Fill Out Your Profile to share more about you. Learn more...

Surgery and Treatment decisions - stuck!

Options
Caligirl55555
Caligirl55555 Member Posts: 20
edited February 2022 in Just Diagnosed

1.9 cm with some branching (total under 5cm)

Mastectomy or Lumpectomy?

breasts are very large so would get reduction on the right side at a later date. Doctor recommends mastectomy of the affected breast. I agreed to avoid radiation but now that is up in the air. How can I make a decision if I don't know any cancer cells are in those nodes? MRI shows clear as of right now but it must be biopsied to be sure. That would require radiation correct? But, then why should I do a mastectomy if I have to do radiation anyway? Shouldn't I try to preserve as much as possible?

Comments

  • spookiesmom
    spookiesmom Member Posts: 8,171
    Options

    Dr can’t get every cell during surgery. Rads are supposed to kill any left behind. Final pathology during surgery will determine if has spread to nodes.

  • LivinLife
    LivinLife Member Posts: 301
    Options

    It is difficult.... you have to think about what you're most comfortable - knowing you won't know final pathology until after surgery. My docs would have recommended mastectomy though I couldn't have rads due to another medical issues. So I had no choice (at my age) other than to go the mastectomy route given Grade 3, total of 6 cm of area (initially) and expansive comedo necrosis.... I think what you're struggling with is one of the hardest decisions at the beginning of all of this. I really labored and poured over lots of info before even meeting with docs, other than my 1st opinion surgeon - I had no idea about any of the pathology at that point though....

  • salamandra
    salamandra Member Posts: 736
    Options

    You said the doctor recommended mastectomy and you agreed to avoid radiation. I guess I'd want to understand more why the doctor recommended what he did and how strong that recommendation is.

    Without that, I think in most circumstances for most people, avoiding radiation doesn't need to be a guiding concern. If there are conversations you could have with your RO that might help reassure you, it might be worth trying.

    If avoiding radiation is really your key factor, I am thinking that you can always take more off, but you can't put any back on. Would your surgeon be willing to start with a lumpectomy and then go back and and do a mastectomy if it turns out you are node negative? My understanding is that generally insurance will cover mastectomy after lumpectomy pretty easily.

    Usually the reasons for a mastectomy even knowing that radiation is likely to be required will have to do with the amount of tissue to be removed or the number/location of suspicious areas and cancer; genetic predispositions and risk; wanting to avoid mammograms and certain follow up screening (though that mostly applies without reconstruction, I believe); personal preference.

    Can you say anymore about why did your doctor recommend mastectomy?

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    But most mastectomies are chosen to avoid radiation so what is the point of choosing it to avoid that if it's done anyway? Wouldn't a conserving breast procedure be better, less extensive and less painful and less recovery time, etc. etc. ??

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    Hi Salamandra,

    He said lobular carcinoma is harder to just do a breast-conserving surgery on. It is 1.9 with other radiating features bringing the area up to just under 5cm though. My breasts are naturally quite large so not taking up a huge portion of them. (double D) so this would reduce them and then later I would get a reduction on the right to match size. I don't have genetic tests yet so if Brca then I'd just do a double mastectomy of course. I also would not have to worry about it coming back to that breast but I still need mammograms anyway because I am preserving right breast. If I get radiation, doesn't that mean I cannot do radiation ever again?? So, if I do get a tumor in right breast, then I only have mastectomy and no radiation as a choice right?

  • moth
    moth Member Posts: 3,293
    Options

    There are lifetime limits on radiation to an area but you might not reach them during initial treatment so it is possible to have radiation twice.

    I've heard from surgeons that ILC is trickier to excise so your surgeon's recommendation may be quite strong. Is lumpectomy being offered by your surgeon?

    One thing I haven't seen mentioned here is that mastectomy greatly reduces (but doesn't eliminate) the riks of a local recurrence in the same breast but has no effect on metastatic recurrence.

    As well, for a long time we were saying that lumpectomy + rads = same outcomes as mastectomy but recent studies have shown that in women for whom lumpectomy is an option, OS (overall survival) is better with lumpectomy+rads. https://www.breastcancer.org/research-news/lumpect...

    These decisions are hard! of course you can always do a mastectomy after a lumpectomy if you change your mind later (assuming insurance approves) but obvs can't go the other way. Have you read through all the material here https://www.breastcancer.org/treatment/surgery

    I hope you can come to a decision you feel confident about

  • salamandra
    salamandra Member Posts: 736
    Options

    Hey Caligirl555,

    I don't know whether most mastectomies are chosen to avoid radiation. Radiation is generally considered quite safe and well tolerated, so unless a person has comorbidities that they or their doctors are concerned about, avoiding radiation wouldn't necessarily be considered a primary goal.

