Starting Radiation July 2021
Didn't see a group for this, so decided to start one!
Anyone else starting radiation this month?
I have a baseline mammogram tomorrow, then am scheduled to begin 4 weeks of rads on July 15th. I picked up my prescription for steroid cream and ordered some calendula cream as recommended by my RO. Guess I'm ready to go!
Comments
-
Hi @eviec1,
I started radiation today. I was kind of looking forward to getting on with it, and the team are so much nicer than the surgery team I had. But it was still a bit worrying wondering if they had lined me up perfectly and my boob has had a mild ache all afternoon - sort of like back to 2 weeks after the lumpectomy. I though it was supposed to be painless inside the breast, so I'm a little disconcerted. But I haven't slept well for a couple of nights so I may be a bit worn out and sensitive and I'm hoping a good night sleep will help. When do you/did you start radiotherapy and if you've started, how is it going?
0 -
I start next week! I'm anxious to just get going with it - the sooner it starts, the sooner it ends.
0 -
eviec1,
Good luck this week. I hope the practicalities of the schedule you've been given and travel will be ok for you. I'm lucky mine is only about 20mins away and I can cycle there as fast as drive and park, so that will really help me start getting the exercise the oncologists are emphasizing and which I haven't done at all during the pandemic. But it is still taking almost 2 hours from the middle of my work day because there is quite a lot of waiting. I'm lucky my work are pretty supportive and flexible and I have plenty of paid sick time. It's heartbreaking thinking how devastating this sort of think must be practically and financially to so many Americans without good insurance or sick time.
I'm interested you said you had a baseline mammogram - I think I read about a mammogram after surgery in Dr Love's Breast Book. Will they do another after radiation to compare?
0 -
The mammogram situation was actually surprising to me. OK, they did a baseline after surgery and before radiation - that makes sense. But as I was leaving I said something to the tech like, I guess I'll be seeing you again in a few weeks? And she told me no, I won't have another mammogram for a YEAR. That, unless something changes, it just goes back to annual mammograms at this point. Can that be right? And I guess this baseline mamm just checks the location and appearance of the scar and any architectural distortions caused by the surgery so that when I get my next annual they know what my new "normal" is on that side. Waiting a year to get another mammogram makes me a bit nervous, so I will definitely ask the oncologist about this.
And I am VERY lucky that the radiation place is close to where I live - it's a straight shot by bus and only about 20 minutes away. I've already made a standing appointment for 8 AM, so hope to be in and out and get on with my normal workday afterwards. I am concerned about fatigue, but I'm also very fortunate that my office is still working remotely (because of COVID) with no plans to return to in person until the fall - which gives me plenty of time to finish up radiation first.
Yes, I too am so fortunate that I have a supportive, flexible work place, decent insurance, and (more or less) financial stability. But, yes, this can be absolutely devastating to so many people. Ugh, don't even get me started on the US healthcare system - I had VERY strong views about this before I got diagnosed with cancer, and now that I'm actively in treatment, I get even more angry that access to healthcare and health-related accommodations from work is out of reach for far too many people. We need change.
The only thing that sucks a bit right now is that people keep asking me about summer plans and if I'm going anywhere for summer and of course I can't leave since I have to be here daily for radiation until mid-August. So much for summer! But not sure I'd be up for travel this summer anyway with the Delta variant now is circulation. I think I'm just going to write this summer off and hope that all goes well for next summer! Still, sad to see summer pass me by this year....(And my daughter goes back to school August 17th - just a few days after my radiation treatment ends - so there is really no time for much summer fun.) But, again, I do count my blessings (see above).
0 -
Hi eviec1. I’m responding to your mammogram question. Ask your oncologist, the tech is a tech and not a doctor. I’m 2 1/2 years past radiation. My follow-up is at least for 5 years and I alternate between a 3D Diagnostic Mammogram and a breast MRI every 6 months. So there is a year between mammograms but with a MRI midway through the year. Good luck to you.
