Radiation recovery
Comments
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Just thought I would pipe in with a couple of things that I did after rads that helped me a lot. First of all, coconut oil makes a great moisturized without adding any of the toxins or parabens found in most products. I had some condritis (painful inflammation) along my sternum. I went to a great Chinese doc who had his therapist do a deep tissue massage and ultrasound. He was much cheaper than a lot of other options. After just a few sessions, they were able to break up the tissue enough that I did not have any more problems. I also used the coconut oil and did my own massage, and I still do at times. Don't forget that rebounding is essential to a healthy lymphatic system as well.
One more thing I did was castor oil packs. Castor will help to draw out toxins, which are breasts are full of. Put some castor oil on a warm washcloth (really get a lot on it) and then cover it with plastic wrap over the area. You can also add a heating pad. Sit like this for an hour. Do this regularly. The castor oil cloth can be used over and over. You do not start fresh every time.
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I am so unhappy that the typical RO will not acknowledge SEs.
It is also VERY HELPFUL to all of us here, when sufferers talk about it and describe it here. The SEs are REAL. It helps to be supported in our experiences. It also helps to have SOME idea of how long they will endure or reoccur even if it varies from person to person.
I think there is much harm done to women when their experiences are dismissed or ignored. The very BESt doctors listen to a woman listening to her body and acknowledge the innate wisdom of the being of its own self and experience.
For example, my regimin of working out lightly throughout rads, I believe, has been very helpful in maintaining energy levels up until the boost part. The exercises continue to help build and create energy pockets for me. However, at about four weeks after rads (I am now about five weeks after rads), I became MORE tired than before. It may not all be forward in healing momentum. There may be times it backslides awhile.
Ahead of rads, I was told "if there were problems, they would be there for me and take care of them." What that ended up being was boiled down to was "tough it out"," or "endure" and the best of the SE remedies only took the edges off, did not remedy the problems.
I never had pulling or tightening nearly this bad from the surgery as I have had after the boost rads finished. I highly recommend keeping up 5 x a week with daily doing the post-surgery exercises (in the surgery booklet that most hospitals give you - or request the one from U of M). They help with the pulling. All the lengthening and stretching of the arms helps keep it from tightening badly. The after-rads affect seems to want to KEEP shrinking the surgical areas for some time. Under the nipple pain is the hardest for me as I can't really reach it - this is the part -the end- of the milk duct under the nipple that was removed.
I am very grateful for the people here who share. They help me to more-so listen to myself and take control of my own healing.
We are very good sisters.
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Hi,
I haven't done radiation, yet. I went in for the ct scan at the radiologist. I asked to see the scan results and he said there wouldn't be anything for me to see. He told me before the scan that there's less the 1% chance of damaging my lung, but he did finally agree for me to see the scan results, but after seeing the scan and the plan, that's just not true. They will damage the lung, so it's a 100% chance. In order to get the whole breast, they have to radiate the very top part of the lung and it will be permanent. This scares me because I already have asthma, and am very prone to pneumonia, and bronchitis. Is there a possibility they will damage my esophagus? I already have problems with it too from years of acid reflux. I've had to have my esophagus dilated once before. All this risk, for just a 20% reduction in the risk of recurrence. RO said, "It's a gamble" So I'm having 2nd thoughts about the radiation. I feel I do need radiation, but now that I know that they will damage the lung and that he's not being honest with me, I'm scared to go ahead with it. I wish I'd had this information before my surgery last October. I would have opted for the mastecomy instead of lumpectomy. Any advice from those of you who have been through this? Do you regret doing rads? Or are the effects from it worth it? I'd appreciate your answers.
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I did a long study and think about the rads, talking to "other" trusted doctors and looking at family who had old fashioned rads years and years ago at age 60 (my grandmother) and lived nearly 30 more years to 88, cancer-free, and friends more than ten years out from breast cancer, without recurrance.
The docs think that after rads, it is considered that the good cells will regenerate. The cancer cells will not.
