neoadjuvant hormone therapy sisters

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ayr1016
ayr1016 Member Posts: 228

I know there has to be some ladies out there on the board that has either been through, going through or will be doing neoadjuvant hormone/endocrine therapy (I have chatted with a few via message, yay!). Please join me here to give/receive support ~ I would really like to connect with others who have gone through this process. So many go right to surgery. Here I am 3.5 months after diagnosis doing my hormone therapy :) I tried looking up some threads for this and did not find what I was looking for.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2016
    Hey - nice to find another sister taking this approach! I did 7 months neo-adj. Femara. I'll see if I can figure out some of my threads from last year and send you links over the weekend.
  • Xyzeng
    Xyzeng Member Posts: 13
    edited April 2016

    Nice to see this thread! I'm doing neoadjuvant chemo and hormone therapy concurrently. Well, I've started on Lupron anyway, with my first week of Abraxane, and am waiting for Femara. I'm on my third week of treatment now.

  • JSwan
    JSwan Member Posts: 81
    edited April 2016

    I did neoadjuvant anastrozole for a year and was able to have a lumpectomy as a result.

  • ayr1016
    ayr1016 Member Posts: 228
    edited April 2016

    So happy to find you all!

    Hopeful82014 Any links to other threads is great. :) So glad you responded!

    Xyzeng I am doing Lupron as well. However, I just got the news they are doubling my dose since my estrogen levels are still higher than what my MO wants them to be. I'm bummed about it, because I'm pretty sure the Lupron is giving me my side effects and now I wonder if it will increase the SE.

    JSwan My MO told me 3-4 months, but I think it is going to be more. It has softened in 2 months and it is harder to find, but I have not had a scan yet, so not sure about size shrinkage yet.

    I've got questions for everyone, if you would not mind answering :)

    I know that this is a good treatment plan for me. But, I am finding it (mentally) hard with the waiting. Did (or do) any of you?

    I have experienced pain in my breast with the lump since starting on treatment (no pain prior to diagnosis). I have asked my doctor and she said that it is my body reacting to the meds killing off/fighting the cancer. Did anyone else feel pain? It is kind of like zaps, but there is also discomfort if anything pushes up against that breast side as well.

    How often did (or will you) get scanned for progress?

    Why did you (and your doctor) decide neoadjuvant hormone therapy?

    Did you friends/family find it difficult or did/do not understand this treatment option?

    My answers are: I will have my 1st scan since starting treatment sometime this month. My doctor said I was a perfect candidate for Neoadjuvant hormone therapy because my ER+/PR+ was so high and my tumor seems to be slow growing and lazy. My friends/family can not really wrap their minds around why I have not had surgery to get it out already. It is hard to chat with them sometimes because I literally still have cancer (in me) and they are more familiar with the concept of having surgery first kind of treatment.

  • ayr1016
    ayr1016 Member Posts: 228
    edited April 2016

    JSwan also wanted to say that is great you had a lumpectomy as a result. My dr said I could have a lumpectomy as is or have a better result with it shrinking. She also said that we can "see" how my cancer reacts to the Tamoxifen/Lupron as a result as well and get a better understanding of how much the hormone treatment will work for me in the long run.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2016

    Angela , you asked:

    "I know that this is a good treatment plan for me. But, I am finding it (mentally) hard with the waiting. Did (or do) any of you?

    I have experienced pain in my breast with the lump since starting on treatment (no pain prior to diagnosis). I have asked my doctor and she said that it is my body reacting to the meds killing off/fighting the cancer. Did anyone else feel pain? It is kind of like zaps, but there is also discomfort if anything pushes up against that breast side as well.

    How often did (or will you) get scanned for progress?

    Why did you (and your doctor) decide neoadjuvant hormone therapy?

    Did you friends/family find it difficult or did/do not understand this treatment option?"

    Yes - I did find the waiting very hard because there was so much uncertainty and so much riding on the results. However, I was happy to deal with all of it because I came out of the experience knowing how well Femara worked for me - it's not a vague concept or a hypothetical, which I think will make it easier to face the prospect of staying on it for at least 10 years.

