thread) and the MD Anderson oncologist was the main proponent of treating HER2 positive tumors smaller than 5 mm. My wife has just finished her fourth and last chemo treatment and now it will be herceptin every three weeks from this point onward and beginning to take Arimidex. If you go for chemo, it should go by fast. The most difficult treatment seems to be the first one. One point in my wife's case, she had three foci of invasion in her IDC component. Do you know how many foci your IDC has? In my wife's case the three foci were another factor pointing toward chemo. Anyway, I will continue to read your thread. Good luck with everything.
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Blair,
I had a BMX. I am having the radiation first b/c I had it all set up and started before I even knew I had a HER2+ IDC. My IDC diagnosis was delayed by 4.5 months b/c the first 3 pathologists missed it. I need rads b/c of close margins post-BMX (for what we thought was DCIS only), which does not happen often. It was only b/c I went for multiple opinions on the need for radiation that the IDC component was eventually discovered. You can imagine what a shock that was.
It is not typical of course to to radiation first, but since I was already simulated and started by the time I found a doctor willing to give me chemo/Herceptin, and b/c MD Anderson won't see me for a consult until I'm done with rads, I felt I needed to just go ahead and do the rads and get it over with. Of course this is rolling the dice b/c taking care of distant recurrence risk first is most important. Sometimes things just don't go perfectly, and in my case, that seems to be the norm, not the exception. Fortunately, my PET scan came back clear, so that gives me a bit of breathing room that at least right now there are no signs of metastasis and hopefully a few more weeks of delay isn't going to make a difference.
I have read that panel discussion and yes MD Anderson is more aggressive in it's treatment of t1A's. However they do not treat ALL t1a's, so I want the specifics of my case reviewed to see if I meet their criteria for a high risk HER2+ t1A. I do not want to take on the toxicities of chemo/Herceptin without fully understanding my potential risk for distant metastasis. I know no one has the answer, actually, to that question, but I am hoping I will get some peace of mind with having MDA look over my case specifically. Each case is unique.
All I know of is one foci of IDC, 3 mm. Of course since my DCIS was 6 cm+, and this foci was missed by 3 pathologists, there is always the chance that more than one foci was present (or that something is sitting undiscovered in part of my unexamined tissue block). If I knew for a fact that more existed, yes, that would sway me. As of now, the unknown is swaying me towards getting Herceptin only, but I am not 100% sure.
Fortunately the onc I suspect I will stay with is aware I am going to MDA, and is willing to give me Hereceptin only if that is what I decide. So we can have all the prep ready to start asap when I get back if I decide to go that route.
Thank you for following my story and for your input!
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Dear dancetrancer - Your case sounds a bit unusual. I would put your faith in MD Anderson and hopefully you can get their opinion as soon as possible. Then you will have some peace of mind. My wife got peace of mind with her third opinion at the University of Pennsylvania to go ahead with chemo and herceptin. And now her 4 rounds of chemo have been completed with mainly the first treatment causing the most problems. I will continue to read your thread. Maybe you can take a vacation like I took my wife on a vacation last Thanksgiving and getting her mind off of the decision she needed to make helped a lot. Anyway, best of luck.
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Dancetrancer-congrats on the pet scan. If that article proves true, would you think that even if you had chemo to kill anything in the blood stream, that the cells in the marrow would at some point pop up and metastisize, or that chemo would effectively kill it all?
Everytime I speak with someone who has gone through diagnosis and they dont know their path report or anything about their specific tumor, I am amazed. I could not just blindly follow the doctor. I too was grateful to have the opportunity to talk with several to help me arrive at my decision, as well as spend hours researching each bit of the pathology and treatment. And then the nurse navigator in my surgeon's office, who, when I was grumbling over the phone about something, asked me if I knew she was an 11 year survivor of stage 3 BC. When I said no, she told me in no uncertain terms that she was, and sometimes you just have to put your trust in the doctors. Hmmmm...that really annoyed me, until I actually met her in the office and she was the greatest person. In retrospect, I think it actually turned out to be good. Kind of like a needed scolding from your mom. LOL -
Well all, I finished rads Friday and flew to Texas and had my appt with MD Anderson this morning.
I loved MD Anderson and the onc I met with. She was SOOOOOO on her game. Nothing I said threw her off (and you KNOW I can be challenging with LOTS of questions!)...she was able to spit back a response, quoting study after study to demonstrate her points...
