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Stage IIB Positive in Two Nodes No Chemo/No Radiation

Debbie_R_MI
Debbie_R_MI Member Posts: 13

I am stage IIB with two positive lymph nodes. I had left breast mastectomy with node dissection at end of October. My OncoType score was 11 so we determined chemo was not necessary. I have an auto immune condition (Scleroderma) which is a connective tissue disorder. The oncologists at two places discussed performing radiation only to the nodes, not the chest due to the auto immune condition. Now, after further discussions, they feel radiation at all is risky and could pose a problem for my auto immune condition since lung fibrosis is a big issue with this condition. Performing radiation to the nodes will hit 20% of the left lung in the process which may be too risky. There are not many treatment options for my auto immune condition if my lungs become affected so this is why there is a lot of concern about it.

I will be doing endocrine therapy because I am ER/PR positive, HER2 negative. My question is whether any only else has skipped chemo and radiation having positive nodes and if there is any information on how much the risk of recurrence will go up at year 5, 10 and 15. My radiology oncologist told me as far as survival in general, I would see 5% reduction in expected survival by skipping the radiation. There is no question that if I didn't have the auto immune condition I would need radiation to chest and nodes but due to the condition, they are cautioning me about it.

Any feedback anyone can provide for those who skipped both chemo and radiation would be very helpful and to know how far you have gotten with or without a recurrence.

Thank you.

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Comments

  • mountainmia
    mountainmia Member Posts: 857

    I'm sorry you're facing this. I don't have any experience to share with you. I can only recommend that you and the health team agree on more frequent monitoring than most of us have. I wish you well.

  • ratherbesailing
    ratherbesailing Member Posts: 117

    I'm with Mountain Mia, so sorry you're facing this issue, and it's one likely one none of us has encountered. The only thing I would add is that perhaps you should get a second opinion? Are you at an NCI center that offers more targeted radiation, such as IMRT or perhaps proton?

    Please understand I have absolutely no knowledge whether these might be feasible or better options for you, and your current RO may have already considered them. It's just that, with such an unusual situation, I wouldn't hesitate to have another RO look at your case.

  • lillyishere
    lillyishere Member Posts: 769

    Debbie_R_MI, I am stage 2 as well with 2 nodes positive. I had BMX and I was told no need for radiation or chemo but I am in letrozole. I started cancer journey without any medical condition and still chemo and radiation was not recommended.

  • Debbie_R_MI
    Debbie_R_MI Member Posts: 13

    RatherBeSailing- I did get second opinion and although there was some disagreement at first, after the radiology oncologist from two different places discussed, they thought radiation may be too risky based on my auto immune condition. I have seen doctors at University of Michigan and Michigan State which both have good cancer treatment centers. I guess I don't really fit into the typical treatment plans with this other condition I have so I'll just have to trust their opinions at this point. I could go round and round with it but I've gotten a lot of feedback from multiple medical and radiology oncologists. Thank you for your input.

  • Debbie_R_MI
    Debbie_R_MI Member Posts: 13

    LillyIsHere - thank you for responding. I am glad I am not alone with the recommendation of no chemo or radiation. It makes me very nervous though I have to say. I guess the point is that it would be easier for them to treat the recurrence, should it happen, rather than deal with complications caused by radiation to my auto immune condition.

    I hope you are doing well. I will begin endocrine therapy soon as well. How are you tolerating it?

  • smoothoperator78
    smoothoperator78 Member Posts: 72

    so sorry that you’ve got Comorbidities that are affecting your ability to get the standard of care.

    Good news is that the endocrine therapy is far more impactful in reducing risk of recurrence than radiation/chemo. Although you will not have the ideal reduction due to not being able to have radiation, just make sure you’re doing all you can with the endocrine therapy.

  • Denisenjason
    Denisenjason Member Posts: 1

    i was stage 2. 1 node positive. Oncotype was 14. No chemo or radiation, but I did have BIlateral Mastectomy and have been on aromasin. I’m almost 7 years out. :)

  • jelson
    jelson Member Posts: 622

    Debbie _R_MI -

    There is someone recently posting on BCO who has Scleroderma. search keyword Scleroderma in the search function on the left and you will find her posts.