    I would really advise journaling, mindfulness experiences, yoga, exercise, support groups and the help of your nurse navigator in dealing with the wait. If it would help to take a low dose anti-anxiety medication or anti-depressant, explore that, too. Get out and have some fun and give yourself breaks from thinking about it. (I know that sounds odd, but sometimes I would just schedule times to worry - and if I found myself doing so in between, would say 'oh-that's not on my calendar right now. I'll think about it at 5 o'clock' (or whatever). If you can, take some classes in something you've always wanted to do - it really helps divert your mind!

    Pain - I did have tenderness in my lymph nodes (which were affected) and residual pain in the breast from biopsies.

    Scans - I had one repeat biopsy after 5 weeks to check the Ki-67 and then US after 4 months to review the tumor and nodes.

    Why this choice? - My surgeon is part of a clinical trial using this approach and offered it to me (off-trial, for insurance reasons) to see if we could avoid an ALND, as well as gaining info on my response to AIs. My ER & PR were also very high, so I was a good candidate for this.

    In retrospect I truly appreciate that it gave me the opportunity to actively treat the cancer, shrink the tumor and mostly clear the nodes, and yet have surgery and follow-up treatment on my own terms (timing). It allowed me to take advantage of some opportunities at work and with my family that I could not have if I had plunged into surgery, etc., right away after diagnosis. Most of all, I appreciate knowing that Femara is very effective for me, at this time.

    Friends/family - My family was extremely interested in this approach and very supportive. A few of my friends were, too, but some just weren't that interested in understanding what/why I was doing this. (Great friends, right?) My friends who had had cancer (of any sort, not just breast cancer) were very intrigued and supportive.

    If you have other questions or simply want support, speak up. I know that it can feel a little lonely when you're following a different treatment path - that's the hardest part about it, I think, but I also believe it's well worth the effort involved, and probably the way of the future for many women.


  • Xyzeng
    Xyzeng Member Posts: 13
    edited April 2016

    Hi Angela

    I've seen 2 BS who both recommended neoadjuvant chemo, one before I was even biopsied, so I gather that's now common in Singapore. Most of my friends expected me to do surgery first. After my PET-CT we found out that I have an inoperable supraclavicular node that can only be cleared with neoadjuvant treatment, so I didn't have a choice really.

    My MO thought neo HT would be a good option for much the same reason as yours (I am ER+ 100%), but also felt that it alone would take too long (estimated 1 year). I'm relatively young (39) which made him think that it's likely my tumour would also respond to chemo. Doing both simultaneously would halve the time. He could already feel my lymph nodes softening by the second week, so this seems to be right too.

    I do feel pain in my breast, and it's reassuring to know the chemo is working! I've only had one Lupron shot so far so I doubt it's that. I had 3.75 and breakthrough bleeding this week, but he doesn't seem too bothered by that. I should be due for another Lupron on Mon but not sure when I will start on Femara. No serious side effects from Lupron so far so I hope that holds. Chemo already wears me out.

    No scans since I started, but MO does a clinical exam every week before chemo. So far quite encouraging!

    I'm curious as to why your MO has chosen Tamoxifen? I've been reading that AIs are more effective, though with more SEs.


  • JSwan
    JSwan Member Posts: 81
    edited April 2016

    ayr1016 -- I was monitored by ultrasound and/or MRI every three months or so. My breast surgeon in Colorado offered me the option to try the neoadjuvant therapy for a few months and see how things go. She (and my other doctors) were not optimistic that my large tumor would shrink enough to allow a lumpectomy (20% chance at best) but I wanted to give it a shot. The tumor kept shrinking so we continued for a full year before I had the lumpectomy.

    I was, as they say, "motivated" so waiting for surgery wasn't that hard for me. Plus, I knew that I had been living with my slow growing tumor for some time already so I didn't feel an urge to rush to surgery to get it out. My family and friends didn't entirely understand, however. My poor mother -- a retired nurse who lost her sister to breast cancer -- was then in the early stages of Alzheimer's and kept asking me why my doctors weren't doing anything to help me. But as time went on people got on board and were cheering me on. I'm sure it will be the same for you.