The rad onc dept. felt strongly that I had a greater chance of cancer recurring without rads than I had of other cancer occuring from the rads.
After many years, rad is still considered one of the best treatments. The "hormone therapy" is much more controversial.
Anyway, I HATED rads. Still do. But I chose them of my own decision. I HATE the poisoned after-feeling. But talking to those well beyond, the crappy feelings end eventually and you leave them behind.
So I chose NOT to do chemo (after OncDX test) and to do rads and not to do hormone therapy, but instead to do Chinese therapy (to help the body distribute and eliminate hormones in a more natural and less destructive fashion).
Don't know if this will help with your decision. But there it is, how I came to my own in case that helps.
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GrandmaV, I cannot say that I regret doing rads because it does lower the risk of a recurrence. However, I hope never to do rads again. If I had the chance to back to the time when I was first diagnosed with BC, I would choose to have a mastectomy instead of a lumpectomy because that, too, lowers the risk of a recurrence. What is done, is done though, and like everyone else, I try to go on. There are pros and cons to every decision. On the plus side of rads, I have had chronic bronchits for a long time and rads has not worsened the condition.
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truebff and Elizabeth1889, thank you for your answers. It gives me more to think about before going ahead.
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i have not been back to my RO since i finished rads. He said they would call me to setup an appt in january, but i have not heard from them.
THANKS TO ALL FOR YOUR SUPPORT AND ENCOURAGEMENT. I REALLY MAKES ME FEEL BETTER.
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Fhar451-For the record I have been MIA for weeks since my doctors scared the hell out of me by saying they thought I was having yet another recurrence. None of them have even noticed me missing. ( they were wrong by the way)
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Grandma-One thing wish I had known to ask the onc is relative risk vs. absolute risk. For instance, in my case, since I had clean nodes and margins, chance of recurrance was about 15%. The docs told me rads would reduce chance of recurrance by 50%. Well I was thinking that meant 50%. The absolute risk was more like 7%. Rads zapped my thryoid, and has inhibited my breathing even though my tumor was near the surface. There is always a scattering of the rays. How I wish that I had never said yes to rads. Diet and exercise would have given me the same benefits as rads. Plus I still have a red breast, four years later. It takes a long time to repair radiation tissue, if ever. But I will not say anything more about it because everytime I do it starts a fight and the thread gets banned. All I can say is that we each need to do what we feel is right for us. There is no right or wrong or easy answer.
Merilee, it is great to hear the docs were wrong. You have been through so much. I hope you finally finding your way through this maze.
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Hi Vivre-good to hear from you. I see you have a website, would you please PM it to me so I can have a look . I recently started a blog as well. If you want to check it out you can see where it is in my signature.
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Vivre, thanks for the natural tips. I'm trying to go as natural as possible these days. I love coconut oil! I smell like an almond joy all the time. ;o)
GrandmaV, I'm sorry that your RO wasn't totally up front with you. My RO said that my lung might show the effects of radiation and that if I ever have chest X-rays, I need to let the radiologist know that I've had radiation in the past. It's mild scarring, usually. That said, I do have asthma and bronchitis every year in the fall and spring and any other time that a cold happens to find me and I haven't had any problems since radiation. (I finished Oct 31, 2011) I don't regret doing it. It wasn't pleasant. I hated every single minute of it. I hope I never have to do it again, but I would still do it again in order to reduce my risk and have more time with my kids.
Fhar, glad you are here and hope you continue to feel better. Radiation is so draining!
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GrandmaV- I hated rads. I had not felt sick during the entire journey until rads. Then, I felt like I'd never feel better. The two hour round trip each day didn't help, and my RO was very dismissive. Fortunately, three months out, I am getting my energy back and feeling much better. On the other hand, I hate BC worse than rads! Truth is, if I do have a recurrence, I want to know that I did everything I could. Good luck to you whatever you decide and please continue to post when you feel the need. We've been there and we understand.
