Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Radiation recovery

1…506507509511512…528

Comments

  • josie123
    josie123 Member Posts: 1,749
    edited January 2018

    Thanks Fran, and congrats on the weight loss. Maybe I’ll go out for a drink this weekend with my hubby

  • edwards750
    edwards750 Member Posts: 1,568
    edited January 2018

    Thanks ladies.

    Josie - congrats girl on the 5 year milestone! It was a relief for me to get off Tamoxifen. I have those leg issues at night too sometimes. They come and go but nothing like they were when I was taking Tamoxifen.

    If you will remember Kate’s doctor missed her UTI. She ended up with bladder cancer and by the time they finally diagnosed it it was too late. She suffered so and shouldn’t have. Heartbreaking. It may very well be sodas that irritate your bladder. Glad you are having a doctor check it out. Keep us posted. Hope you get to be FT.

    I know you are busy. Grandkids are a blessing and sometimes exhausting. Speaking of which we are watching ours Sunday until 5 because our DS is flying to Plano, Texas on business. His X GFF is picking them up. She is always late. We are invited to a SB party but will just get there a bit late. No big deal.

    I do worry about my sister in particular. She lives in Georgia and is very close to the vest so I never really know how things are going. She didn’t tell me it had come back until a year later.

    Good for you losing weight Fran. Not easy esp when you are stressed. Seriously who reaches for a carrot when they are feeling low? I go for the chocolate. My internist prescribed prosaic for me to take the edge off and that’s pretty much all it does. Guess I needed help to de-stress.

    I’ll join you in a glass!

    Have s good week!

    Diane



  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited February 2018

    I'll have a glass too!  Yes, Josie, I passed my five year mark a few weeks ago and it did not bring joy.  Rather, unlike previous years, it brought me anxiety, so I certainly understand how you feel.  My onc keeps trying to tell me differently, but I can't help but feel a little bit abandoned by the system.  My onc points out that the protection tamoxifen gives lasts for several years after we stop.  

    I agree with Diane that you and Kate are very different people in very different places.  You will not let your doc ignore your symptoms, but will keep pushing until you know exactly what is (and, more importantly, is not) going on.

    I have my mammo and breast surgeon the day before you appointment, and will be thinking of you.  .  

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited February 2018

    I'm looking forward to the mammo and exam.  Between my scar tissue (two lumpies in that breast, although only one was malignant) and lots of fibrocystic stuff, I feel helpless at identifying--or ruling out--any problematic lumps and bumps.

  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2018

    Brookside - congrats on the 5 years anyway and good luck with your mammo.

    I was guardingly optimistic when I reached my 5 years. Since my sister’s BC recurred I’m less so because our mother had BC so we are both high risk. She was 4 years out when they discovered the spot in the MX scar area. She had no treatments just Arimidex. She has lobular BC.

    I’ll be thinking of both of you and praying things go okay.

    Diane

  • jeniphur
    jeniphur Member Posts: 2
    edited February 2018

    I finished radiation on January 18th. My skin is healing well and energy levels are good. I declined hormone therapy... quality of life issues. I have been super emotional since I stopped radiation and I am not sure why. I am crying a lot over everything real or perceived. Is anyone else having this issue? I am really confused as to why this happening now? Thank you all for being here! Much Love!

    Heart

  • 70charger
    70charger Member Posts: 591
    edited February 2018

    jeniphur. A lot of women go thru a form of ptsd when treatment ends. Everything happens so fast after time of dx that u don't have time to deal with it & process it all. When treatment ends suddenly you have the time to begin processing. It is quite normal. Please talk to your Dr about it. Some women need a bit of extra help with it, don't be shy about it. Talk it out. We are here for you & completely understand. HUGS

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited February 2018

    Jeniphur, I was one of those who wound up with PTSD after rads.  I was traumatized by the idea of voluntarily subjecting my body to all that radiation.  My rads center (and, I think, everyone's) had a nurse practitioner whose sole job was to meet with those of us who had post-treatment issues.  She probably referred me to an in-house therapist (free, at least for several visits, I believe) but once sh pointed out to me that I was processing a trauma, I understood my post-treatment symptoms and just plowed through.  For a year.  Probably I'd have moved forward faster with specific help, but, whatever, I'm fine now.

    When we are diagnosed, there is so much information to process, so many tests and procedures and scary stuff, most of which we never heard of before, that we don't have time to feel.  For months, we are in fight or flight mode, where survival, not psyche, becomes our operational mode.  Perhaps the reason you are weepy is that you now have the time to allow feelings and fears to rise to the surface, and now that you're able to take a breath, they're insisting on being heard/felt.

