How does radiation affect You?

[meadowseed]

Hi lovelies. I have stage 1 IDC/DCIS bc and will be getting a lumpectomy and radiation. I’m curious how the radiation will affect me, and how it will actually affect my breast, sensations, feel, etc. Would love to hear from you and Your experiences ! Thanks.

[Dimsdale18 Partner]

Radiation was definitely tolerable. It's a cumulative effect so you may feel more tired with each dose. Some experience a rash that can be rather uncomfortable and if you feel this is happening consult with your Dr who can prescribe something to remedy this. The breast I had radiated got much smaller than my other one.

[meadowseed]

Oh, interesting! I had no idea it would shrink the breast/tissue. I hear that some people feel tired and others not so much. My Dr. said the research isn't conclusive and it's unclear if people feel tired because of the daily grind of going to radiation or the radiation itself. I wonder if the time of day makes a difference.

[Knapweed in reply to meadowseed]

I don't think its the daily grind - its a completely different kind of Tiredness- it hits like a brick after the first couple of weeks And lingers quite a while afterwards- and if you are going to take drugs long term afterwards that adds to it. I had very fee physical effects of radiotherapy- no problems with skin wxcept some tingling. Life is good now one year on - but not the same as before.

[meadowseed in reply to Knapweed]

Thank you for letting me know. I keep thinking that because it’s a lumpectomy/stage 1, this shouldn’t be such a “big thing.” But with each passing day, it feels like a big thing. Maybe it’s mostly anxiety. I wonder if there are other early detected stage 1 folks who could weigh in. Wondering if I’m in denial!

[TMCinNYC in reply to meadowseed]

I just started radiation, and on day 3 I crashed. I am super tired, but it has also been a very busy week. I am lightening my schedule for the rest of the month. I will report back next week, but I can already see a slight difference in my breast appearance. The place where the lump was in slightly more indented. I still have 17 rounds to go. I am diligent about the radiation creams, and add extra Aquaphor to the scars, which are turning darker faster. I am stage 1C. I caught the little brat early. (Named my tumor Nellie after the brat/bully on Little House On The Prairie because she's annoying but ultimately not that powerful) I am glad to see a light before starting the 5 years of medication.

[Mary_Astell in reply to meadowseed]

I’ve had my lumpectomy and SLNB — sentinel lymph node biopsy — and get the results this week. If the stage 1 IDC (ER+ PR+ HER2-) has spread, I will need chemo on top of radiation, reconstruction and 5-7 years Tamoxifen, which induces immediate menopause. It feels like a massive deal. I limit myself to two hours research a day as it’s depressing. Then I walk to lift the mood. Good luck with your treatment. X

[meadowseed in reply to Mary_Astell]

I hear you- it’s exhaustive! Did you get the Oncotype test too? I’m just a tad ahead of you on this journey, so keep in touch if you’d like. Fingers crossed for clear lymph nodes for you!

[Mary_Astell in reply to meadowseed]

Oooh no, should I have? Haven’t heard of that one yet. Yes, let’s keep in touch. X

[meadowseed in reply to Mary_Astell]

Absolutely ask your doctor.

[meadowseed in reply to Mary_Astell]

Or add it to your research rotation

[Cscholtz2021 in reply to Mary_Astell]

Hi Mary - I'm stage 1, ER+/PR+ Her- and would highly recommend doing the oncotype test. It's for early stage bc hormone positive and it comes back with a score that suggests chemo or not. My score was 18 and I was told that I didn't need chemo! PLEASE ask your oncologist about Oncotype.

[grasswidow]

After a lumpectomy I had radiation for DCIS 9 years ago. I didn’t have any fatigue or changes in my breast. This year I had radiation on my other breast for invasive Lobular cancer. Again I had no fatigue and this was after chemotherapy but I did experience some redness which went away in about a month. They should give you some Miaderm Radiation Relief Lotion to apply to the radiated area. I used it 3 times a day. It was very helpful. Everybody is different. Good luck with your treatments.

[beachlake]

I am sorry that you have to go through this. It can be scary but you will get through it. I was diagnosed with DCIS in 2006. I had a lumpectomy with radiation (5 Or 6 weeks). Two lymph nodes were sampled during the lumpectomy (sentinel node biopsy). I did very well with the radiation. I started to feel more fatigued halfway through the radiation. My skin did very well . I used a moisturizer which helped with any dryness. I did develop mild truncal and axilla lymphedema approximately 8 months after treatment. There is no way to know what caused the Lymphedema-lymph node removal, scar tissue, radiation, etc. Over the years, that breast tissue has contracted and become smaller. It is not painful nor does it feel uncomfortable. It is just a change that I and the medical staff have noted. I was told recently that the skin would continue to contract with time. I have had some lymphedema PT and laser treatment on the scar. That seemed to help with the lymphedema. Everyone responds differently, of course. One thing to note is that once you have radiation on a specific area, they really don’t advise doing it again in case you have a recurrence. I found the whole radiation part of the treatment relatively easy other than driving to/from Boston each week day.

