Is chemo always necessary for a recurrence

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bennybear
bennybear Member Posts: 326
edited October 2018 in Second or Third Breast Cancer

Just visited oncologist, I thought because I am 8 years out and it was small around 1 cm and clear lymph nodes I would just need Arimidex. I had a UMX. But they are recommending chemo because of the recurrence. I have not had an oncotype done, and if it is a recurrence they don’t usually do it. So some confusion. thoughts?

Comments

  • wallan
    wallan Member Posts: 1,275
    edited July 2018

    hi BennyBear:

    I am sorry to hear you are facing another bout of BC.

    When I had my second bout, I was dx with stage 1. I had another mastectomy. I had negative lymph nodes.

    I am only on Arimidex. No chemo, no rads needed. I did have oncotype test which was 14.

    I was stage 3 with 2 positive nodes last time. It had been 13 years when I "recurred"

    Wallan

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2018

    I would just do anastrozole. I would consult another oncologist.

  • ksusan
    ksusan Member Posts: 4,505
    edited July 2018

    It might depend on whether it's a new primary cancer or a metastatic cancer.

  • Mom-mom
    Mom-mom Member Posts: 44
    edited July 2018

    Bennybear: First, I’m sorry about your recurrence. It sucks.

    I made it 9 years before recurrence and UMX last year. My BS led me to think no chemo, but I had it in the back of my mind. My Onc redid my Oncotype and it came back higher than expected (26) and higher than my initial cancer. That oncotype score and because I had recurred while faithfully taking tamoxifen for 9 years, my case went to the tumor board. 2 voted for chemo. 2 voted no chemo. ($&!?) That left me as the decider. I have 12 year old twins and decided to do chemo, but it really could have gone either way.

    Can your onc order an oncotype or mammoprint ? That may get be you some additional info about the benefits of chemo in your particular situation.

    Hugs to you. Whatever you do will be a right for you.


  • nonomimi5
    nonomimi5 Member Posts: 434
    edited July 2018

    mom mom - what was your first Oncotype score? How old were you at first DX? I am so sorry you had to go through it again.

  • bennybear
    bennybear Member Posts: 326
    edited July 2018

    thanks, so much to take in. I have asked about oncotype but because they think it is a recurrence apparently oncotype is usually not done. They are asking for another opinion on the pathology to assess if it is a recurrence. Appreciate all the comments, As I was just expecting the Arimidex and this has thrown me for a big loop!








  • Mom-mom
    Mom-mom Member Posts: 44
    edited July 2018

    Benny: My onc had to push with insurance for the oncotype, but I was told anything after 5 years is considered a new cancer, not a recurrence of the old one. And my oncotype results were different than 9 years ago, which I would not have known but for redoing the Oncotype. In 2008, my score was 18 (I think). Just above low. Last year, my score was 26. And the ER and PR numbers were different. Of course, the TailorX study is out now


    Nonomimi-I was 43 at first diagnosis. 52 at 2nd diagnosis.

    Peace to you and yours,

    M

  • bennybear
    bennybear Member Posts: 326
    edited July 2018

    thanks Mom Mom, I will push for oncotype as I have not had it, I would like also to know chance of chemo working. I am just wondering what is standard for a local recurrence after such a length of time with no lymph node involvement. I haven't been on any hormone therapy, so that is also something I can do as it it estrogen and progesterone positive. Wondering if the tailor study applies to a second time?

  • KBeee
    KBeee Member Posts: 5,109
    edited July 2018

    A very well respected nationally known Cancer Center would not do an Oncotype on my recurrence because they were sure it was just an isolated local recurrence that was not aggressive. My gut told me otherwise. I saw a new local oncologist and he ordered an Oncotype at my request. It came back very aggressive. A second tumor was also found, so do not let them be so quick to dismiss Oncotype

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2018

    My sister had a recurrence after 4 years on the chest wall near her MS scar. She didn’t have chemo or radiation the first go around. Only Arimidex. Her Oncotype score was intermediate.

    Idk if they ran another Oncotype test. My sister lives in another state and is very close to the vest. Her doctors wanted her to do chemo but she is allergic to the drugs so she did 33 radiation treatments. So far, so good.

    Good luck ladies! Btw I’m 7 years out but I know there are no guarantees.

