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How to tell if it is a new primary or local recurrence?

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cathy67
cathy67 Member Posts: 411

Ladies,

My first diagnosis was in 2019, lumpectomy plus radiation, then hormone therapy without chemo. Now after 2 years 8 months disease free period, there is a 5mm suspicious nodule, I just got biopsy today.

I am studying how to handle this one if it turns out bad one again. It is 5x4x5mm on ultrasound, same side as last one, but not in surgery area, at least 6cm distance to the original site. If it is, is this a 2nd one, or a local recurrence? I must know it, cause I found NCCN guideline does not include this info, and local recurrence's recommendation will be mastectomy. But if it is a new primary, then 5mm won't need mastectomy, another concern is that, I heard radiation can only do once in life time? Is that the reason lumpectomy can not be done again? My cancer was on right side, I don't need to worry about damage to heart, and I did very well last time for radiation.

Any comments welcome! I still prefer lumpectomy otherwise I won't ask this question.

Anybody experienced two times cancers but still keep breast?

My appt with oncologist is May 13.

Thanks.

Cathy

Comments

  • gb2115
    gb2115 Member Posts: 553
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    I had a same side recurrence and although the hormone receptor percentages were slightly lower than the original tumor, because it was at almost exactly the same place they determined it was a recurrence (rather than new primary), though for awhile the surgeon was calling it new primary. But oncology said the original cells can mutate to change their percentages.

    Anyway, either way I was told it needed to be a mastectomy because radiation wouldn't want to treat me twice. The surgeon said she would do it if I wanted, but statistically a third recurrence would be much more likely with a second lumpectomy and no radiation.

    I got a mastectomy.

    Sorry you are going through this.


  • cathy67
    cathy67 Member Posts: 411
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    gb2115,

    Thanks.

  • salamandra
    salamandra Member Posts: 745
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    I asked my radiation oncologist whether taking radiation would mean that I would not be able to have it again in the future, if I had a recurrence. He said that there is a lifetime limit, but I wouldn't have come close to reaching it based on the dosage he planned for me, and that I would be eligible for radiation again (at least, with regard to radiation safety). A hypothetical is different than the actual scenario, but I think you need to speak to the radiation oncologist to rule it out rather than making assumptions.

    Crossing my fingers for you that it's not malignant!

  • cathy67
    cathy67 Member Posts: 411
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    salamandra,

    Thanks for the info! You are so thoughtful, you asked this question in year 2018!

    My surgery margin was close at that time, following guideline they offered 4 booster to the cancer area, plus 16 whole breast radiation, in total I got 20, don't know if already reached the limits.

    So grateful for your comments, will definite write down into the question list to the oncologist, however, I do do help those won't be useful.

    Cathy

  • cathy67
    cathy67 Member Posts: 411
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    salamanda,

    I just read through all my old documents, the radiation document does not include the details. However, I think it did not reach the limits definitely, cause I did 16 whole breast sessions then 4 boost sessions for the cancer area. So, at least, for all the other areas, can do additional 4 boost sessions, just don't know how many normal sessions those 4 are equal to. The new site is 5cm at 9:00 o'clock, the old site was 4.5cm at 12.30 o'clock, right breast, so two areas, thanks God, I still have chance.

    I will definitely ask for appt with radiation oncologist before surgery decision is made. Again, hope all those research turn out to be useless.

    Thanks again!

  • sarahmaude
    sarahmaude Member Posts: 338
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    Cathy67, I'm hopeful you will be able to have a lumpectomy if that is what you feel is best for you. It was my choice, and I'm glad I made it. For this one, 6 cm away and so tiny! I did just read somewhere that Proton radiation therapy is an option for people who've already met their photon radiation therapy limits, so that might be an option for you as well.

    I'm thinking about you and hoping you will have results that give you the choices you prefer. In any case, you have a lot of support here. I was thinking about you on our May the 4th be with us day!

