Starting Radiation November 2021
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Hope everyone in treatment is doing well. I'm still on track to start right after Thanksgiving, with two complications to resolve. My insurance denied "image guided" radiation - I was panicking until I talked to my RO's office who assured me this happens all the time, they will file an appeal and it will get approved. But still.... unnecessary stress. Hate insurance companies. Second, I had a consult with both my local RO (where I plan to get radiation) and an RO at a big university cancer center (where I had chemo and surgery) and they are recommending different things. Local RO recommended whole breast + axilla and super clavicular nodes, university RO doesn't think the axilla/super-clav nodes need radiating. She said it wouldn't be WRONG to do it, and that I am in a grey area, but she thinks the benefit would be marginal and not worth the extra scarring to the lung and increased lymphedema risk. I hate having to make decisions in a grey area! (For context: I had a definitely positive internal mammary node which will be included in the whole breast radiation for sure, but my axillary nodes were suspicious but never officially positive - two nodes biopsied and negative before chemo, but the axilla were "warm" on my pre-chemo PET scan. The sentinel node biopsy at time of post-chemo surgery was negative (0/4) but because I had neoadjuvent chemo, we still don't know for sure if the nodes might have been positive before chemo, and that's the status that matters for the radiation decision.)
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Hi mle42, nothing is ever easy in this journey. I’m sorry to hear about the 2 obstacles, I hope insurance goes smoothly and radiation plan worked out in your favor.
I was able to finish my simulation today & got 4 tattoos. No issues with breath holding. Some pain but able to channel my PT through breathing & relaxing. Monday will be my first session. Went for a lovely walk afterwards in the brief sunshine with a mocha as a treat. Rest of the day was at the dentist getting a crown & cleaning. I got special treatment and the dentist did everything, including the cleaning & polishing himself. So sweet. I was so worried about my teeth, glad I got that done before starting radiation. Thank you everyone. Keep us posted on how you are doing.
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Mamacure, so glad you were able to finish your simulation! And a good reminder to treat ourselves after tough moments. We had rain all day yesterday, but today the sunshine is glorious, lighting up brilliant fall colors on the trees. I'm soaking up the beauty.
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Hi All,
Thought I would have started my rads by now since my simulation was 11/1. Called the RO to check and found they didn’t request insurance approval before doing the simulation. The insurance takes up to 2 weeks for approval. Very frustrating as this is the second time the RO’s office has struggled with an approval. Makes me worried if I can trust them to preform the rads correctly. Probably going to get a second opinion from another office even tho it will xtend my wait time.
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mle42 - must be frustrating especially with everything you're going through to have two different medical opinions.Ask him/her why he thinks it's best to go that route. None of this easy. I hope everything works out for you whatever you decided.
Mamacure - so happy you were able to get through the simulation. I'm sure you must be relieved.
SailCA - I'm sorry you're going through this. I'd be going off on everyone, but that's my mentality today,lol, sorry, not sorry. It's not fair for you to have to deal with not knowing when you'll be starting rads on top of dealing with this beast. I'm in complete agreement about a second opinion. Keep us posted.
You are all in my thoughts!
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Thank you everyone!
SailCA & mle42, I hope insurance gets sorted out! Last thing you need to worry about. Ugh. I reached out to my nurse about my insurance too just in case. I wonder if it’s worth telling them I’ve hit my out of pocket maximum for this year so treat me with everything nice you got that’s covered? ;
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Glad everyone seems to be doing well! Is anyone getting aches and shooting type pains? I'm only 5 days in and mentioned it to my RO and she said just to make sure I am moving - stretching, walking, etc.
SailCA - That is SO frustrating. The same thing happened to me. I was on my way to my "dry run" verification the day before my first radiation treatment and realized I had a sense I should call my insurance to check on the authorization since I have had problems with other docs in the past.
They told me the rep had called and they told her which codes needed auth and what # to call but she never called! So my Sim hadn't been pre-authorized either. I called the rep and she said she didn't know what was going on, and if I went to the appt I might have to pay out of pocket.
I was in tears by the time I got to the clinic. It was 30 min before my scheduled appt, and all I was doing was fielding calls between the auth rep, the clinic and my insurance. I was a basket case. At the end of the day they told me I couldn't have my appt, and had to go back home while they sorted things out (this after an hour's drive).
