Radiation March 2019

beach5

For what it is worth, my compression tank and zip up sports bra that I've lived in recently are as follows:

https://www.walmart.com/ip/Flexees-Cool-Comfort-Fi...

https://www.amazon.com/Womens-Sports-Wireless-Post...

Only 6 more treatments to go, yay! My shoulder, arm and neck muscles are really bothering me...maybe just constrained sleeping, or maybe 25 minutes a day with my head turned and arm over my shoulder:) Can't wait for when I can get a massage!

mellee

Thanks for the links, beach5! The tightness of the compression tank didn't irritate your skin?

Flower216

Beach and Meliee….thank you for the recommendations for creams and bras!  One of the radiology techs mentioned that people like the super soft AnaOno Shelf Bra Camisole, but unfortunately it is sold out and a sales rep said they wont be in for a few weeks. After my surgery I used the GenieBra. I wonder if that could work, although it is not super supportive.

For those of you that are almost finished with your treatment...CONGRATS!!!!

JanetMara

Hello Kec1972

Thank you for starting this thread/topic.I actually was advised to take Chemo and radiation after my L mastectomy but id did not go, seeing my friends who had radiation was horrible,not to discourage anyone going for radiation-- My uncle had 30 day radiation 6 yrs ago for prostate and he has been bleeding in his large intestines but up to now he's still alive,I observed someone who went for radiation for his lung cancer and he developed radiation pneumonitis and became very sick,very short of breath and became dependent on oxygen and finally did not make it,I also saw someone who had radiation on her neck due to clavicular tumor and she developed cement like hard lump and can hardly swallow and someone who went for radiation for same lump on her neck and now cannot swallow and also developed sores on her skin...Seeing what happened to them,I am so scared to go for radiation.I had left mastectomy in 2017 after 2 treatments of THCP and lie I said didnt go back for chemo and radiation,there was a small lump on my clavicular area that has grown bigger,saw my MO in July 2018,Had another 2 sessions of THCP,the side effects were so harsh on me so I was not able to tolerate it,my MO now recommends radiation..I am so scared to go for radiation as it is close to the artery on my left neck, may cause injury to it and I might have a stroke.

I am in big thoughts as I am not convinced for radiation as a good treatment as well as chemo and am waiting for my PET SCAN results and go from there.My ONCO said he did not feel anything when he palpated my left side of my neck. At the same time,I started on raw veggies as I can tolerate,I avoided animal proteins and SUGAR as it feeds cancer,tried to make my water alkaline,adding baking soda to my water,hopefully it helped shrink the tumor.

For everyone tolerating radiation,kudos to you ladies.

Praying for everybody.

Jacy

Hi rad sisters, I had my simulation last week and will start treatment on the 12th. I have appreciated all the advice regarding potions and lotions that have helped you. My surgery was nearly 6 weeks ago. The incision for the lymph nodes has not healed as well as the other incision to remove the tumor. Some days it's ok and some it gets red and tender. I'm going to have my BS take a look at it Thursday. I'm concerned about having radiation on an already tender area. Have any of you experienced this? If so, was it made worse? The RO looked at it last week but of course that day it looked better. I am mentally ready to start treatment and get it over with so I'm hoping the BS gives her ok. Your thoughts and experience are appreciated.

Elephant

Hi Jacy: My incision was still red and tender when I started my rads; I have now done 11 sessions and it has not made the incision any worse - it is still red and tender, I think it takes quite a long time for it to get totally healed.

kec1972

Elephant, are you more aware of the scar tissue at your lumpectomy site? I dont know if it's just my mind or what, but I feel like the scar tissue is def more tender and/or getting bigger. RO said it's normal. Wondering if it's worth a call to my BS...

santabarbarian

For people afraid of radiation damage: investigate Proton Radiation. That's what I am getting. I had a left sided TNBC, and got a pCR from Chemo. But they still recommend rads. I had concerns about heart & lung damage from rads. The difference w protons is they *stop*... they do not pass all the way through the body. They can be programmed to stop and release the rads to the tissue being radiated, therefore less radiation reaches healthy tissue.

My Obamacare covered me, and the center limited my copay to the out of pocket max of my plan (which I will definitely reach). I am just past half way through and my SEs are reasonable so far... reddened, slighly itchy skin. No pain. A bit of fatigue. I think pretty similar to SEs from regular rads.

Proton rads are also useful if you have anything that can't be resected or residual tumor after neoadjuvant chemo. Most people do not know about Protons. There are 22 places in the country that offer proton radiation, so you may need to travel for it. If you google the list of centers will come up.