  • ayr1016
    ayr1016 Member Posts: 228
    edited April 2016

    Hopeful82014 Your reply got me emotional (in a good way :). I was thinking "YES! YES!" to so many things you wrote. I do (did!) feel alone in this form of treatment. Yoga is something I miss. I have not practiced yoga in a very long time. I love to journal, but I am struggling with it. Need to make that a priority. You are right. I feel like I am more in control of time frame when it comes to surgery. I can prepare better with work and my kids. Everything was so rush...rush..rush....in the beginning. I was overwhelmed and more willing to accept what was thrown at me because I was scared out of my mind. I feel more self assured (most of the time anyhow lol) about each step. The fact that I would see how my cancer reacts to the medications was the thing that made my decision to do it. I am a don't believe it till I see it kind of gal and I would have always been wondering if the meds were doing the job had I not gone this route.

    Xyzeng I assumed I was doing Tamoxifen because I was pre-menopausal. That is something I will put on my question list for the next visit. I didn't realize other pre-menopausal women were taking AIs and that they could be more effective.

    JSwan Just curious how much your shrank and how large did you start with?

    It is a relief that I have others to talk to about this treatment path. I put this thread as a favorite so I don't miss any posts ;)

    ETA: Added more thoughts to my post :)

  • ayr1016
    ayr1016 Member Posts: 228
    edited April 2016

    New question:

    Did any of your get your oncotype DX score? I got mine, but it was done on my initial biopsy. I know that the actual whole tumor probably gives a more accurate score, but since we are messing with it before it is taken out, the results from the tumor will not be accurate. MO did tell me that what will be important about the tumor left taken out at surgery is the replication rate of the cells at that time.

  • JSwan
    JSwan Member Posts: 81
    edited April 2016

    ayr1016 -- My tumor was about 7cm when I was diagnosed and 2.2cm when it was removed. The MRI right before surgery showed no cancer at all so the 2.2cm residual tumor was unexpected. So much for the accuracy of MRIs. My Oncotype DX score was 16.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2016

    Angela, I was told that the Oncotype is run on the biopsy sample, in situations such as ours, but it wasn't run until after my surgery.

    My Oncotyoe was 20, using the biopsy sample. I suspect it would have been lower using a " treated" sample since my Ki-67 dropped so much on Femara, but that's not really pertinent to the Oncotype; they want to understand the risks associated with the untreated tumor as well as how it responds to treatment. So now I know both, which is a lot more than many women can say!

    Jswan - That's a huge reduction in the tumor - which I'm sure was good news. At the same time, it must have been a real shock/blow to have any of it remaining when it wasn't apparent on the MRI. For me, that's part of the reason we need access to (and insurance approval for) a variety of imaging techniques.

    "Motivated" is exactly how I've described my feelings about this approach. At the same time, not knowing what the actual results would be was very difficult, especially since I think I was the only one on the board using this approach at the time. Everyone else was having their surgeries, getting their results, and moving on to the next step (for better or worse) and I was living for crumbs of info from the follow up imaging, etc. It WAS tough, but worthwhile, even then, and more so now.

  • MMSS
    MMSS Member Posts: 103
    edited April 2016

    I don't hang around these boards much any more but Julie alerted me to this thread and since there aren't a lot of us we need to speak up. It will be 4 years this summer since I was diagnosed with a very large lobular tumor and I was truly panicked. Lobular is hard to pick up on mammography so late diagnosis is common. My greatest fear other than death was having to do chemo and I was fortunate enough to have a MO who had taken part of his training at MD Anderson and this was just around the time that MD Anderson came out with the research that showed that neoadjuvant hormal therapy was more effective on certain ER positive tumors. He told me that I was an ideal candidate and that frankly with my low KI-67 score chemo probably wouldn't do me much good because it is more effective against rapidly multiplying cells.

    I jumped at the chance to do it. I am a nurse and my husband is a physician so reading the research gave us a good bit of reassurance that it was right for me. I also opted for a bilateral mastectomy both because lobular is slightly more likely to recur in the other breast and because emotionally I just couldn't deal with something that might come back and not show on mammography until very late. Also I was 73 and not doing a lot of swimsuit photo shoots. I have never had a moment of regret about either decision. I had a repeat MRI about 3 months after I started the aromasin and it showed the tumor out of the muscle and quite a bit smaller. You could feel the difference and yes it did give me twinges at times while shrinking. They approved me for surgery at that point but I waited a couple of months longer so as to not be having surgery over the Christmas holidays so I wound up with five months of hormonal therapy prior to surgery.