Somehow they got it sorted by the following day, so I was able to do my dry run, and radiation was supposed to happen that day. But it was a huge ordeal because I hadn't had my education session, had no idea if I could shower, what soap to use, if I could use cream, when, etc. and called the office twice and they got royally ticked off at me and I actually got a "lecture" when I arrived. So more tears. We ended up moving my radiation to the following day because I was so stressed over the whole interaction.
So you might want to call your insurance and see if they can do an ER authorization. Mind did. But I know what you mean about losing confidence...
Manacure - awesome you got sim done! I nearly didn't get through mine, my shoulder was in so much pain. Glad that's behind me.
5 treatments down, 11 to go, and then possible a boost of 5 depending how I do and what the RO and BCS decide.
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CindyNY, what did you use for Hydrocortisone cream? I see a lot of them have aluminum and my RO said I can't have anything with metal (zinc, etc.) and I was told not to get anything with alcohol in it which most of them seem to have.
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How’s everyone doing?
MacDebbie- hows your skin holding up?
I thought more simulation today but was able to get the first session done! It was a Bolus day. I get to shave a day off at the end woop woop! 29/30 to go. My mouth got very dry during the breath hold but had no issues. Very nice rad techs. Ready to punch thru the sessions. Please keep us posted & what creams are working well. My nurse wants me to slather inavocado oil at night but I’m not sure yet….
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@November Rads Ladies,
I am in my third of a six week radiation treatment plan. I noticed redness on day two. I started using Renu28 after the second treatment. Any redness disappears after applying the Renu28. I use it in the morning and and night.
I also bought Seven Cream, but I have have not had to use it for SEs yet.
I do have an entire cloud of "brain fog" which is a barrel of laughs for folks at work and at home. I got misdirected walking from the store back to work today. It is two blocks and a straight line back. Stopping short during conversations because I forget my thought process is quite entertaining. I had to join the barrel of laughs too.
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Mamacure - I've heard really good things about avocado oil. So happy you were able to get through today's session. From this point, it will go very quickly. Do you have the bolus for all treatments?
I had my follow up with the RO today and was "discharged" and given the ok to start PT. I have a tan 'line" and skin looks really good, including my scar, which I was a bit worried about.
Have a great night!
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Mamacure, yay for first session! I can't wait to start crossing these off. I have my simulation this Thursday.
Wondering, I didn't realize that radiation came with brain fog.... I feel like mine has finally started lifting after chemo (when I couldn't even remember the names of close long term friends). Guess I'll be prepared to start being foggy again!
Serendipity, hooray for the milestone of being discharged! I hope the PT helps with healing and recovery.
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Serendipity, so glad to hear that your skin has healed!!!
I hope everyone is doing well. I had my second session today, was a little longer than I thought but still quick. So far so good. I will be having bolus for the first 4 weeks if my skin can take it. I must have brain fog too cuz I thought thanksgiving was this week & rushed to buy my ham & turkey!!
I was tired & achey last night & this morning. I had to take a nap before my appointment this morning. Felt better after & able to walk today. Please keep us posted on how you are doing.
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Hi Ladies,
Hope you are all doing well and the rads are going bu quickly . I decided to get a second opinion afterall, which will be this Friday. The original RO’s office ended up calling me late last week to ask me to start my sessions on Monday at 11. Since I work and thought I had expressed the need to be either early or late in the day, it just solidified how I was already feeling about them. As much as I’d like to get this done, I want the best care.
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SailCA, good for you to get a second opinion. They wanted to change my appointments to earlier in the day so I agreed. I guess best to get it out of the way in the morning. They sounded strict to keep the same time everyday. Day 3 is done. Breath holding is a pain but doable. My skin is fine but feels warm to the touch & little tender. Maybe the bolus sheet is causing that. Little bit of anupper back ache. Not bad. Energy is lower but able to walk today. Just want to sit on the couch. Kudos to those who are working during treatment. Ordered the Rejuvaskin cream based on all the good reviews & will pick up avocado oil at the natural store tomorrow.
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Hi all
It sounds like everyone is making progress, albeit slow progress in some cases. I had my first dose of radiation yesterday. It seems really weird to me that the radiation is killing cells, yet I don't feel a thing during the treatment. I sort of wish that I could feel something so I could say, "Uh, I think you just hit my heart." I am really worried about heart and lung side effects. Can you tell? This is my second time with breast cancer. I had a mastectomy and reconstruction the first time, plus chemo but no radiation. Is anyone else getting radiation with an implant? I was hoping that I would be finished with radiation before Christmas but I will have 30 treatments. That means I will finish on December 30. At least I can start 2022 with this behind me. Thanks for all the suggestions about skin creams. Wishing everyone a smooth sailing.