    The reason that your doctor gave you - that the nature of your cancer makes lumpectomy less likely to be successful - definitely comes up regularly on these boards. Certain cancers and certain growths of cancers make mastectomy a better choice in some cases.

    To me I would definitely agree that if all things are equal, lumpectomy is a better option - that is what I chose for myself. And now more data is coming out showing that it actually has better life preserving outcomes than mastectomy. But usually all things are not equal and for some cases and some women, mastectomy is the best, or sometimes only, choice.

    I asked my RO whether having radiation once would preclude ever having it again and they told me that the radiation they were planning for me would not approach my lifetime limit and in case I had a future recurrence, a second lumpectomy and radiation would not be off the table (if other factors permitted).

    I'm not sure what your surgeon means about the excision being harder in the location of your tumor - whether that's about his skill/experience level, or the nature of your cancer. If it's also unclear to you, it might be worthwhile to get a second opinion from a major research center and/or SO who works with a plastic surgeon, depending one what exactly the issues are.

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    Thank you moth for the information. I always love having more to research and look into so I appreciate the links!

    Update is that the oncologist and radiation oncologist say that lumpectomy is the way to go. My breasts are naturally large so there is a lot to work with and is upper left quadrant only. They advised against the mastectomy, I guess I just thought that was what I was supposed to do to ensure survival. I have to hope for negative margins of course. Do you all know if I have no choice after that as far as asking him to go for more, or am I only going to be allowed a mastectomy at that point? I meet with the plastic surgeon tomorrow. I understand that radiation is the best course of action now, because of the fact that all cancer cells perhaps cannot be removed even with a mastectomy, and the radiologist said that it is so advanced now that damage to my heart and lungs is really not a risk at all anyway. My biggest question is chemo. They want to just see what the oncotype score is and it must be under 25. I've read so much literature that chemo is not advantageous in this case and that invasive lobular carcinoma is typically resistant to chemo. Anyone else see that research? Wondering why all of my doctors don't mention that. Considering not doing chemo since I am ER and PR positive and HER2negative. Everything I've read sys that hormone therapy is best for this type and that chemo is of little value so I don't want to over treat myself and damage my body unnecessarily. Results are a month away but trying to think ahead. I have a 9-year old and I want to be here for her, but chemo would essentially take me away from her and from my job and income and if chemo has little value, I am leaning away from it.

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    Thank you Salamandra, please see my update and let me know your thoughts!

  • moth
    moth Member Posts: 3,293
    Options

    If you have positive margins, usually they can just do a re-excision. of course it depends where & what pathology shows but no, they usually don't leap to mastectomy.

    The thing with ILC is tricky. I can see your thought process but an alternative one is that this subtype is just more aggressive & more likely to recur in spite of chemo & therefore everything possible should be thrown at it to lower risk or metastatic recurrence. A mastectomy won't do that but chemo *might*.. I'd try to wait patiently for the oncotype. I know the waiting sucks....

  • lillyishere
    lillyishere Member Posts: 770
    Options

    Lobular is very difficult to detect. MRI caught a spot on my left breast and I was recommended for lumpectomy. I asked for BMX, Pathology report showed both breasts with ILC and LCIS and 2 lymph nodes positive that didn't light up in MRI.

  • salamandra
    salamandra Member Posts: 736
    Options

    Hey Caligirl,

    It seems like it could be a good time to get a second opinion or two. If they just confirm what your docs are saying, that would surely be better for your peace of mind.

    For what it's worth, based on these boards chemo doesn't necessarily 'take someone away'. With modern chemo treatment, some women are able to continue working. It's not easy to predict, but if you are generally healthy I wouldn't put chemo off the table solely due to concerns about working/side effects, especially not without more medical consultation. Not all courses of chemo are equally debilitating either, and your docs can work with you on it.

    It is very frustrating that there is so much guessing/bet hedging involved in treatment of cancer. I'm on hormonal meds that I have no idea whether I actually need, and if I need them whether they'll actually work. All we can do is make the best decision based on the medical knowledge at the time. That can definitely include looking for second opinions, especially in cases where the medical research might not be definitive, or where one is feeling ambivalent. We have to do what it takes not only to make our decisions at the time, but to be able to live with the outcomes later.

    Good luck!!

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    Thank you Salamandra, I was unaware. To me, I just see a very debilitating 4-5 months where I lose my pay, my time with family, and major long-term damage to my body. I've read that leukemia and cataracts could be in my future! My hair may not grow back? With a 2% chance of metastasizing, it makes me lean away from it. If the tumor is out and no lymph node involvement, are we assuming the cancer is elsewhere because it could be in the bloodstream? I'm confused.

