Starting Radiation January, 2022
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Sunbunny, 6 weeks sounds normal, unless you're having issues. I think the increased fatigue plus your burn pain means you should at least message your doctor. You may need a prescription ointment like silvadine.
Hope you're feeling better soon.
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Gamzu- Hot dang!!!! 20/20!!!!!! Congratulations- you made it and can check that off your list! I hope you recover well!
Sunbunny- I finished mine Thursday and they made an appointment for me to see my RO again in 4 weeks. I guess it varies among treatment plans and docs? I'm so sorry you're feeling so wiped out. I am on my trip and have been busy going to dinners and functions. Today was a full day and I actually had to come lie down for a bit before a big dinner event. I felt so drained! I guess our bodies are trying to tell us they need rest to heal. My burns have also been waking me up- I know I mentioned this, but it may be worth repeating- I bought a little tub of Numb520 and it gives me a nice period of relief. I got mine on Amazon and the doctor said it was fine. They also recommend Aloecaine to their patients. May be worth 1-2 shipping.
KotchAJ- Dang it! I swear, they really should dial back the "don't miss a single day of rads spiel" they give us when we start bc it makes it more frustrating when they have to cancel. I know you are disappointed to be sidelined when you thought you'd be rounding the bend toward the end of treatment! Imma whine with you on that. What is your presumed last day now?
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Jen2957-
Well, as of today, because TODAY the plane broke down bringing the parts to fix the machine, my last day will be Monday March 14th. I'm now 4 treatments behind schedule. I seriously cannot make this stuff up if I tried. On the plus side, because I always look for the positive, I'm scheduled to have my first dexa scan for bone density today and it's scheduled for 1 pm. I would have had to literally run out of the hospital here and jump in the car to make it to my radiation appointment. Now I don't have that extra anxiety of being late. So, there's that to be positive about today. And I realize that out of all of the things that could be happening, this is minimal. It's just freaking annoying, lol. I'll survive it. Because it's minimal and I will even laugh at it later. Maybe even tonight, who knows?
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Hello, I just had my third round of whole breast radiation today. I have a total of 25 rounds and the a 5 day boost after. My question is, has anyone suffered from feeling exposed and vulnerable during the treatments?
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Shipanikra, I did, but they were very considerate to cover me up as much as possible. You can ask for a blanket/robe. You need to be exposed while the position you, but then they should cover you.
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Shipanikra- I completed my 25 rounds a week ago today; my five boosts were cancelled due to moderate to severe radiation dermatitis. I definitely felt exposed. A bolus (wet cloth used to slow down and focus the radiation more intensely at the skin level) was used on me daily, so one of the techs had to basically mold this cloth around this big tissue expander. It was awkward at first. The dressing rooms were closed due to Covid as well, so I changed behind (more beside) a screen with my back to the techs bc they could still see me. They gave me a warm blanket that I covered myself with as I walked to the table, but then it was topless again with arms overhead. I got over the flashing everyone part of it- though I’m still disappointed I never got any beads/necklaces after 25 boob flashes,- but I’m a control freak and lying there perfectly still, exposed, and being radiated really got to me at times.
How are you doing now? Any better
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kotchaj- two more rads days? Or did the planes, trains, and automobiles adventure continue and delay your parts even more? Fingers crossed you’re still on schedule- well, delayed scheduled, anyway! Enjoy your weekend, then you will hopefully be able to celebrate Monday
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Thank you so much, I was really starting to feel like a big baby. I change into a gown and walk into the room they position me and then the gown is down off me the entire time positioning and for the treatments, they do offer a blanket (but to only cover my legs) and the team is really great but still exposed. I have gotten better - the 4th treatment I didn't come home and cry so that is something. Today is treatment 6.
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Thank you, I did better on my 4th treatment, didn't come home and cry. I had breast reduction surgery so they could remove more of the tissue around the tumor, I was lucky that I was able to do that and I really needed the reduction, however, being exposed with new breasts, ones I don't even know how I feel about was and is very uncomfortable. You - beads - now that is funny!
how is your skin now after a week off from the treatments?