    Glad that your treatment team is personalizing your regimen.

  • maggie15
    maggie15 Member Posts: 769

    Debbie_R_MI, you are doing the right thing by skipping radiation. I ended out with lung fibrosis six months after rads. I didn't need chemo (Oncotype 20) and declined the endocrine therapy because of osteoporosis and osteoarthritis. There was no indication that my lungs might be a problem, but my pulmonologist thinks that my asymptomatic GERD which caused an upper GI bleed several years ago is related to interstitial lung disease. Scleroderma is another red flag for ILD. I'm now on long term steroids and hoping that the lung scarring stays in the radiation portal, but there are no guarantees.

    I hope the endocrine therapy is successful for you.

  • salamandra
    salamandra Member Posts: 725

    Hi Debbie,

    It sounds like you've done your due diligence on advice. I'd say now the most important thing is to have a really good medical oncologist handling your follow-up.

    Without the radiation, you have (according to my understanding) a higher chance for local recurrence. So ongoing screening will be even more important for you. If it's not already recommended, I would ask my oncologist about explicitly including both MRIs and ultrasounds, in addition to mammograms, as part of regular annual screening. (I do this with mammograms and MRIs spaced out by about 6 months, so I'm effectively getting checked twice a year. I do not have ultrasounds).

    The other reason it's so important is that you are relying entirely on the hormonal therapy for prevention of distant (metastatic) recurrence. That is very common also and like someone said, with a low oncotype score, hormonal therapy is the most effective prevention. However, not every woman tolerates the first hormonal treatment they try, and not every oncologist is equally supportive and knowledgable about trying different ones. Hopefully the first pill you try will feel like a sugar pill to you - and that is the case for lots of women. But if not, please be very clear and vocal with your oncologist right from the beginning. Some side effects come and go, especially at the beginning, some stick around, and some show up later. If you're ever feeling like it's just too much, it's really important that your oncologist work with you on finding a way to stay on something, rather than you getting frustrated with her and just going off, which is a thing that happens too often.

    If you are premenopausal and recommended tamoxifen, know that it is not the only good SERM out there. Toremifene is a good back up option. If you are doing OS and/or AI, know that there are three different AIs and surgical *and* chemical ovarian suppression options. There is plenty to try, and plenty of reason to keep trying if the 1st/2nd/3rd thing doesn't work out.

    Good luck!

  • sarah_78
    sarah_78 Member Posts: 119

    Dear Debbie,

    my situation is a little different but it has a common denominator so I thought I'd write. After chemo, I still had some cells on the lymphnodes (2 out of 11 that they have taken) and although it is standard for this situation to have radiotherapy, I can't have it due to having received it for another condition 10 years ago.

    I am also not feeling very confident with this situation but my oncologist told me this, surgery is local and radiotherapy is a local therapy as well. But instead of a second local therapy, I will be given a systematic targeted therapy and it should take care of whatever is left. Your situation is similar since you will be getting endocrine therapy (which is also targeted to your type of pathology and systematic as well).

    I'd like to say, have faith in your oncologist and radiotherapist who had weighted risk vs gain of your situation and came up with a plan for you. If you don't feel comfortable in the way they explain it or you would like to ask someone else, go for a second opinion.

    And most importantly, hang in there, we are here for a V-Day virtual hug <3

  • Caligirl55555
    Caligirl55555 Member Posts: 20

    Hello all,

    I am lined up for 6 weeks of radiation and wondering if skipping is a course of action anyone takes? 0/8 nodes. Invasive Lobular cancer removed in November.

    Oncotype is only 18, so no chemo. Low risk. It was left breast quadrantectomy for a 2.7cm tumor, negative margins. The first radiologist misdiagnosed the size to 4.7 so more tissue was taken the necessary. Also, more nodes obviously. He took 3 fat pockets that lit up from the dye, not knowing there were multiple nodes inside each pocket because he said they were so small. My bad for having small nodes. Everyone says missing 8 nodes is a non-issue. Shoulder shrug. Also concerned about damage to ribs, ongoing pain that I've read some other survivors mentioning in this forum.

    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 later 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 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??

