February 2018 Starting RADIATION

VL22

Littlebee - I’ve just experienced the tiredness for the first time and mine is if the “ I want to get in bed with the cat and sleep for hours” variety. I’ve had no issues with being out of breath. If anything, I feel better in that sense than I did on chemo

sweetp6217

Hello there Rebekah, sorry to hear that it isn't over. Hopefully the rads will do wonders.

Speaking of rads, I'm getting a second opinion. I explained it better in the January rad group, but I feel like there is a weight off my shoulders for the moment. I'm currently on a search for the holy grail of information: studies on women who had successful chemo, negative results after surgery, then have to embark into radiation treatments. I get the feeling they aren't telling me everything.

Joyseeker

Sweet. I think a second opinion is always a good idea.

Naive question. What happens to my port with Rads? Does it have to come out? My port and mast side is the left. Wondering....

Roaming_Star

Hi, Thought I would chime in. I start rads on Monday. Really hoping to keep my energy up and not have too much skin damage. I got my aloe, caledula cream and emu oil hoping it will save my skin.

Sweetp6217 - what are you interested in for your second opinion? Are you thinking that you don't need to do rads?

VL22

Joyseeker - I know many people leave the port in indefinitely, so must be fine to get rads with it. I had mine removed the last day of chemo at my MO’s suggestion. A lot of people like to keep it in “just it case”. I am not of that mindset

Anonymous

I got my mapping and tattoos today and will have my simulation Feb 12 and then start rads the next day. What creams will everybody be using? My center gave me Aloe Vera but I'd like to know what you all think.

JadeShiva

Hi everyone. It's nice see some familiar friendly faces from October chemo and I look forward to meeting the rest of you as we go along.

I had 2 of 33 today, left side.

My experience with planning was much like everyone else's except I did not have any breath holding parts. I trust my team. Hopefully they don't nuke my heart. My tumor was just above my nipple and near the surface and I had one positive node. Perhaps the positioning removes the need to do breath holding? I'll ask Monday.

I got 3 little tattoos, pictures of the Earth as viewed from Saturn. They didn't hurt at all, just a tiny poke. I was very happy to have gotten them on one of the I Can Take Any Pain days as opposed to one of the please don't breath on me hard days. They squished the little air bag thing up around me leaving it just uncomfortable enough that I don't fall asleep during treatment. Then I had a nice, no contrast Cat scan.

My radiation oncologist came in and marked me up like a side of beef while telling me, "you're going to enjoy radiation. You're going to have fun" in his calm and reassuring way, his sharpie pen going dot dot dot. I do try to find the joy in even miserable things, but how did he know that? 😮

One week later~~

It was probably good I didn't have to hold my breath for round 1. I would have died as it took an hour. They took a bunch of xrays which the substitute radiation oncologist reviewed before the first treatment was applied. Is this the simulation some of you are mentioning? They might have said something about simulation first but hey, chemo brain.

Having the two together was sucky. I laid there completely motionless on the slightly uncomfortable body form for about an hour but it felt so very much longer. Sigh. It didn't hurt though it was a test in remaining calm and still while ignoring random itches, growing discomfort in having my arms above my head gripping hand holds that long, and silent tears that came for no reason and every reason.

When they finally let me open my eyes the nurse was standing there with a box of tissue ready for me. Very sweet. I cried the rest of the day. Some sort of release or something deep and desperate is lurking under there just waiting for a moment to start redesigning what I am post-treatment. I'm so curious to see who I will be.

Round 2 today was a snap. In and out in 15 minutes. After yesterday, laying still for treatment 2 was easy. It was alright. I even had some nice conversation with my nurse and another waiting patient. Finding the joy ☺

My breast is just slightly itchy after the 2 doses, a bit warm and pinker than normal. Chemo did very bad things to my skin so I will not be surprised if I have all of the skin reactions. So far, not bad. My shoulder is really sore though. Honestly, I think it's from having gripped the bars above my head for so long. I'm feeling like a nap today too but that is probably residual from chemo and I've been pretty gung-ho about jumping back into life.