    Diane

  • JoE777
    JoE777 Member Posts: 628
    edited July 2018

    Depends on type of cancer and location of metastasis. Mine is in lower back-sacrum, 5 tumors- radiation to relieve pain and shrink tumors pain was relieved after one treatment-had ten. Now back on femara, kisqali and zometa infusions suppressing hormones and cleaning up calcium and blocking cancer cell division. Got my first report of cancer reduction. Not on the heavy metal chemo. HR

  • Piksie
    Piksie Member Posts: 161
    edited July 2018

    I have a local recurrence after 2.5 years of Tamoxifen. Oncotype was 17, 8, and 3 (three separate tumors) the first time so no chemo or radiation. This time, it is at the scar line of the UMX and in my lymph node(s) (# unknown - I'm seeing the surgeon today to get my surgery plan.) I thought the lymph node involvement would surely mean chemo this time, but MO says Arimidex and Zoledex because of the same ER+/PR+ status, and radiation. Statistically, the damage that comes with chemo yields very little, if any, statistical difference, assuming nothing new comes up during surgery like it did last time.

    bennybear, I think a second opinion would be worthwhile. Hopefully it would come with a massive amount of new information and/or justification for chemo.

    Good luck!

  • KBeee
    KBeee Member Posts: 5,109
    edited July 2018

    Piksie, You may want to ask for oncotype just to be sure. My first MO said the same thing, but the second opinion wanted to know for sure, and sure enough it came back aggressive. Oncotype the first time was 16 (long story, but we did not know that before starting chemo...they did it to decide between 4 and 6 treatments). The second time it was 40. Radiation is definitely the best weapon for the local recurrence, but especially if it is in the lymph nodes, it's just not behaving, so being sure is important. Just a thought to consider.

  • Piksie
    Piksie Member Posts: 161
    edited August 2018

    KBeee, sorry, this one got away from me. I agree! I asked specifically about it in our last meeting, and MO said no Oncotype, but I do definitely intend to push for it. MO is extremely conservative with chemo. BS is as well, but she is not ready to rule it out this time (and she's the reason I moved my care to UCSD; I'll take her guidance, even if it sucks...)

    Hope you're all doing well!

  • KBeee
    KBeee Member Posts: 5,109
    edited August 2018

    Piksie, Do not hesitate to get a second opinion. The first MO who told me no, and refused Oncotype, is at probably the most well known, well respected Medical Center in the upper midwest. They are very conservative about chemo though. I wanted more opinions, because no matter how prestigious the institution, at the end of the day, they are human, and they do not have all of the answers. I could not wrap my head around why they would not use a readily available tool to asses the need for chemo, and were just assuming this was just an isolated unaggressive local recurrence. I was SO glad that I sought another opinion with a doc who's gut, like mine, felt that this was not behaving, and was likely more aggressive. He suspected the Oncotype would be high, but we were both shocked at how high is came back! Once presented with that information, the first Medical Center agreed that chemo was necessary. Never under estimate the value of a second opinion. Hopefully they'll do the Oncotype and determine it to be low risk, but any doctor should be supportive of you seeking a second opinion. You do not want to expose your body to chemo unnecessarily, because it has its own risks, but you also do not want to skip it if warranted. My local doc and I had the same opinion of mine (and as I said...I had a strong gut feeling mine was aggressive) ....... this is a cancer that statistically, should not have come back. It did not behave. It also did not behave in that it came back while on Tamoxifen, so it's possible it is resistant to some anti-hormonals. I did not want to put all of my "eggs in one basket" relying just on an AI. Chemo was my insurance plan. There is still no guarantee, but I know it's been treated appropriately giving me the best chance of avoiding metastasis. I will never ask "what if".

    If your oncotype comes back low, you'll know with great confidence that skipping chemo was the most appropriate option. You'll never have the nagging "what-if".....

  • Piksie
    Piksie Member Posts: 161
    edited August 2018

    Thank you, KBeee. Unfortunately, I have the same gut feeling. I was told a 3% chance of recurrence, and here I am. And like you said, it's not behaving! It's in my lymph nodes, and God only knows how many at this point. Pains in my left chest that I've been writing off as weight training issues are now making me very anxious about what they are going to find under this foob.

    You're right, I won't stop until I get an Oncotype. I'm optimistic that it won't be a battle, though. Fingers crossed.

  • BC2chick71
    BC2chick71 Member Posts: 10
    edited October 2018

    My onco type dx score is also 14. Just had lumpectomy today for recurrence after having DMX with complete reconstruction in 2016. I found the lump. Less than 1% chance of this happening.

    They are recommending rads this time. I didn't have chemo or rads last time.

    They say my tamoxifen didn't work. So weird.

    I'm nervous about chemo.

    Blessings y'all!

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