    You didn't mention a specific reason for your concern about hormonal treatment, but let me just mention that I took an Ai for a couple of years.  I had absolutely no side effects for at least six months, then joint aches slowly increased.  Eventually I switched to tamoxifen, with which I am very happy.  Not only do I have no side effects from this drug, but the joint issues that I thought would be permanent are totally gone.  

  • jeniphur
    jeniphur Member Posts: 2
    edited February 2018

    70charger & BrooksideVT, It makes sense that I had to hold it together to get through and now well, the gates are open. This entire process has been extremely difficult, on top of everything else, I was diagnosed two weeks before a major move. My entire support system, gone. All my familiar docs, gone. I feel super isolated. I have a therapist that I have worked with before I am hoping that she can do facetime.

    Thanks for the support and advise. xo


    Oh, and as for the hormone therapy stuff, I am afraid of loosing yet another thing, like being active due to pain. And I did the math: the therapy decrease the mortallity rate by ~2.5%. Not enough to convince me that I need to take the chance.

  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2018

    jeniphur - I had radiation too. 33 treatments in all. I think we were all pretty much in a fog from DX to surgery. I had zero issues with radiation. Very little burning and a bit of fatigue halfway through the treatments.

    Did you have the Oncotype test done by chance? I did and my score was 11. I have an 8% chance of a recurrence with taking Tamoxifen for 5 years which I did. I am 6 years out last August.

    I was Stage 1b, Grade 1 IDC. I never thought about not taking hormone therapy. I was aware of the side effects but I wanted the extra insurance policy at least for 5 years.

    I’ve not seen a percentage that low relative to hormone therapy and mortality rate. We are all quoted percentages from the onset but frankly I looked at the stats for what they are guesses from a small sampling but estimates just the same. For now that’s what we have to go on so I’ll be guardingly optimistic about my chances.

    Your call of course to take or not but just be sure you don’t second guess yourself or assume the worst if you do take them.

    Diane

  • mistyeyes
    mistyeyes Member Posts: 581
    edited February 2018

    jeniphur, I am a little depressed after each step is finished, I feel like now I am not fighting cancer and maybe I am leaving a door open for it. I felt like that when chemo was done and when radiation was done and I am getting Herceptin because I am HER2 positive and am worried because I only have 2 more treatments. I feel like I was in this mind set that I was fighting cancer and will do everything I can, and now I don't know how to be me without actively fighting this and being so scared of a reoccurrence.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited February 2018

    Jeniphur and Mistyeyes I believe what you are both going thru is "normal" for BC recovery. I think most of us thought that when we finished treatment we would be "all done", but that's the time that you realize you'll never really be all done. It remains at the forefront of your mind for months and months after treatment while slowly fading, and eventually it will no longer consume all your energy. But it does take quite awhile to get to that point. In the mean time, you're really not done fighting this disease. While dealing with the stresses of being "post treatment" quite a few of us decided to deal with eating habits, and exercise and various things to help us become the best health wise we could be. Eating right, exercising, shedding or gaining those few pounds gained during active treatment, and just mentally addressing all this. Jeniphur, you've got a tough road as you've just moved and as you say, your support system is no longer right next door. But they are there.....you just need to call, text, email or skype. Also, check in with the local American Cancer Center or your new Dr's cancer center where you now live. They generally have programs going on which you could join to meet others in your neck of the woods. Mistyeyes, your road is also tough as you don't have the option of long term hormonal therapy. I don't blame you for being worried about only having 2 more herceptin treatmeants, and I don't know much about being Er-, but I think you have to trust the protocol. They will follow you closely with Onc appointment, mammo's and general check ups which will help combat the feeling of being on your own.

  • mistyeyes
    mistyeyes Member Posts: 581
    edited February 2018

    Mostlysew- I am working on my diet to eat healthy and am upping my exercise - slowly but trying. There is also a new pill (Nerlynx) for HER2 people that I will be taking for one year. Sometimes my mind does some stinkin thinkin and I dwell on what ifs instead of staying in the here and now and face tomorrow when it gets here. It does help emotionally doing my part of being healthy and the doctors doing their part is the best we can do.


  • MostlySew
    MostlySew Member Posts: 1,311
    edited February 2018

    Mistyeyes, that sounds like a good attitude. It is especially hard not to worry about the what-ifs early on in this recovery stage, but you're right......if what-if happens then we shall all deal with that as warrior women because that's just what we are. I'm glad to hear about the new drug for you too....that will give you extra piece of mind.

  • 53nancy
    53nancy Member Posts: 295
    edited February 2018

    Hi, everyone, I just stopped in to say hello and read posts to see how everyone is doing in their radiation journey and recovery. I sure hope that everything goes well for you.