Sueter

I haven't started any post surgery treatments yet. Just had lumpectomy in right breast with sentinel node biopsy. My tumor was .9cm before surgery(during initial biopsy) but after surgery it was listed as .4cm with no lymph node involement and clean margins. In trying to decide if I should do 3 week coarse of radiation. Definitely not taking any ai.can't seem to find much info on invasive lobular carcinoma. Any thoughts would be very much appreciated.

Elephant

kec1972, I can't decide if the scar tissue is a little more pronounced or not. One time I came back from my rads and was sure that the scar was much more red than it had been, but by the next day it was normal so I think that it was just my imagination. At first, I kept on inspecting the lumpectomy area as I was sure there would be some redness or changes, but now I don't really look at the area very closely anymore.

Elephant

Sueter: I think that you should follow the recommendation of your doctor. Both my BS and MO said that after a lumpectomy the recommendation is to have radiation to make sure that any cancer cells that may still be in the breast are destroyed.

santabarbarian

You could also post on the ILC board and get the wisdom of others with your diagnosis....

kec1972

Sueter: I would definitely follow the recommendations of your docs. Generally radiaton is always recommended after lumpectomy; it's a "package deal", if you will.

How is everyone doing so far? Today was number 10 for me, out of 21 total. Skin is definitely changing color, though I don't have any itchiness. I'm putting on pure aloe twice per day, then the cream I was given at the center after that. My poor nipple definitely looks and feels sensitive and burned. Scar tissue def feels more pronounced. Also, I'm starting to feel the fatigue, usually starting around 2pm or so, slight nausea too Does anyone's breast feel firmer from this?

mellee

Hi Sueter, invasive lobular carcinoma is known to be "tricky." It often can't be felt as a lump, has a tendency to be multi-focal (meaning more than one "spot" of cancer in the breast"), doesn't show up as well on imaging, and is more likely than invasive ductal carcinoma to recur locally. So I would be surprised if your doctor wasn't strongly advising radiation. It is the best treatment to ensure that any remaining cancer cells in the breast are killed off.

If you're not sure about radiation, why not get a second opinion? That helped me both originally and with my recurrence to be sure I was on a wise treatment path. You might want to see a second MO as well. Hormonal therapy is usually really important for women with invasive lobular carcinoma, since it's almost always strongly estrogen positive.

Misha13

24/28 today! I’m in the homestretch! My underarm is the worst spot by far. Dark red, peeling a little, ouch! Doc said lots of Aquaphor and bacitracin. My foob is definitely swollen and has gotten more firm. I try to massage around it to keep it loose!

I’m feeling much better emotionally today. This weekend I was wallowing in fear and anxiety. Thanks for those who sent well-wishes!

Rads has been okay overall! I am feeling some fatigue but compared to chemo, it’s been very manageable. I am itchy and rashy and red in places, but it is not interfering with sleep or work. Hopefully it will stay that way!

kec1972

Misha, that is great to hear! You got this! 👍❤️

Jacy

elephant, thank you. That gives me hope that my tender incision will also do okay

beach5

Woohoo Misha! Almost there. I finished regular rads today and doing 5 boosts starting tomorrow. So right behind you!

Mellee - Weirdly that compression tank works great for me - I pull it up from the bottom and the slick fabric actually feels kind of good. I realize its not for everyone, but solves my support issue in a light way...and I can disrobe fast:)

Kec - Definitely feels a little tight. Today my itching moved to my back, which is a bit frustrating. My upper chest/shoulder area is having some skin breakdown, but more like bad sunburn. My underarm (I'm getting lymph nodes done) has gotten really dark reddish in color. Tired, but for me its totally doable.

Hugs to all.

santabarbarian

I am getting pretty red and a bit itchier. I am 16/28.

Another patient at my rads clinic mentioned a skincare product to me, and raved about it, and so I ordered some. It is very soothing; just began it tonight. It was designed by a RO. It's called "CamWell Herb to Soothe Cream"... it is a bit pricey... herbal/natural and nice consistency that's 1/2 way between ointment and lotion, soothing and easy to spread. Giving it a try!

Rav

First boost today. Same equipment with a device attached to it. It goes very close to the body without touching.

During the “normal radiation” it felt good to be under the warm blanket after all lasers were aligned. For the boosts they need the boost area uncovered.

Radiation takes around 30 seconds. Positioning took around 3 minutes as they draw dots around the scar using a rule. The huge monitors don’t show just tables & numbers anymore. I noticed one of the monitors had a rendered image of my torso containing a scar and several numbers around it.

I will try to “investigate” more tomorrow.

