February 2018 Starting RADIATION

I spoke with my RO and he showed me my mapping so I could see exactly where the radiation is going. I'm not prone. In my case some radiation reaches a small portion of my upper lung. This is due to my anatomy and surgical margins. I don't receive the full dose of radiation there, but rather 30%. He said it won't impair my lung capacity or my ability to hike and be active. I also asked about scatter radiation and machine maintenance. He said the new machines take scatter into account when they calculate the mapping and it really doesn't come into play as a safety concern. What is supposed to get radiated gets radiated and nothing else.

I also asked about whether the radiation reached my thyroid. He said that can be more of an issue with people who are having their lymph nodes radiated. That isn't the case for me but if it was I would inquire about a thyroid guard. Next time I'm going to ask exactly what is being xrayed. It's for position verification so I think only those specific areas are included. I think these machines are so sophisticated that they can target very distinct areas. He told me they keep on top of machine maintenance like nobody's business. The machine does shut down if anything even minor is amiss. It errs on the side of safety. I felt my RO was honest with me. He is energetic and nerdy. Doesn't have the best people skills but he explains thoroughly and I have confidence in his technical ability and knowledge.

I still hate rads though, lol.

Hi Miranda. Yes I think the nerdy introverted type is drawn to radiation oncology. A friend of mine switched specialities from radiology to dermatology because he didn't like sitting in a dark room working on technical issues and reading xrays. Basically not enough people contact for him. Knowing that makes relating to my RO easier. He's nice and I appreciate his technical expertise. I think having someone do a competent job of the mapping is the most important thing as everything flows from that. My chemo experience was made easier by the warmth of the people. I don't have that at all with my rad experience, not with my RO or the techs, but I think it's the nature of the beast. I soldier on and hope my skin holds up and my lung doesn't get too irritated. I think for me I'm tired of being poked and prodded and having my boobs looked at by strangers. I find it disempowering.

klavans -- That's interesting about the personality types. I agree that rads is a very impersonal experience. I compare it to surgery, which was as personal as it gets, and recovery from surgery, which involved my husband and a lot of caring attention.

The young techs (they are always young!) have been more personally interactive as they get more familiar with me. But the whole thing is over so quickly, it's more of a "no big deal" experience. Showing up is the main thing. I just go into a "zone" and don't let the process bother me.

Joyseeker, I drink a lot more water, and have the same thirst in the middle of the night, but no lip chapping. Haven't had the headache, but strangely, I felt more fatigue at the beginning than now (I'm in the middle of treatment.) Seems like radiation affects everyone differently.

Treatment 8 of 28 today. I am very dry since beginning treatments. I am waking up in the middle of the night so very thirsty. I try to drink even more than I do. Another headache today. I'm going to see how the weekend goes with the headaches. If they begin again on Monday then I'll have no doubt its the treatment OR the way I'm positioned with arms above head and head turned up and to the left. No real skin issues as of yet and I'm very fair skinned. Fatigue seems to be a bit better. If headaches would subside I'd feel better. Anyone else have headaches through the treatment?

Dectoremember: Headaches? None yet. Dryness, kinda. Fatigue? yes! I want to nap, but can't. My problem is when they say I can drop my arms after treatment. Some parts on the surgery side seem more numb and I'm getting odd twinges of pain, very briefly, now and then. I attribute that to numbing wearing off gradually after surgery...which for me, was 2 months ago.

Treatment 9 of 35. Nothing to report except that the Physicist told me that if the robot started leaking, they would get a signal behind the curtain. OK - but would I still get accidentally zapped? No headaches and so far no skin irritation or dryness.

Sweetp - I tried to research those letters you posted, but could not find an explanation. I hope I can get a report about my treatments next week.

Dectoremember - sorry you seem so thirsty and are dealing with headaches. I haven’t heard that radiation should cause that, but it’s not impossible I’m sure. Just complain to your RO. Hope you can find a solution to your problem.

Doofuscat - yes it’s cold. Glad to hear your skin is holding up well. Let us know what the rad techs have to say. Mine were all excited about eating sushi after work today - these kids are ready to relax over the weekend. The girls made me think of my daughter.

Everyone have a good weekend!

