Radiation After Mastectomy AND LESS THAN 4 LYMPH NODES INVOLVED

PerAngusta

I'm not sure what to decide. I am facing this decision and wondered if any of you have faced same? I am EXACTLY ON THE FENCE according to my radiation oncologist. I have had a bilateral mastectomy and pathology confirmed that one lymph node was affected/had cancer. What to do when there are less than 4 lymph nodes involved? To radiate or not to radiate.....it is YOUR DECISION.

I should note that, It has been clear for some time that women in whom the disease has NOT SPREAD to the lymph nodes, will not benefit from radiotherapy.

At the end of the day, it's all about decreasing the chances it will come back...both to your chest/armpit area and anywhere else. The recommendations used to be pretty straight forward - radiation after mastectomy if the tumor was 5cm or more and/or there were 4 or more nodes with cancer. Now, there is data that suggest that women with other features on pathology and only one node positive get a benefit too.

From what I have been told and what I can find, regarding actual data, radiation after mastectomy "may" result in as much as 10% reduction of risk of recurrence over 10 years (data from 22 trials conducted between 1964 and 1986). The operative words being MAY, might, maybe, perhaps! This statistic is largely based upon which subcategory of (for instance) the women tested, you might fall under…which is impossible to know. We can't know....we weren't part of the trial!! So it's back to guessing! Take a chance on radiation and the unclear benefits OR take a pass because side affects scare you more?

And what about the side affects of radiation? I break out into a sweat as I read the posts associated with "radiation, before, during and after". This information is clear, documented and seems to be KNOWN.

Obviously, by the tone of my post you can see, I'm leaning strongly toward NO RADIATION FOR ME (and my cancer is on the LEFT side, which causes additional concern for radiation - for me).....BUT...I'd like to hear from any of you who have faced the same crossroad. How did you decide? Are you happy with your decision? Am I considering all that there is to consider? I am 48, have three children (youngest is 10) and plan to be here for a long, long time yet! No recurrence is a dream for sure, but so is a life without suffering from radiation side affects. Which should I...we...anyone....choose?

This is tough! I'd love to hear from someone who has already been here!!!

Sjacobs146

PerAngusta, I am just finishing rads (two treatments left) and I have not found the SEs too bad. My skin reddened all over, and I had some peeling in my armpit area, but my RO was right on top of it. Compared to chemo, it was a piece of cake. No guarantees, but I just wanted to let you know that not everyone has terrible side effects from rads

PerAngusta

Thanks for your reply! I guess my big question is....if you DID NOT HAVE TO HAVE radiation (i.e. if you had less than 4 modes with cancer AFTER mastectomy) would you still go through all of this? Radiation benefits for women in these, very particular circumstances are largely....not known.

rozem

perAngusta  there are other factors that weigh in to the decision to have radiation therapy - age -younger than 50? type of bc ? grade 3/triple neg/her2 etc... LVI (lymphovascular invasion).  My RO told me these are all considerations on whether or not to have rads.  I had all of the above and no nodes on imaging and was still suggested I do rads

 

PerAngusta

Hi rozem! Thanks for your words, but my issue is actually quite specific....this discussion thread is what to do if you have 1) had mastectomy and 2) learned through pathology that more than ZERO but less than FOUR lymph nodes were involved. It is a gray area among the professionals as well. There is evidence to support radiation in this instance and cautions for same. Hence, "on the fence". There is no right or wrong answer at this time (perhaps there will be someday) and so I have put it out there for others (in the SAME gray area) to let me know how they decided. It will help me to decide as well.

Maybe I was too wordy....sorry.....sometimes in trying to offer information in an attempt to be understood....I talk too much and cloud the issue. My bad.

To be clear, I am not wondering if radiation is a good option for women with breast cancer in general, BUT RATHER, under these specific circumstances, whether anyone else opted not to radiate or conversely, felt strong about radiating. Must be women AFTER mastectomy AND with 1 to 4 lymph nodes involved (cancer spread). Hopefully, I've cleared it up? I'm sure that there are others like me out there somewhere???

