Radiation recovery
Comments
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Hello Ladies!!! It has been probably 3 months since my last postings......I met a lot of you in the Sept 2011 rads group. So, to recap, my last radiation was Oct 24, then due to being on Wellbutrin and Lexapro, my doc decided I should not take tamoxifen. I have been on femara as well as Zoladex injections (once a month) since beginning of November. My only side effects have been hot flashes that were fine for the first couple of months, however the last week an half they are much more noticeable. I need to research some natural ways to help relieve them..I am only 39 so I have to deal with this for 5-10 years unless I end up with surgery before that. Dec was my 6 month mammo on left side, all good for now. Follow up with my adorable radiaion onc yesterday (he could pass for 20!!) Skin still tanned but much better. I will never forget the pain and burns I went through........Janis I think you were one that helped me through that!
Ever since my lumpectomy in June of last year my breast has been red, warm to the touch and the pores are deep.......Before rads they did a work up to make sure it wasn't Inflammatory bc, which luckily it was not. However, to this day still have the swelling and heaviness. My rad said he thinks alot from the surgery, my tumor was very deep, I see my surgeon again in a couple months for a checkup. Definitley cannot wear underwire bras yet, I am wearing 46 DD to accomodate the bc breast, before surgery was 44 D or so. bc breast has always been larger, very noticeable since surgery. So when I get home every night I whip off that thing, free the girls and do the lymphatic massage to work out the hard spots......does help, just get tired of dealing with it all the time. I don't mean to complain, I'm lucky to still have my breasts I know, but people that haven't been through this like you girls think the whole cancer thing should be over now. It is and it isn't all the wonderful daily side effect reminders won't let me forget!! I have been very busy back at work, the rad fatigue finally lessened about 4 weeks ago........I hope to stay in touch and catch back up with everybody!!
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Tam it is so good to hear from you. It sounds like you have been through a lot in the past few months. You just literally described my breast! My surgery was in July and I have the same exact problems, the swelling and fullness and redness. I saw my BS for my 6 month checkup last month. He told me I had LE and needed to go to a therapist soon. At that time, my RO thought I might have cellulitis so I was being treated with antibiotics for that. I think my BS was annoyed..he said I did not have cellulitis, I have LE and he would get me a referral to a therapist. Just by coincidence I had a follow up with my RO later that same afternoon for a follow up to the "cellulitis". Saw the nurse and she was still not sure what was going on...RO was not in so she called him. She did say she believed I have LE, but something else is wrong. The RO decided I had some vascular problem and told her to write me a script for Trental....a med which dilates the blood vessels. I have to take this med 3x a day with 400 IU of Vitamin E. Come back in two weeks. When I returned saw the RO two weeks later, I again asked him about the swelling. He indicated he thought it might be LE but is sticking with his vascular issue and told me the Trental can take 3-4 months to work so to just be patient. He also told me NO need to have LE therapy.
Well I finally lost patience. The Elk's Wound Center...where my BS sent a referral for me, called again on Monday to see if I was ready to come in for an evaluation. I told her my BS wanted me to, but my RO specifically told me not to. We agreed that I still need to come in for the evaluation. By the way, I do not have LE in the arm like many BC patients. This type of LE is Truncal LE and the swelling presents in the breast, underarm and chest muscles. So tomorrow afternoon I go in. I am so tired of all the swelling and pain. Hoping they do diagnose the LE so i can finally move forward and get some relief.
Irw.....I get up early so will be in your pocket in the morning. Thinking of you tonight and sure hope you are feeling calm and positive! Sounds like you need a real big pocket.
Kate happy to hear you are recovering and enjoying all the warmth and sunshine. Keep it up!
Hugs and love to all!
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tamcathtech- Welcome back. We missed you.
Irw- I'll be in your pocket too!
Kate- So glad that you are out of the hospital and home and enjoying nice weather! Hugs.
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lrw....am gettin ready to jump in for the waiting room party in pocket....
Am saying prayers for your uneventful surgery and a fast recovery.
waiting is the worst...always.
See you all -- we'll be there when you wake up!
Hugs and good thoughts foryou.
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Thank you Ceeztheday. Thinking about you irw, and hugging you tight. I know all will go well. You are stronger than you think, and you will sail through this. Hugs hugs and more hugs!
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Thanks to Gigi and Gabby. 2 weeks of this pain?
I am not sleeping and it is worse than after the surgery. That really sucks. Of course, after the surgery I had pain killers, but still.0 -
OMG...it's finally snowing here in upstate New York. I'm in the capitol region and it's looking mighty pretty for a change. I feel so good that my radiated breast is not giving me any sypmptons...so far today.....power of the mind. 3 weeks down after today, 3 to go.
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Thinking aboit you Irw, and holding your hand. Kingir66 I am so jealous. I love snow and it was 70 here in Santa Monica yesterday.
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Irw......In your pocket hon! Very crowded in here. Having internet problems or I would have posted sooner. I have been up all night and thought about you...did you feel the warm hugs???? I am holding your other hand. Kate and I have you covered....embracing you in a circle of healing energy! Glad you are here with me Kate. I hope you feel much better!!
