Chance of lymphedema from rads?

Anonymous · May 2017

I had a great consult with radiation oncologist yesterday. I feel like I would be in good hand with her. This is pre-lumpectomy and pre gene testing so there may be other info that will change my mind about treatment, or change my numbers/odds. But from what we know now (er+/HER2- and I will be on tamoxifen, likely no spread to lymph nodes, non aggressive small cancer) she estimated for me:

15-20% chance of local recurrence if I only do lumpectomy+tamoxifen

5% chance of local recurrence if I do that + rads

That's significant. I pressed her for odds of other rad-induced problems: ngiosarcoma, heart/lungs issue, etc.. she downplayed all of those "new techniques" and "extremely low risk" (even with my left breast cancer). BUT: Lymphedema she said, FROM RADS, even if they are not trying to zap the lymph nodes (if my sentinels are clear) is 3-4%

I had to press her for this, I asked specifically about lymphedema.

I'm not sure if this is a standard risk, or is based on my anatomy. I am not a candidate for prone positioning because of my small breasts and my the cancer is high up on my chest, she drew a picture showing that SOME nodes would be in the beam even if they aren't aiming for them.

This lymphedema risk worries me a lot and is a higher chance than I was expecting to hear. I have limited mobility in my other shoulder already and I like to cook and execise and do photography.. my job involves a lot of typing and other arm activity -- having lymphedema in this arm would be somewhat devastating for my quality of life.

She also said if I do rads now I can't do it again, but if I skip rads and get local recurrence, we could do it then. She brought that up, and I wonder if she was trying to give me a reason to opt out?

I also asked about the IDEA trial since my cancer fits the profile. She said if I were older or post menopausal she would absolutely be recruiting me for it. Thats a trial for post menopausal 50+ year old women on endocrine therapy with low grade/stage hr+ her2- small tumors who forego rads. I fit the profile EXCEPT I am 49 and perimenopausal I asked if there was anything I could do to qualify, like what if tamoxifen puts me in menopause, what about ovary removal. She almost rolled her eyes and said, without a shred of comedy "Can you also immediately turn 50" LOL!

I know she can't "recommend" I forgo rads, they have to recommend current standard of care.

Has anyone else heard from their radiation oncologist about possible incidental lymphedema due to radiation? What were you told? I wonder if it ould it be crazy for me to consider skipping rads due to this

muska · May 2017

Hi Epic, if I understand correctly you haven't had surgery yet but are planning to have a lumpectomy. With lumpectomy, radiation is usually recommended and there are good reasons for that. In my personal opinion, fears of lymphedema are often overhyped on this board, especially in cases like yours when surgery is expected to be limited and there are no indications of cancer spread. That being said your final diagnosis might change after surgery, so I wouldn't consider whatever you select to do a final care plan at this point.

Disclosure: I had BMX, chemo and rads to lymph nodes in axilla, chest and clavicle area. No lymphedema in the upper body.

gb2115 · May 2017

Hey Epic---I had rads to all the lymph nodes after lumpectomy and a surprise positive node found on sentinel node biopsy (tumor was not large). My RO downplayed the lymphedema risk...she said it increases but only slightly, and said if I avoid being obese (I'm on the smaller side), that will help. I worry about it though. I have tightness and tenderness through the entire area, but doing my post-surgical stretches helps a lot.

BUT, that all said, for me it was a no-brainer to get rads. I don't want a cancer recurrence, and for me, without rads the risk of local recurrence was just too high. I don't want to go through this ever again, so if that means my life changing in the future due to lymphedema, then I know I will get through that as well. You just never know where life will take you. I guess it just comes down to what level of risk you are comfortable with.

Kicks · May 2017

EpicSquirrel - you would probably get more information about LE (LympEdema) if you posted your questions about LE in the Forum for LE.

There is no way of possibly knowing rather or not you might develope LE. LE can develope after any surgery (or traumatic injury) no matter how non- invasive the surgery is. Nodes do not have to be removed for it to happen -IF it does ever. While the more nodes removed does put one at a higher risk to developing LE - not an absolute predictor of rather or not it will ever develope.

I have a friend who had non-invasive minor knee surgery and developed quite severe LE in her leg. About 45 yrs ago, I had a severe (no broken bone but severe tissue and skin damage) lower leg riding injury that the Drs expected LE to develope from but never has.

For me, my LE started 9 weeks post UMX. I was 6 weeks into 12 weekly Taxol when LE showed up. So that was 7 weeks before starting Rads.

