Radiation after mastectomy

Walden1

Anyone here advised to do radiation after mastectomy with zero nodes? My radiologist recommended it because of my age and two multifocal tumors. Anyone else get a recommendation for rads after mastectomy. If so what reason did the doctor give? Was oncotype used to decide

SummerAngel

Radiation is not commonly recommended when the mastectomy gets clean margins and no nodes are affected. Your RO's reasoning doesn't fit with NCCN guidelines if the margins were at least 1mm.

Edited to add that there is an asterisk that says "young age" can also be a factor. I assume that means younger than 40.

Runrcrb

i was diagnosed at 55 and had multi focal tumors. My surgeon indicated radiation as the treatment following the mastectomy. Lymph node involvement added chemo.

I think of surgery as removing, radiation as making the area inhospitable for recurrence and chemo as targeting anything that slipped beyond.

Radiation was no walk in the park but i have no regrets on the treatments I received

SummerAngel

Radiation is indicated when lymph nodes are positive.

Walden1

Summer-thank you so much for the NCCN reference. I checked their site and they have an excellent summary about radiation for patients. All your points are noted there. Also noted there is the recommendation for radiation with zero nodes if your tumor is over 5cm. Guess that’s what triggered the strong recommendation in combination with my age, as I have none of the other indications for radiation. I have two 2cm tumors that are very close together, totalling about 5cm of disease based on imaging and confirmed in pathology. I’m not sure how NCCN define young age, but I’ve heard others say under 50. It’s debatable weather I need to do nodes and whole breast according to NCCN. My radiologist did admit that I’m in a grey area, so she wouldn’t pressure me either way, but she does recommend it.

Anyone else given similar advice ?

Walden1

runrcrb-thanks for sharing your experience with me, I noticed some very recent studies confirming the benefit of rads for mastectomy with 1-4 nodes. Congrats on completing your treatment! Hoping rads won't cause my scar tissue to tighten up too badly or Lymphedema. Did you have any longer term side effects?

Runrcrb

Walden1 - I see you had a mastectomy earlier this month - do you have reconstruction plans? I ask because radiation was tough on my breast (and tougher on me over all than chemo was). I had a tissue expander in for the year of my treatment. When I compare my breast selfies through the year, radiation took a toll. In my DIEP surgery, my surgeon replaced much of the skin on the underside of my breast with the skin from my belly. My mastectomy was both skin and nipple sparing so I had all of my original skin. Later this year I will have him go into my scar from the axillary incision and remove what must be scar tissue underneath in the hope that my skin will lay smooth and my lymph system will work a little better there. I did have some lymphedema after radiation. It may have been induced by the radiation; unfortunately I broke my elbow on that side 1 week after radiation ended (and spread 4 cubic yards of mulch 2 weeks later) and these things probably exacerbated it. (No one was surprised when I reported that my surgeon referred to me as one of his type-A patients.) When I feel it, the swelling is mostly in the trunk/breast, not the arm.

Walden1

Runrcrb-I’m sorry about the side effects you have experienced. I have no plans for reconstruction, but I’m 44 so never say never. My radiologist recommended a 5 week schedule, rather than 3, just in case I do reconstruction later. Apparently they are equally effective but the skin reacts better for future surgery. I do have concerns about increasing tightness and Lymphedema, but that is a small price to pay if it’s going to prevent reoccurrence.

It is highly likely that I won’t do reconstruction but would like to improve the baggy puckered skin at my incision so I hope Radiation won’t make that more difficult. Hope you are feeling better these days. Did you have a lot of fatigue from rads? What can I expect overall? Chemo was pretty bad for meso I hope it’s nothing that exhausting.

Runrcrb

walden1,

I didn’t notice fatigue during radiation. My friend Mary was exhausted during radiation. I had pain from about 3 days. On a 1-10 scale, 3 most of the time with some spikes to 5. Not sure why as i had shoulder pain which was outside the radiation field. That cleared up in time for the constant pain of sunburn and swelling. I worked through all 7 weeks and exercised. I put aquaphor on my breast 2x a day. The skin sloughed off in the 4 weeks after i was done. A year later i can see the line of the radiation field on my trunk/under my arm but don’t notice it on the front. PM me if you want a photo.

Cpeachymom

Walden- you may find that rads actually helps with the “baggy puckered skin”. I had skin sparing mastectomy, so I was left with loose skin intentionally. Well the rads tightened most of that up. It definitely improved the scar under my arm from SNB. Of course, the skin just peeled off, which was not pleasant, but the scar lightened up. (Looking for those silver linings!) Hoping to begin recon soon, and I’m mostly confident the skin will be fine

Walden1

Thought I would post again to give you an up date. On my request, my case was reviewed with about 8 ROs, and they all agreed that Radiation is recommended. This was based on my age (44) and multifocal tumors totalling 4cm together. Only debate was weather to include all nodes with the chest wall. Greater risk of Lymphedema, more lung exposure if all nodes are included. Half the doctors recommended including chest wall and all nodes (medial,arm pit,clavicle) and half recommended chest wall with just medial nodes since I'm not “node positive”. Leaning toward including everything, just to know I did everything possible. However, sideffects are concerning if it's unnecessary. Not sure how best to decide between the two. Wish I had a crystal ball. Don't know who else could possibly give me guidance on this besides the ROs. Any thoughts

Cpeachymom

walden- so... if they do your nodes, they already told you they'd get your lung. But the supraclavical nodes are right near your thyroid, so you should consider that too. According to my RO, they have “a lot of patients” who have to go on thyroid meds later. That info was NOT given to me, it’s not on my consent form. I was Very angry with the nonchalant attitude about frying these important parts! I did end up with radiation pneumonitis from the lung damage- that’s like a 1% chance- but I was that one. Took months to treat. I would do rads again knowing what I now know, but if I was node negative with no LVI, I would skip the nodes.

In the end we all have to do what we’re comfortable with. I just wanted you to have the full info to make your decision. Good luck to you.

Walden1

coeachymo- thanks so much for warning me about the thyroid. My family has a long history of thyroid issues so I can see why you would be angry. If it helps at all, my RO said the thyroid is not typically in the field of radiation but could be hit by scattering of radiation (perhaps that is only for right side treatment). Not sure if you were right or left. Anyway, my mom also lost her thyroid after breast cancer treatment, and she is convinced it was due to the radioactive tracer they use for mugascans. (She had whole breast rads, no node rads). Not sure where she got that information from, but thought you might be interested.