After Radiation
Comments
-
Thanks for all the warm welcomes everyone! I'm feeling pretty good. I had a bmx so no beef jerky nipples to worry about here ;-) I had to take a 12 day break after 28 regular and 2 boosts. I had a bolus for 26 of the 28 treatments and it fried me! I blistered up and sluffed off and it was pretty painful for over a week. Needed painkillers to sleep a few nights. I used burn pads and wraps to keep my clothes from sticking and pulling off more skin. Luckily, it heals fairly quick and I was able to get 6 more boosts in to finish.
I need to start Tomoxifin soon....until I get that ooph, then I will switch to an AI. Kinda hating the idea of taking Tomox. I'm feeling pretty good and don't want anything to mess with that!0 -
okay, Gma, guess I better take the fabric roll out and let it hang
Thanks, Sagina
good to know what I might expect.0 -
CONGRATULATIONS Romansma and Stage1!!!! Isnt it just the best feeling in the world to NOT have to go to Rads?
I honestly think our bodies, the wonderful smart machines that they are, fight all of the treatments so much, thus the terrible side effects some have endured during radiation. I can truly say that from just two days after rads were complete i started feeling sooooo much better in my breast and now two weeks out it is looking soooooo much better too. And i feel like i had a pretty tough time during rads (had to switch to boosts halfway through due to skin issues, edema (pink swollen breast) from day 2 of treatment. fatigue so bad during week 3 and on and off until the end. But i would say i am feeling 90% better from that last day two weeks ago, I still have skin healing going on, but the pains and soreness are very very minimal, nothing like during rads.
I am hoping rads is going to be a memory like childbirth, as awful as it was going through it, as time goes on, you would do it again if you HAD to.
Started tamoxifen on Monday, two weeks post rads, so far so good. no SE's yet, i am hoping it stays that way. I have never had to take a medication every day, besides my vitamin, so hoping i remember it, wasn't always so good at the vitamin every day!
I saw my BS yesterday for my 3 month follow up. She said everything looks good. Scheduled me for mammo in FEB. is this normal? i guess i thought i would have one before then? It IS a weird feeling though for me, since the end of Feb, i have been scanned, radiated,operated on, seen 3 different docs, and felt like there was always something going on in my care. now that the operation is done, rads are done, just doing the tamoxifen....feel a little on my own! Weird not to be seeing a doctor for a month now!!
0 -
Congrats Romansma & Stage 1 on finishing. I'm six weeks done with rads and my energy level is back ... maybe even better than before since I'm determined to live a healthier lifestyle. I started the tamoxifen with the rads. My Onc didn't want me to wait (I was node positive). Three months in with Tamoxifen and recently started with the hot flashes, sleeplessness, and discovered that it has made my cholesterol levels increase in a big way. The Onc suggested the ooph. So not ready for more surgery. My first mammo is not until November ... I, too, thought it was weird ... to wait so long. The BS said that the breast needs time for the inflamation to reside after rads. The hardness is subsiding and I try to remember to massage my breast regularly. Wishing you well!
0 -
ftblmom the followups are so different from Dr to Dr. My RO had me do a mammo three months post rads and then back to him for follow up and then he released me. I am suppose to have a MRI in the fall but I think I may tell them I don't want it until Jan. It will be too much out of pocket for me for this year as my surgery was last year. I will have surgery again next year so just want to lump it all in one year and same me some out of pocket cost. I too started to heal really quickly once it was over with. I had a hard time as well and was ready to start healing.
0 -
I finished on Wednesday!!! I am lucky, Canadian Protocol, no boosts. Still, whole boob is tender, sore. I have used Bio-oil all along, it's great for scars, too. I picked it up in Europe, but I have seen it here, even in Costco. The fatigue is really knocking me out, every afternoon. But we all push through, not much choice there.
I am wondering, how a mammogram is going to feel in a couple of months? Right now I can only imagine PAIN.
0 -
congrats teriber woohooooooooooooo. My first mammo was not at all as bad as I thought it would be as I was having lots of nerve pain. Anyway when I went in I ask the tech to be extra gentle because of my pain. So she did the good side first and got that out of the way then did my bad side and she was very gently and kept asking if I was OK. So it ended up not being bad at all. I know some who have taken pain pills before going just to be on the safe side. I had a long drive and did not want to be on drugs.
0 -
Congrats Teriber! I know about that afternoon fatigue. I still need a nap around 4 or 5 everyday.
0 -
Teriber - Congrats on finishing rads - what a good feeling. The fatigue will go away in several weeks, just try to rest when your body tells you to. I had my first mammo 6 months after rads and it was not bad at all. No pain. I had a tech that had worked with BC patients in the past and she was really gentle.