Marcygiff

I am 48, had left-sided IDC w/ lymphovascular invasion, some DCIS, 1/15 positive lymph nodes, and an Onctoype score of 23. Had a bilateral mastectomy in August, 4 rounds of Taxotere/Cytoxin and then 28 treatments of radiation. My breast surgeon and radiation oncologist strongly recommended radiation but left it up to me as well. When it all came down to it, I felt that, for me, it was one more thing in the arsenal to throw at it. I also have 3 boys between the ages of 12 and 27 and would stand on my head if it meant there was a better chance of having this never come back.

Maureen1

Per Augusta...In response to your question,I did opt not to do radiation after BMX - I had 2 positive nodes and 1 with some microinvasion but no extracapsular involvement and no lymphovascular involvement and I had great margins (my surgeon's description). I met with 3 RO's to discuss my options and all 3 said that it was my choice since it would only reduce the risk for local recurrence by about 5% (in their estimation). I was also concerned about left side rads due to heart and lung exposure so I weighed my risk and feel if I have a local recurrence and they suggest rads again I'll consider it. I did opt to do chemo and I am taking Tamoxifen - both of which reduce my risk more than the rads would have. As with everything else with this beast - we have some tough choices to make but we just have to do the best we can with the information we have and...as someone on these boards told me "don't second guess yourself and don't look back" - that's how I'm approaching it... Good luck in your decision, let us know (((Hugs))) Maureen

inks

I was 36 with two micromets in one node, LVI and necrosis, bilateral mastectomy and opted to do rads. It was a hard decision sine based on my research it had only about 5% benefit for me. I barely burned (my RO has a protocol of curcumin that she did a study on) but my implant on that side is way hard and I have to go back to have it lowered. I did not want to look back and regret not doing it all. It may help you if you base your decision on your ER+ as well. I was 75% er+ and pr-, so I was not too sure that hormone treatment would be real effective on me. Good luck deciding.

PerAngusta

Hi Marcygiff!

Why did they strongly recommend radiation? I'm very interested in understanding this position. It will help me to decide as well. Like you/everyone, I want an arsenal of effective treatments and best possible outcome. My treatment options were clearly explained and in detail. So far, I'm happy with my research and choices. I think that this, more than anything, is very important (making a decision and feeling okay with it!) and very personal. At this time, my information has lead me to conclude that (unlike chemotherapy or surgery, for instance) there is no documented or known benefit to radiation, after mastectomy and when only 1 - 4 lymph nodes are effected. To illustrate, there has always been a clear thought that there is NO BENEFIT to women in whom the disease has NOT spread to the lymph nodes. So, I am interested in standing on my head as well - but ONLY if it actually brings forth a benefit - if all it does is cause the blood to rush to my head, make me pass out and risk suffering needlessly for the rest of my life...then this option scares me.

PerAngusta

OMG!!! Thanks Maureen1....I totally appreciate your words. This is exactly what I was looking for!!! Very scary to have to decide this, but nice to hear from folks on both sides of the argument....it will ALL help!! Thank you.

PerAngusta

Thanks inks!!!! You raise a fantastic point - the treatments that I "am counting on" to reduce risk of recurrence (based upon published, known statistics/studies) are related to hormones and my positive HER2 status. If nothing else, you have brought a smile to my gloomy face (bad day today - very confused, chemo brain??) and reminded me that I am fortunate to have treatments available to me, at all!!! So, all things considered, I suppose it is not such a bad thing to be in a position where I can actually consider turning down a treatment option. I think I'm just scared today. Too much information can be overwhelming some days. Maybe I should go back to taking a break from this site. Thanks to all of you ladies!!! I'll drop in again, I am sure. Please know that I wish you well - good health and a long and happy life!!!

SpecialK

I had BMX, a positive SNB with 20 IST, subsequent ALND that yielded a 6mm positive node out of the additional 11 nodes taken.  I had a 2.6cm mass, with LVI, and Her2+.  I did 6 TCH, then continued Herceptin for the balance of the year.  I asked both BS and MO, twice each, if I needed rads.  Both said no, so I did not pursue it and did not have a consult.