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shipanikra- Well, I typed and posted a lengthy response this morning, but it apparently didn’t process. New system glitch, I assume. I’m sure this rewrite will not be nearly as insightful and entertaining! Lol I’m 3 weeks out from rads tomorrow since I didn’t have the boosts- my skin looks closer to what I originally expected it to look after radiation (if that makes sense). It is light to medium pink now and in a perfect square the shape of the bolus cloth they used. No more pain or feeling like I’d been boiled- just a bit of itching here and there. I saw an oncological dermatologist and she prescribed some additional ointments to help things along.
I found your statement about being exposed with breasts you hadn’t even had the opportunity to become comfortable with to be very insightful! In my case, I have a tissue expander on my right that looks like a grapefruit glued to my chest (I told a friend it looks like one of those boobs on a stick figure drawings middle school boys make 😂) and a smallish B original breast on the left. It’s disorienting to look in the mirror at myself, so I certainly felt self-conscious about lying on the table topless with my arms over my head.
I’m so happy you have had a little relief from the emotional weight of this; hopefully, that will continue to get better as you go through treatment. Just remember that it is totally okay if it doesn’t- you have every right to feel what you feel; however, give yourself some grace and acknowledge the fact that just showing up to treatment every day is a big accomplishment. I don’t recall if you are having rads to your supraclavicular lymph nodes or not- if you are, just be aware that you may temporarily get a hoarse voice and a lump in your throat feeling. To me, it kind of feels like when you get anxious or are about to cry, so I had to continually remind myself that it was just radiation irritation.
Please keep us updated on how you’re doing as you go along. Those of who have completed rads will still be around to check in and support you
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I hear those expanders are not allot of fun, (stick figure by little boys, very FUNNY!) like I said I was fortunate in the tumor removal and reduction. I am glad that you are done with the rads and hopefully will have your expander removed and reconstruction done soon!. when did they put the bolus cloth on you - I haven't heard anything about that. I am having allot of shoulder/neck muscle tightening, I have been trying to stretch it out but it never really gets any better.
Yes, I am having rads done to under collarbone, breastbone nodes, underarm and full breast, when did you start having throat issues? Yesterday they had me on the table for almost an hour doing more x-rays, held my breath 22 times, during which I had a zinger in my breast, I had warned them that I was having them and was hoping I wouldn't get one during treatment, it happened in between x rays, I think I scared them because I started gasping and breathing hard but I didn't move, when the treatment was finally over and they helped me lift my arms back over I started crying from my joint shoulder pain. They then informed me that after every 5 or 6 treatments I would have to go through that again, joy, something to look forward to. I have been siting here just feeling so sad and just not wanting to do this anymore, SO unrealistic, so tired of being sad, I have always been the glass is 1/2 full kind of person.
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Shipanikra- Oh, gosh! I am so sorry you feel so low today. I’m sure it’s especially hard because you ARE the glass 1/2 full type; this is a lot to take in. I have had one of those sad weeks this week, too, for some reason. I should be celebrating not having to go to any appointments this week, but I just feel sad. It’s funny, just before I logged in here, I was thinking about the irony of being terrified of losing our lives to this disease, yet feeling so tired and sad that we don’t feel like we can go through the treatment either. Ughh. I have felt better the last day or so, and I hope you will be the same. One thing I know I neglected to do was rest enough. I didn’t feel sick, so I just kept going even when I got tired. I think I have felt better emotionally the last couple of days because I have gotten over my stubborn, keep moving attitude and built in planned rest time each day. I rest, then I get up and do several things to feel accomplished or get things done, then I have another scheduled rest, then I take a walk or do something active, then cook dinner, etc. I truly believe it has made a big difference; we underestimate the toll all of this takes on our bodies and spirits. I think it is incredibly important to see rest as work or medicine, just as I believe walking or whatever other physical exercises we can manage are essential. But I totally get the sad, overwhelmed feelings. Just start by taking it one minute at a time, one hour, one day…and don’t “borrow trouble from tomorrow” as my dear, wise, elderly friend says. At this moment, you are okay. Don’t let fears that may not even happen steal your today from you. You have some hard things to do, but you just have to show up and do them one day at a time, then find some things that bring you joy in between.
As for those x-rays!!!! I nearly had a panic attack the first time they said they needed to do them bc I thought something was wrong! I thought the CT showed something. No one told me those happened every 5x! It is hard to lie there with your arms over your head - in my case, the TE would catch where it is stitched to the muscle and I had to have help lifting my arm afterward. It sucks and I have no advice for it, but it sounds like you were pretty bad-a** to lie there without moving! Good for you!!!
