< 5 mm HER2+ IDC...why NOT chemo???
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Dancetrancer - Almost a year out now from Taxol and I don't think I have any lingering effects. Over the course of the twelve weeks it was amazing how much things would change. I had infusions on Fridays. Always tired on Friday afternoon most likely due to the benadryl they administered.
The first week on Saturday, I was out and about. Very tired late Sunday and early Monday. On Tuesday I had bone aches so bad that I could not sleep.
The second time ditto for the tiredness. Very little bone ache.
On the day of the third treatment, day 15, hair started really filling up the hairbrush. I had to clean off the chemo chair when I was done because it was covered in hair. Had not lost any detectable amount until day 15. Tiredness moved up to Saturday afternoon and Sunday with a general weakness on Monday.
Then just as I got used to the pattern, everything changed. No more bone aches. Tingling feet that made it hard to walk on Friday nights at home. Tired on Thursdays. Nosebleeds started.
I was told I would be more tired by the end but maybe because I was coming through it ok and could see the end, I felt more energetic and less weak during the final few weeks. I actually wondered if the pharmacy had changed my dosage.
The tingling would always clear up within 48 hours. After the last treatment, I had tingling fingers but that cleared up within a week.
Never had nausea but I was always good about taking my anti-nausea medicine and drank lots of fluids.
As for hair - it only ever was about 90% gone. It wasn't that smooth, shiny bald you see with some people. Body hair, except eyebrows and lashes was all gone by the end. The funny thing is the brows and lashes fell out 3 weeks after I finished taxol and then again about 8 weeks later. It has to do with their slow growth cycle. By 7 months after last taxol, I went out without a wig.
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Thank you VERY much maja for describing your experience so thoroughly for me!
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Hi dance
T1a here...no chemo, no herceptin, no recurrence. Radiation and Tamoxifen...2 year cancerversary next week
All the best to you. It is a VERY tough decision!
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Thanks for the link, DT, That was the info I needed.
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Hey Dancetrancer, I was just checking in with you to see how you are doing. I had my 3rd treatment this week and was talking to my oncologist. He was telling me that he has had patients he put through chemo because they requested it even though their tumor was small because they felt better in the long run doing it. What a hard decision to make. I'm glad I had the oncotype done because it took that decision out of my hands. I've been thinking about you. You have been doing some good research. Good luck with everything. Hugs, Judy
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Thanks KC and Judy for encouragement and hugs! And KC...yaayyyyyy!!!! Congratulations on the 2 year anniversary!!!
I'm doing "ok"...kinda trying to put myself in the place of how I'd feel if I don't have any treatment. Thinking about going without treatment kinda makes me feel sick in the stomach. I don't know how to deal with it. What if I don't get treatment and this comes back? How the heck do I live with that fear? I know it's a common question on this board...I don't know. I just feel kinda "lost".
Judy, what did your onc say about those patients he put through chemo just for the peace of mind? Did he give some type of opinion on whether he felt that was the right thing to do or not? Or was he sad that he had to do it? Is emotional piece of mind worth the chemo risks?
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Dancetrancer,
My onc said he did the chemo for them because it helped them sleep better at night knowing they did everything they could, and he understood that. He said he's also had patients go the other way and say they felt better not doing chemo.
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Thanks Judy. It's nice to hear that he takes his patient's emotional health into consideration.
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In our society, those HER2 positives who have a way to get coverage for the vastly expensive medications are generally able to pick the onc and treatment that they feel most comfortable with. Only you really can know what that might be, and it can take lots of soul-searching.
I would have done just about any alternative to chemo, but that is ME. Herceptin wasn't available then. For whatever reasons, my onc lied about the comparison between the treatment I preferred and asked about, and at that time also failed to tell me about the Herceptin trials when I specifically asked about clinical trials. Oncs do have that power and mine, a highly respected one, used it. I personally think that stinks to high heaven, and wonder just how often it happens, since he is one of the most respected ones.
Ten years later I still have a hard time with knowing I was prevented from having honest access to information to make my own free choice, and so I do think it is rather valuable to be able to choose what "feels" right to you and move on.
A.A.
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Thanks alaska.