Sam2U

I had a UBMX on the left side with no reconstruction(not my choice, but that's a different story).  My team was split on the radiation.  My SO and RO were both in favor of the radiation due to 2 nodes being positive with one 8mm tumor in the node and  extracapsular involvement.  The MO had concerns due to the large number of nodes removed, 40+, that lymphedema would be a problem, and didn't know if the 10% decreased risk of local recurrence was worth the side effects. 

What none of them covered with me in depth was the damage and effects on the reconstruction process.  Since I am not sure you want reconstruction--I will touch on what I have learned regarding damage.  The SE's during treatment were not pleasant but survivable:  fatigue, aggravation of daily appointments, burns.  I am almost 8 months out and I still have to stretch on a regular basis to keep the tightness at bay.  The skin is discolored and hard to the touch.  Before radiation I didn't have the "iron bra" feeling, now I do.  The lymphedema has gotten worse--still manageable though with therapy and garments.  There are times that I feel "tightness" when I breathe and have nerve spasms in the area occasionally.

With all of that said I don't regret my decision--the chance at added time with my family is worth it all-I just wish someone had told me what to expect.

 

Each of us make personal decisions regarding treatment and you need to feel confident in what you decide is right for you.  Options in treatment are difficult, but as you said--at least you have options.

momwriter

Hi,

I had UMX on left side. I had micromets 1mm or smaller, in 3 sentinel nodes. I had LVI. At, 47, I was +++ and grade 3. MY RO was definite about radiation.

Because I had ALND after Sentinel node biopsy in which they found NOTHING more, I opted to not do direct radiation of my armpit to reduce chance of LE though it did get the edges of the armpit anyway. No LE.

I did 25 days of radiation to a couple spots on the breast and supra clavicle as well. I used mostly calendula cream which I think took good care of my skin. Towards the end it did get an angry burn (my RO wanted that), but it did heal over the following weeks and month.

I have not found I have suffered any bad side effects. My heart is fine. My skin looks how it did before- can't tell difference between radiated and non radiated as far as skin color/texture. It no longer "tingles" as it used to. I am having my exchange next month, we shall see if there are any issues in healing because of radiated skin. I've been so long out, I'm hoping not.

Good luck with your decision!

Tinkerbells

I had 1 positive node with LVI. Her2 +++. Had bmx with SLNB. Both BS and MO said no rads. I had a very specific presentation- the positive node was intramammary, not axillary. I had consult with RO who also said no rads. To be clear, I really wanted rads because I was scared not to. I asked it be presented to tumor board- unanimous decision, no rads. I decided to be at peace with their Expertise and recommendation. Hope they are right

Funclassygal

Since I am starting radiation tomorrow of course I am having the "treatment before freak outs!" Wondering if everyone gets told about the risks of radiation to the heart and lungs or is it because mine is on the left side? Thanks - you are probably thinking I need to chill but can't help to wonder about all of this!

ThinkingPositive

I was in the same gray area as you. RO said that it was my choice if I wanted it, but she was not recommending that I needed to have it. I thought about it and went back to her in two weeks with a list of questions. She told me that I had only one node positive, with Extracapusulated Extension, but to remember there were 16 others that were Negative(she said the amount of cancer (8mm) was small compared to a lot of others she has treated) She told me my surgery was great... I had 10 mm clean margins. My IDC was small only 11mm. I also had LVI...all of this scared the heck out of me. I was stage 2A, Grade 2, ER+ (98%), PR + (68%) and HER2 Negative. I did TC x 4 chemo... and I am now on Fermara. Both my RO and MO told me that the biggest bang for my buck comes from the Hormonal Drugs. My counselor also talked with me because I could not make a decision. She spoke with the RO to make sure I was understanding things. Counselor told me that if the RO thought that I needed to have radiation she would have told me I NEEDED IT. Plus she told me that my risk of local recurrence is small so radiation would benefit me only a very small percentage. I also worried about lymphedema and the possibility of having it now what would radiation do, make it worse, or if I don't have it (no one can seem to confirm whether I do or don't) would I get it from radiation. Radiation increases the risk of lymphedema. It was a very hard decision but I opted out of radiation.. Maybe if it were three nodes positive I would have said yes.