0 -
Teriber: Congrats on finishing rads...I was more fatigued the week after rads than during the whole process...It does get better...I'm 8 weeks out of rads, no more shooting pains, fatigue only if I really push myself...
Thanks for encouragement on the mammos you other girls - I'm a bit nervous both for pain worry and the fact that the LAST mammo found this latestest CA...Can you spell A-T-I-V-A-N -- LOL
0 -
My BS gave me a couple of Lortabs to take before my mammo. Took one before I left for the procedure and I was just fine. I really don't think I needed it but it was nice to have it just in case.
0 -
Torigirl, Ftlbmom, Bluelily,Sagina, Thanks for the well wishes
I am suppose to get my next mammogram in Feb, also, seems like a long way away. I tried to forgo rads and asked just to stay ahead of BC by getting mammo every 6 months, Kaiser says no. I thought it would be a good idea since I was barely stage 1. But could not get a doctor to agree. Congrats to you too TeiberI experienced the shooting pains in the middle of the night, right where you said, where I had the boosts! Wish they would warn of us these things. If it weren't for you guys, I would be worried.Thanks, Sagina.
0 -
In one of my previous post I mentioned about having more nerve damage in my hand where I had had previous damage form an auto accident years ago. My pain dr and I had both thought that rads contributed to it so he did an MRI to see what was going on with my nerves. Anyway don't think rads had anything do do with it. I ended up with a herniated disc in the same location of the injury I previously had. We are going to watch it for now as I really do not want to have surgery on my neck again. Hopefully it will resolve itself if not I may not have a choice but to have surgery. But those that are new here I just wanted to clarify.
0 -
Ok Ladies, some info to pass on...I had my appt today with Lymph. Specialist/therapist. She was wonderful. I told her I think this eval should be part of the whole 'cancer package" BEFORE nodes are taken out, either SNB or ALD, anyway, she did a base eval, no lymp/no edema, but she gave me such wonderful info...(the field is very short of techs/therapist., very sad) anyway, I am getting fitted for a sleev e, not because I need it now, but I will be traveling in the future by plane, and taking long car trips...YES CAR TRIPS!! she said that any trips over a couple of hours, (she would suggest 1 1/2 hrs) require a sleeve and getting out of the car to stretch and move the arms, body to get the lympatic system moving. I take 4 hour trips to NY, many during the year, and she said people dont think about that. your arm just sits/hangs there and its not good for that long, and I don't even have any swelling/issues. ALso, said I can start yoga swimming now, wear the sleeve, just in case, and don't do repetetive chores/exercises. She explanined that lifting light weights or gardening isn't all together bad, its the repetitive movements/motions that can cause lymp to flare up. She also told me of a recent BC patient that felt so good after a year, she washed her windows in her home, all in one day and that night had her first flare up of lymp.
we talked about people having a false sense of security when they only have one or two nodes taken out, thinking they won't get it. AND she said "RADIATION" can do so much damage, everyone is different, but it does mess with the lympatic system, no doubt"
Now I have a baseline measurement of my hand, arms shoulders, chest wall to always compare. And I have great exercises to do daily, each day to keep lymp at bay. SOrry to go on and on, but I have decided to persue this with the cancer centers in my area, Its time they eval/give info on these side effects before they happen.
Hope everyone is doing well, congrats to all that have finished and everyone on the count down!
0 -
msjag thanks for the info I had not heard of long car rides. I don't have LE but was planning on going and getting fitted for a sleeve just for the occasional plane ride but now seems I need it for car rides as well. You know everything in Texas takes awhile to get there.
0 -
msjag - That is interesting about long car rides - who would have thought? I live so far down in Texas - close to the Mexican border, I don't know if there are any LE specialists/therapists in this area. But then again, you would think my BS , ONC & Rad Onc would have mentioned the possibility of LE. That did not happen. When I got my LE Alert Bracelet I showed it to my MO and BS - they thought it was a good idea but that is as far as the conversation went. I may have to pursue the LE issue on my own.
0 -
Jo known of mine mentioned it either, think I am going to pursue it just for the baselines and get a sleeve.
0 -
Sherry - Thank goodness for BCO and all the wonderful information. Who knows where we would be in treatment without this resource.
0 -
Jo that is for sure. I have learned so much on these threads from other women.
0 -
msjag -- Thank you so much for the info. I had 3 nodes removed and fall into the category of false sense of security. You'd think I would have learned otherwise by now! LE was mentioned by my BS but really not stressed ... I incorrectly assumed that it affected the women with many nodes removed. I honestly had not given it much thought til now.... ahh yes ... it does just keep giving doesn't it!
0 -
Just got my sleeve today................I found my own LE, and mentioned it to my RO.....she immediately had me checked..........It is amazing how little anyone knows, or even cares about LE..................I am in good hands with my LE specialist, but will have to wear this blasted thing all day, and switch to a "night garment" when going to bed..........it is a very mild case, but I sure don't want it to get any worse the;n it is.............I have been doing bandages for 6 weeks.