My lump in my throat and hoarseness started the first week and only lasted a couple of hours after rads, then it lasted longer by the end. I am still hoarse a bit (like after being somewhere loud where you’ve had to talk loudly for a long time) and the lump is there some, but better. The bolus was there from day one and every day- it targeted the rads on my skin- kind of slows the adulation down to focus on the skin- bc that’s where they felt I had a higher risk of recurrence. April 6, I get fat grafting on my cancer side and an implant on my non-cancer side. We will decide later when I’m ready for the TE to come out. My answer is yesterday! 😉
I sincerely hope you start to feel a bit lighter- this heavy, sad feeling can become overwhelming. However, just keep reminding yourself that you are much tougher than you think you are and that it is OKAY TO NOT BE OKAY sometimes.
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Thank you for all your wisdom and advise and understanding. Yes, it is the pain in the joint of my shoulder - the muscle is of course still from the rads, I don't know what is wrong with my shoulder joint, probably just old! the right one hurts too but not as bad as the left where the radiation is hitting. I have been getting somewhat of a sore throat not too bad yet, however my left breast is swollen and I think I am getting stretch marks under it. Todays treatment was a pain, the camera had to reboot mid treatment and they couldn't seem to get me positioned right, had tears rolling down my face midway through treatment. I have also been concerned about the breath hold, when I did my planning the doctor was happy with how deep I could hold my breath as it was moving the heart out of the way and asked me if I could hold it deeper, I was unsure, thought that I was probably already taking as deep as I could, just natural, but this week the techs have been telling me I am taking too deep of a breath and to take more shallow holds, so now I am concerned that my heart is not moving out of the way enough. I see the Doctor on Monday and I hope this has all been ok. The team I have are really great people and I kind of feel like I am not trusting them.
I hear that it is difficult to adjust after the treatments are over, so it seems natural that you would be a bit blue. I get the whole not wanting to go through the treatments, I am now seeing why so many start treatments and then decide they can't do them anymore.
Best of luck on the reconstruction, I really hope and pray that it goes smoothly and recovery is a breeze, I asked my plastic surgeon what scar creams or products she would suggest using and she said the only ones that had any scientific study done that worked was silicone sheeting, I purchased some but am waiting till after Rads to try it, I will let you know if it works.
hugs back!
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Hi all, I haven't been on this site for awhile and just wanted to check in. I've healed nicely from my cancer experience, finishing rads end of Jan, (and the covid which I got after radiation ended which kept me sick for most of Feb), and would feel better now if I wasn't having some hormone suppression pill side effects.
Glad you made it on your trip, Jen, even with burn issues, I hope the experience and memories were good for you. Ship, you will get through this! Yes, it is hard and embarrassing, but when it is all over, it will seem like a bad dream.
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Thanks oldladyblue. Yes I got past the exposed vulnerable issue - still didn't like it but at least I stopped crying after my first week. The last week of targeted radiation I was able to stay covered.
I am done - had my last RAD on April 15th. Had to go to a PT doctor for the pain in my neck and shoulder - apparently I have allot of arthritis in my neck (several car accidents and landing on my head in Jr. high in gymnastics, I am sure caused most of it) I was in allot of pain because of the way I had to hold y arms and neck during treatment. I have a disk in my neck that is out of alignment and is slipping so went for a MRI for my neck, whoof that was uncomfortable, made the mistake of opening my eyes when I first went into the machine, shut them right away and starting saying Hail Marys and then sang in my head the ants go marching twice.
My skin never really got too bad I was fortunate - they gave me radiplex gel that I put on three times a day and at night I put Aquaphor over it when I went to bed. I got a rash on my chest that was itchy but I started putting cortizone 10 ointment on it. My back is still sensitive and pretty pink but the breast seems to be doing pretty good only had some small amount of peeling on my chest. I continue to have swelling and have been doing lymphatic drainage massage on my breast and under my arm and I have the freezer gel packs that I use to help with the swelling. I get quite a bit of shooting pain in the breast and my underarm area pinches off and on. Today I now have a small sore under my breast at the incision line from my reduction/lumpectomy, don't know what that is all about. Saw the oncolocy nurse for a skin check on April 22 and she was very happy with the way my skin looked.
