Side Effects of Mammosite Radiation Therapy
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Judy,
So happy for you!!! I have had a rather rough week myself. The scar tissue of the mammosite has left me so lumpy it scares me, but the Femara makes me have such diahrea, that it is truly awful. I am a realtor in Las Vegas, and one that has been at the top of the game, and I cannot leave my bathroom until after 11:00 am each morning. I had the mammosite in November, and have had aching all week! I swear, if I feel a lump again, I may give up! So happy things are good with you! I think these doctors know what they are looking for!
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Hello Everyone,
I just found this blog and after reading most of the entries, I feel discouraged about my decision to have the mammosite procedure last month. I also feel this procedure was pushed on me with little time to really make a clear-headed decision. I've been told my breast surgeon, oncologist, and radiologist "are the best", but the first words I heard from each of them and my gynecologist were "lumpectomy with radiation" later to be explained as the Mammosite Radiation Therapy. I had the lumpectomy on Feb. 8, the balloon inserted on Feb. 26, and finished the radiation Mar. 5. I probably shouldn't be writing this because I'm still quite emotional and feel confused.
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I want to thank everyone for sharing. Even though I feel discouraged about my choice, I have learned much from this site and don't feel so isolated. Please keep sharing. Peace to all.
PS - I've had several fine needle aspirations and a biopsy - felt NO pain or discomfort - not even the shots to numb my breast (some deep cysts and the tumor). When I had the balloon inserted, my surgeon numbed my breast, but it was extremely painful until she numbed it more. My doctors and nurses feel there is always going to be some pain and discomfort with this procedure. Has anyone had this experience? Was I expecting too much??
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Hello meAT58:
First of all, I don't know why you are feeling so bad that you had mammosite radiation. I think you should be happy. Do you have any idea how many women aren't able to have this type of radiation or were never offered the option because the doctors don't know how to do this? This is cutting-edge therapy for breast cancer. Would you have wanted to go through the 33 to 36 day radiation and still feel lousy? Yes, some of us do have to pay the price; I've had pain off and on and I'm thankful I'm a survivor. We all need to face reality -- once you have breast cancer, your whole life changes forever! You had a team of qualified doctors that were with you every step of the way as did I. Not a lot of women can be thankful for that. Also, you had the newer improved mammosite surgery. As far as pain with the balloon insert, I had no pain with the insert or the removal of the balloon. Probably depends on our body responses and how emothional we were at the time. I just accepted everything and was so glad my doctors did the best they could for me. I plan to be breast cancer-free four years in July!
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meAT58- I have not been on site lately, have been busy living life! BosomBuddyJ has helped me so much with her insite. She also recommended a bra that has helped me with my cracked ribs that I have had since the radiation. I purchased the Soma, it is wonderful. Thankfully I had only 3 cracked ribs and they are healed. No matter what procedures we have to endure there will always be some discomfort. Isn't living worth it? I had my procedure almost a year ago. It has taken 10 months for my body to adjust to everything it went through. Not only breast cancer, breast surgery, radiation I also had gallbladder removed and hernia repair 2 months before the cancer stuff! I understand how depressing this whole recovery process can be. Not only do you have to deal with your body, there are still the issues that life throws you, personal, family, friends, etc. Take a deep breath, Love yourself, and tell those you care about you love them and if you need help in dealing let them know. That's what family and friends are for. I wish I could express better than I have here, how much we, breast cancer survivors care for you. IT DOES GET BETTER.
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Thank you Diana for your kind words. You expressed yourself very well for your sisters. I'm just doing what God asked me to do for my sisters. Wanted to share with all of you that on Saturday, my husband, friend and I walked in the 5k Komen for the Cure walk in Fort Myers, Fl. It was so exhilarating for me. They honored 700 breast cancer survivors and I was one of them! Met lots of lovely ladies who have gone through it all. We raised $900,000 with 9,000 participants for the Cure. As long as I am able, I plan to stand up against breast cancer in every way I can and fight this thing until a cure is found. Did you all know that now 1 out of 4 women will get breast cancer in their lifetime? We as survivors need to be there for them!!!!
