one lymph node positive, mastectomy with radiation or not

Singapore75

Hi ,

I am new here. I am 42 years old, triple negative, stage 2 , 1/26 lymph node involvement. I had lumpectomy with recon back in March 2017. I finished my chemo 7 weeks ago. Recently I got BRCA1 result and it is positive though nobody in my family has breast cancer. My genetic councelor suggested to go for double mastectomy and oophorectomy. Radiologist suggested if I go for double mastectomy, I won't need radiation. He said as I got wide clear margin, 25 lymph nodes taken out for 1 affected node, I would be safe. I went for 3 radiologists opinion; 2 of them said same thing, one suggested radiation must. I am confused to think how safe I would stay without radiation. I am worrying about lymph node area as there won't be any protection without radiation. It's just my thinking.What should I do now? I have to take decision within this week. Any suggestion would be really appreciated.

DX: 3/11/2017, IDC, 1.9 cm, stage 2, grade 3, 1/26 node, triple negative. Surgery: Lumpectomy 3/16/2017, Chemo: FAC 3 cycle, 12 weekly doses of Taxol & Carboplatin

gb2115

Any idea how much cancer was in the one positive node?

That's a terrible decision to have to make. I had my lymph nodes radiated, 1 out of 3 was positive. I wouldn't have felt comfortable not getting the radiation, but they only took 3 nodes, so that was a given for me. I wonder sometimes if stuff is still lurking.

mike3121

Just to relate my wife's experience along the same line. She was diagnosed Stage 4 right off in Dec 2012. Large tumor in the right breast with cancer in one lymph node and a small met to her spine. She was given AC and would have had Taxol, but suffered an extreme allergic reaction to it. Oncologist recommended against a mastectomy. After all that she was on AL's for a bit, but too much SE's. She was then put on tamoxifen. Well, after 8 months her estrogen positive (ER+PR+HER2-) cancer in the breast went crazy and was removed. Biopsy showed her 100% estrogen positive grade 1 had, at it's core a 30% estrogen positive, grade 3 tumor. 19 lymph nodes were removed and 9 of those had triple negative breast cancer.

Right now she's on Xeloda as she's got numerous triple negative mets to her spine and hip bone. Maybe, if the oncologist had recommended having the breast removed right off none of this other stuff would have happened.

Singapore75

Hi gb2115,

Thanks for your reply. My 1 positive lymph node had 2.5 micromet. I forgot to write my tumor grade was 3 and after chemotherapy I did petscan. It came clear. If I take radiation, my affected breast and lymph node would get protection but not other breast. If I go for double mastectomy, lymph node would left unguarded. So I am overwhelmed by this situation. after talking 3 radiologist, I am still feeling helpless

Singapore75

Hello Mike3121,

Thanks for your reply. I am so sorry to know your wife's situation. A big hug for her. I am ready to do double mastectomy because of my BRCA1 positive, just unsure about the radiation. I took 3 radiologist 's opinion, 2 of them don't want to give radiation after mastectomy. I am just having hard time to accept staying without radiation after mastectomy, there is a time limit for effectiveness of radiation and i am losing it. I have to take decision in this week.Either i can take radiation and keep the breasts for a year and do mastectomy or straight go for mastectomy without radiation. I am just worried about lymph node areas

mike3121

My wife tolerated radiation okay. The last week was the worst, like a bad sunburn. Everyone is different. Radiation Dr. said cancer coming back to a radiated spot is less than 5%. Her experience anyway.

gb2115

They can't do double mastectomy and still radiate your lymph nodes?

muska

I would say being BRCA1 positive you need a mastectomy. Why can't you do mastectomy first and leave the radiation question open for now? Mastectomy might provide more information.

Cpeachymom

Maybe I misunderstood. If they took out your lymph nodes, why would they radiate them? They're not there. They wouldn't do the lymph nodes on your good side anyway. You can still have radiation after mastectomy, I did. But it would probably only be if they found something in your nodes on the other side, or LVI. I wish you the best, whatever you choose!

Cpeachymom

Also, be careful if choosing to delay mastectomy until after radiation. Radiated skin does not heal well and you may have unnecessary complications

Singapore75

Thanks all for your response.

Gb2115, Radiologist think my tumor was small 1.9 cm, 1 lymph node affected. If I want to keep breasts, I would be benefitted from radiation. As I want to do BMX, I wouldn't be be benefitted from radiation after BMX.. Their opinion: lesser benefit than complications. BS said as he took out 25 lymph nodes for 1 affected, I shouldn't be worry. It's just my fear torturing me :-( Also effectiveness of radiation is good till 4-12 weeks after chemo. I am on 8 weeks. Either I have to start radiation now or after BMX there won't be any time left for radiation.... If any option comes

muska, that's a good information. MX might provide more information as you never know if something hidden there.

Cpeachymom, Thanks for your suggestion and wish. I am not thinking that they would do radiation on my good side. I am just thinking though surgeon took out affected one and extra 25 for precaution, is there any chance to pop up new invasion from that site as that area wouldn't be radiated. I know Dr knows best, but you know how fear eat us ! May be I am overreacting. :-(

vlnrph

Not to add further worries, but be sure you understand that radiation causes DNA damage which, in combination with your known BRCA mutation, could possibly allow new tumors to form.

I don’t think this risk is well quantified however rather than push for additional treatment, perhaps you can trust that chemo took care of any rogue cells in existence. Focus on keeping your own immune system healthy so it can attack and eliminate whatever abnormalities might show up.

Also, your chance of lymphedema goes up...

MaryToU

I had stage II,and a stage I in my left breast, 9 lymph node removed, 2 were positive. Had a mastectomy on the left breast and went through chemo. After talking to all my doctors, my surgeon, oncologist, and the radiation doctor, I chose not to to have it. After weighing everything, the side effects from radiation were worse that the extra that the extra percentage radiation would give me to help prevent recurrence. If you have a lumpectomy, radiation is automatic. With a mastectomy, it depends on it the lymph node are involved and how many. If there are four positive then radiation follows chemo.

Singapore75

vlnrph

I think your diagnosis and mine are same except I am triple negative. I am looking for persons who are in same condition and what their Dr recommended. Did you do radiation? I couldn't get it from your signature. What is the meaning of d/t micromet from your signature ? There are two options for triple negative carrier, chemo and radiation but horomone positive persons have lot of options. As it is aggressive should I go for radiation! Lot of things going on my mind. Thanks for your suggestion.

Marytou

Thanks for your suggestion. How are you now? Are you taking any therapy?

vlnrph

I had a tiny area of abnormal cells (official term is micro metastasis) on the sentinel node which was not seen during surgery when a quick cross section is analyzed for gross disease.

Using my own abdominal fat, reconstruction was completed by the time a full pathology report was done. Radiation would have caused damage to the DIEP tissue transplant so was not an option.

Have you also put your questions on the triple negative forum? It certainly is a scary situation but you are wise to be doing such good research! Another website to look at is one where many BRCA mutation carriers post called FORCE. It stands for Facing Our Risk of Cancer Empowered.