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I can't thank all of you enough. You've been so helpful and kind. I called my MO today and left a message for the nurse that I will be needing to be referred to a different Radiologist for a second opinion. I don't have any confidence in the first RO. Thank you again. I'll let you know what happens.
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I'm finding that the medical recommendation for the post-radiation cough is cortisone. And I try to never take that drug if I can help it (though sometimes I have, and it does work!) However, after trying lots of ibuprofen, and then Naproxyn for the shoulder, chest, arm pain, I decided to try the natural approach - Wobenzyme is a natural anti-inflammatory with digestive enzymes. You have to take quite a bit - like 15 a day - and you have to take it between meals (or it will just digest your food instead of attacking the inflammation). I have to say it's working as well as the Naproxyn did!!! (And I don't sell it or have any interest in it - so don't think I'm doing that, OK?) It's just something I've known about for a long time but never tried. You find it in health food stores. My friend had some good success with hip inflammation, so I thought I'd try it, and it does seem to help. AND - haha - get this - my cough is better, too! Yay!
Healing love and laughs to you all! Jeana
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I am ready for the burning to subside, and the open burns to scab over and the peeling to begin. I finished 28 daily 6 blast rad treatments with 5 single blast boosts, and I am pretty fried, front and back, and side. I am using Aquaphor to keep the skin moist, and I am sticking to everything!! But, my eyebrows and eyelashes came in wonderfully using the Latisse nightly, and if only my hair would join the party, things could be okay!! I am doing light weightlifing to keep my arm flexible and moving. These things will pass, one day at a time!
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Hi Everyone,
Im back from my Ultra Sound etc. GREAT NEWS......simply seromas (fluid filled) and some fat necrosis (also fluid filled). I seem yo have about 4 or 5 spots plus some swelling under my arm. The radiologist didn't find anything alarming enough to want to do any sort of biopsy.......HURRAH! I'm good to go till April when he wants my first mammogram and another US. I can sure live with that just fine.
So....thanks for all your concern everyone, and I'm sure the prayers and good vibes worked perfectly! I've been worried like crazy about this since the beginning of December, so now I'm a free woman! Am going back to join my women's retreat weeke with a very light step indeed.
I'll check in with everyone at the end of the week....0 -
Kate, Snow is washed away....I guess that's the good kind - it looks beautiful but doesn't cause problems on the roads. I am one of the few who actually likes the winter....but I sure do love the CA weather! Summers are short, it seems, in NY.
About post rads changes -- I was amazed at how fast my swelling went down after rads. Thing is, the irradiated breast (lumpectomy) seems to have lost its firmness and seems to be still shrinking. I have heard this from others; but wondering if it reverses, or stays like this forever.
Gotta get sleep.....first full day of work today since rads, and I am exhausted!
Good night, all.0 -
MostlySew, I am so happy for you. Thanks for sharing the good news with us.
Joan811, Good luck at work tomorrow. I finished rads in August and my radiated breast is still swollen. I am seeing the RO again next month so I hope he can tell me if I am normal or not.
GrandmaV, I think you are doing the right thing by getting a second opinion from another RO. I wish you good luck with everything.
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Mosrteysew-smiling here!
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MostlySew..I am so thrilled to hear your happy results! Now hopefully you can relax and just enjoy life for awhile!
Kate, hope you are feeling better and stronger every day.
Joan...I am 3 months post rads and have a lot of swelling still and my breast and underarm are very sore. I got see my MO this afternoon for a follow up on the cellulitis treatment. The antibiotics have not changed much so may be looking at LE. I hope not.
I also go see my BS this morning for my 6 month follow up, so today is doctor day for me.
I hope everyone has a great day!
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Sew - I am sooooo happy for you! Every one of these scares reminds us how much BC stinks, but also how blessed we are now to be "healthy". Enjoy your freedom for a few months!
God Bless to all!
Vicky
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truebff, can you send me a link to the exercises you do? I never got a book after surgery. I am sore and a little tight in muscles of irradiated breast, would like to do appropriate exercises. I do stretching, but it still feels the same.