    I am fanatical about taking the medication every day. So far I have NED and am doing well except for side effects of insomnia which I manage with minimal medication and joint pain which I basically just live with because I can't take NSAIDs. Exercise and massage and heat all help. I no longer take anything about life forgranted and don't put off travel and other things that I want to do. Each day is a gift for which I am deeply grateful. Do I still worry-of course I do. Having a serious cancer changes your life forever and you never fully accept the sword of Damocles that hangs over your head for the rest of your life. I find that participating in a weekly cancer support group has saved my life emotionally. I also try to be careful about my diet and exercise but you have to find balance . Life without a couple of squares of dark chocolate a day is not worth living. Good luck to you and what you are doing is cutting edge evidence based medicine. People who don't accept that are not up to date in their research so don't worry about them. Just be glad that you found a doctor who is current. In the support group that I am a part of the women who did chemo have a lot more permanent side effects than those of us who did not

  • Xyzeng
    Xyzeng Member Posts: 13
    edited April 2016

    Angela,

    I don't have an Oncotype Dx score, but it doesn't really matter at this point for me. I had my 4th session of chemo yesterday and my tumour seems to be shrinking steadily. MO thinks it's a result of both Lupron and chemo together. Mucinous tumours are harder to shrink and the response exceeds his expectations. With Femara I hope to see even faster results.

  • daisydaisy
    daisydaisy Member Posts: 24
    edited April 2016

    Hello, sisters! Really, there are not so many on this type of treatment. In my case it is my mom, who was diagnosed with BC in November 2015, ER 70%, PR 40%, KI67 - 60%. It was a 3 cm tumour and one suspicious lymphnode in the armpit (was not biopsied, just considered malignant by appearance). Mom is postmenopausal. By the way, we are in Russia, and many things are not available or not so common here. We do not have Oncotype available (well, it can be done by taking tumour samples to another country, but that's too expensive).

    Interesting, but a lot of research on neoadjuvant hormonal therapy was performed by the Russian oncologist Mr. Semiglazov. I read tons of information on this treatment before I asked our surgeon about it. He said we could try, but a repeated biopsy is required in 2 weeks to see how Ki67 responded (in many clinical trials repeated biopsy may be done in 4 or more weeks, but he insisted on 2 weeks). In only two weeks on Femara the tumour shrank twice, and Ki67 was down to 5%. Basically, it is like an "in vivo" test of treatment efficiency. Only neoadjuvant treatment provides such opportunity. Mom will continue on it for another month or so (about 5 months in total) and then will have surgery. Oh, and they inserted a metal clip in the tumour, too, to be able to find it during surgery. At this time, after 3 months it has turned into something like fibrosis with calcinations (judging by mammo that mom recently had).

    As for side effects, mom is doing relatively OK, maybe more emotional than usual and more tired. Our surgeon says that depending on the tumour pathology after surgery no chemo will be required. I will let you know how that goes. From the information I gathered on this approach, good response to this therapy is a very very good prognostic feature. It is especially good for Luminal A cancers (those with lower Ki67 at the start), but Luminal B (as in our case) seems to respond well, too.

    I also want to mention that in Russia there was a trial to compare efffiency of neoadjuvant chemo and neoadjuvant hormonal therapy on luminal cancers, and the efficiency of neoadjuvant hormonal therapy was not inferior to chemo, at least equal or even higher. http://meeting.ascopubs.org/cgi/content/short/22/1...

    Best wishes to all in this treatment!

  • Xyzeng
    Xyzeng Member Posts: 13
    edited May 2016

    Hello. I hope everyone is doing well.

    After 8 weeks of chemo and femara the shrinkage appeared to have stalled so I had an ultrasound which showed that the tumour and lymph nodes have responded. It was a relief. The shrinkage was only about 20% but I knew it would be challenging given the mucinous nature of the tumour. Hoping for further improvement in the weeks to come.

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