0 -
Yes, I was wondering if it is possible that it meant that my next diagnostic screening would be an MRI, then a mammogram 6 months after that (so that mammograms are now yearly, but then other screenings would take place at the 6 month interval). I haven't been told that yet, but I'm sure I will be - I do have follow up appointments scheduled for both the surgeon and oncologist in September, so I know I am still being actively monitored in some way - just haven't been told exactly how!
0 -
I've had my planning/simulation appointment and start radiation on July 20th for 6 weeks. My biggest challenge is going to be the 90-minute drive each way, and I work full-time. I have a tried and true support system though.... I'm a widowed mom of two amazing young men in college and high school.
Hoping the fatigue I keep hearing about doesn't get too bad... I'm worrying about staying awake making the drive to and from appointments. Any experience with this?
0 -
I've also been told I will be on a rotation of mammogram / MRI every 6 months. I have very dense breast tissue and they actually couldn't see my tumor on the mammo... they only saw the architectural distortion. Ultrasound didn't even pick it up, but it was plain as day on the MRI, so I'm going to feel a lot better knowing I'll be getting yearly MRIs in addition to the mammos.
0 -
CoastieMom, we're sorry for what you had to join us, but we're really glad you found this wonderful group of people here at Breastcancer.org! We're sure you'll get support and advice from other members soon. In the meantime, pease let us know if there is something we can help you with. We're here for you!
Good luck with radiation! Hope truly hope treatment goes smoothly.
Sincerely,
The Mods
0 -
First day of radiation! I've got my steroid cream, my calendula cream, my protein bars, and my cotton tank tops. Bring it on.
CoastieMom, As a full time working mom, I'm also pretty worried about the fatigue I keep hearing about. Even my surgeon (who is a bc survivor herself) was like, watch out around week 3, that's when it REALLY hits you. Yikes. When a member of your cancer care team gives you a warning like that it's a bit worrisome because it seems like they are always trying to reassure you and tell you that it won't be that bad. And here my surgeon was like, yeah, it's THAT bad. Her main advice about that was to make sure that you keep exercising - exercise, she said, would help with that.
0 -
Thanks Evie, that's helpful to know! Even if that was her personal experience, it may not be the same for you. I hope that it all goes extremely well and even better than expected.
CoastieMom, you are amazing 💐. I'm glad that your boys are so supportive and lifting you up. Being around my family during my treatment has made me so grateful for them. They make me laugh and bring me joy.. most of the time 🌞.
That is a really long drive. Is there a friend or neighbor who might be able to drive you occasionally on a day you might be feeling tired so you can rest during the drive? Maybe having lunch or coffee together after your session on the way home might even be enjoyable for them. Sometimes we hate to ask others for help (at least I do) but then find that friends or neighbors are delighted to help us as we battle cancer. My neighbor put out my trash cans for weeks because he wanted to do something to help.
I don't know if you're part of a community group like church or a club but if someone else is also commuting or driving on a certain day to that city, maybe you could go together. It would keep you both awake and make the drive time go faster. You definitely don't want to risk falling asleep. I often drive to a city that's 90 minutes away. Even on a good day you can need coffee or a caffeine tablet.
Blessings,
Esther
0 -
Wow, a 90 minute drive. I don’t feel that my 50 minute drive is anything at all. I have my planning session Tuesday, start 6 weeks radiation sometime the following week. My son in Washington state (retired coast guard) is going to come stay with us for a month to help with the driving.
Eviec1, how did your first day go? I took all your advice on the surgery thread (my surgery was 2 weeks after yours) and hope you’ll have some tips as we move along. Radiologist mentioned to me today that I’ll probably feel fine, unti about week 3. Guess we’ll find out soon enough.
0 -
The first day of rads was OK and pain free. There was a whole process, through, with x-rays and positioning and a red sharpie which I guess is my first tip. DON'T WEAR WHITE. The sharpie used to mark the radiation area made a huge mess. I don't know if that's how they do it everywhere or if it's just a quirk of where I go, but just in case, where something dark that won't show red stains.