I started my AI on the 18th, so far the only side effects that I am having is hot flashes which is really annoying since I just stopped having those about a year ago, so I am back to the covers on, covers off, covers on, covers off.
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Hi, everyone! So good to hop on and find a couple of checkins from our rads group! Congrats on finishing, shipanikra!
shipanikra and blue- those hormone blockers are delightful, huh? 😉 I started Exemestane (Aromasin) in December and had hot flashes every 10 minutes, I think. In the last several weeks, I have noticed a significant drop in those, though. My only remaining, noticeable side effect (aside from becoming the Queen of the Sahara due to dryness) is significant joint pain-mostly in my hips and hands. It gets better as I move about though. Hopefully the SE will taper off for you guys.I had my first step of reconstruction on April 6. I had fat grafting to hopefully get some repair via those stem cells on my radiated side and an implant on my non-cancer side. I told my PS that I was very disappointed that typical reconstruction is done sub-pectoral and as we discussed my concerns, he told me he had been looking at switching to sub-glandular/pre-pectoral before Covid hit, but didn't get the opportunity. I told him to consider me his first case and that's what we did! He has done plenty of switches from sub-pec to pre-pec for women who have pain, animation distortion, or other issues, but hadn't done the initial recon as pre-pec before. I have my 3 week followup tomorrow, but I think things look pretty good so far!
Next up for me is removal of my remaining ovary next Tuesday. 🥴
What is next for everyone else on the Trip to Downtown Hell via the Cancer Express?
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I'm almost 2 months out at this point (wow) and the pinkness faded awhile ago but I am getting a decent amount of tightness in my pec muscle around to my armpit. It doesn't impact everyday activities but I definitely feel it quite a bit when I stretch or try to reach above and behind me. I will ask about it at my follow up and see if there's anything I should be doing to improve the situation. If this is how it is forever, it'll be OK, but it's becoming a little annoying and more noticeable. I wasn't exactly diligent about stretching so I have nobody to blame but myself.
I am also puzzled because my insurance appears to have processed all my EOBs from radiation and I have not been charged anything and I don't understand why. I was sure I was going to get a bill for the weekly check-ins with the RO because I get charged $25 specialist co-pay like clockwork every time the MO or the breast surgeon breathe in my vicinity. But I've looked at the EOBs for those dates and no RO office visit was coded, just the actual radiation (which was 100% covered). The only specialist co-pay came from the initial consult. Not that I'm complaining at all, but it just goes to show that medical billing is like the Enigma Machine. You never know what's going to come out based on what you put in, because it changes every time.
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Hello Gamzu710, it could be you have reached your out of pocket? I too had copays but with my surgery and all the other doctors appointments I no longer have to pay a co pay as I reached my out of pocket.
I am sorry to hear about the tightness, I finished my last RAD (25 whole left breast and 5 targeted) on the 15th, but I was working out on my bowflex three times a week the entire treatment and have been keeping up with it - not that I want to
but since I am 60 and am now on an AI I have to worry about bone loss.1 -
Hello ladies! Nice to see everyone seems to be progressing well. I laughed out loud at the "Trip to Downtown Hell via the Cancer Express", oh my, how spot on. Good Jen on getting your PS to do it "your" way.
Yeah, the hormone suppression crap is getting to me. I was feeling "normal" finally after cancer treatment ended and I got better from Covid, then these stupid sucky tiny pills are messing with my head, heart, soul and bones. 5 years of this??
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Hello Oldladyblue, I am sorry to hear about the AI messing with you so much, I started on Anastrozole too on April 18th and am now having joint pains in my hips and knees and lower back, and some bone pain in my thigh, and also a bit more moody than I have ever been. how long did it take for you to start having symptoms?
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Has anyone had breast bone pain after whole left breast radiation?
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Hi Shipanikra, I think it took about 3 weeks for me to start feeling the all over bone pain. The last month it got pretty bad, then I cut it down to one pill every 36 hours, then one pill every 2 days. It is manageable the last few days now, with the 1 pill every 2 days for the last 2 weeks. My moods were especially volatile lately, and the insomnia is getting to me. I took a 2 hour nap today after sleeping only 5 hours last night. But the bone pain is a LOT less, almost not noticeable today.