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Hi Busombuddy-
It has been awhile and quite the adventure. Since last we spoke, I came down with a radiation burn one month after finishing my treatments which ended on Dec 18, 2009. It was the worst case seen by my radiation oncologist on her new protocol, but really not that bad. a 1-2 grade burn. I sent my niece a picture. She was a oncology radiation technologist. She said it looked good. That she had seen much worse. Her experience was with full breast radiation. The Dr said I had been on the border of being able to do that procedure because of my small breasts and the position of the DCIS to the skin. It was her hope to reduce this side effect with this newer technique. When things started to change, I started with a video daily diary to show the progression. It took just about a month to totally disappear with the exception of a little darker skin- looks like a tan. Dr is thrilled with the pictures as she plans to use in her research work up and will probably show patients what might happen. It was really no big deal, didn’t hurt, just turned red, peeled etc. The worst part was emotionally. I thought once the treatments were done, that wouldn’t happen. Evidently, it can occur and does and if so at about the 1 month mark. It just really scared me.
I just went to the GYN. SHe said, upon checking my breast, that it felt like a pre-menopausal one, a little firmer and denser than the other with no remarkable lumps, bumps, cysts etc. It still is sore to touch under my arm pit near catheter site. I know it takes time after any surgery to feel back to normal. Looks great as scar (also very good) disappears under my sagging boob!! My energy is up, emotions good.
Now, if I only didn’t come down with shingles last week, I would be a happy camper. Evidently that too can be brought on by “ stress, cancer treatments ( chemo and radiation). I thought I was handling the stress very well. Guess my body felt differently. I did manage to go on anti-vitral medication within 4 days, so seem to have stopped it. Thankfully. So if it gets no worse, I have been very lucky here too.
Just thought I would check in and let you know how it is going.
Susan
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Hello Susan:
Had been thinking about you and wondering how you were doing. I am so sorry to hear all you have gone through. But, in reading your blog, I note the doctor was concerned about performing the mammosite for you because you did not completely fit the requirements. Sounds like you have a good doctor who cares about you and wants to make it right for you. That is so important. Glad to hear things are improving. As far as your shingles, you are right in determining the cause to be undue stress and whatever else is working against you inside of you. I will keep you in my prayers as I do my other bosom buddies. You have my number if you ever want to talk. You are a survivor and you will get through it.
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I am so sad when I hear of "mishaps" and problems with this procedure. I had my surgery on November 18th and was able to start the mammosite radiation after the Thanksgiving Holiday! Now, I am well into March. Other than the stomach issues, which I think is part of the Femara, I am doing great! Of course, my insurance would not cover most of my treatment. I still feel blessed. I spoke to a friend recently that was diagnosed with breast cancer several years ago, and they blamed her usage of fertility drugs. I too, spent many years taking fertility drugs and even doing InVitro. Has anyone else experienced this?
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Oh, I thank God that I found this site.I couldn't sleep much last night 'cos of this pain at the mammosite area which has returned 5 months after radiation therapy so I headed straight for my computer and googled and this site came up! Thank God! I was told by my radiation oncologist that I'll experience some pain for some time after the mammosite and radiation therapy which I did after I finished the radiation on December 16th 2009. But I started having these sharp severe pains at the mammosite area above the scar tissue and indeed I was scared especially when I experienced a sympathetic pain in the right breast which had no cancer.
I am due for my mammogram and ultrasound this month and I am thankful that this site has given me an idea of what to expect; whether a cyst or whatever has been causing the pain. I'll make sure they scan the right breast as well 'cos I don't want any surprises.
As for the bra matter, I discovered that when I used certain bras that I have, I experienced more pain so I am going to try this soma.com and try out this bra and see how it goes.
As for the new procedure SAVI that you gals have been discussing, I hope and pray it will be well for those who are going to use it 'cos this mammosite and radiation therapy is causing many of us sleepless nights. I am glad I have all of you gals to share experiences with. Reading all your comments today has helped me deal with the fears I had been having. Keep it up and keep sharing your experiences and I am sure that TOGETHER WE SHALL MAKE IT! I'll keep you all in my prayers.
I'll let you know the outcome of my doctor's visit on May 21st. Chin up GALS! Cheers!!!