  • Debbie_R_MI
    Debbie_R_MI Member Posts: 13

    Denisenjason - good to hear you have been able to stay cancer free for 7 years without chemo or radiation. It's a comfort to me knowing that. Take care!

  • Debbie_R_MI
    Debbie_R_MI Member Posts: 13

    Maggie15 - thanks for your comments. Sorry to hear you've developed lung fibrosis from the radiation. As someone who also has GERD and other problems with my entire GI tract due to my auto immune disease, it makes some sense to me that the condition would put you at higher risk for fibrosis as there could be scarring in the esophagus or aspiration into the lungs with GERD. As my radiology oncologists told me, it is too risky to do the radiation and that it would be easier to treat a cancer recurrence than damaging lungs from radiation. I was 52 when diagnosed so they said if I was younger or over 60 they would have recommended radiation. I guess because I was stage 2b, I have the option to skip, even though radiation would provide some benefit. Thanks for your comments and I hope things improve for you.

  • Debbie_R_MI
    Debbie_R_MI Member Posts: 13

    Hi Salamandra - thank you for your comments. I have a very good medical oncologist so I am lucky with that. We agreed I would have more frequent follow up, including MRI to put my mind at ease. I am post menopausal so I started Anastrozole (Aromatase inhibitor). It hasn't been too bad as far as side effects so far. I don't feel the greatest on it but I know the importance of sticking with it and switching to another if I need to. Thank you for answering and hope you are doing well.

  • Debbie_R_MI
    Debbie_R_MI Member Posts: 13

    Hi Sarah_78 - thanks for answering. Yes, the surgery was most important getting all of the cancer, which they tell me they did get it and I had clear margins. I started the aromatase therapy a couple weeks ago which is probably the 2nd most important thing I do. I did get two opinions on the chemo and the radiation as I wanted to be sure and hear everyone's opinions. Due to my other medical conditions, particularly the auto immune condition, my case was not so cut and dry. However, they all got together, discussed and came back with the plan which eliminated radiation. I trust their opinions on it but still worry about recurrence because cancer was found in two nodes and their initial plan was to have radiation. I guess we all worry about it coming back. Thank you again for answering and I hope you are doing well.

  • Debbie_R_MI
    Debbie_R_MI Member Posts: 13

    Hi Caligirl55555 - have you thought about seeking a second opinion on the radiation? Am I reading it correctly that you did not have mastectomy? It could be your age at diagnosis that is having the doctors recommend radiation. I was close to that cut off at 51 at diagnosis. I would get a second opinion before you make any final decisions. Hope you can sort it out and get a better peace of mind with it all. I know it is very difficult. My OncoType came back with 16% risk for recurrence and that will double if I don't take the endocrine therapy for at least five years. Are you planning on taking endocrine therapy?

  • salamandra
    salamandra Member Posts: 725

    Caligirl, you are in a pretty different situation than the OP of this thread. I'm not even sure if it makes sense for me to reply here, and you might find more information searching in threads that relate more to your situation.

    You had a lumpectomy. A lumpectomy is only equally effective at preventing local recurrence as a mastectomy when the lumpectomy is accompanied by radiation. For that reason, most surgeons will only perform a lumpectomy for patients who are willing to do radiation, and recommend a mastectomy to those for whom it is important - for any reason - to avoid radiation. (In some cases, it turns out after a mastectomy that radiation is still recommended, so it's not a guarantee).

    If you had a known medical condition, as the OP here does, that would contraindicate radiation, it's likely you would have recommended mastectomy for you.

    For what it's worth, I think if you look through the threads here (and you should!) many of us have had hesitation about radiation. I know I did. I did a lot of research, asked my friends who were physicians or who had physician friends, etc. As far as I know, very few of us end up skipping it. The evidence is really very very solid that it helps prevent local recurrence primarily and directly, and has some indirect benefit for prevention of metastatic recurrence. In addition, evidence/statistics of long term risk/harm is, by necessity, based on women who were treated a long time ago, and treatments, techniques, machinery, have all improved a great deal over time. In terms of lymphedema, I am not an expert, but I do know that radiation to nodes is sometimes recommended as a less risk (for lymphedema) alternative than surgery that removes all nodes. In terms of quality of life living with lymphedema, of course it can vary a lot. But I think the implication that any case of lymphedema is a life not worth living is pretty extreme. Finally, recurrence, even local treatable recurrence, tends to be even more traumatic than initial diagnosis.