She strongly recommends chemotherapy and Herceptin for me b/c of the HER2+ combined with the fact that I am young and premenopausal. I thought maybe the fact that I was a mitotic rate of 1 would mean no chemo. Nope. She said the HER2+ trumps that. She does not believe in Herceptin monotherapy for adjuvant tx. She said yes it is effective in metastatic cancer, but not as effective as chemo+Herceptin. She said she just discussed this with the author of the study on herceptin monotherapy in metastatic tx, and he said, no, he would not recommend monotherapy for adjuvant tx. I can give more specifics later when I relisten to my tape, but this is the gist of it.
Oh and she does not recommend the softer, kinder Taxol only regimen; she said the results from this study are not in yet and thus does not feel comfortable recommending it for me. She said if I were 60 she would consider Taxol + Herceptin. She thinks I need to do TCH (Taxotere-Carboplatin-Herceptin). And not just 4 treatments only...recommends 6.
Well holy crap I thought at worst she'd recommend TaxolX12 plus Herceptin and at best was hoping for Herceptin monotherapy recommendation. I wasn't expecting such an aggressive response for my small 3 mm tumor, especially since UAB gave me such a firm NO TREATMENT other than Tamoxifen response. Wow. I don't quite know what to think.
I'm overwhelmed and processing this information. I told her my greatest fear is the development of chronic neuropathy, esp. since I already have some mild nerve damage in my left leg and intermittent tingling in my L hand. She acknowledged this could predispose me to worse neuropathy, but it is unknown. She said at worst I could try the TCH and if I develop symptoms, stop and continue with the Herceptin.
So...my question to those who might know...if you get neuropathy symptoms in the middle of chemo, and stop it early, does this reduce the chance the neuropathy becomes permanent?
Being a PT, I've treated many a patient with neuropathy that does NOT get better and causes longstanding pain and disability...it is my greatest fear to develop this...and then not be able to do my greatest passion...dance...
I thought I'd have peace of mind and be able to make a decision easier after this...not so!
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Dancetrancer...you do have so much to think about now. Trying to make a decision can leave you spinning! Here's what I think.... Take your passion for dance out of the equation. I know others might say that quality of life is paramount.... and I don't disagree! But what if you had an accident and heaven forbid could never dance again? My beloved aunt a voracious reader like me could no longer enjoy her love for reading due to a stroke. The thought of me losing my eye sight or having a stroke frightens me because I could be faced with never being able to read again!
I think the doctor was being pragmatic when she mentioned she was unsure of your risk of neuropathy. I think that putting it into perspective is what you need to do now. Will the therapy perhaps ultimately make dancing difficult? Perhaps. But likewise, did you ever worry before about having an accident that would prohibit you from dancing?
Life is all about have confidence to take risks. Erik Fromm discusses in his classic book The Art of Loving... all about having confidence to take risks. Perhaps you are now more risk adverse than you would been had you not been diagnosed. But remember, EVERYDAY you face the risk of losing that passion to dance. There isn't a day that goes by that I thank G-D that I CAN read. I am also cognizant that I can lose my ability to read at any moment. But at the end of the day, I have confidence to take risks and try not to worry about losing my passion.
I wish you well with your decision! Good luck! -
Dancetrancer, after researching the matter I cancelled my MDA consult because (1) my onc worked on the retrospective study that determined sub 1 cm HER2+ tumors had poorer outcomes, and, more importantly, (2) MDA would recommend the same or more treatment as my onc -- I did TCH x 4. No way was MDA going to say no chemo!
I never asked why she said 4 versus 6 and I've never seen any studies or materials on the point. Arguably, my cancer looks more aggressive than yours (can I have a prize please?) - grade 3, Nottingham 9, LVI.
I'm wondering if your MDA onc discussed the 4 versus 6 issue and what criteria are considered. I'm just curious versus worried - 4 was plenty for me - plus this issue seems to crop up periodically and it would be nice to be able to give some guidance.
I went to my first chemo more or less kicking and screaming - you did NOT want to be in range of my death rays that morning! I thought the whole thing was total overkill and did it to appease my family.
In the intervening five months I have researched even more (!) and boy am I glad I did the chemo. HER2+ is just a whole different kettle of fish, a fact that Beesie was quite insistent on drilling into my thick skull....
I used to think I would finish treatment and never give it another thought - that's my temperament. With a fuller understanding of HER2, I will certainly be more vigilant about things that I would normally blow off. I think had I not done the chemo, those twinges and aches would assume a disproportionate importance.
Don't get me wrong - I think BC is a lucrative industry and often over treated. But if you are one who avoids the bad outcome, YOU are not over treated - the other 79 women are. Except none of ever get to know.