Thanks. Pat
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I just got off the phone with my insurance and found out I can get a second opinion on the radiation and if they tell me the same thing I can go ahead with a mastectomy if I decide to. First good news I've gotten in a long time. It feels good to know I have options.
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Hi all, interestingly, the thing I did find out yesterday is that the BC breast will show radiation caused changes for up to 16 months after radiation. Swelling, hard spots, lumpy spot, fluid filled areas are all quite normal to him! Not to us, but to him.....hmmmmm, maybe I'll get that smaller breast yet!
Have a great day everyone....I'm going to sew all day, without a care in the world. Can you tell I'm like a kid in a candy shop?0 -
Mostlysew great news. I am very happy for you.
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Well I got the first appointment of the day knocked out. I saw my BS for my 6 month post op check. He said he is fairly positive I do have lymphedema in the breast. He said the only other thing that even presents this way is IBC. Okay, don't want that so LE the better choice. His nurse was going to look for an LE specialist in my area. I told him I am seeing my MO this afternoon and I think they are looking for specialist for me. He said as long I find one he is good. Oh, also he said I have to wear compression bras. Great..............
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Pat 01, I will see if the U of M after breast surgery exercises are anywhere on line. They take about 5 minutes a day. They include stretching, strengthening, and posture arm exercises.
Four big ones for me include:
-standing about arms length facing a wall then reaching both hands to the wall and creeping up the wall for as full of a stretch as you can get and holding or bouncing for five seconds (do 10 times)
-standing arms length next to a wall and then reaching one arm to the wall and creeping up the wall for as full of a stretch as you can get and holding or gently bouncing for count of 5 (do tentimes then switch sides and do 10 times)
-standing in front of wall, place both hands on wall at should height and then lean in and then immediately lean out stretching and rounding the shoulders and hold in out position for count of 5 (repeat 10 times)
I also have a fun blog where I talk about healthy lifestyle. Let me know if you're interested and I'll send you a link. It describes my other exercises -all sensible, moderate, and some even fun. My philosophy is that exercise should be moderate and short, i.e. easy to fit in with one's lifestyle and energy, and my food motto is: eating healthy should be Delicious! Yeah!!!
(all my edits are mostly because I cannot spell on the internet! hahaha! I only catch the errors after I have hit "save.")
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justmejanis wrote:
Can I hijack this for a few just because I am so upset? We had to move here 1.5 years ago due to my DH's emphysema and COPD. We had a little land in Cheyenne and had two llamas. Yard pets really, but we loved them. Dolly Llama and Fernando were the names I chose...they were a birthday gift for my 50th from my hubby.
Of course we could not bring them here and we worked hard to find them a wonderful home. Free....but only to really a great place. Found the perfect couple with 10 acres and they built a brand new barn on the land per our orders before we would let them go. A big beautiful barn..that was all we needed after talking to the couple many times.
Kristi and I have mailed since we moved with updates and pictures. I have missed them terribly. I came home from the BS, and there was a new e-mail from Kristi. She said that Dolly passed away yesterday. The day before she was fine, no problems, eating and drinking well. Chuck got her from some people who just had a lot of llamas and wanted to thin the herd, so we were never sure of her age. I had her 7 years and she may have simply passed from old ages. They took wonderful care of them. She said Fernando, seems very upset today and so they are giving him extra treats and attention.
I am just heartbroken my friends. Thanks for letting me share.
Sleep softly sweet Dolly.
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Oh sweetie! I'm SO SORRY for Dolly and for you! What a heartbreak. I know they are the sweetest animals and always wanted one myself. But I just want to say how lucky she was to have you and you her. I know she would want you to just continue loving her as always, but I'm so sorry for this pain.
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Janis Thinking of you. So sorry you lost a loved one. Dolly is a pretty llama. I have never seen a dark one before. (been under a rock) Remember the good times you had together. Celebrate her life... I wish I could take away your pain...
Mostlysew so happy you got good results. wOOt!!!
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