    In the end, I think it's that last thing that got emotionally over the hump to radiation (I was already there intellectually). The prospect of going through this whole thing - biopsy, waiting on results and hormones, scanning, waiting on results and evidence of cancer elsewhere in the breast/body, deciding on surgery (much more likely to be a mastectomy the second time around), waiting on pathology and oncotype, etc, and all with quite possibly a higher risk tumor - when there was a good chance it could have been avoided? That *felt* terrible. I didn't want my future self to go through that if I could prevent it.

    Again, I strongly encourage you to read posts from the boards that apply more closely to your situation. But also, if you end up deciding against radiation, you can ask your doctors to go back and do a mastectomy. Insurance is required to cover it.

  • salamandra
    salamandra Member Posts: 725

    Debbie,

    I'm so glad to hear that! I hope the AI only gets easier, and/or you can find relief for the bad parts. I am doing well, thank you! I just had my third follow up MRI screening. After my second I had to have a biopsy and though it came back benign, it scared me a lot. I just got the all clear for this one :)

  • Caligirl55555
    Caligirl55555 Member Posts: 20

    Yes! I will meet with that onco a month after radiation fro that. I assume tamoxifin.. I am only 50 so they recommend radiation and therapy, but the onco left able to avoid chemo. If there is a rogue cell in the breast, it could eventually recur elsewhere so radiation is recommended to get it/them?

  • Caligirl55555
    Caligirl55555 Member Posts: 20

    Thank you Salamandra It sounds as if this is NOT something to dismiss. So, if there are rogue cells in the tissue for some reason, they can move on somewhere else in the body? Even though my nodes were clear? I think I've misunderstood this. I thought recurrence meant ONLY in the same breast so it would have to develop into a tumor and hit those lymph nodes before becoming metastatic. But, that is not true so radiation is a very good idea for me??

  • Caligirl55555
    Caligirl55555 Member Posts: 20

    PS - I am still pre-menopausal also. I was still taking birth control to control acne, mood, etc.. and stay regular and since I am ER/PR positive, they figured that fueled the tumor growth. I had a really poor Primary doc and have since switched medical groups and have a whole team of new amazing doctors. She should not supposed to have continued to supply me with birth control pills! I ddin't know!

  • salamandra
    salamandra Member Posts: 725

    Yeah, going through the lymph nodes is just one possible path. Once the cancer is invasive, it can leave the tumor and be elsewhere in the breast or the body, and you don't know until/unless it's big enough to show up on scanning.

    Recurrence *can* be in the same breast - that would be a local recurrence. If a local recurrence is caught in time, then hopefully it doesn't spread further. But again, once it's invasive, you don't really know until you know. Radiation helps prevent that whole other ride through that roller coaster.

    But you *can* have a distant recurrence elsewhere in the body without ever having anything more in the breast, from cancer that got out. That's a danger for anyone who had invasive cancer (stage one and up), no matter how small. Versus if someone had true in situ cancer (stage zero), they can trust it really was localized. Systemic therapies like chemo and hormones help prevent distant recurrence.

    None of these therapies are a sure thing. People have all of them and still recur. Also, some people could have surgery alone and never recur - either because in fact no cancer was not able to escape the breast before surgery, or they just get really really lucky.

    The thing is we can't know which case we're in before the fact. The studies that support use of radiation can tell us that statistically, women (under 70) who have radiation with lumpectomy live longer than women who do not have radiation with lumpectomy. Studies look both at overall survival and cancer free survival. If a woman didn't recur but say died of heart disease potentially related to radiation, she would count in the cancer free statistics but not in overall survival statistics. So these studies do try to take account of the risks of treatment as well. That's exactly how the oncotype works - by identifying which cases would result in more likely harm from chemo than benefit.

    Unfortunately, for radiation and hormonal therapy, there is nothing like oncotype to get a more individual read on risk, so we rely (with our doctor's guidance) on general statistics for all women - often narrowed down by age, and sometimes by other factors.

    I would definitely not forego radiation lightly.