  • cathy67
    cathy67 Member Posts: 411
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    Sarahmaude,

    Thanks for the reply. I read what you wrote for your days in other posts, and I am glad you made it. I am in Canada, we don't have Proton radiation therapy, what a shame. But I will talk this to the radiation oncologist (hopefully will never happen), thanks.

    I just noticed your tumor is 4cm, it is the limit of the lumpectomy, and it is grade 3. I read somewhere a lady said she picked mastectomy though her doctor recommended lumpectomy, it turned out 1mm, but she is still very happy. This is a personal decision.

    I want lumpectomy if 2nd primary comes, partially because my two girls are perfectly in same size now, my right one is a bit larger than left one, all the time back from my teenage days, and all of my partners noticed this and mentioned this. Sometimes I got to explain this when I get in for checkups. My surgical scar is very good, just a line, and skin is no different after radiation. Don't worry about scar and radiation, it will get back to normal gradually.

    Fingers crossed.

    Enjoy your time with daughter, especially this mother's day weekend.

    Cathy


  • gb2115
    gb2115 Member Posts: 553
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    That's true, definitely need to ask radiation! I was sent for re-eval on the nodes after my . mastectomy and the RO refused to treat me because she said she gave me my lifetime radiation dose on the first go around.

  • cathy67
    cathy67 Member Posts: 411
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    gb 2115,

    Thanks. I studied a lot last time, but still missed this point, I wonder if I already reached life limits as well cause both of us were node positive.


  • cathy67
    cathy67 Member Posts: 411
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    gb2115,

    And I think they shall give this info at first round, or at least, before your mastectomy. I just learned chemo also has life limits, I was so happy I avoided chemo at first round. I will insist see radiation before surgery decision this time.

    Thanks.

  • cathy67
    cathy67 Member Posts: 411
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    Just found some breast radiation data on my local cancer center website, however it does not provide info regarding life time limits.

    1. Standard whole breast is 40gy

    2. Short whole breast is 26 gy\

    3. Extended whole breast is 50 gy

    4. Boost is 10 gy in 4 or 5 fractions, or 16 gy in 8 fractions.

    So, I did 1 which is 40gy, and 4 which is 10 gy (in 4 or 5 fractions) for old site. I did not find lifetime limits numbers in gy, however it seems that my new site can have at least 16gy as boost, not sure if this is enough if the disease is minor.

    So I am planning, if biopsy back positive, and the assessment based on biopsy is lumpectomy suppose it is a new primary:

    1. Discuss with oncologist if it is primary, since my last one is luminal A, and hormone receptor positive is quite common, so cannot decide it based on histology, I think, unless it is hormone receptor negative.

    2. On biopsy result day, discuss the possible treatment based on biopsy result and primary assumption. (with oncologist)

    3. Ask for referral to previous radiation unit (if lumpectomy is still option) and to previous surgeon (to book surgery time). (with oncologist)

    4. See radiation oncologist and surgeon.

    5. Book oncologist appt after 3, to review the whole plan before surgery date, and book appt after surgery for pathology report.

    Anybody can find the life time limits for breast radiation in gy unit, please let me know. Thanks.

    There are 3 or 4 key reports, 1st is the ultrasound/mammogram report leads to biopsy, 2nd is the biopsy report which may lead to "waiting game over" or treatment proposal in place, 3rd is the post operative pathology report leads to follow up treatment plan, 4th is optional oncotype test if eligible. I am waiting for the 2nd one.

    Appreciated this forum so so much, and you, ladies helped me so so much.

    Enjoy weekend.

    Cathy





  • nipab
    nipab Member Posts: 46
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    I am so sorry you are going through this, again! Cannot give you any definitive answer on whether it is new or recurrence, but one thing is for sure. Chemo is determined by the biology/pathology of the tumor. If it comes back positive, and if it needs an Oncotype score, then you can go for surgery and Oncotype testing of the tumor. But if you have the type of cancer which tells you that you require chemo by the results of Biopsy/MRI, then by the size of your tumor, I will say they will send you for chemo first. I would start researching chemo and what can you do to put side effects at bay.