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Shelster - I had to have a bolus for each of my sessions and I could feel when the radiation was penetrating the side of my breast cause it would heat up, towards the end it felt like a burning sensation.
I had my exchange to implants surgery in July and was diagnosed with a recurrence a few days later. It doesn't appear radiation affected the implant at all and I'm just a little over a month from my last session. I was worried that radiation would destroy it. I saw my BS and RO earlier this week and both said that everything looked good. I see the PS in January to decide my surgery.
I hope radiation goes smoothly for you and that you have little to no SE's.
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Had my CT scan/simulation done this morning. Didn't take as long as I thought, and not uncomfortable except for the tattoos - that hurt! Doc had originally said I would start 11/29, but the techs today said 12/2. "Unless they get the plan done earlier." Which I'm really hoping they do.....
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Hi all, glad to see everyone is moving along...haven't had a chance to update, but wanted to share what happened in case it helps anyone else.
I did my mapping appointment last Tuesday, in prone position, everything went fine, got the back tattoos, very tiny. Next day I received a call from RO and she was unhappy with the scans because she said when I am faced down my heart was falling forward more into the range. She said everyone is different, some people's heart moves more and others don't, just an anatomy type thing. So she wanted to redo the mapping with me on my back and breath hold. Even tho I am a yogi, I was a bit concerned about breath hold because after chemo, it's been a little harder getting breath control. So my new mapping was last Friday afternoon, which pushed my whole schedule back. It went fine and the breath hold was not that bad, new tattoos on the front!
My first session was yesterday afternoon with doctor and nurse info appt, so longer. They said every week they take more pictures one day, so one session may be a little longer. It was fine and not sure if they are all alike, but there's a little monitor I look at where I can see my breath moving and I see a line when I hold the breath and can tell it's steady and good. The system has infared lights, so that if I were to not hold breath, it would actually just shut off, like another safety net.
My normal time is first appt. 8:15am, which is good because I don't have to take time off from work. This morning I was in/out in like 15 minutes, it was quick. I think I felt/feel some warmth to the area, but not sure if that's just in my head. I was advised to use the cream right away, like preemptive a bit, 3 times a day. I've been walking, doing yoga, staying active and busy and I almost feel back to how I felt before chemo, which is great.
Also since my schedule got shifted and bcz of holidays, I have to go thru the first January Monday now! o well.
I also feel strange like is it working? Is it worth it? Have to trust the docs.
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BtwnStars - What was the reasoning for the MO to have you do chemo? I ask since my MO and the second opinion MO advised it against that it would not benefit me. I am curious about the different treatment plans from MOs.
Shelster - I am getting rads with a saline implant. I am not sure of the outcome. I am hopeful I don't need to get it replaced after all is done. My PS said he would only remove my implant as a last resort because it risks spreading cancer (had it placed prior to the cancer dx).
SailCA - Absolutely great idea get that second opinion to find the right doctors for you and your treatment plan.
mamacure - If you do Thanksgiving this week and next week can I come over?! Sounds fun to go ahead and think about it twice this month. :-D
@All - I hope you guys are all fairing well through this rads process.
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Are you all having rads on the Friday after Thanksgiving??
They told me that I could come Fri (only because they messed up my start date by not getting my treatment pre-approved so I am behind a day) but that they only do "necessary" radiation that day - head and neck, not breast cancer, but they would make an exception. I don't think they were too happy about it though, and it would be a different on call team that would do it.
They told me it was no big deal to skip 4 days, but then why does everything you read say to never skip any of your treatments? A 4 day gap seems pretty substantial.
Are you all having radiation the Friday after Thanksgiving or are you skipping 4 days (ending Wed and picking up again Mon)?
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wondering44 - you cracked me up. I've had to ask the rad techs I don't know how many times how to get back to the dressing room and then out to the waiting room. They must be thinking "what the heck???"
mamacure - what is bolus? My skin is doing pretty well, but the RO noticed yesterday that I have a lot of redness on the underside of my breast. I hadn't noticed it. He said it's irritated hair follicles. Looks like spider lines. I finished day 11 today.