    In terms of the pill, if you didn't have other risk factors (family history or genetic variation, etc) it might not be so bad for your doc to have kept you on it. Estrogen supplementation is actually a very common treatment for symptoms associated with perimenopause and menopause. Many women use the pill or other forms of hormonal treatment for things like egg freezing and fertility therapy, and generally it's not possible to know in any individual cause exactly what to blame - and that's probably a blessing. However, yes, once you got the cancer diagnosis, she definitely should have counseled you to stop the pill.

  • As I'm reading this thread, I think there may be some apples and oranges discussion.

    Oncotype scores reflect distant / metastatic recurrence risk only. The risk percentage that you get along with your Oncotype score assumes that you will take Tamoxifen or an AI. These meds provide approx. a 30%-35% reduction in metastatic risk.
    - For example, if your metastatic risk based on your Oncotype score is 8%, your risk if you don't take these meds will be approximately 12% (8% being a 33% reduction off 12%).
    - Or, if your metastatic risk based on your Oncotype score is 18%, your risk if you don't take these meds will be approximately 27% (18% being a 33% reduction off 27%).

    Separately, everyone also has a local (in the breast area) recurrence risk. For those who have a MX, this risk might only be 1% - 2%. After a lumpectomy, the average risk of local recurrence probably falls somewhere in the range of 12% - 20%, but it can vary greatly based on the pathology of the cancer. Radiation will reduce this risk by approx. 50%. So, if your risk is 20%, you can bring it down to around 10% by having rads. Taking Tamox or an AI can reduce this risk by about another 50%, taking the 10% to approx. 5%. Therefore, if you both have rads and take anti-hormone therapy, you can reduce your local recurrence risk from 20% to 5% (in my example - everyone's starting risk is different).

    I may be misinterpreting the posts before mine but I think there is some confusion between metastatic risk, which often is based on an Oncotype score, and local recurrence risk, which has nothing to do with the Oncotype score but is where radiation comes into play.

  • Caligirl55555
    Caligirl55555 Member Posts: 20

    Hi Beesie,

    Numbers. Explanation. YES! Thank you! I will do both! Much gratitude to you all!

  • Caligirl55555
    Caligirl55555 Member Posts: 20

    Salamandra,

    Thank you! I will not skip radiation. The only thing I was able to skirt so far is chemo. and I have to count my blessings. I think the low oncotype score was positive not just in that reasoning, but in the reasoning that distant recurrence is low, moreso than just being able to skip chemo. Thank you for a clear picture. :)

  • Caligirl55555
    Caligirl55555 Member Posts: 20

    Hello all, I began a 5-week schedule today. I am super concerned as everything I've read said that I won't have my axillary nodes radiated in my armpit. Doc said that radiation will splay out that way so they will be hit anyway. Is that true??? They aren't targeted, but they are still hit with radiation?? Please help! I don't want to go back tomorrow!

  • AlwaysMeC
    AlwaysMeC Member Posts: 107

    Caligirl, would they allow you to see your radiation plan? I was able to see mine. It looks like a topographical map, and it shows which areas will get radiated. The areas spread out in different colors from the most radiation to only some. At the very edge of that "some" I was told that that much radiation shouldn't affect the parts it is hitting. It might make you feel better knowing exactly what areas are being radiated and how much each area is getting.

  • 1redgirl
    1redgirl Member Posts: 94
    Almost 30 years ago now, I was diagnosed with early stage breast cancer. I had two surgeries. The second was because margins not clear. I just went on with my life. 4 yrs ago this month, diagnosed with breast cancer in other breast. IDC. 2B. Grade 3 cancer cells. Again opted only for surgery. I had a mastectomy right breast. Still kept left breast that had the 2 surgeries. They took out about 12 lymph nodes in right armpit. 1 had cancer. That left me with lymphedema. My condition is annoying. I was forbidden by doctors to ride horses again because any damage to right arm, even a scratch, with fewer lymph nodes would be bad for my health. Well 2 serious falls later, still here and arms ok. I did have many stitches, pretty beat up but fine now. I had no further treatment for cancer besides surgeries. It was the right decision for me.
  • cowgirl13
    cowgirl13 Member Posts: 765

    Redgirl, I don't have any riding friends that would follow your doctors orders re not riding. OMG!