0 -
Eviec1....I worry a lot about the fatigue and the drive combined. I keep hearing that about exercise... sounds like it's time to fire up Netflix and my stationary bike!
Esther01... I do plan to ask for help with the driving for sure. I don't usually ask for help, but with this, I've decided I'm just going to have to get over that. Its too important.
Goldcity... I'm so glad your son can come home and help you out! That's a silver lining!
0 -
I'm starting my post lumpectomy radiation in about 3 hours. I am anxious and second guessing all the decisions I have made so far. I am only having 5 sessions. I'm glad it is a short time yet anxious if it's enough. Glad to know you are out there. Have steroid cream, cotton camis, and will look up the other cream.
I haven't had a postoperative mammogram, only mention of a mammogram in a year. Which of my many doctors do I talk to about mammo’s and MRI's? Anyone else confused?
0 -
tuckersmom, how did your first session go. Only 5 sessions, wow. For me, the subject of a mammogram hasn’t come up. I expect I’ll have one on my remaining breast yearly. I had no scan of any kind after surgery, but I’m supposed to get one sometime after radiation. ThenCT scans every six months according to my MO. I try not to worry about anything and just do whatever they tell me.
0 -
Thanks Evie, for letting us know to wear a dark color because of the red pen!
My 45-minute CT scan (mapping?) is on Wednesday. That is when they will give me the lotions and potions info. They have not yet given me a start date but said it will be within 5 to 10 business days of the CT scan. I am having 35 sessions. Egads.
I only have two comfortable cotton camis. I am laughing already because of what it was like searching for sports bras in surgery recovery.
I figured out how to use my Bemer mat.. sort of. They offer them for rent. I found this study showing that a Bemer mat increases the effect of radiation on the cancer cells.
I haven't seen yet which setting they used for the study. I started at Intensity 1.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5154536/Blessings,
Esther
0 -
Esther01, I have my mapping tomorrow. I’ll be having 30 sessions. I have one cotton cami, but I didn’t like the way it cut. I bought a package of men’s tank top undershirts which I love. I just throw my caftan over it. I had PT today - my arms got a good workout. I looked up the bener mat, seems interesting. Keep us posted on how that works out for you.
0 -
Hi all!
I'm glad to have you all here to talk about our radiation experiences. I, too, am grateful for insurance that covers this whole mess, and a job that has been flexible. I can't imagine not having either one -- this is so difficult to start with.
I saw my RO today, we discussed my history, and tomorrow I go in for the CT scan. I believe I will be starting treatments next week. My birthday is Monday, so that's pretty funny. I will have 4 weeks of radiation unless the RO decides for 5 once we begin. I was expecting 6 weeks, so this is a nice change. I am worried about the fatigue, but 4 weeks seems very different from 6 -- more doable.
I'm going to go get the men's tank top undershirts tomorrow after the scan - what a great idea! Thanks for the discussion everyone!
0 -
OK, I'm about 5 sessions in and I think the fatigue is hitting me. I literally fell asleep at my computer yesterday afternoon. Also I've noticed an increase in appetite - I feel hungry almost all the time which, unfortunately, is leading to too much snacking. Fatigue and snacking is not a good combination lol So far, not much burning or pain, so at least that's something.
0 -
I’m sorry fatigue hit you so hard so soon, but I’m happy about the lack of pain. I had my planning session yesterday. No ink to worry about, I got 3 teeny tiny tattoos. I start next Tuesday. Unfortunately, all the time slots are full so they have to just squeeze me in somewhere. I won’t find out until the day before when to come in. Lucky I don’t have to work for living. Are you using calendula cream? I was told touse aquaphor which I used liberally during chemo. Keep us posted on your progress.
0 -
I have been using a prescription steroid cream along with the calendula cream. So far so good there.