    I finished Radiation on December 12th with minimal issues; the burning feeling and peeling were the worst, but no open skin, for which I was thankful. I now feel I am healed, though still feeling some pain. I am doing well, except for fatigue. My RO has told me I am cancer free, and that my MO would sign off on me in April, which threw me for a loop because it is barely five months since I got my diagnosis. A nurse friend told me that the MO will continue to follow me from afar re: blood tests, etc. I guess I would rather hear the words "No Evidence of Disease" than to hear "You are cancer free", because I do believe that could be misleading for some who would have their hopes up that there will never be recurrence. I am not going to worry about it, but will definitely do everything I can to be aware of what my status is.

    Have a great weekend, all of you.


  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2018
    Nancy - Glad you are done with radiation and the side effects weren’t too bad.

    I don’t understand your MO signing off on you after only 5 months. I saw my MO for 5 years after my DX. I thought that was SOP. I didn’t have any tumor marker tests only blood tests to see how Tamoxifen was affecting me but I still had appointments with her.

    I do see my BS’ assistant now for annual mammograms. That was also after 5 years.

    Diane
  • 53nancy
    53nancy Member Posts: 295
    edited February 2018

    edwards750, I won't see my MO until the end of April, and am just going by what the RO told me. It could just be what he thinks and not at all what she will do. I have been told that if she does sign me back to our local hospital, she will probably keep an eye on things. I find that there really seems to be a lack of clear explanations of what to expect, so that in many of my visits re: biopsies, surgeries, radiation. information was general in nature and I learned more from going through the medical system than I did from doctors. I do have to say that the girls in the radiotherapy department were absolutely great and explained things that came up in a very clear and concise manner. And, of course, I have learned not to depend on Dr. Google! :)

  • 70charger
    70charger Member Posts: 591
    edited February 2018

    I was signed off with mo & np 2 weeks after my last Rad. RO signed off on me 1 month after my last rad. No follow ups with any of them unless a problem arose. Just see my GP for yrly check ups. Could be a Canadian thing.

  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2018

    Must be Fran. My MO wouldn’t release me until 5 years after my radiation treatments. Like I said she didn’t really do anything other than a cursory check of my scar area and look at the blood test results.

    As long as they are monitoring things and you don’t have any issues maybe there is no reason to see him/her. I know several ladies in my group at church have more aggressive cancers than mine so I’m sure that’s why they have to see their MO more regularly. I should be thankful for that.

    Diane

  • Redheadhere
    Redheadhere Member Posts: 3
    edited February 2018

    Hello all, I'm new here and 6 weeks out from radiation and have some symptoms(?) that I'm not sure about and I'd like your advice. I do have a seroma where my lumpectomy was performed. Some days it is hard, some days more pliable, some days tender, some days I can press on it and it sends nerve pain down my arm; is this all normal? The scars from my lumpectomy and lymph node removal are very cordy, noting I did go into radiation on the 10th day after surgery, is this normal? Why is my lumpectomy breast bigger and more firm than the other? Is this normal at this time period? Now after all this time my skin where I turned red is bumpy and feels flaky though I don't see flaking, is this normal? I seem to have developed tennis elbow, is this normal with lymph node removal? My energy level is way less than normal, is this still normal? When will I return to my normal level?

    Thank you for any guidance you can provide!

  • MostlySew
    MostlySew Member Posts: 1,311
    edited February 2018
    hi redheadhere...I’m glad you’ve finished treatment, and have found us. All your questions are good ones and while I can’t help with all of them, I think I can with a few. First, I don’t know if anything is “normal” about how long to wait between surgery and rads. I understood it had to do with how fast you heal, and I know they don’t like to wait more than a month or 6 weeks, none the less, the things you are concerned about happen no matter how soon the rads are started or so it seems. So .... flakey skin and a leathery feeling is normal. It’s the breast healing. Keep up with your lotion several times a day and it will get better. You may well actually peel, but perhaps not. Both things are normal.
    As far as the seroma, the fluctuating hard feeling or softer feeling, the fact that the breast is still larger than originally, the “cordy” feeling and even the tendinitis in your elbow are all related to lymphadema I think. I had all the same symptoms myself, and it turned out to be truncal lymphadema. I saw a PT therapist who was specially trained in BC lymphadema. It took care of all those problems. The seroma will take a long time to reabsorb into your system, and you probably will have hard areas in that breast for years, at least I do and the docs all call it “ normal radiation changes”.
    As for your energy levels remember your body has been thrust a lot in years last 5 months and it needs time to heal. Remember to keep our protein consumption up, drink lots of water and get some exercise daily. You don’t have to run a marathon, but do try to get a daily walk in. Coming to terms with cancer is a mental challenge along with the physical onslaught you’ve been thru so give ourself time to adjust. I think the LE is probably affecting your recovery because it’s hard to do when your breast, underarms and elbows still hurts. Your MO, RO or surgeon should be able to give ou areferal for PT sessions for the suspected LE. Just make sure the are trained in the prober massage techniques.
    I hope this helps..
  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited February 2018