In unrelated but related news, I started tamoxifen 18 days ago. I was permitted to start it early as there was time to see if I had side effects that would make themselves known and not be confused with radiation side effects. I got some bonus mood swings and hot flashes the first few days but that has stabilized and at the moment tamoxifen appears to be causing me no trouble.

I hope you all have a great weekend. ☺

rdeesides

I am still recovering from mastectomy surgery and go in for mapping next week. I am wondering how it is going to be doing radiation on an area that is already so tender due to just finishing surgery. I guess the plus side is that a lot of the area is numb. It just seems like a lot to do to my poor breast all at once

miranda2060

Hello all. I may be actually starting radiation in March rather than Feb., but I don't know yet. I just heard from my RO that the hospital's "tumor board" discussed my case (early stage, no lymph nodes but an unclear margin) and determined that radiation should be done. Have had single mastectomy with direct implant, and the RO is conferring with the plastic surgeon on timing. RO used the term "toxicity" in regard to the risk to the implant. I am also awaiting oncotype results that will factor into whether I will then have chemo.

I'm apprehensive in general about starting the treatment phase, but I know I will benefit from the knowledge and support in this community.

Roaming_Star

miranda2060 - sounds like an apprehensive time for you. I opted to not do reconstruction at the time of surgery because i knew i was going to have rads. That sucks you didn't know then. How do you feel about your team and their expertise?

rdeesides - i can understand how vulnerable you must feel. I too was supposed to have rads soon after surgery but my incision was so long and i could lift my arm over my head. I needed PT but it was before christmas and no one would give me an rx so it ended up delaying my rads till i could get my arm in position for the machine. I am glad that it allowed more time for me to heal. I took bromelain after surgery to help with swelling and inflammation. It seemed to really help. It is the stuff in the pineapple core. Are you taking or doing anything that promotes your recovery?

I completed 2 out of 16 treatments! 14 more and am slathering on the calendula cream. So far so good:-)

miranda2060

Roaming Star, I have a lot of confidence in my medical team. Top-notch, and highly ranked hospital; I feel lucky I got health coverage just in time.

It was anticipated before surgery that I might need radiation, and that was the reason for an implant rather than DIEP. The risk to the implant is minimal, I am told; at worst, it would have to be replaced.

rdeesides

Rosming Star - I just spoke to my PS this morning and she said that radiation was actually good for scar tissue. Who knew?! I have good range of motion so I’m not worried about that. I’m just worried about healing and skin damage. I heard that we should do whatever we can to promote skin regeneration. I am going to investigate what I need to do to get lots of protein. I wonder too if Biotin helps? I will have a lot of questions for my RO

Roaming_Star

miranda2060… I hope you don't have to get it replaced. It seems like they have flexibility with the radiation dosage. It sounds like you got a good team:-)

rdeesides - maybe radiation will help my scar tissue! I am using biotin and my hair has been growing like crazy:-) so hopefully it will help with skin regeneration.

Joyseeker

Roaming Star. Fellow Canadian here. When was your last chemo? How long is your hair? And. How much biotin? My last chemo is tomorrow 🤩

sammi2006

Jumping in on this thread as I will be starting rads towards the end of this month. I was given the option to do either four or six weeks of treatments. I just finished five months of chemo on the 2nd and have had my surgery and am ready to be done, so I opted for the four week option. I will be getting 15 regular treatments and 6 boosts I think. I got my CT and tattoos the same day as my consult and will meet again for a planning session on the 21st.

How have everyone's treatments been going?

VL22

I’m 18/31 and I am tired. I am shocked at how fatigued I am. I said earlier ( might have been on Tacol thread)that I had blood work done and my thyroid is way out of whack from chemo, so put on meds and will be rechecked in 6 weeks. Also still have so much muscle pain from Taxol, but DR. said hypothyroidism can also cause muscle aches. Exercise definitely makes me feel better.

The good news is that my breast is really holding up well. Only tiny bit pink, no pain or itching.

Good luck all! I can’t believe the strength we have, honestly

LittleLori

Hello February Rads ladies,

Joyseeker, congrats on finishing Chemo tomorrow! I wish all of you luck as work through the timing of chemo, rads and hormone therapy and hope your various side effects improve quickly.