I do agree with muska- "In my personal opinion, fears of LE are often over 'hyped' on this board- ". IF (and that is a huge IF) LE does ever develope - it can be handled/dealt with. I've been dealing with LE for 7+ yrs now and in no way has it slowed me down/limited my activities in the least. (Spent a lot of the weekend out flyfishing, riding and some hiking. Mowed my yard and another one yesterday with my push mower. . For me, dealing with LE is just a minor inconvience (day garments, night sleeve and FlexiToouch) are quite doable.

Of course, my DX is different than yours so my TX plan was also different (neoadjuvant Chemo, surgery, adjuvant Chemo, rads in that order).

Anonymous · May 2017

thank you for the replies and smart thinking. I will likely do the radiation -- unless something from the surgery or gene testing makes me go bmx instead. I was just surprised to hear such a risk of LE from rads, and wondered I felt others had heard similar from their rad oncologists. Or if an anyone's rad onc talked about how they would try and mitigate the chance during treatment somehow.

Kicks · May 2017

If you do a BMX that still leaves some breast tissue on both sides. It is impossible for the Surgeon, to remove every breast tissue cell. So rads might stil l be in order. What does your medical oncologist have to say?

Anonymous · May 2017

I'm doing lumpectomy regardless, to get more info. I would only do the mastectomy if it will mean I can absolutely avoid the rads, and we won't know that until after more info from the tumor and the SNB. So I am kind of thinking of this as "exploratory" if you will. Breast surgeon kind of agreed -- she said we can always take more later, but you can't take less. She said other women sometimes decide to bmx after the lumpectomy heals, but before rads. She feels it's a reasonable way to help gather more info and decide since I am still waffling.

Haven't seen medical oncologist yet. Only surgeon and rad oncologist.

dtad · May 2017

Kicks...sorry but I have to disagree. Radiation is rarely recommended after a BMX. Yes there is a small amount of breast tissue left. However the chance of a local recurrence is about 2 percent. Avoiding radiation was actually one of the reasons I chose a BMX. The risks just outweigh the benefit for most. Also choosing an accomplished BS from a university based teaching hospital is wise. Good luck to all navigating this disease.

muska · May 2017

Epic, speaking of stats your RO said your risk of recurrence without rads is about 15 - 20 percent. Pretty high and that is local recurrence only, there's also risk of distant recurrence (mets.) What is the risk of rads induced LE? I am sure you can find it in literature and my gut feeling tells me it is lower than 15-20 percent.
Standards of care are there for a reason.
Best

ksusan · May 2017

Radiation seems to be frequently recommended with BMX if there's a positive node.

muska · May 2017

@dtad, I don't think your statement that radiation is rarely recommended after BMX is accurate. If one has positive nodes - just look at the profiles of stage II and III women who posted on this thread - radiation is always recommended.

Anonymous · May 2017

muska,

The RO says chance of LE from rads is 3-4% Chance of local recurrence with rads is 5%

The 3-4% number *might* have been customized to me, I'm not sure, because she drew a picture showing that due to where my tumor is + flat breasts that mean a I can't do prone = some lymph nodes will be in the rad field

She said the 15-20% local recurrence without rads might change for me after surgical pathology is in (my lumpectomy is tomorrow)

That's my dilemma. I am actually wondering if all of the rads possibilities (LE+heart+lungs+angiosarcoma etc) is worth a net 10-15% decreased chance for local recurrence. That's what I'm wondering about -- if it seems crazy to risk that recurrence rate to avoid these possible complications (since I AM someone who tends to get comlications, and the LE complication in particular would be devastating to me given my mobility issues with my other arm). Also if I did get local recurrence I could still have rads available later. If I do rads now that's closed off in the future.

muska · May 2017

Epic,

Good luck to you tomorrow, I hope it goes well. Keep us posted on the results.

Also, please keep in mind a second opinion is always an option.

Kicks · May 2017

dtad - you misread my post or read something into what I wrote that wasn't there. I did not say at all what TX would follow a BMX. Just that there are breast tissue cells that remain after a UMX or BMX. I did say "So rads MIGHT still be in order." - that's true - rads might be in order.

Most of what I wrote about is my personal experiences with LE. Yeah - it's a minor inconvience to deal with LE for me. BUT I am not limited in living a great life and loving every second/minute/day that all my TXs have give me in 7+ yrs. All types of BC are not the same or the TX protocol the same. Nor do we all enter TX in the same health.

There are quite a few BCers who come to this Site that have had BMX and then had Rads.

Tpralph · June 2017

ksusan is chemo also standard tx with a positive node?

ksusan · June 2017

My understanding is that the standard is that with 1-3 nodes, it's a clinical discussion. It was recommended to me by my facility's tumor board and I wanted to throw everything I could at the cancer.

Chance of lymphedema from rads?

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