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AlaskaAngel, your profile says you were diagnosed in December 2001. The early Herceptin trials were mostly for only node positive patients so you wouldn't have been eligible for them. BCIRG 006 was open to node negative, but IIRC, they started out only enrolling node positive and later broadened it to include node negative but I think in that case the tumore had to be over 2 cm. They were enrolling 2001 to 2004 so it might have been open to only node positive at the time you were enquiring.
I also think that oncologists are usually only likely to tell you about studies that their group is participating in. I doubt that they even know all the studies that are underway at any given time.
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It would be so nice if cancer treatment came with a guarantee wouldn't it?
I did just read an interesting article while looking around here and thought you'd might like to see it:http://www.breastcancer.org/treatment/targeted_therapies/new_research/20101129b.jsp
We are one of the rarest forms of bc at t1a and her2. Only about 10% of HER2+ ladies get diagnosed under a cm, which means not much is known. It's even more rare to be t1a her2 because most ladies under a cm are found t1b. When I was diagnosed, the only other woman I found in my shoes was Jenn (Sandstrom). Now, more and more t1a's are surfacing, which is a good thing because hopefully they'll get a definitive answer on how to treat us sooner than later. One doctor told me we will be the statistics of the future. Grrrrreeeeeaaaat! It is not very comforting when doctors who treat the disease don't know all of the answers, but that's the nature of this beast. The only thing I can say for myself is that I don't have any regrets with my decision. We all do the best we can with the info presented to us and are in the fight together. You are doing your homework and will make the best possible decision for yourself. I don't think any of us with bc are ever worry free after diagnosis. But, each day that passes does get better.
One thing to keep in mind while researching the internet is that you will always see worst case scenarios, so just remember that while recurrences happen, many more women go on to live recurrence free lives and don't bother posting anymore. I, for one, have to take breaks from these boards because the posts I read can really mess with my mind. But, I am glad to have read your story. If you need anything, feel free to PM me and I will send you my e-mail address to stay in touch. Also, I have posted some links to articles that I found in the past that were helpful to me. Feel free to look through my past posts and peruse some of the info
Hugs and best wishes!
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KC thanks for the post. I am 1a HER2 as well. These boards do mess with your mind. It took me a few nights of not being able to sleep to figure that out. At 4mm I received a second opinion at the Mayo Clinic and have made peace with my decision to not do chemo/herceptin.
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bluedasher,
Yes, there was only one of the trials I would have been able to participate in. But it was a wash anyway because he left me to "make the decision" about my treatment without ever telling me I was HER2 positive. It is confusing enough at time of diagnosis without being sabotaged by the "specialist". I do think my situation was uncommon, although more common than it is now with the wider info available on the net.
A.A.
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AA - What do you think your onc's motivation was for sabatoging you?
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My taxol/herceptin was a little similar. I had decadron instead of benadryl before infusion. So I was wired for the rest of the day. Lots of energy. Wide awake all night. Felt good the next day. Day 3 and 4 was tired but manageable.
Neuropathy wise, I has slightly tingly fingers and toes and they were freezing at night.
Never had nausea. Occasionally felt a little queasy. Took a zofran and was fine, but it was rare.
Did have a dry, slightly bloody nose, but it was never a nose bleed.
Very mild joint pain.
Intestional issues throughout. It was either one way or the other....never just normal.
Hair thinned, but i made it to about week 8 without wearing a wig at all. I was glad I didnt panic and shave it early. I had lashes and brows throughout, and then lost them three weeks after but the new ones were coming in already.
I am exactly 7 months out from chemo. I could go wiyhout the wig if we could figure out some kind of style. Lol. It just is not attractive to me.
You will make the right decision for you. A year ago, I was sure I wouldn't be able to make any kind of educated decision. Now, I feel like I could be an assistant to my BS, my PS, and my ONC. They seem to like that I come in with questions and studies. -
orange1,
I believe my onc favors chemotherapy for just about all situations. At the time I was scheduled for an MRI prior to recommendation for treatment, and I asked whether I should make a follow up appointment or not. My onc would not give me a yea or nay even for that, so no follow up appointment was made. When the MRI showed no problems, I flew home to Alaska thinking I was in the clear. My onc never conducted any risk/benefit review with me. I specifically requested one from my onc at a later date for some understanding, and there was zero effort made to provide it at the scheduled in-person meeting with my onc. No discussion of the existence of Adjuvant Online, or percentages, nothing. When I obtained the oncologist's clinic note from that meeting it consisted of a single line: "Went over basis for diagnosis and treatment with patient thoroughly." I have not been back to see that oncologist since then.