CoyoteNV

Just to toss out another thought. In 2012 I was diagnosed with TN, Grade 3, Stage IIb, with sentinel node involvement. I opted for BMX with reconstruction, chemo and no radiation was recommended.  In 2014, I was diagnosed with recurrent TN cancer in what ended up as an axillary 3-node cluster, which was found in a routine physical exam by my surgeon.  A re-do - surgery, chemo but this time radiation.  The RO said that statistically I was a low risk to recur, but he had recommended to the tumor board that I undergo radiation therapy the first time because of the TN.  That info did not reach me.  At this point, I have completed all the treatments available to me and the doctors say that "vigilance" is now my best defense.

I wish you well with your decision.  It's not an easy one to make.  Whatever you decide, be confident and move forward, but be "vigilant."

Rose0766

hello everybody, I'm glad someone decided to start this thread, I have an interesting conundrum too. I was dx with stage 2b triple positive BC, had node found on US bx'd and was positive, PET scan showed another possible positive node, had neoadjuvant chemo, had right mastectomy with ALND, path report from surgery states no Cancer in breast and no cancer in 17 removed lumph nodes. Pathologically complete response. MO says I need rads based on prechemo clinical dx, waiting for appt with RO. I've researched and read as much as I've been able to find, no data supports known benefit for rads with two positive nodes, it is recommended, but I want numbers! I too have an expander in, I also have the year of herceptin to get thru and 5 years of tamoxifen to go. This is such a difficult decision. RO may say I don't need rads, I will feel better if that's the case. At this point without hard evidence, I'm inclined to say no rads. This whole idea that rads is safe and has very little side effects doesn't bode well with me. And if I do have a recurrence, can't have rads in that area again.

PerAngusta

Hi Rose0766!

PRECISELY! I'm so happy to read that I am not the only one who finds this a conundrum. There is so much data/stats available for all of my other treatment recommendations, but on this matter? The only thing that is for certain is that, the medical professionals DO NOT AGREE. Even in these posts, we can read that some docs have strongly recommended and others have outright said "not necessary". I just happened to get an RO who would not commit one way or the other - presented the conundrum, studies, information, background and then said "soooooo, it's really up to you!". Of course, I have been in this SAME scenario regarding one breast removed or two?? Up to me. Whatever!!! Lol Some days, I expect to wake up and find a medical degree pinned to my chest, where my breasts used to be!!!

My "gut feeling" is that no, I do not need the radiation because there is no proof that I will benefit from it at all! AND I completely understand/acknowledge that radiation has many benefits for other women, in other circumstances. I am ONLY referring to radiation for women who have had mastectomy AND where pathologies indicate that 1 to 3 lymph nodes were effected/cancer. Please excuse me for repeating and repeating this, but I've received a few messages where the title of this thread was not entirely clear to all.

For me, the problem is that the ONLY BENEFITS IDENTIFIED for women (after mastectomy and 1 - 3 lymph nodes effected) fell upon a PARTICULAR SUBCATEGORY OF WOMEN (I.e. within the same original category of mastectomy and 1 to 3 lymph nodes effected)!!! In other words, there definitely WAS a benefit for some women and definitely no benefit for others. So which subcategory do I, you or anyone else fit into? My RO says that it is impossible to say for sure!!!!

In the absence of knowing which subcategory I might fall into….I am leaning strongly toward NO RADS. If I change my mind - it will be because I have learned new information to substantiate the treatment.

Perhaps it will be comforting enough for you and I to know that we are both leaning the same way? Lol I know that I would really like to get through a sleep without dreaming about this particular dilemma!!

Funclassygal

Hi CoyoteNV, thank you for much for telling me about your experience. I did start today and I was quite scared but calmed down and had my first one. I was advised by my whole team to do this so I will trust them as I have all along. Hopefully this will go smoothly. Thanks, VeraAnn

Gully

Hello all,

Interesting topic. I am a bilateral bc patient with LVI and negative nodes. Multiple opinions later, tumor boards at two hospitals, one Dana Farber, said no rads for me after BMX. Reasoning, if it does recur locally, we would like to have the option of RADS at that time. Hope this helps someone. Dont you love it when they say "We can do this, it might help, but its up to you"!

Alicethecat

Hi ladies

I had three high-risk factors - grade 3, HER2+ tumour, near the chest wall - and UK NICE Guidelines 2012 talked about people with these characteristics having radiation for this.

