Introduction and some questions regarding radiation

dcis416

Hello everyone, I'm new to this and reading all the posts I'm feeling rather ignorant. Throughout this whole ordeal my doctor(s) have downplayed everything and honestly I haven't been too concerned but reading this forum has gotten me more worried. My story in short. I went to the doctor in the fall complaining about some tenderness under my arm. She examined that and determined it was nothing but also during the breast exam there were a few cysts so she said she would send me for a mammogram and US to be sure as well as the fact I had never had one and was 41. Some abnormal calcification showed up and I was sent for a biopsy. I had a biopsy and that showed some abnormal cells but she then said that they needed a larger sample to be check to make sure it was nothing more serious. My surgical onconlogist gave it a 15% chance it would be DCIS. I got all the forms for the second biopsy (Which is what she referred to it as) and they all said lumpectomy. She never referred to it as such. Honestly it was downplayed so much I didn't give it a second thought. The lumpectomy went fine although I didn't expect the incision, bruising and scar tissue to be as bad as it was. It's been a month now and things are looking better but I feel like I should start educating myself a little better. So I went to my follow up last week and she told me that surprise, it was DCIS. She said I now need to meet with two other oncologists (radiology and medical?) and that I would be referred to for radiation for likely three weeks. She insisted this was not cancer and I was not to worry. She went over some stats - reoccurrence with just lumpectomy (now it was being called a lumpectomy) and with radiation as well. I also have some genetic history that might make me more at risk for reoccurrence and am going to be doing genetic counselling as well.

Anyways, to my question and main concern. I am just starting a new job and the doctor told me I could get radiation done at night time. However, I really want to understand the side effects. Of course I've consulted "Dr. Google" and see some seriously burned breasts - again, doctor downplayed it as though it was a "Sunburn" - I've never actually sunburned seriously so I don't know what that feels like and I've read that it can be very itchy. I can just picture myself at working scratching away. As well, the fatigue part scares me. How long did you have radiation for? How long was each session - she told me it was about 5 minutes, is this your experience? Did you work through it? How tired are we talking? After the course of treatment was over, how long until the 'sunburn' was healed, did it heal completely?

Would love to hear your experiences, thanks for reading

Jelson

welcome, I suppose everyone is different, but I kept myself moisturized with plain aloe vera - no mint, no scent - and calendula ? cream. really slathered it on after the treatment. no fatigue - in fact I felt energized. Your protocol is shorter than mine and I had boosts - additional targeted radiation - but despite that, only mild discomfort in the last week (of 7?) and the week after that. I think I had some lingering discoloration for a while - but there was no long term discomfort. you will have a long appt where they determine exactly the radiation field, but then during the actual radiation sessions, they position you and then zap zap you are done - in a well run office, it shouldn't take much time at all. it sounds like you might be er+ and will be offered probably tamoxifen under the supervision of a medical oncologist. so yes, most of us have a breast surgeon/surgical oncologist, a radiation oncologist and a medical oncologist.

dcis416

Thank you for the response Jelson. That's reassuring. It was my surgical oncologist who mentioned 3 weeks treatment but I have not yet met with the other two oncologists so we'll see if that changes. The added stress of starting a new job and having to take time off is worrying me. Obviously I need to take care of my health but I don't want anything to happen to my job.

Kkubsky

I am in the home stretch of radiation. My plan called for 16 whole breast and 2 boosts, so 3 1/2 weeks for me. It is a higher dose of radiation in a shorter period of time than the standard treatment. I had my 11th treatment today. So far no big side effects from the radiation. I have cream the dr gave me which I use 2x a day. Also was told to avoid soap and to not use deodorant. The initial simulation for rads was a longer appt. But now they are very short. I just barely get comfortable on the table and they are done!

I have not stopped any normal activities during my treatment. I still have 7 to go, so maybe there will be some side effects yet to come, but so far so good. I think that any fatigue I may have felt is more due to mental stress.

I met with a surgeon, radiation oncologist, and a medical oncologist. I will not be doing any hormone therapy after radiation as my DCIS was ER/PR negative. I have follow ups in 6 months....

ChicagoReader

Welcome, dcis416. I'm sorry you have reason to be here, but glad you found this site. You'll find lots of support and information here.

The planning session (sometimes called the simulation or "sim") takes 60 to 90 minutes, but the treatments themselves take only 5 minutes or so. I spent more time dressing and undressing than I did on the treatment table.