I got the tattoos, too, at the planning session, but then they ended up marking me all up with red Sharpie during the first radiation session - as I said, not sure if they do that everywhere, but just something to be aware of in case they do - you don't want to ruin any nice clothes. It was a mess.
0 -
Hello all!
I’m also starting radiation next Tuesday. I was originally supposed to start on the 15th, then a day before they called and said the doctor wasn’t happy with the scans of me on my back, so they wanted to do them again with me on my stomach. So…I had a second “simulation” session…and am now sporting two sets of tattoos…front and back! 😉
I still don’t know how many sessions I’ll be having. The doctor said they run the scenarios for both 4 and 6 weeks to see which they think will be more successful. I’ll find out on Tuesday. I’m hoping for 4 because I’m a teacher and would like to be able to start the year with my students. But, everything my doctors have done so far has been successful, so if they say 6 weeks, I won’t complain!
My biggest concern right now is the “sunburn” they talk about, because I usually burn really easily in the sun. But I’ve got my aloe ready, and they also said they’d give me something after my treatments.
0 -
I was really worried about the "sunburn" too - I am of Irish descent and super fair skinned. If I even look at the sun, I end up red as a lobster (as an aside: I always assumed I would get skin cancer eventually; never thought it would be breast cancer, though).
I'm 7 sessions in, I think? I've lost track. But so far, almost no burn at all. I'm sure I will eventually burn, but it's been A LOT better than I had imagined because I do burn in the sun the SO easily. It doesn't seem to be directly related, though - I even asked my surgeon about it (she a bc survivor, so she's been through it herself, in addition to being an oncology surgeon) and she said it's actually African American women who seem to have the biggest issues with burning - so not really related to how fair your skin is (unlike with a sunburn). Anyway...
So I had some drama last week when they rescanned me (which they do weekly just to make sure they're hitting the right area as precisely as possible). They did the scans and it turned out my breast was very swollen - the techs all looked very concerned. I asked what that meant (because my paranoid mind goes immediately to cancer scenarios: another tumor, inflammatory breast cancer, etc) and all they would say is "You need to talk to the doctor" which of course made me even more nervous.
But they radiation oncologist looked at the scans and my breast, shrugged, and said it was probably a seroma and to contact my surgeon to drain it. Which I was able to do that afternoon. I've had two seromas drained already and no problem, but this third one was PAINFUL (maybe because of the radiation). So painful, in fact, she couldn't drain it entirely, but got most of it out. Hopefully that has solved the swelling issue. If not, I will have to be remapped which I REALLY hope to avoid. The fun the never ends!
0 -
I'm happy to hear that the "sunburn" wasn't as bad as you anticipated. I'm crossing my fingers I have the same results.
Glad to hear that the issues with your scans weren't anything to be too concerned about. I had a similar situation recently, when I had a chest CT, and the scan showed "fluid in the left breast area". I reassured the pulmonologist that that was most likely the area where I'd had my lumpectomy. And told him at least I wasn't "sloshing" any more! (It seriously sounded like I was carrying around a bucket of water for the first week or so after my surgery!)
Here's hoping you don't need to be remapped. I did it twice and that was enough! ;-)
0 -
Oh Evie, I'm sorry about the seroma. I wish they had ways of draining these things to make them painless. I'm praying for all of you ladies as we get started with our radiation.
Goldcity, what a great idea! I passed up a beautiful caftan on clearance last weekend because I was looking for camisoles instead. Oops! Maybe it's still there on the rack waiting for auntie Esther to come back and buy it... So far, I am only on level 2 of the Bemer mat. I alternate between, "Why did I buy this?" and "When will I know if it works?" I do feel it tingling pleasantly on my legs and I know it helps microcirculation. I learned too late that you can rent them.
Speaking of add-ons, I'm adding two more protective supplements during radiation per my doctor. My Spectracell labs showed I have low CoQ10 so she has me starting 300mg/day to protect my heart. And, I am finally adding turmeric/curcumin to my regimen. I was really late to the curcumin party. Here's a good link: https://integrativeoncology-essentials.com/2016/04...