A.A.
P.S. This onc makes sure to personally deal with ALL contact. I have never had a doc before who did not allow nursing staff to answer simple questions such as "Do I need a follow up appointment?" The nurses could take messages ONLY.
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KC, I can totally relate to why you'd need to stay off the boards - I'm sure that is another reason why we don't see as many t1A's posting that they didn't do treatment. It would just keep fueling the fear to keep hearing about it and others being treated, or recurrences. I so appreciate you and minnshark staying on the boards and posting on my thread!!! It can't be easy to read all the stuff being posted - I know it's not easy on me! And I'm the one posting it! LOL Indeed, there are so few of us...it is so great to meet others with the same diagnosis and be able to share all the fears, questions, unknowns!
I've read that link before KC, but I've read so much stuff, that it all runs together in my head. So it is good to review these things! The last line says: "Treatment decisions should be made with the awareness that "the risk of recurrence in T1aN0 cancers is not well defined, and the benefit of any adjuvant therapy remains uncertain". My docs so far have said no b/c the risks of doing chemo/Herceptin is well known, but not much is known definitively about t1A's risk nor potential benefit from treatment. I can absolutely understand where they are coming from. What I don't understand, is not being given a choice, since there are so many unknowns, and it could go either way.
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Fluffqueen - was the neuropathy transient or permanent? I would say that is the biggest concern I have with the Taxol (from what I've read so far). I'm worried about permanent neuropathy. I dance, and this could significantly limit my ability to do that.
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I dont have any residual neuropathy. I do full on yoga, etc. I never had any numbness, just a little tingly in the tips. I have a little achy joint pain but I think that is driven by tamoxifen now. Tylenol helps, and exercise keeps it at bay.
The onlything I notice is that it seems my fingers get cold easier. -
Thanks fluffqueen!
I wanted to share MD Anderson's protocols for breast cancer treatment (I put this on my other thread, too, so sorry for the repeat if you are on both). They are the ones who did the studies on t1A,b recurrence rates. If you look at page 2 you can see if you are node negative, tumor < = .5 cm, the recommendations are:
1) no adjuvant therapy or
2) consider hormonal therapy if tumor is hormone receptor positive
3) consider trastuzumab-based chemotherapy if HER2 positive
I plan to take this with me to my next two onc appts along with the research papers and will ask them if they would consider consulting with MD Anderson (if that is posssible) on my case to determine if I am high risk enough to require chemo/Herceptin.
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dancetrancer-that sounds like a good idea. My onc believes that if you are her2+, you should have herceptin no matter what size. So did one of the other oncs I interviewed. With me, I wasn't in the the gray area for herceptin.
Had I not been her2+, they would only have recommended tamoxifen. Such is my luck. -
dancetrancer - looking forward to hearing what the other oncs have to say - keep at it.
Sue
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dancetrancer-thanks for the MD Anderson protocols! Have always wondered what they would recommend as far as chemo. I have been following your journey through all the info from the beginning! Good luck with your ultimate decision...
Susan
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Someone just posted this document on another thread:
There were I think about 40 or so members (most were from Europe and USA, not all were present for voting). They voted on various controversial issues/topics on treatments.
The Panel unanimously supported the use of 1 year of trastuzumab as standard adjuvant treatment for patients with ‘HER2 positive' disease, and the majority were willing to extend
this to patients with pT1b, but not pT1a pN0 disease.And if you read the more detailed summary here you will see they give details of the discussion surrounding t1A's on page 5. It says that the majority (61%) would not treat t1A tumors, but 79% would treat t1B tumors.
This international consensus panel information is helpful to me - makes me not feel so panicky about being given a "no" recommendation on treatment. However, that's not an overwhelming majority, so one can understand clearly the variability amongst recommendations we all receive.
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Dancetrancer,
I want to thank you for posting on this topic and continuing to share all of your research with us! Being a Stage 1b, I've found it very hard to find information specific to my diagnoses. I went from one doctor telling me I needed no other treatment than surgery, to my current oncologist recommending Chemo, Herceptin, Rads and Tamoxifen. Us, 1a and 1b, girls are out in left field by ourselves. Although you speak specifically to the 1a group, you've also helped this 1b girl feel a little bit better about my treatment plan.