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Hi nanasewa:
Welcome to our site. I am so glad you got the site moving again. It seemed stopped for awhile. What you describe sounds to me like you are going through the healing process inside of your breast and sometimes the pain can feel like it is "biting" if I am correct. You are at the point now with your mammosite where you may experience all kinds of feelings. Try not to be alarmed. Speak with your oncologist if you have any questions or concerns. Don't just carry them around. Ask questions. Your other breast will sometimes bother you as well. Probably, because we put so much stress on our mammosite area. Good luck with your doctor's visit. I'll pray for you. We must remember no matter how much we may suffer or be affected -- we are SURVIVORS!!!
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I am new to this site and have just completed radiation therapy with the contura balloon and was wondering what to expect in the next couple of months. I am a liitle soar and tired which I expected since I just had the balloon removed yesterday, but I keep getting nauseous and I was wondering if that was normal.
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Have not been on the site for a while now. I too, experience the pain sometimes. I find that wearing a bra is almost a must now. Even a swim suit does not have the support I need. I also, after being on Femara for about 4 months, and having gone through menapause a few years ago, and bleeding this week. I thought Femara was to block all of my estrogen. Any ideas? Also, still losing tons of hair. Did not do chemo, as was not in my lymphnodes. Has anyone else lost hair with Femara? Is the contura balloon something new?
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Hello everyone,
I have not been on here since before Christmas of 2009. If you will look back, I too was experiencing some pain after my 6 month mammogram and soreness with a seroma. Well, to make a very long story short, my Radiologist Onocologist ordered a chest x-ray and found that I have 2 cracked ribs! I was continuing exercising and that is why I wasn't getting any better. My technician had been a little rough with me during the mammogram and I believe the radiation can weaken your bones, that's what caused it and they do too. Of course no one thought that could happen, but it did. I am on Arimidex and I know one of the side effects is bone loss. My endroclogoist tells me that I am deficient and very low in Vitamin D (even though I take it everyday) My breast surgeon as suggested I call my oncologist and find out when I should have a bone density test. I saw one of you say you don't have any bone density? Is that from the cancer drug you are taking too? I just thought I would let you all know that they finally figured out that it was the combination of the mammosite radiation and the mammogram that caused my pain. I'm doing so much better now and my seroma was shrunk. It can still be somewhat sore, but it's so much better.
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I'm very happy to have found this discussion board and also happy to read bosombuddyjudy's contributions as I am also from Fort Myers, Fla and I'm her same age! I wish I had been given to Judy as a contact from Reach Out for Recovery since she had the same sort of treatment. I had a lumpectomy 12/4/2009 followed by mammosite radiation twice a day for 5 days. Each treatment was preceded by a CT scan to ensure that the "balloon" was in the correct location. Six weeks later I noticed the under-side of my breast (near the incision scar) had turned pink. Shortly after that, the "color" had spread to most of the breast.(It's not bright red and it's only slightly warm to the touch.) Each of my docs seemed perplexed by this and I was given some antibiotic treatments that didn't really affect the inflammation. It's hard to believe that none of them knew that this is a "normal" side-effect, or is it? Upon my urging, the surgeon took action by ordering an ultrasound. Fluid was in the treatment site and he removed 10 cc of serous fluid. It was tested and found to have "no organisms" present. My dermatologist took some tissue from the reddist part of my breast and that biopsy result was also ok. Occasionally I have low level pain but my energy level is fine. (I resumed playing tennis 5 weeks after the lumpectomy.) I'll be interested in learning if any others have had an "inflammatory" side effect.0
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Hello ckbfm :
You can contact me at pjc6657@embarqmail.com anytime. I would love to speak with you and inquire about your surgeon, oncologist, etc. What you are experiencing happens to many ladies who I have spoken with. My results were different if you read all my previous blogs -- sometimes not so good. You are still very new with your mammosite and healing from inside and outside and your body is adjusting. I have been with Reach for Recovery for ACS over three years, but you can contact me by e-mail.
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Thank you BosomBuddyJudy for our recent exchange of info. I just returned from a long car trip and found that a small down pillow gave me enough protection from the seat belt pressure. I haven't seen the type of pad that attaches to the seatbelt itself but I'll look for it......My inflammation is unchanged.