    I agree with Sew.  Please ask for a referral to a lymphedema therapist.  You may or may not have lymphedema, but an evaluation by a certified lymphedema therapist will teach you how to move fluid out of your breast and arm and will assure you that all is well.  Any of your docs can order the evaluation, and probably a simple phone call will get things moving.  If you want a doc to evaluate you, chances are your rads onc (or whichever onc is on call) can see you pretty much right away--they are, after all, set up to deal with new issues that arise on a day-to-day basis, and probably see the most post-treatment issues.

    There are multiple possibilities for your breast symptoms, but when you mention your elbow, I cannot help but think that maybe a bit of swelling is going on there as well.

  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2018

    Great info as usual Brookside and Sew. We have several ladies in our group at church who have lymphodema. They do see lymphodema specialists regularly.

    We had a group meeting at church last night. The lady in our group whose cancer has come back is doing k. Her last scan had mixed results. Several lesions shrunk but also a few new ones popped up. The head MO at Cleveland Clinic told her he always looks at the big picture. She is handling the meds well and her lifestyle is business as usual at least physically so far. He didn’t seem alarmed by the new lesions but the next scan in April will be very telling.

    She is as upbeat as you can be given her DX. She is in her early 50s and very active.

    My sister said things are going okay for her too. She gets a shot every month because she is allergic to the chemo drugs.

    One thing I took away from our meeting is no one feels confident anymore about reaching a 5 year milestone. I am guardingly optimistic. My next mammo is in May.

    Happy Valentine’s Day! It’s my Mom’s birthday. A sad day for us. I took flowers to the cemetery - yellow roses - her favorite.

    DH bought 3 different kinds of flowers and cards. So sweet and me and my black thumb. Haha

    Diane

  • Redheadhere
    Redheadhere Member Posts: 3
    edited February 2018

    Thank you ladies, I feel better.

  • 53nancy
    53nancy Member Posts: 295
    edited February 2018

    Hello everyone. It is nice to be able to catch up. 79charger, edwards750 - I saw my nurse-practitioner on Wed ans she said that I will probably haxe a summer and fall consults with my MO, then see her on a yearly basis fir three to five years. I will know at the end of April, though I don't know how long the MO will keep her practice; she is in her 70s.

    Redheadhere, mostly sew, brooksidevt - I too was wondering about trouble with my elbow and arm, but was putting in down to overdoing things, especially with lifting with that arm. I still have not been able to use the ten lb weights. I do do the exercises for the arm to avoid swelling.

    Here's to everyone doing well and looking firward to a brighter future

  • Redheadhere
    Redheadhere Member Posts: 3
    edited February 2018

    Hi Ladies, how about skin tenderness in areas not in the radiated path? The area below my radiated breast, over my ribs, is very tender to the touch. Also, on the left side of my middle back, this is very tender to the touch, not deep into muscle, just painful when touched. Are these symptoms or maybe feelings due to being more active?

  • 53nancy
    53nancy Member Posts: 295
    edited February 2018

    redhead, I continue to have issues similar to yours in my rib cage and areas for the radiation didn’t reach, and I do seem to have some swelling under my arm but the arm so so far doesn’t seem to be affected. We are leaving today for 10 days in Mexico and of course I have no access to A doctor except through emergency,

  • vl22
    vl22 Member Posts: 471
    edited February 2018

    Hi Redhead - Just wanted to let you know that I have tender spots in similar location on the back. Mine has been for most of radiation. Once I started boosts and moved away from whole breast, it seems to be getting better. Not touching it constantly also helps! My even hurt to lean back against a chair at its worst. Hope this helps

  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2018

    Have fun Nancy

  • joan811
    joan811 Member Posts: 1,980
    edited February 2018

    Hi all,
    Checking in....I was last here right before Thanksgiving. Work was hard....lots of dental work to deal with, then a 4 week UTI with resistant bacteria....then the return of my sharp pains in digestive track.
    But, no excuses....I will come back and try to visit more often.
    I have a few tests this week so maybe I will find out why the pains. My abdominal CT scan was clear.
    I will read back the few pages I missed.
    Love & hugs!
    Joan

    Joan811

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.