The RO nurse gave me calendula cream samples, and a friend who went through bc radiation swears by a product that helped her the most so I bought it on Amazon. It's called, Bee-Cure Radiation cream with honey and calendula. How come these little beauties are never cheap? I mainly plan to make it through with my old friend, Aquafor.
I have my wall calendar ready to start X-marking the days. I'm so glad you all know approximately when you're starting. They are keeping me in suspense, but said they'll start my seven weeks on short notice, next week or the week following.
I'm ready! Sort of...
Love and blessings,
Esther
0 -
JN5000, HAPPY BIRTHDAY!! I hope your day today is extra special even if you do have to start rads. I had no idea the ROs might possibly lessen the number of weeks. I would have tried negotiating with mine
Evie, I need your appetite. I am skin and bones at this point, and was alarmed when the RO nurse said I would likely not want to eat. Did you have to ask for the prescription steroid cream, or did they offer it automatically?
CoastieMom, how are you doing so far, and is the drive tolerable? Driving that distance each day might be the tipping point for me to get Sirius Radio. I remember they had a great standup Comedy channel which really made the drive fly by when I used to have a long commute.
Apple, how long will your treatments be, and how are you faring so far?
Goldcity, I"m glad you got through your mapping. The level of discomfort reminded me a bit of the ink mapping session before sentinel node biopsy. I may now have a permanent aversion to the word, "mapping." LOL Still don't know when I'm starting. Like you, they will be fitting me in at first, so it won't necessarily be at my chosen times yet.
I chose the stickers which are black sharpie marks covered with what looks like saran wrap that actually stays put. My chest looks like a Treasure Map. Part of me wishes I chose the tattoos so I could shower without worrying they will come off. I was told not to take hot showers, and to protect the breast from both hot and cold. I am already using good lotion on my skin where they will be applying the radiation. I wonder if that's important before we start.
I look forward to hearing how you are all doing. Such a comfort to know we are not alone in this.
Blessings,
Esther
0 -
Esther, about the prescription cream - I didn't ask for it - I wouldn't have known to!
This is what it is: mometasone 0.1% Cream Commonly known as: Elocon
Maybe something to ask about.
0 -
How's everybody doing? I hope things are going as smoothly as possible for you all! (including that 90 minute drive!
)I had my final "set up" session on the actual equipment yesterday, and my first real "zap" today. I'll be doing 6 weeks of sessions, which means I'll still be getting radiation when I head back to teaching in August. It also means I'll still be having a significant number of sessions after my ovary removal surgery on August 20th. I was hoping it would only be a few, because I'm still a bit nervous about how it will feel to lay on my stomach after the surgery. But, the radiation sessions are pretty short, so I think I can handle it!
I also asked about lotion or cream after my treatment today, and the tech said that I'd get them from the nurse that I'll see with my check in appointment on Friday. I expressed my concern about "burning", and was thrilled that she said most of their patients don't have too much trouble. So...I'm using my aloe for now, and will wait and see what they give me on Friday.
0 -
Hi SingingWendy,
I'm glad your treatments are beginning well. I'm sorry about the overlap with your ovary removal surgery and teaching schedule in August. I pray all goes well. I wonder what kind of calendula cream they'll give you. I wouldn't even have known about calendula or Aquafor if not for these forums. I'm also going to ask for the steroid cream Evie got, even if I don't end up using it.
Speaking of creams, I've been reading the studies about melatonin cream (200mg) preventing radiation burns, so I asked my doctor today on her weekly "Ask the Doctor Q&A." She said yes, she's heard of melatonin creams helping during radiation, too, along with Juice Plus which is full of protective antioxidants. So I bought the 200mg melatonin cream today from Zetpil. Ouch! Four ounces was pricy. Oh well, I'll figure out in a few weeks if it was worth it.
I'm anxious to hear how everyone else is doing too, and how CoastieMom is doing with that drive!Blessings,
Esther
0