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Hi, I am new to this site,, I had mammosite treatment 2years and 3 months ago,, over the last couple of months i have been getting really bad pains in my arm and around the mammosite area,, have been to see my nurse and been told that its nerve damage and its as good as it's going to get,, My arm aches constantly and the pains are very servere causing me to have a sickly feeling and bringing tears , its last for a few mins then fades away,, but the ache is still there,,am going to have massage therpy to see if that helps but any other suggetstions will be great,
thanks lynn
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Hi lynn2038
Welcome to our blog. I read your blog several times and I am wondering if you are exercising your arm? You need to start lifting light weights with both arms and then increase little by little. Are both arms the same size? Or, is one arm thicker than the other? This happened to me and when I started lifting weights evenly, all the pain subsided. Also, what type of clothing are you wearing? Is it pulling or putting pressure on your arms and around your breast? I only sleep in sleeveless or strappy nighties to give enough room to move around. I don't believe what your nurse said. We can correct nerve damage by how we treat our bodies. Don't be afraid of lifting weights. Try not to put too much pressure in both areas.
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HI bosumbuddyjudy,
thanks for the reply, I was going to they gym quite a lot using light weights and also doing a lot of swimming, i find i cant swim very far now because of the pain and i no longer go to the gym, but yes i was excersing at the gym about 3 times a week , when i spoke to my nurse she said that the gym wouldnt help my arm,, but would do the rest of me good,
I have been to see my GP he has given me painkillers and a gel to rub into my arm, I am starting massage on the 7th july to see if that helps but am finding it hard to do much of anything using that arm,, a few months after mammosite treatment i was swimming everyday playing badminton twice a week and going bowling once a week ,, so lack of excersise is not the problem , i wear lose clothing in bed so as not to restrict movement, am at a lose to know what to do next,, but will go back to the gym and see if it helps,,
thanks for being there it's nice to know i am not alone
Lynn
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This Nov. will be my 3rd. anniversary for my partial mastectomy for DCIS (early stage) followed by mammosite radiation. My surgeon said I'd be a "good candidate" for mammosite radiation and directed me only to that. The only thing I was told about what to expect was "there may be some fluid but that's easy to deal with". My small tumor was at 6:00 at the chest wall which was a difficult placement for the steriotactic biopsy. But I followed the surgeon's advice telling me the biopsy was "much simpler" than having it excised. I wish I'd had it completely taken out at that point. That biopsy was barbaric going in just below my armpit all that way. Nothing prepared me for anything I experienced. The radiation after my lumectomy/partial mastectomy formed a seroma (a hard, burned tissue area that forms a circular crust surrounding where the balloon catheter is inserted). Mine is the size of a ping pong ball and has had to be aspirated 3 times. It is still extremely painful as well as the ribs on that side all the way around to my spine. I asked many questions prior to all this and nobody told me about these side effects even as a possibility. I was saving my life so everything I went through was dedicated to that goal. Not the surgeon or the oncology radiologist ever told me these are the normal results. I went onto all the sites to see more information about others who had this treatment and mammosite had numerous sites with glowing testimonials about how easy it was and how they experienced nothing of great consequence. I felt so alone and wondered why I had all this pain and discomfort. Today I found this site and my heart goes out to all the women who are dealing with this. I'm not alone after all. Patients should ALWAYS have full-disclosure for any procedure they are considering. Otherwise, how can we make an informed decision. I would never recommend this kind of treatment to another woman - ever. Yes, I'm grateful I have no signs of cancer recurring but the quality of my life has been altered greatly. I will be even happier when I know for sure that this procedure is no longer done. And I urge all medical personnel to not hide the truth of anything they are advising a patient to do. I am very fortunate my cancer was caught early. I will make the best of my situation since I realize now that I'm the only one who can accomplish that. All I went through and am still experiencing are good lessons. I hope all the women on this site are healthy, happy and thriving. Good luck ladies.
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I too am so thankful that I found this site. My mammosite treatments were over last May ' 09. I was wondering if during the time I was having my treatments, the ice packs I was using for discomfort may have caused the scarring. I had also had a very bad cough due to bronchitis I developed after surgery.Since they have lay you on your back I was coughing during the whole procedure. I also have recurrent pain, once they thought I had a fractured rib. I also have a large seroma which they aspirated once but it is back and now they want to see if it will reabsorb by itself.