What you do know is that you have a range of diagnosis and a range of treatments. Of the two, the former would scare me more. I would be inclined to say, "you people are clearly incompetent - throw the book at this!"
Once you decide it gets better. Uncertainty is dreadful. -
dancetrancer,
I'm glad you feel so strongly that the onc is the best so you can feel completely in sync for your treatments. Congrats on surviving the evaluations with equally qualified opposing opinions.
What seems to continue to be left out in giving recommendations for young people in particular is the question of how to achieve ovarian ablation as part of treatment. Doing trastuzumab alone doesn't achieve that goal, whereas doing chemo plus trastuzumab also achieves the goal of reducing ovarian influence.
Hopefully that long overdue question will eventually get answered with the comparison of OA plus trastuzumab for those who are HER2 positive, so that fewer people might be subjected to chemotherapy and possible neuropathy in cases like yours.
The plus is that there are lots of people here who will provide tips and support for all the drama and trauma of going through the long process of treatment and then recovery!
One step at a time,
A.A.
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VR, your point about having an accident that stops me from dancing is well taken. However, this is different. I'd be choosing to possibly bring this consequence upon myself. I guess I should say it's not just the dance that concerns me, it's the fear of living in chronic pain from neuropathy. I lived with chronic pain for about 15 years (and finally got it better)...so I know what this means. So the thought is, would I rather be dead or live with chronic pain and disability. That's a tough call (at least for me). I'm not saying this issue is keeping me from doing the chemo. However it is a huge fear in my mind.
You'd think I'd be jumping for joy that someone I really trust and believe in is telling me to do the aggressive treatment...which is what I wanted initially. I was pretty scared when I first found out about the HER2+. That makes it easy to go with the tough treatment. It's not good to let too much time pass...I actually had kinda talked myself out of chemo...and was psyched to think of being done or just Herceptin and getting back to maybe living a "normal" life. So this is a mental set back for sure.
I am pondering your risk taking advice. Thanks so much - these are the kinds of thoughts/inputs I need to help me figure out what to do.
LadyGrey - I was really happy to hear from you! I subscribed to your thread and read it...maybe I missed something, but I thought the side effects were so severe that you quit chemo??? I guess you finished all 4 and are now doing Herceptin? It is encouraging to me that despite the hell that you went through (oh yeah, I remember those details!), you now feel it was worth it all. Did you suffer any neuropathy? I'll tell you, if I do this, I'll be going kicking and screaming, too! That's the way I was with rads...ugggh! But I did it!
We did discuss the 4 vs. 6, but I can't recall her response clearly as to why 6 - I have the tape and will listen and get back to you.
Thank you for your input!
AA, thank you for the encouragement. I did ask her if OA was indicated in my case, and she said that it wasn't. Again, I will listen to the tapes and if more detail was provided on that from her, I will share it.
My flight was delayed tonight, so I didn't get into the airport until 11 p.m. DH is on business, so I had to find my car in the lonely parking garage late at night. Then, when I drove it home, the "check engine" light was blinking the whole way. Good grief! What a LONG day. I'm too wound up to just hop into bed...so reading and replying late into the night!
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dancetrancer,
I hope you get a good night's rest even with the somewhat disappointing new challenge of more extensive treatment and unknowns in regard to neuropathy. I admire your thorough exploration of your options and your comprehension of the complex issues involved.
I wonder what the factual basis is in regard to her opinion about OA for you as a young woman, given that the trial comparing it (plus trastuzumab) to current treatment is still apparently in progress and no one seems to have any definite results from it yet one way or the other.
A.A.
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dancetrancer - I did 6 TCH and I have no long term neuropathy. I did have some funny fingers on the left hand for a while but they are fine now. The first treatment is bad, but once your SE's are established, meds can be prescribed to take care of them. I had bad leg pain a couple of days after the chemo and it was fixed with prescription pain meds and would you believe a daily claratyn tablet. For the next treatment I took these before the onset of SE's was due and was fine thereafter. I also had bad stomach grumbles - fixed by taking Somac. I never threw up (unlike poor LadyGrey). I was given dexamethasone to take the day before, the day of and the day after chemo. I was also given Emend and Onadestron. Another big mistake I made was to get constipated - we won't go there. I started taking sennacot the day of chemo so that would not be an issue after my first bad experience.
The one thing that really annoyed me was that my onc didn't give me scripts for the possible SE's and I had to experience them first.
I'm glad you liked the onc - good luck with your decision.
Sue
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