0 -
went to the lymphodema massage therapist today for an hour massage....worked out the chest muscles and back muscle and shoulder...soooo tight...surgery and radiation can really make you tighen up so her advice was stretch, stretch, stretch!....and I am doing trigger point massages on the scar tissue now as well which really helps. hurts like hell but helps....you find the (a??) sore spot on your breast and you use your index finger of the opposite hand...push down into the ternder spot and when you say ; enough!" leave it there for 20 seconds...all while breathing deeply...I have been doing it for over a week now and the difference is quite amazing...harder to get at the scar tissue under the arm but the breast I can do.
0 -
msjag, that's the first I've heard about long car rides. For planes, I thought the problem was the altitude, not the duration. Interesting...
BlueLily, my BS said that about 3-6% of SNB patients get lymphedema (and my BS stressed taking it easy the first few weeks after surgery; maybe that helps our odds)
FWIW, I chose to get a compression sleeve and gauntlet for flights (thanks women of BC.org) and in my opinion, wearing one on flights isn't a big deal (I'd rather be safe than sorry). I subbed my receipt and the insurance is even going to pay. hurrah! (we are lucky to have excellent insurance right now. Not sure how common this is but filling out the claim form took 5 mins, so why not try? Saved me $150)
Edited to add: I'm about 8 weeks post rad. My fatigue continued for about 10 days after rads and then I felt much better, and never had the rads fatigue again. I'd had some shooting nerve pain at the beginning of rads, so the RO said I might feel that again afterward (as the nerves heal) but I didn't have that. Had my first post-rads check up with the RO and all looks good (skin much better and lighter thought still a little tan). I have ongoing follow ups with my MO.
0 -
I hadn't heard about the long car rides either so will keep that in mind. My LE therapist did tell me in addition to airplanes to wear the sleeve if I go to the mountains (altitude). She also said the longer the plane ride the more problematic for some people. Under 2 hrs. seems to be OK with most people. I went on my first short plane ride (1-1/4 hrs.) about 6 wks ago and the day my return I had a little flare-up but it's okay now. I'm going on a much longer flight in another 2 mos. & I'm worried but I've got all the LE exercises to do so hope for the best.
0 -
msjag, you'll be interested to read the latest Position Paper put out by the Medical Board of the National Lymphedema Network. They promote pre-surgery lymphedema baseline measurements and education for all women diagnosed with breast cancer, and measurements taken at every oncology visit thereafter, so that early-stage lymphedema can be recognized and treated promptly. It's here:
http://www.lymphnet.org/pdfDocs/nlnBCLE.pdf
Really wise of you to be staying on top of this! Be well!
Binney0 -
Binney, Thanks so much for that info. I am going to bring that to the attention of all my docs. So important. I learned so much from one base eval with specialist, just such a shame this isn't being done with all patients. More opinions/research also coming out about not doing SNB or auxillary disection, finally realizing how important it is not to disturb the lympatic system. Our bodies are under so much assault as it is!
Next project: ok docs time to fess up that rads and/or chemo cause arthritic like pains in our joints that make us feel like we have aged 50 more years!
0 -
Note to self: don't pull on your jammies until you see if your breast is stuck to it........ ouch!
0 -
I'm lurking - wishing I was post rads.
I've completed 13/33. No real issues yet, but my ribs are sore. Ouch.
I was just wondering - it seems like many of you didn't have a mammo before rads? My RO ordered a mammo. He said that scar tissue and cancer look the same on a mammo and he wanted to see what the breast looks like now and he wants follow-up mammos ever 6 months for 2 years. My MO said just the regular annual mammo.
What have you guys been told?
0 -
My RO hasn't told me anything about LE. The nurse does measure both arms each week but that's about it. I finish rads on Monday and on Friday I'm getting on a plane for a weeks vacation in Maine. Is there anything I can do to mitigate the damage of the flight? The trip will be broken up into two segments with less than an hour layover in Chicago. I do know that the flight attendants discourage getting up and walking around during the flight. As luck would have it my RO left on her vacation last week.
0 -
Lynn, see if you can talk to one of the nurses, they may be able to write you a script for a sleeve and tell you where you can get fitted. Where I live, anyone of the docs, onc or primary can write the script for the sleeve, and the place you purchase it can fit and give you one. I was told that since I don't have lymp. I will probably just get measured for one right off the shelf. Hope this is helpful. There are a couple of lymp threads that maybe able to help you more specifically for your area/onc.
Hope it all works out ok, have a great vacation. I too am heading to maine next week, Saco area, but I'm driving, only two hours away, will be doing exercises in car to keep that fluid moving!!!
0