Now I was wondering if scar removal would help and see if they could surgically remove the seroma. Has anyone tried this?
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Just wanted to say that women who get the whole breast radiation also have trouble with sore ribs. I know I do. Not really pain, but sore to the touch. This is a year later for me. All of the types of radiation seem to cause a tightening/micro scarring in the surrounding tissues.
I was a Contura (similar to Mammosite) balloon failure, so I do have the insertion scar that some of you mentioned. It's still indented too.
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Hello All and ten484:
I had the mammosite radiation in January, 2008 and still have a seroma. It is getting smaller but is still very hard and the skin is more red there than other places. I believe that in time the seroma will become much smaller. Don't know about the hardness. I have chosen not to have any more surgery on my breast because of additional scar tissue and possible complications. Hope this helps.
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I am so happy to find all of you. I had a mammosite in May 09 and have developed the ping pong size ball that so many have spoke about. My Dr.appt. is today and I feel so much better being educated going in to see him, I haven't slept for days, worrying about the cancer coming back. Thanks to all of you for helping me make it through this journey. We ARE all sisters!!
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From the point of LE therapist (and newly dx), scarring from radiation (whole breast or mammosite), these concerns of scarring, pain, soreness, alterations in tissue texture and range of motion issues are very common. Many of the patients I see are referred for exactly these reasons, NOT swelling. This is all falls into the post mastectomy/lumpectomy syndrome category, ICD-0 457.0. When I treat a patient, modalities include manual lymph drainage, myofascial release techniques, kinesiotaping and application of low level laser therapy to the area. These modalities work when applied correctly. It signficantly reduces pain and improves mobility of the the tissue, Look on the website, www.CLT-LANA.org to find a certified therapist.
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HI Everybody:
Wow! How exciting to see our blog jumping! I was very encouraged to hear what lymphtherapist said about the different breast surgeries and the other radiation responses and her suggestions for some of us who can't cope with the cysts and seromas. My scar tissue continues to spread and I found another small cyst which scared the wits out of me! However, yesterday I had my mammogram and I was pronounced cancer-free for the fourth year and now I will try for my fifth. I am totally ignoring my pains and have no intention of attempting to remove any scar tissue surgically. Everything is a badge of honor for me and I am living proof of a breast cancer survivor and thankful for every minute that I am. Remember, ladies, even though many of us are suffering, we are all alive!!!
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Had my lumpectomy and mammosite treatment in November 2009. Still having pain, but also believe it is scar tissue. Because of having breast implants, I have still NEVER had a mammogram. I have my first one scheduled for next month, August. My implants are over 25 years old, and I have never had a problem. Thus, would like to consider myself problem-free. I have made an appointment for "thermography," for this week. I don't want to have my old implants pop, and thinking that this thermography may be a better option than a mammogram. Any thoughts?
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Hello everyone! I'm a newbie here, but I was searching for this very info. I am 2 years and 2 months from lumpectomy and mammosite radiation since May, 2008. I was fine until last week when I noticed a hard lump above my incision. I also have a seroma which has been drained this last week. The lump has gotten bigger, is very hard, and so uncomfortable. This is really discouraging because at my appt in June, mammo and exam were cancer free. At that time I remember my surgeon remarking how soft my incision was! I have seen her twice in the last week and she says the only other thing to do is remove scar tissue. I have been in the medical field as a medical secretary and medical asst for 30 years and I know more surgery almost always leads to more scar tissue. I really am at my whits end, but plan on calling my doctor on Monday to see if there is something else she can do.
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Abearheart:
Welcome to our blog. Please read all the responses here. Do not, I repeat do not remove the scar tissue if you can. The lumps we are all experiencing is scar tissue wadding up and forming marbles in our breast. Can't explain why, but my oncologist does not want to remove my two marbles that formed in the past year after almost four years after my lumpectomy. If he removes the sac holding the marble, it could grow back and if he removes the marble, it also can reappear. I had a cyst drained almost two years ago and one and a half months later, it filled again. I have also recently felt another bump under my armpit and was suspicious. Just had my diagnostic mammogram and was told everything is "clear." I can live with pain if it isn't cancer. My incision hurts from time to time when the weather is bad. It bites. I can live with it as well. See another doctor if you are not happy. Good Luck.
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