I had my initial consult with my RO on Jan 30th, and did my CT simulation and tattoos this afternoon. First treatment will take place on Feb. 15th right after they do the block simulation to verify my plan. I’ll receive 16 hypofractionated treatments, followed by 5 conventional dose boosts. They are treating my left breast, so they had me practice the breath hold a few times before making the final markings. There is one between my breasts, one on each side of my torso to line me up properly on the machine, one on the top edge of my left nipple and one on my belly where the breathing sensor is taped. I was a bit nervous about the breathing, but it wasn’t bad at all. Knowing the machine stops if I breath out too soon gave me comfort that I won’t accidentally damage my heart.

My sister just had her last herceptin/perjeta infusion after a year of chemo, surgery, rads, and antibody infusion. Knowing how much she went through and reading your stories here, I feel very fortunate that I got to skip Chemo on this journey. You are an inspiration and wish you all a great outcome.

BellWAMissy

Ladies- Hope you had an awesome Wednesday!!

VL22- Hope tomorrow and Friday go fast so you can rest up.

Little Lori- I thought the unknown of the radiation suite was worse than the actually procedure. Except that I feel like a kids chalk board. Funny how many people have written on me with Sharpie in the last few months.

I just had day 3. I saw the RO today and asked him if the redness on my torso I noticed after the first day was typical. He said no, it wasn't. He thought it was from one of 2 things. 1- my body was being hyper reactive between the surgery, the infection I just got over that was where they took the LN and now radiation and was sending an abundance of red blood cells to help heal or 2- the infection isn't completely out of my body and was settling. I voted for option 1. He agreed, but said we'd be watching it. Power of positive thinking and a whole lot of prayers.

Have a great rest of the week.

Roaming_Star

Joyseeker Hello! I believe I was taking either 300 mg or 500 mg. But I found another brand that is 1000mg so I am taking that now. My last chemo was beginning of October and my hair is about 1.5 inches. However, I also use another trick which is, I mix macadamia nut oil and rosemary essential oil together as my my hair was really coarse and macadamia nut oil is like our own hair oil. Rosemary essential oil stimulates the scalp and causes hair to grow. It can also help your hair from going grey (really need it after all this!). I have been using this combo of oil for years and I always had comments from the hair dressers on how thick and lovely my hair was. It seems to be growing in thick once again but now it is really kinky curly?!?!? and very little grey accept on the sides of my hair. I use half and half of the 2 oils but you can use other oil such as Aragon oil etc or just plain rosemary oil (but it is pretty strong smelling). You don't need much just massage into the scalp. Beauty trick of the day:-)

VL22 - sorry to read you are having so much fatigue and pain. Sounds like chemo all over again. Hang in there. I am glad you found that exercise helps you. It has been helping me as well.

BellWAMissy… I am getting red too. Hard my 3 treatment yesterday and am getting nervous that my skin is going to break down by the end. But maybe it is the red blood cells like your RO said. I did not have an infection though. Let me know how you fair with your skin as we progress.

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Professor50

I am just popping in to wish you all the very best! I had radiation treatment in February of 2015. I definitely experienced some serious exhaustion that came to a head towards the end. It took a few weeks to realize just how tired I'd become--it was like I started waking up at the end of March. Anyway, it was scary for me to go each time and lie there feeling vulnerable, holding my breath, and thinking about having cancer. But here I am 3 years down the line and things are great. Now, when I think about the experience, I remember the kind treatment of the techs who did the procedure and my RO who always supported me along the way. I wish you good peaceful thoughts during the experience, warm and joyful relations with people you care about, and much much love as you weather this step in your treatment.

VL22

Thanks Professor50! And thanks to you all for being so compassionate - I’m sure I’m not alone when I say I share much more here than with my loved ones. I get tired of hearing myself talk about it! And sometimes things can be are very hard to explain to someone not experiencing it.

So I just found out today that I’m doing 24 whole breast treatments and 7 boosts- yes, I’m 19 in and just figured this out.