Thank you so much!
Kimberly -
Hey Kim! Thanks so much for the thank you!!! It's definitely hard to find info on this topic. The t1ab's gotta stick together and learn from each other! So glad to help, and I agree, it seems pretty definitive that t1b's should get full treatment!
So everyone, I had my first 2nd opinion appt today with a new onc. He had a very strong opinion that I needed chemo and Herceptin. He also said, if someone recommended Herceptin alone, he wouldn't disagree with that either. He also said he'd be willing to give me Herceptin alone if that is what I wished. He said the only wrong answer was someone telling me I didn't need any treatment. Gee, guess we know where he stands on this issue. Wow! What a difference of opinion!
He wants to run the oncotype on my tissue. This is interesting to me, b/c the other facility said it was too small to run, and I've always read that the HER2 trumps the onco score...however...if your HER2 tumor is small, and they aren't recommending tx based on tumor size, why wouldn't the onco be important to run, just to make sure? I mean, if the tumor is tiny, and your onco score is very high, do you just look at the onco score only as your decision point? I found another thread on this and posted there, but I am curious to hear y'all's feedback on that issue.
He said preferably he would like to give chemo prior to rads, b/c of course addressing the risk of distant recurrence is greater than local recurrence. I expressed my concern about already starting rads today, having the whole simulation done, etc., etc. He said we can get the onco done and then if necessary I could start tx while on rads (although I'm nervous about that b/c I've heard that could be harder on the heart) - or - I could wait until after rads if I prefer, knowing the risk of delaying treatment.
I find this all so very fascinating - such huge differences in opinion. Amazing how our lives depend on doctor's opinions in this situation, since the research is limited. This is why I am so glad I've done my own investigation, b/c now I can sit back and decide for myself. NOW I have a choice, and I feel so much better! I will wait to get the onco results back and see if that affects my decision or not, and proceed from there. I feel a huge weight lifted, just knowing that I have options now.
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Dancetrancer - he sounds like a good doctor.
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Dancetrancer - I agree us T1a/b's need to stick together. I know I'm not Her2+ but I bookmarked this thread and check it regularly. I get a lot of information here and hope you don't mind me being an "honorary" member of your thread. I also found it very difficult to get information about chemo and small tumours when I was doing my research. I know it's more common to have chemo before rads but my SIL had endometrial cancer 4.5 years ago and she had rads first and then chemo. This is because she was getting additional opinions on her tumour and they didn't want to wait while the chemo issue was being sorted out.
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dancetrancer-I had the greatest conversation with my onc today. He wasn't too busy so he sat down to chat. Tried to get him to do a pet scan as part of my usual conversation. we started talking about the her2 component. He is reviewing the study that walter reed is doing and sending my records to Wake Forest for participation.
As we talked, he discussed his protocol of taxol/herceptin for me and how that wasn't the norm. However,he said he sees no sense in following the standard protocol just because of fear of trying something different. He mentioned that he printed that study you linked to above (he was at the conference) and gave it to several oncs around here who just don't want to try anything different.
He then talked more about the her2 diagnosis...went and got his lilttle hand written sheet that breaks the breastcancers down into sub categories and reviewed his thoughts with me. Said he believes that down the road, Americans will have to start following more of the protocol being done in Europe. I told him the taxol/H was done a lot more in Europe and he said that was true.
We also discussed the t1a and t1b, and tumor sizes and their effect. He said he is still of the belief that if you have anything that is her2+, no matter the size, he would treat it with herceptin. Said there is just too much risk in his opinion. He still feels that until someone tells him otherwise, he thinks it works better with chemo, although he thought that might change with smaller tumors down the road. He will give just herceptin if they insist.
Part of the conversation was due to the fact that he keeps telling me I am a low risk for return, and I keep arguing with him that he shouldn't say that. So he went and got his paper that shows his breakdown based on all kinds of the pathology. Told him if he had reviewed that with me months ago, I might feel a little better.
Some of this is just his own thinking, but he was trained at the nchi, and is a very smart guy. I told him I have decided to trust him almost completely. He just laughed.
Not sure if this helps you any, but I couldn't believe he just brought that study up out of the blue and we had just looked at your link.
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