Three years later I'm doing well.

I was unlucky because I have a tiny bit of radiation fibrosis but I would not have known if I had not had an xray. Has no bearing on my life.

It's a crapshoot but...I wanted to do every thing I could and went for the whole caboodle - see signature - and it seems to have worked for me.

My friend had the whole caboodle too and has no fibrosis. Was triple positive. Nine years down the line she's doing fine too. No spread. Doing well.

Good luck with your decision

Alice

Girlstrong

Just thought I'd join in this conversation because I also had this difficult decision to be made. Here's my story...1 lymph node positive via MRI, stage 2 ER/pr- her2+ left side. I did neoadjuvant chemo and had BMX. Final pathology showed all removed nodes were clear but "minute" traces of residual in breast too small to be measured. So in the end I did rads to left breast, left supra clavicular nodes. My RO did not radiate the axilla since , in her words, "nothing is there". No internal mammary nodes done, from what I've learned...that is only done at the discretion of the RO and is based on tumor location, grade etc. Greater than 75% of mets occur to axillary vs intramammary nodes and also rads to intramammary area poses additional risk to heart and lungs. I'm doing great ...I'm now 20 months out from diagnoses. Good luck with your decision.

coraleliz

I had a BMX for bilat BC. I had 2 positive nodes (3mm each) on the left & ITC in a node on the right. I also had LVI on the right. The main reason I had RADs was because I chose not to have an ALND. I had both axillas & chest walls radiated. I definitely got burns. I tried to keep myself busy & distracted. It was like a bad case of poison oak(I live in CA so have never had ivy or sumac). My RO(from UCLA) told me his colleague(from Harvard) thought I should have RADs for LVI on my side with only isolated cells.

I didn't want an ALND & my MO thought I should have one(at least on the node positive side). My BS wouldn't do it. The issue with me was whether or not the studies showing RADs being just as effective as an ALND in women with lumpectomies could be applied to someone who had masectomies.

Brandi999

Oh I'm so glad I found this thread! The only choice I have been given, so far, was rads OR if I had a complete response to the chemo to have the choice to be part of a study where I'd have no rads. I was diagnosed with IDC right breast, 2.9 cm and 1 involved lymph node. I had a PET scan that confirmed that. I have my surgery the end of June and doing the DIEP flap on both sides for symmetry. I didn't know it was controversial to do it with only a few nodes involved. I too am freaked out about the side effects of radiation. I have no living children. My 3 babies died a decade ago. I personally would rather have a better and shorter life than a longer life with lots of suffering. I mean I've done the lots of suffering thing already and I don't have a death grip so hard on this mortal coil that dying scares me. It's the suffering endlessly that scares me the most. So far I'm having a great response to the chemo. My lymph node and tumor were at half their size after the third chemo but I haven't had it looked at yet since starting the Taxol.

Rose0766

I go to see the RO on Thursday. After everything I've read on Pcr and recurrence, the chances are all stated as being low. I feel the risk of radiation therapy outweighs the benefit. Imcompelled to refuse rads if it's recommended, and take my chances.

Brandi999

I'm with you Rose! I talked it over with my partner and I'm not doing radiation. I feel great about it. If I have a recurrence then I'll deal with it then but I'm not going to put myself through more torture for a "just in case".

Rose0766

had my visit with the RO, he is of the school that these are the NCCN guidelines and for 1-3 + nodes this is what we need to radiate. He did acknowledge that there are two schools of thought, the other being treating off the PCR diagnosis, which for me is no Cancer in breast tissue and no cancer in 17 removed lymph nodes. But because of his belief that we treat off prechemo diagnosis, he recommends 33 treatments to chest wall, supra clavicular nodes and the axillary nodes. So now I have a decision to make. After all the studies I've read, I feel this is overkill.

mysunshine48

CoyoteNV - I hope you are doing well. I have a question about your implants after radiation. What changes have you had and will you need another surgery?

Brandi999

Rose, I told my onco that I am choosing not to do radiation and she didn't even bat an eye about it. Normally we go head to head on stuff but not this time. I feel relieved to make that decision for myself.