Some people go through radiation with little or no side effects. I had some skin issues, but they healed in a few weeks. My RO (radiation oncologist) told me that the skin effects would peak one to two weeks after treatment ended, and that was true in my case. I also felt fatigued. The fatigue was cumulative -- it built up as the week went on and eased up a little over the weekend. It also got worse the longer treatment continued.

The various threads on radiation contain many helpful tips. Some things that helped me were drinking lots of water, walking even on days when I felt tired, and getting some cheap cotton tank tops to wear over the Aquaphor, which can be messy.

Wishing you all the best.

Moderators

Hi Dcis416-

We want to welcome you to our community here at BCO. We're sorry for what brings you here, but we're glad you've joined us, and hope you find the support and encouragement you need as you begin your radiation treatment!

The Mods

percy4

HI there - All will be well. I had my lumpectomy. Then; I did the three-weeks plus one week of boosts course of rads. I was told to expect some fatigue around week two, but I had very little. So. Brought pure aloe gel with me to the visits, and put that on there, right after. My go-to cream was called MyGirls. MyGirls.com., inexpensive and my RO nurses were very impressed with it. A lot of natural ingredients, all approved by them when they looked at it, they even made a note to to tell other women about it. I did get a pretty good burn after a couple of weeks, but, with the cream, which is not very oily, I had very little skin breakage (small slits which may or may not occur) and very good recovery from rads burn. I recommend it highly. Also; and I learned this from the Chinese Medicine Clinic nearby, stretch your pecs while and for long after doing rads. I used a white roller, so I could lie on it with it vertical, and pull my arms back. If not , just do "wings" to pull the pectoral muscle pulled out. Apparently, rads can cause contraction of this muscle, and that can cause a stiffness and "lifting" in the breast area. So. Stretch. You can look up more specific pec/breast stretching while doing rads exercises online. xx

Annette47

I had 6 weeks (5 regular, 1 boosts) of radiation over 3 years ago. I had zero skin problems. The last couple days, during the boosts, my skin got a little red but no itching or irritation. I did have some swelling in the breast though. As for fatigue, it was there, but not so bad I couldn’t function - just made functioning a little less enjoyable, LOL.

I used pure aloe 3x a day. The treatment itself does only take about 5 minutes, but depending on your center you may have some time waiting to be called back, plus of course the dressing and undressing.

Percy gives good advice about stretching, too.

Hopeful82014

I also used pure aloe (chilled) in copious quantities during my 7 weeks of RT. I also used Boiron calendula lotion and Emu oil at night. I had minimal skin issues - my MO was shocked at how normal my chest looked 3 weeks after the end of RT. My RO just kept saying I was doing great - followed by "I told you so." Which she had.

beachw3

hi, did anyone experience fatigue.  I am on day 12 of 33 and am super tired.  I am done for the day by 2 after I have had my radiation at 11:30.  just want to go home and go to bed.

 

 

barbe1958

I was attracted to this topic due to the rads so I hope you don't mind if I butt in.

I'm not having skin problems except tanning - I'm 18 treatments in of 25. I did start to get itchy with little red bumps and saw trouble so I told my RO and got hydrocortisone cream. Worked amazing! I was told that Aloe is just for soothing (I keep it at work) and can even dry out your skin. You need a good moisturizer and don't want to have to undo what the Aloe is causing so I use the Aloe sparingly. I moisturize after each treatment including my back and again at night. I use the hydrocortisone twice a day as well. A big difference I think is that I don't bathe every day and "scrape" off a layer of skin. I'm kind of leaving it alone. I don't have breasts so I don't have an issue with a bra or too much heat.

As for exhaustion - well, treatment is EVERY day (except weekends) and then on to work! I have to drive an hour and a quarter to the cancer centre, have my treatment, then drive an hour to work and then an hour home after a full day. So that part is exhausting. Having said that, I've had a couple of incidents where I was absolutely DRUNK from exhaustion! I actually went to an office with solid walls (mine are glass) and had a nap one afternoon! I have Fibromyalgia as well which can exacerbate any un-normal activity I'm doing, if you know what I mean. So I don't know if my exhaustion was rads or Fibro. But if I get a GOOD solid sleep I feel better.

Good luck, sweetie!! And eats LOTS of protein!!! Your body needs it to heal.