I got for my LE evaluation later this afternoon. Will let you know the outcome later!
Love and hugs sweet ladies!
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Irw, Add me to the circle of people thinking about you and praying for you today. You are loved.
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I just had a lymphedema evaluation this morning and I am so glad that I decided to have it done. Most of my doctors thought the swelling in my left arm was too subtle to worry about, but I felt that something just was not right. I could tell there was a difference in that arm. Like my PCP said, if you are wondering if you should have an LE evaluation, then you should get one. It turns out that I do have mild LE and the therapist thinks I would benefit from therapy twice a week for about a month. She always gave me exercises to do daily at home.
My LE is not bad, but it is a constant reminder of BC. It will be nice to have two arms of equal circumference again. Wouldn't it be a good idea for every BS, MO, or RO to automatically evaluate their patients for LE?
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Elizabeth you could not be more spot on! Why on earth does anyone need to go so long without at least an evaluation. We know our bodies. I just cant go with my RO continuing to ignore ths problem. My evaluation is this afternoon. It has become close to impossible to sleep on my BC side (my normal sleep position) because the pain is so bad. Something is just not right with the swelling and redness. I am so relieved I am going.
Still thinking of Irw. So hoping she can post on here later if she had outpatient surgery. HUGS Irw, your pocket is STUFFED today!
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Janis, Good luck with your evaluation today. I hope your therapist will be as competent, gentle, and understanding as mine was. I really hope she can do something to lessen your pain. Everything is worse when you cannot sleep.
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Thanks Elizabeth! I hope the same as well. I will post when I get home. It will be pretty late afternoon.
I am exhausted now and have a real nasty headache. No time for a nap today though.
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Janis, you will feel so much better after your appointment! The therapist helped me right away and gave me the tools to help myself after our sessions were done. Elizabeth my LE was relatively mild as well, but the measurements did show distinct differences on the bc side (trunk, underarm and breast.) I was trying to figure out why it took so long for the doctors to suggest LE therapy until the therapist explained to me that here the industry and insurance company consider LE therapy to be "occupational" therapy instead of physical therapy. Go figure.
Waiting to hear from irw, telling us all is well.
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I just got off the phone with IRW. She is terribly sore and not feeling great and asked me to please post for her. She wants to thank everyone for all the love and support. She didn't get into surgery as early as expected, they wheeled her in about 10:00. She thinks she got home about 4:00, a friend was with her but she was pretty out of it. Poor thing, she sounds miserable but did seem more chipper after we talked. I wanted to post ASAP so everyone can know she is home and working on feeling better! Hopefully she will feel well enough to post an update tomorrow. She is really really sore and taking paid meds. Many loving thoughts headed her way!
I am VALIDATED. I have Truncal LE. No doubt and it was very obvious to her. I really connected with the LE Therapist, Danielle. SAB, you are so right that I feel so much better! I am going to have therapy twice a week for the next three weeks and then we will see how it is. She will teach me the massage techniques to I can do the massage at home. What a relief!
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Hi, ladies. Hope you don't mind if I join your party. I'm starting my 4th week of rads...so far, so good. Some pain, a little itching, but barely red so far. I'm using virgin coconut oil twice a day...just slathering it on and I think it might be helping. It's so much nicer than aquaphor (really, how can you put that sticky stuff on your girls?) I actually got a 4-day weekend from treatment as the center is upgrading their computers (which apparently takes 4 days? hmmmm) so I got Friday and Monday off. I worry constantly about the long-term effects of all these treatments and am scared sh*tless about tamoxifen and even thinking about NOT taking it.
I also have a crappy cold. I wish I knew who gave it to me so I could send them the evil stink-eye.
So does the burning and peeling start after you're finished rads or just late in the treatment plan?0 -
Janis, that's fantastic! Once you know what is wrong you can start to address it. LE sucks, but we do have tools! Thanks, by the way, for posting about irw.
Spinnermom, good luck with rads. I didn't have a bad skin reaction to rads until the last week or so, but some people have issues much sooner and some not at all! Hope you are in the latter group.
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Janis, Thank you for telling us about Irw. I am so glad that you were validated by your truncal LE diagnosis. Just knowing what is wrong helps you to feel better.
Irw, I hope you will feel better tomorrow. I am thinking about you and praying for you.
Spinnerpom, Welcome! Like SAB said, everyone's rad experience is differernt. I hope you will continue to have good luck with rads. All of us were scared about starting AI's or Tamoxifen. My suggestion is to talk to your MO to make sure there are no physical reasons for not taking Tamoxifen or if you would toleratle another similar drug easier. Please at least try the drug because it really does reduce the risk of recurrence in ER+ women. You can always stop taking the drug, but you might be lucky have no SE's or only mild ones.
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Hi Spinnerpom, you must be around #20? You're doing great! Keep slathering on the coconut oil. It's obviously working for you! And yes, Elizabeth is right, too...we were all nervous about starting the hormonal, whichever one we are taking. I have found that some days are better than others as far as side effects, but none are so terrible that I would stop taking it.