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    Thank you moth. I was wondering about a second go at getting that negative margin, if necessary. The team is meeting today so will update me later today, and I am headed to the plastic surgery consult.

    I am hoping I am at a good medical group(Sharp Rees-Stealy) as it wouldn't be until January for me to get to Scripps, I've read they are better at handling cancer patients. I don't want to delay surgery but I do want the best care. At Stage 1, I am just surprised "chemo" is even brought up.

  • moth
    moth Member Posts: 3,293
    Options

    I was stage 1a, had chemo & rads and still got metastasis ~2 yrs later. My lymph nodes were clear. All it takes is 1 cell & yes it can travel through the blood stream and then sit dormant before waking up *years* later.

    That's how cancer can be :(

  • btwnstars
    btwnstars Member Posts: 81
    Options

    Caligirl - sounds like I had a similar diagnosis and treatment plan as you. Based on what my doctors were saying and early stage, etc, I thought I would not need chemo. I also had very high ER/PR+ biopsy and negative for HER2. But my oncotype score told a different story and I ended up with a 28. I was devastated for all the reasons you list about fearing chemo and wondering what percent of benefit it would bring me. Lots of research and reading and talking with doctors and other medical professionals, I am glad I have gone thru with the chemo treatment. While it is different for everyone, it is not necessarily debilitating. I have been able to work from home and have taken little time off for treatment and recovery, using weekend days to help. You should look into what options you have with your job and if you are protected by any disability laws. Don't get ahead of yourself, but I would encourage you to continue reading up on chemo and also get a 2nd opinion for your treatment plan.

    Even tho there are risks, I had to treat the thing I actually have which was breast cancer, which was known. I couldn't think about treating potential future side effects. And there are diagnostic tests that help determine which treatment is best for you so you are trying to reduce any harmful effects as much as possible.

    wishing you the best


  • msphil
    msphil Member Posts: 185
    Options

    see if my story helps your decision hello sweetie I was making marriage plans at diagnosis had prayed for God to send the right man into my life. This was our 2nd marriages and so happy then this got 2nd opinion and it was same wanted lumpectomy but my oncologist recommended mastectomy. At fiance s urging along with docs I agreed so I had 3mo chemo before and after L mast we got married then 7 wks rads and 5 yrs on tamoxifen chemo was adriamycin 5fu and cytoxin. I was 42 at diagnosis which back then was considered young to have breast cancer. Praise God I am this yr a 27 yr Survivor thru faith Hope family and Positive thoughts like I will get thru this and of course God sent the man of my dreams who stuck with every step. So please use my journey for Inspiration. Hold on sweetie. msphil

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    Moth, BtwnStars, and all who chatted! I thank you for your encouragement and information.

    I ended up with a surgeon refusing to do a lumpectomy while the oncologists disagreed with him. So, they found me an award-winning surgeon who agreed I was a perfect candidate for a lumpetcomy (quadrantectomy). The Review Board denied my request! So, I called my Insurance who changed my medical group pronto...3 days. I had to find a new plastic surgeon as well in this new medical group, but I was finally able to get surgery 3 months after diagnosis. Yes. THREE MONTHS. No nodal involvement but he took EIGHT of them by accident. He took 3 fat pockets that lit up and were very very small, but unfortunately they held 8. Everyone assures me this is not a problem but I guess it's a waiting game. Also, the initial radiologist mis-measured the tumor. It was 1.9 with satellite tumors splaying off of it for a total of 4.7cm. Well, it turns out that is was only 2.7cm TOTAL. So, much more tissue was removed than necessary. I ended up with C cups which my back is so grateful for. The left side has an indentation and hard sections so healing has been slow. Radiation will not help with that, that's for sure so another concern I have. Surgeon says I may need work on it in the future (fat deposits). We'll see. My husband doesn't care so not sure I do.

    Oncotype returned the first week of December and is only 18, so no chemo.

    I am now set for Radiation whole breast on Monday. I am wavering because of the left-breast (breathing technique assists with heart not being hit with radiation but it is still terrifying). I am concerned about my lymph nodes though she says they will not be radiated. Will they be ok? I don't even know how may I have left. To me, if my heart and lungs don't function properly and I have lymphedema, is that a good quality of life? What are the risks really?? Any advice there? I don't want to back out of something that can save my life and keep a cell from traveling around, but my margins were HUGE: 7mm! I have a 20% of recurrence now and radiation takes it to 8%. I'm only 50 so they say I cannot skip it. Anyone out there skip it??

    Thank you everyone!