    I know it is very difficult to fathom, I have been in your situation where I had a lumpectomy and radiation and was done with that. 6 years later, it came back (for me, it was in another breast) and new. I was done going through it again and again so went for a Mastectomy and am right now going through chemo. My tumor was 1 cm, so got the surgery done first. Usually, they send you for chemo first if it is more than 2 cm. I had time to research while recovering from surgery and am so glad for all the research, so I am armed to fight chemo.

    Good luck and hope you have negative results!

  • cathy67
    cathy67 Member Posts: 411
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    nipab,

    My nodule is 5×4×5mm on ultrasound, not sure what the biopsy report will say.

    Yes, I am studing mastectomy options now, to be ready for discussion with doctor.

    Thanks for the sharing.

    Cathy

  • 1982m
    1982m Member Posts: 224
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    Hi Cathy,

    I recently asked my radiation oncologist the question about if I had a recurrence if I could have another lumpectomy with radiation. He said the short answer was no.

    I'm 40 right now so the long answer was - maybe if you reoccur when your 60+ your tissues would have enough time to heal.

    If the breast cancer is on the same side and you were radiated on that same side in 2019, I believe they will recommend mastectomy.

    I hope it's benign. Sorry your going through all this.

    Edit: it's a older write up (2009) but explains a bit about salvage mastectomy being the standard of care. https://www.cancernetwork.com/view/managing-small-recurrence-previously-irradiated-breast

  • cathy67
    cathy67 Member Posts: 411
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    1982m,

    Thanks for the sharing. I will definitely discuss this with oncologist, I am asking ladies here, because my tumor is 5mm, if it is hormone receptor positive, and if it is a new primary, ncnn guideline recommends no radiation, if I understand correctly. I will print all corresponding pages for discussion with MO.

    Back in year 2019, MO recommended chemo, oncotype was not recommended because I was not eligible from insurance perspective (I am in Canada, our government medical insurance for every body). But I studied myself, I self paid oncotype and it back a super low score. Chemo was avoid, then today I know it has another big benefit, I just know chemo also has life time limits, I am so grateful I can still do that chemo if necessary in the future, it is ACT in total 8 times.

    Once I know why, I will follow the recommendation. I am exhausted of routine, follow-up , biopsy..my breast is not big, hopefully it will recover quickly.

    Enjoy weekend.

    Cathy

  • cathy67
    cathy67 Member Posts: 411
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    I looked at nccn again, sounds it is for 70 plus patient if disease is very minor.


  • katg
    katg Member Posts: 218
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    I am sorry cathy67-

    Take all the info and questions to the MO appointment. Allow yourself to ask every question. Especially what is proven to be best for what you have. The rads your body can still take and the mastectomy they may bring to the table. And for sure if chemo is suggested, it is, if done one treatment at a time, manageable. Not nearly as bad as people say. You know you are stong. Take it a day at a time and take us with you.

  • cathy67
    cathy67 Member Posts: 411
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    katg,

    Thanks. I will, a day at a time.

  • gb2115
    gb2115 Member Posts: 553
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    I don't know about specific life limits. That's just something that my RO said to me. She called it "lifetime radiation dose to the area. It's possible it's not official, just something she believes or the way she practices. She also wouldn't re-radiate the nodes because she was worried it would cause lymphedema and/or brachial plexus injury.

    My nurse navigator said that with re-radiation (for when they do it) there's also a time lapse in-between that needs to occur, but she couldn't remember how long that was.

  • cathy67
    cathy67 Member Posts: 411
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    gb2115, thanks.

  • cathy67
    cathy67 Member Posts: 411
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    1982m,

    I read the article you mentioned here, yes, it is key to tell whether it is another primary or true recurrence, if mine is another primary, I am okay to accept lumpectomy, with partial breast radiation, I think they can do partially for the new site only, at least like the boost radiation to the old site. Right now, I believe most of the recurrence will be small size, and early stage has long and long survival years, this question will be raised up more often.

    Thanks.

    Cathy

  • cathy67
    cathy67 Member Posts: 411
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    Biopsy back normal, thanks for everybody's inputs!