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hey Lady Blue, sorry for dropping off the planet. took some vacation. my breast bone pain has gone away - I have occasional pain in my femur and my left hip and knee ache when I walk up stairs. And I am not sure if my moody ness (which isn't bad) is from the AI or just from not wanting to put up with stuff anymore. LOL The hot flashes are coming on a bit more now, and of course at night covers on covers off...
I am sad to hear all the issues you are having - I hope it levels out soon for you!
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Hiya Shipanikra, glad your breast bone pain went away. Also glad that the AI's emotional side effects aren't bad for you. I couldn't tolerate the Anastrizole and stopped just about two weeks ago, with almost immediate abating of side effects. I see my doctor today to discuss another Estrogen inhibitor. I am very very glad at this point that I did the chemo and rads as I may not be able to take the anti-Estrogen pills. I had hoped I could, and it worries me if I can't, but the side effects were bad for me.
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Hi, all! Blue, this is probably a bit late since you were seeing your doc today (as am I, coincidentally), but I am on Exemestane/Aromasin and once the hot flashes slowed down, I have had very few side effects other than stiffness and pain when I get up from sitting too long. I know we are all different I the way we respond to meds, but exemestane is a bit different than the other AIs- it is a steroid based one and may work a little differently in your body. I was terrified to take it…I pictured gaining 80 pounds, being severely depressed or having mood swings, losing a lot of hair, not having any sex drive…the list goes on. So far, none of those things has happened (though the dryness of ALL the places has been annoying).
I so hope you find one that will work for you without causing you too many issues-‘I’m sure it’s stressful to have to deal with yet another craptastic cancer experience.
Shipanrika- so glad to hear a report that things are improving with your breast pin AND kudos on taking a little vacay time!!!!
All the best for a happy, healthy (relatively) summer!!
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I had a 3-month follow up with my RO today and have been referred for PT due to muscle tightness in my chest and arm that is limiting my range of motion. I was lazy about stretching during and after radiation and this is the result. I don't know if it would have been the same deal anyway, but do your stretches and keep them up!
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Thanks for the tip JEN2957 . I saw the doc, and she wants to put me on Femara next, but I didn't make a choice yet as she told me to wait until my follow up appt in 2 weeks (after my bone scan). I will ask about the Aromasin. I could take something that only gives me hot flashes and a bit of stiffness, but the constant all over pain, wild emotional roller coaster, life wrecking insomnia and hot flashes of Anastrozole were so bad for me. Yeah, I like your "craptastic" coined word... very appropriate.
GAMZU thanks for the tip on exercising, I should be doing more too. I notice you are also on the Aromasin. How is that going for you?
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Good to hear from you, Gamzu! Hope the PT brings you relief - muscle discomfort is no joke.
Blue- Here is something you may find interesting. It is about authorized generic drugs. https://www.peoplespharmacy.com/articles/what-are-authorized-generic-drugs-and-are-they-betterEssentially, generics are reverse engineered and have the same active ingredient, but other ingredients vary. Authorized generics are made with the same exact “recipe" and often by the original company or at their facilities. For SOME people, but not all…the original name brand drug works better than the generic; however, it can be cost prohibitive or denied by insurance. If you find an authorized generic, you get the name brand formulation at generic prices. Just a thought as you search for a tolerable AI.
I have a chart somewhere that my MO have me about Aromasin and comparison to placebo in a blind study. We discussed many symptoms being caused by menopause anyway, but hitting it at 100 mph and even further depriving your body of estrogen wreaks havoc. I'll see if I can find it
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Jen thank you for the link to the article on generics. I had no idea of that information before. It actually expands the choices of AI. I appreciate that. I went through menopause 12 years ago, so the reactions I had to the Anastrozole stunned me.
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I had my PT eval today and was told that the pec muscle on the right side is "super tight" and that I have radiation fibrosis. Pretty much what I expected to hear. I will be doing PT twice a week for 3 weeks and then once a week though August and then we'll see where we are. I was assigned a list of stretching activities I need to do each day and am going to do my best to stick with it. I seem to do best with external motivators, so having someone give me a list saying I need to do something X times in a row, Y times per day, and knowing that someone will assessing my improvement on these tasks every few days, will be a good motivator.
In the same vein, I was doing WAY better with my diet and exercise during chemo (I have a bad soda habit) when I was confronted with weekly bloodwork, and then it stopped and I lost motivation. I guess I need external accountability. Embarrassing that cancer isn't enough internal motivation to get me to shape up.
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