Hi doofuscat,

Glad to hear your getting near the end of treatment. So your skin is just red, not blistered or anything? I've only had 2 so far out of 21 and don't really notice my skin even turning pink. Worried about when it's going to hit and be uncomfortable. I noticed both days that I was so thirsty after getting out of the treatment, I drank so much water and the weather is not that hot. I wonder if this is a side effect not mentioned.

Forgot to say Veeder14 that several of us have noticed thirst and dry eye etc.  I still haven't gotten a really "good" answer about it from my treatment center. Ask when you go on Monday and let me know what your techs or RO tell you. Thanks

Hi everyone. I'm going in for treatment 24 of 33 today after a long weekend. My RO gave me Thursday and Friday off last week.

The break was good. My fatigue lessened a bit, yay. My skin is breaking down some. I wouldn't say peeling, more crumbling in a couple of spots, under boob and under arm mostly.

The pain seems reduced some too. I don't know if it's just me figuring out how to move without pulling on the skin or if it's healing. It itches mighty fiercely.

I feel I'm on the home stretch of this journey of surgery, chemo and rads and really looking forward to seeing what life is like as a survivor.

Almost done

LizabethM Thank you for posting. You and I had the same chemo regime and we also have the same rad regime: 16, + 4 boosts for a total of 20. You have always been a little ahead of me so it's been helpful to read your posts as it gave me an idea of what I might possibly expect. Congratulations on finishing. Stay well and enjoy your renewed energy. Hope you are climbing your mountain this summer!

Hi everyone - treatment 10 out of 35. I think I might be getting fatigued, but the time did change and everyone seemed tired at the clinic (or half asleep). My skin has not changed yet - two more boosts then back to external treatments. I’ll have to ask my RO why my boosts were done ahead of most of the externals.

Eightoutof8 - hope your blues went away. You are almost to the halfway mark. It seems the skin gets pink by two and a half weeks on average.

Veeder14 - Doofuscat - I’m not thirsty anymore, so don’t know what to think about that.

Sweetpea- did you figure out what those letters meant on your report?

Shadeshiva - Just 9 to go, so you will be done by next week? The itching is probably worse than the redness or dryness. Hope it doesn’t get any worse for you.

Elizabeth - congratulations on finishing! I love your photo - it looks like you’re ringing a bell for the cows to come in. Hopefully your skin will not get worse. The cold capping really saved your hair

Hi Fellow Warriors!!

I just had my surgery and will start radiation in about a month, so I greatly appreciate all of you sharing your journeys. I have learned so much from all of you, and now I am hoping and wishing that radiation is a lot easier than chemo - which pretty much kicked my tushy after the halfway mark.

In reading through, it seems you all have had some common side effects: sunburn, thirst, and fatigue, but one of my main concerns is that my breasts are pretty large, so I need to wear a bra. I can’t go in public without one - preferably with underwire. I will need radiation underarm and whole breast, so will a bra even be possible??? 🤞🏻

Also, lmk if I missed any side effects and tip/tricks you may have discovered to manage them

THank you and wishing you all strength and positivity!! Rock on!!

Doofuscat - what about hydrocortisone for the itching? That was the only thing that took the itching away on my scalp when I was losing my hair and it was flaking so bad. That drove me crazy for two weeks (I tried other things that didn’t work), until I started using the hydrocortisone cream. However, Benadryl should work. Just 3 zaps to go - lucky you!

Virgo1970 - welcome here! I think radiation should be much more tolerable than chemo. It has so far for me. I’d rather put up with an annoying sunburn than the weakness/sickness I went through with chemo. I’m expecting my skin to become sunburned, but I’m still early with this, so time will tell.

Virgo, I am wearing a sports bra all day, even to bed, throughout my radiation treatments, at the behest of my plastic surgeon. I had direct to implant surgery. The implant is still settling (lowering to its rightful position), and PS wants it to have the support.

I'm halfway through six weeks' treatments, and not too much discomfort as yet. Still, I will be glad when it is over.

littlebee Have you seen your model where it shows exactly where your body is being radiated? I know on mine a sliver of my lung is being radiated. Sometimes ribs are affected by radiation as well.