[Jhnard]

In 2014 I was diagnosed with IDC- stage one. I had a lumpectomy, a sentinel lobe lymphectomy and SAVI radiation 2x/ day for 5 days. No issues of any kind with treatment. I was place on anastrozole for 6 years which resulted in osteoporosis. Went on Prolia for 1 year. But wanted off of drugs so eliminated both meds to be replaced with Evista- helps with osteoporosis and reducing reoccurrence of the breast cancer. Please feel free to contact with any questions and good luck!

[Vern3]

I was diagnosed with stage 1 IDC/DCIS, no node involvement in 2015. Once, I got over the shock and had a plan for treatment in place, I calmed down although the anxiety did linger. I remember feeling almost embarrassed or foolish because I initially was so anxious over a stage 1 cancer diagnosis. My doctors told me any cancer is a big deal and I had a right to feel this way. But they also were quick to tell me I was fortunate because it was caught so early, making the course of treatment straightforward.

I had a lumpectomy (two surgeries to improve margins) and 5 weeks of radiation. For me, I hit the radiation wall around day 4. I was pretty exhausted. And that weariness lasted for a while after radiation ended. The one thing I do suggest is to start applying radiation cream several days before you start radiation. I used "My Girls cream" and it really made a difference. I applied the cream right after each session and several other times each day. I never had a radiation burn and my skin didn't tan. As for changes to my breast, it is denser now. When I have a breast exam, it is a little sore but nothing unbearable. Plus, I should mention the radiation did affect the color of my nipple. It happened very gradually over about a year. It is now very pale. I was told it likely will remain this way. I know a woman who had her pale nipple tattooed to add color back. I just haven't bothered to pursue this option.

[meadowseed in reply to Vern3]

This is really helpful Vern3. I relate to the feeling of embarrassment too, and it's very affirming to hear you speak otherwise. Thanks!

[quilting66]

My situation was very similar to the others. I had Stage 1 triple negative last year. Lumpectomy, radiation and chemo (no long term drugs for TNBC). I did the radiation first to improve the margins which the team of doctors felt would be ok since it was a tiny questionable cell. Sentinal node biopsy which was clear. I did develop a seroma (fluid build-up like an interior blister) which was quite uncomfortable in my axilla/armpit. It was drained once with a needle and it went down but lingered. 6 months out I had it drained again. Must have been pressing on a nerve. Then was much better, though I did have some cording/stiffness in my arm and side of the ribs. Did stretching/chi kung which helped. Radiation was fine, though fatigue set in about halfway.. 6 weeks total. Definitely use the cream 2X a day. My doctor recommended Calendula first aid cream-over the counter and it worked fine. When treatment was over, I did develop some tanning which went away after a month. So far no aftereffects. I have small breasts so can't tell if it shrunk, ha!

I also felt a little embarrassed /guilty that it was only stage 1. But it's scary and I still have fears it will come back or morf into something else. They don't know what causes TNBC and it can theoretically go to other parts of the body. I guess chemo was the insurance.

[YouToo]

I finished 33 radiotherapy sessions 2 weeks ago. I suffered a bad skin reaction which has only just started to heal but it was to be expected as it the armpit that was radiated which can be very susceptible to broken skin due to the friction.

I didn't suffer any tiredness though yet and wonder was that because I made a conscious effort to go for a 5k walk every day. I found not getting out for a walk made it harder to sleep at night.

[jackandbox]

Hi Meadowseed. In 2019 I had a lumpectomy and radiation for stage 1a triple negative breast cancer. The radiation wasn't too bad but I did get very tired afterwards which lasted for months afterwards. My breast is a little smaller and my skin has changed somewhat. One thing the radiation did to me was to lower my immune system which caused me to get some very painful shingles! Well worth everything though since it saved my life. Good luck!

[Cscholtz2021]

Hi there, I have 6 more radiation treatments of 20! My nipple has changed color and I did experience some itching, particularly for the lymph node area. I can't wear a bra because it's just too itchy and uncomfortable. The breast is definitely red with a sun-burned look. But it doesn't hurt like a sunburn. As far as fatique, I really think I became mentally tired more than physically tired. It is draining to go everyday and I'm also a therapist so cut down on number of clients because I was mentally tired.