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wondering44, LOL you made me giggle!
MacDebbie, I skip t-giving & go on Friday. I will be missing t-giving & Xmas. Doc said no worries there.
Week 1 is done! 5 more to go. Skin is holding up. Putting calendula cream, avocado oil at night & hydro gel so far. After next week, I want to put on Mepitel sheet, I’m nervous to tell them but I will. I don’t think they will oppose. MD Anderson is giving it to their patients they should follow suit I think. Hope everyone is well, happy to get the weekend rest
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mamacure, what ingredients are in the Hydro Gel? I think you said the center gave it to you? Do you know who makes it? I have some jellied avocado oil I bought that I will have to try. I don't think the Aquaphor is agreeing with me. It seems to make me itch.
I did develop a rash
- I'm at the end of my 2nd week. It's on the underside of my breast and not (yet) painful or itching. I just don't want it to get worse. Been using Dr. Bronner Magic Balm. Hopefully will help. My center wouldn't even consider the Mepitel. Even when I told them MD Anderson uses it and provided the website for them to look into it. They seem stuck in their ways or maybe are just too busy to check it out.How often does everyone meet with their RO? I'm supposed to meet with mine once a week but it's never a set day and seems really loose. Last week they told me I would meet with her Thurs and when the day came they told me she was not there. So they had me meet with a new partner who knew nothing about my plan. Hoping I meet with my RO this week, as the question of having a boost the week after Thanksgiving is still up in the air, plus I have a few questions for her. I've never met with the nurse the whole time except for my pre-rad education session. I just meet with the tech who takes vitals and asks about pain/problems before I meet with the doctor.
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macdebbie,
I meet with the RO once a week on Mondays.
Aquafor was recommended by my RO. I researched it before using it. It can cause burning, stinging, redness, or irritation. It contains Lanolin alcohol that is activated from lye and acetic acid. All the stuff I want to avoid on radiation treated areas. Just my personal research and opinion. I passed on the Aquafor. I am three weeks through rads with no redness, burns, or irritation.
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Hi all. I just finished #13 of #16 - woo hoo! I can see the light at the end of the tunnel.
The techs told me yesterday that the RO decided not to do the Boost with me which was to be an additional 5 days. I have mixed feelings, because all the research I have read does indicate that it lowers risk of recurrence, mores in those under age 40 (I am 64), but still beneficial for us "older" folks.
There is an increased risk of severe fibrosis in women 60+ with a Boost, but I also read a study that when they lowered the GYs there was no reduction in effectiveness, but it lowered the risk of SE. However, I have done some reading on radiation induced fibrosis and it's pretty serious. There's no cure, only management, and if not caught early the options for treatment are much less. It can affect more than the breast - skeletal and muscular system, causing neuropathy, lung issues, and any number of other things.
So of course I will discuss risk/benefit with my RO tomorrow, but wanted to know for those of you who had hypofractionated treatment, had smaller tumors with no lymph node involvement, Stage 1A, and are over 60, is your RO doing a 5-day Boost?
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Hi ladies,
Agree heard that aquaphor has extra ingredients which may cause irritation. My Hydrogel is called Skintegrity. It contains water, glycerin, sorbitol, carbomer, triethanolamine, imidizolinyl urea, allantoin, methtlparaben, DMDM hydantoun, aloe, disodium EDTA. Not sure how much of this I will use. I'm mostly using calendula cream by Boiron, avocado oil by NOW brand (small bottle) & manuka cream on my scar. I also have 99% aloe Vera gel.
I see my RO every Tuesday. Nurse is available at each appointment if any questions.
Sorry to hear they are not allowing mepitel, I hope I don't get resistance. I wish docs would keep up with their specific specialty research, ugh.
My skin is so far so good, upper back gets achy at times (I think where the beam comes out). Nothing too bad.
Fibrosis sounds scary, I will talk to my RO about it.
Take care everyone, keep us updated on how you are doing.
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Hi Everyone,
I started radiation this week, in supine position to breast with armpit included. I met with the RO a few weeks ago then had a CT to map a plan. I find the daily traveling to and fro inconvenient, unlike the weekly or biweekly chemo, but at least the SE are not systemic.
Mamacure nice to see you one here from the Spring 2021 chemo board.
I wish everyone luck here with your treatments and beyond.
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Hi Hopeheal! I hope everything goes smoothly for you and that you continue with minimal SE's.
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