Anyone know much about boosts? I know it concentrates on tumor bed, so I would think overall easier on the bresdt

VL22

eight - have you gotten your radiation scheduled yet? Just curious how it compares to mine.

sweetp6217

After my regular Herceptin infusion, I was handed a sheet showing my upcoming appointments. Last week, I told the RO peeps to put rad treatment on the back burner for a short time; going for a second opinion. So, I looked at the appointments. Starting Monday the 12th (Mon-Fri) and for 5 more weeks, RADS! The RO department is downstairs but no one was there (sign said "go upstairs if no one is here"): clever!

I went back to where I came from and asked them to cancel the whole thing. "Sorry, the RO staff has to do that". Me "no one is there". Lovely lady picks up the phone and calls down there and took care of it for me; could hug her. RADS cancelled, for now. My 8 week, post-op window closes on March 1st, but my appointment with the new RO, new outfit is tomorrow (hell or high snow). I live south west of Chicago and we're looking forward to 8 to 12". We'll see about that. Hubby will probably call off work and try to get me there, that is if the doctor shows up unscathed; think I'll call first.

I did find a somewhat morbid group of studies (Oxford, 2011, over 10K participants, some of which were from 1991 on). 35% chance of recurrence if NO rads, 19.3% chance if I do rads. 25% survival rate after 15 years if I do rads. Yes, the studies are dated, but they are the most relevant to my BC, that I could find on the internet. I tried to ask the staff where they got their risk/stats, no answer as yet. Plus, I'm pretty sure Herceptin wasn't used that far back.

Regardless of the outcome, I guess I'll start on the 19th. That'll make hubby happy.

randrgirl

VL22- I go in for my treatment plan on Feb 16th. I believe the radiation will then start the following Monday in the 19th. That’s almost 4 weeks to when my chemo ended. That was what the doc said anyway. I will let you known what they tell me when I go in. What is a boost

JadeShiva

I've done 6 rounds now. My RO has been on vacation and I feel lost in a loop of cancer patients being funneled in and out every 15 minutes. Yesterday I finally got someone to tell me what lotion is okay to use for my minor dryness and itching. Not being advised as to whether I should hold my breath while they nuke my left breast. The nurses keep telling me to ask my doctor and then lay me down and irradiate who the hell knows whatever.

VL22

A boost is concentrating the radiation to the tumor bed instead of the entire breast. It is the area most likely to have a recurrence

miranda2060

Starting my radiation Feb. 16, six weeks' worth. Just got tattooed and stickered and scanned this morning.

randrgirl

VL22- I will ask about the boost. I’m just wanting to learn everything. I will let you know how wveeygjing goes next week.

Doofuscat

Hello All,

I am scheduled for my simulation next week. Very nervous. What type of radiation is everyone getting? Whole breast or partial? I had a lumpectomy with clean margins and negative nodes in January. I'm frustrated because I'm still not sure I should have radiation despite everyone's advice. I'm  grade 1A ,E+ P+ and Hert-  with an oncotype of 5. I know I am very lucky. I'm sure I will go ahead with the radiation. I appreciate this site. Everyone's info is very helpful

miranda2060

Hi Doofuscat,

I just had my simulation yesterday, and am also kind of nervous. The bc psychologist I am seeing showed me research on a self-hypnosis technique that was shown to reduce fatigue from radiation, and is going to try it with me. The study showed marked lessening of that side effect among women who had the hypnosis. The rationale is that when expectations about side effects are more positive, the actual experience is a little better.

The radiation setup is a little intimidating, I'll admit. So is the fact that I have to do it every weekday morning for six weeks. Also, since my implaint is still settling, I'm concerned about radiation's effect on it, as well as potential darkening of the skin on that breast. (Blech!)

Did your surgeon and RO explain why they recommended radiation? I had a positive margin; my surgeon believes she got everything, but the "tumor board" discussed the case and determined radiation would be best toensure no remaining cancer cells. Apart from my tumor being against the chest wall (the positive margin), my Dx is about the same as yours, but I had a mastectomy because there was a second, tiny malignant tumor in a different sector of the breast.

Hopefully all will go smoothly for all of us (fab) Feb.ladies.