1 down. 3 to go

🙌

santabarbarian

My CAM-WELL Herb to Soothe Cream report:

Thank you, thank you to the anonymous lady in the rads waiting room.... I put it on last night and my redness was down by HALF when I woke up this am. Wow! No wonder it's pricey ($25/ tube)-- it really works. Anyone with rashy red and itchiness, get some of this. It's on Amazon. The tube is small; I just got one initially to try it, but I just reordered three more. (There is a 10% off coupon on Amazon.) I feel great hope that I can sustain myself at or around my current SE level with this stuff; I have very sensitive skin generally... I am so relieved!!

Diaval

Vanicream. Cheap. Readily available. Not greasy. Free of dyes, fragrance, masking fragrance, lanolin, parabens and formaldehyde. (Who puts formaldehyde in a skin cream... or is it supposed to be anti-aging??!?!) And recommended by the #1 hospital system in the world. Blessings.

kec1972

How's everyone doing? I had number 12 out of 21 total today. Skin looking good. My nipple is definitely sensitive and swollen. I've been putting aquaphor on and it seems to help. Can't wait for this to be over!

mellee

I just finished 7 out of 32. No skin side effects yet. I've been slathering myself at least 3 times daily with cream (alternating between Miaderm and My Girls).

Of course, I'm getting intensity-modulated radiation therapy (IMRT), which is easier on the skin. My RO said most people getting IMRT in his practice don't see any skin reaction until week 3 if at all. So here's hoping!

santabarbarian

I just finished week four of Proton Rads. I am at 19/28 - should be at 20, but one day was cancelled due to a power outage. Now I am RED. (And yes, it got red in week three.) Luckily it is not painful at all. Mildly itchy but ignorable level of itch. Just freakishly red. I feel like a harlequin because it is such a precise border between red and white, right at the midline between my boobs.

I am glad to have the weekend to soak in aloe and slather on the CamWell cream, which I love. I tried Domeboro as a compress, and it was very soothing but seemed to dry my skin and make it more peely. Not sure that's what I want. I have Miaderm w lidocaine on hand for if things get any worse. Crossing fingers my skin will hang in there ad stay intact. Other than the tingles of itch, my breast feels fine and so does my underarm. Underarm is exposed but not red. Maybe there isn't as much pigment there - like the palm of a hand?

I love the people at my rads center... they are gentle kind, funny and charming. (They CALL you if they are running late! OMG!) Once the machine went down for an hour, and they bought pizzas for everyone in the lobby-- the personal touch and thoughtfulness here s stellar. I also love the diversity of the ages, ethnicities, and sexes on my tech team-- all of them working like a happy, well oiled machine: positioning me, repositioning me, moving the proton beam arm, the Xray arm, rotating the bed 90degrees.... all with efficiency, professionalism, and good humor. It's like a dance of machinery and people and I just lie there meditating in my foam mold. I am generally in and out of there in 30-35 mins.

beach5

Had my 3rd boost yesterday and only 2 more to go! The boosts are much quicker than the regular rads (the breath holds seem longer). Continued itching, and my back has now started itching and skin is peeling. I don't think I've done as a good a job with lotion on my back, but it's quite dark and lots of dark freckles. I have my discharge instructions already and my RO said to expect skin to get worse for 2 weeks after treatment ends.

I'm done on Tuesday, and off to Germany on Wednesday (I know not the best plan)! Unfortunately for me, the end of rads means starting back up on chemo, so its a bit bittersweet. Hope everyone is doing well.

Heatherautumn

Just finished 26 of 28. Very red and a few peeling spots. Just started getting really painful rib pain below my reconstruction. The bones hurt so badly!!! Has anyone had rib pain?

Thanks, everyone!

Heather

kec1972

Heather..yes, ribpain, armpit pain muscle pain, boob pain, fried nipple pain...you name it I have it

Heatherautumn

Thanks! I bent across the console in my car to reach for something on the floor and leaned on my ribs. I think I bruised then pretty badly since they are sensitive from radiation. Ouch!

Elephant

I just finished 16 out of 21 and still have no redness or any other symptoms. I saw my RO today and asked him why I could not see any effects or feel any effects from the radiation treatment and he just said that the treatment nowadays is much less invasive than it used to be. I even suggested to him that his radiation machine was not working properly as my skin was still not even pink. I guess that it really depends upon our skin type as to how the radiation affects us. I also had a friend who had 36 treatments and was only slightly pink at the end. My breast is pretty sensitive but that is from the lumpectomy and not the radiation. Of course I am not complaining about having no affects, but I was so ready with my creams and lotions.