Big hugs for Lisa...glad you are home and recovering. I hope this surgery makes a huge difference for you!!
Janis, hallelujah for validation!!
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Hi Ladies,
What great news today. Irw is thru surgery and by now sound asleep and well on the way to recovery. By the way Irw, the pocket party was a blast. Good thing you had such big pockets for us. I didn't have to poke anyone even once with the knitting needles!
Janis...ALL RIGHT! I'm so glad this has been diagnosed so you can get on your way with the healing. I think the therapy will help lots, and get you back on the right path. Your pocket party was a bit rowdier, I must say, what with all the cheering going on!
Kate, glad you're doing better. I think it's actually good youre going to lay low this week because the rest is a good way to lick that infection. Be sure you're eating some yogurt or something with live cultures in it, as you need to support/rebuild the good flora in your system. You probably know this already though.
My knitting convention is going great, although I must say I'm quite tired. One sure way to combat that is to buy more yarn, so I've been doing just that. As someone pointed out to me, I don't have a stash of yarn waiting to be knit into something.....I have a COLLECTION, and it should just be looked at, added to and cherished. Works for me! Perhaps I could view the dust bunnies all over the house in the same manner
For you new gals, welcome to the group. This is a great place to come when you need help, reassurances, expertise, anything. We'll help if possible.0 -
Janis, I am glad you got your eval. One thing my surgeon told me was that I could never sleep on that side again.
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OK, it has been a week since I finished the rads, and last night the entire area turned purple. Is that normal?
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Spinnerpom: I am also starting my 4th week on Monday. I have mild symptoms, slightly pink and having nerve pain but that could be from my fibromyalgia. Keep up with the oil. I'm using aloe vera. I can't take the hormones due to family history of blood clots but probably would not take them anyhow if I could. Some have already posted, everyone is different.
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I have so many concerns about tamoxifen! I know this isn't the tamoxifen board, but I'm gonna put it out here anyway, since you all seem so supportive! I'm an executive, and the cognitive issues terrify me. I cannot afford to have anything but 100% of my creative and strategic juices flowing at all times. I'm also a triathlete and fitness instructor (spinning and TRX) in my "spare time". The thought of pain that might keep me from these activities and completely ruin my quality of life is my other fear. Finally, the weight gain...at even 10 pounds above where I am now, I am diabetic. I might not have ANY of these side effects...or I could have all of them. I guess I owe it to myself to try. My MO didn't seem to think there was any other choice, but my RO wanted to know why on earth I would take tamoxifen when my actualy risk was already really low. He actually told me he wouldn't recommend I take it because "your quality of life will suffer greatly." Interesting, huh?
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Spinnerpom,
I can certainly relate to your concerns about tamoxifen but none the less, I'm quite surprised at your RO recommending against taking it. Have you had onco type testing on the tumor? That should definitively give you some answers about recurances, stats etc both with the drug and without. As far as the rest of the SE's you've mentioned, I think some of the, happen more from the radiation than from the AI in my case. Mand the weight gain goes just the other way for some people. All this is by way of saying, that this is an intensely personal choice for each of us, and it's one of the only ones we can change our mind about.......
Momine, purple sounds a bit weird to me. I turned dark brown perhaps almost purple, and got some red areas after radiation, but what you've got sounds different to me. Is it swollen? Is it oozing? Is it painful? I think like Kingjr said, keep lotion on it, and if it starts any of those things too I think a call to the RO would be in order. Oh, BTW, I lay on my cancer side all the time....I just have to be careful about how I get there. For me, laying on my stomach is totally out of the question.
Hi IRW...how you doing this morning? Just think, no more gall bladder attacks! Hurrah! And , the surgery's done so now just rest and heal up with no more dreaded procedures or surgery looming.0 -
Mostlysew, thanks. Yeah, the RO's reaction surprised me, too. My MO didn't think I needed oncotyping since my tumor was so small and grade one, clear nodes?
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Mostly, I was told that lying on the side where they had taken lymph nodes could trigger lymphedema.
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Spinnermom, welcome to the recovery side of rads! You have already gotten some great advice here I see. In regard to burning, as others have said, it is different for everyone. Some people didn't burn at all while others had more serious skin reactions. Don't anticipate anything bad....you may well breeze through it with minimal problems. I hope this is the case for you! The same with AI's. You have to know the risks and come to an understanding with your doctor on what is best for your body. None of us like them much, but we prefer them to breast cancer!
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Thank you Mostlysew. I am glad that you are enjoying your convention. I am taking it very easy this week. I hate for people to know that I was ill, and this iv antibiotic that I have to drag around is a dead giveaway, so I am staying home a lot. I still have some pain, and that scares me a little. It is not constant. It comes and goes, so that is better. I have an appointment with my surgeon Tuesday, and my infectious disease doctor Wednesday. Wednesday is the last day of my iv antibiotic, so I am keeping my fingers crossed that I will be ok. Welcome Spinnermom. Irw I am thinking about you, and hoping you are doing better today.
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