Side Effects of Mammosite Radiation Therapy
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Hi gals it has been a while.
I think you gals have done a good job with the questions that have been posted .
Thanks
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Good Morning Ladies I just wanted to let you all know that my pain is subsiding. My fractured ribs are improving. I'm guessing that the new bras recommended by BosomBuddy and me just taking it easy have helped. I hope this trend continues! I can not thank all of you enough for the information that you have offered, not only for me but for all of those that have had breast cancer surg. and mammosite in particular. Have a wonderful day.
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I keep reading that everyone is taking Tamoxifin. I am 52 and post menaposal. I had my surgery on November 18, 2009, and did the mammosite. I did the 5 day radiation the week after Thanksgiving, and have been prescribed Femara. I was told that after going through menapaus, that you had to take Femara. The cost difference between Femara and Tamoxifin is tremendous. Then I read that a 72 year old woman is taking Tamoxifin. Can anyone comment on the differences for me.
Also, I have no pain where my surgery was, but have full torso aches by mid afternoon each day. Does anyone have this happening?
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Linda
These post-treatment hormonal treatments were developed to address the small but worrisome percentage of women who had recurrences,even though they were NED at the completion of treatment.
The ACOS standards do say that Arimidex is "standard of care" for post-menopausal women. Some doctors prefer other AIs -- Femera or Aromasin.
Last year, there was a big discussion at San Antonio, and there were a number of papers published that indicated that there is definitely a role for tamoxifen in the management of post-menopausal women, and that cost is definitely a factor that should be considered.
I talked to my onc about this, and there is a statistically significant difference between AIs and tamox for the prevention of recurrence, relatively large for those who have more advanced cancers, but for those of us who are stage 0 and stage 1, the absolute difference is 2 to 5%.
I'm post-menopausal, and I decided to take tamoxifen. I was osteoporotic before menopause, and when I read the side effects of the AIs versus tamox, I realized that the effect on bones was one of the biggest differences between the two.
Everyone needs to do what is right for them. And, ultimately, only you can know what is the right treatment for you.
But you have about an excellent chance of never having BC again, even without hormonal treatment. These are fair questions to address with your oncologist.
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My concern is that I am on cobra at this time, but my cobra expires at the end of the year. I could take Tamoxifin for a $10 flat fee at Walmart (or the equal generic), and Femara has no generic, and the price is $371.00 per month. I wonder if anyone knows whether I could switch to Tamoxifin after a year of Femara?
I also have researched Femara from Canada. The price is approx $200 per month, and they have a generic for Femara which would run about a dollar per day.
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Hi All,
I had my lumpectomy in Dec. 08 for DCIS in my left breast. I chose to have Mammosite radiation. I knew that I would be the first Mammosite patient for my surgeon. It did not go well getting the balloon in (the day after my surgery), or getting it out (he made the hole too small according to the nurse). The area was always hard, but never having had any other surgeries, I just thought this was how it was suppose to be. I had the same pains that other people have mentioned here, sometimes throbbing, sometimes sharp stabbing. Then in Oct. 09, I started having really bad pain in the lumpectomy site, under my arm (my surgeon did not test any lymph nodes), and I had pain every time I took a breath. I thought I had done too much yardwork in my garden, and torn the scar tissue or pulled a muscle. I finally went to my regular doctor in November, and she sent me to get an ultrasound, which showed a large fluid filled cyst. She sent me to a surgeon (not the one who did my surgery). He aspirated three tubes of liquid from the cyst. The relief was immediate. That was the first time my breast had felt soft since my lumpectomy, and the first time I could take a deep breath in over a month. Unfortunately, the cyst filled back up, though not quite as large as before. So, this time I went back to my original surgeon. After checking me out, he now wants me to go for an ultrasound guided biopsy to "get a piece of the cyst wall" to check it out. I am so glad that I found this discussion on the side effects of Mammosite radiation, but I am very sad to see that the majority of us have had problems with it. I am feeling afraid, angry, confused, etc. I'm not sure what to do. But the only other option that my surgeon is offering at this time is to have the cyst removed through my original lumpectomy scar.
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Puppyted:
Read your blog and am very concerned about what your surgeon wants to do with the biopsy. I would definitely find a new breast cancer surgeon and present the facts again. I never heard of what he is proposing to do. I, too, had a fluid-filled cyst drained and it came back again. I have been dealing with the pain, etc. because my oncologist refuses to remove the cyst telling me it can come back and another sac can grow right back. He told me to fool around with it could cause serious trouble similar to one of our sisters in the earlier blog pages. I would never listen to a doctor who didn't do a good job for you the first time. Shop around.
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Hi BosomBuddy,
Thank you for your comments and advice. You are very right. I have not felt really comfortable with either of the surgeons I have seen. The second surgeon I went to see in November, who did the aspiration, seemed more concerned with why I hadn't gone back to my original surgeon (my doctor had given me a choice of the two of them, and I picked the other guy simply because he was closer), than what my problem was. My original surgeon had not done any Mammosite patients before me (and as I've said, I knew this), but it was very painful getting it in, and getting it out. And I know this was due to his not knowing how to do it. After he was done, and the Mammosite representative, a young woman who was present for the procedure, had left, he said I was very "stoic" about the whole thing. He even refunded me a charge of over $400 for the installation, which pretty much speaks for itself. I have read all the postings here, and have seen the one you refer too about the "serious trouble". I don't want to feel like a victim. I thought I had done good research on Mammosite. Part of the reason I did choose Mammosite was because I do elder care for my father, and I just couldn't see how I could take the amount of time I would need for the other type of radiation. But now I feel like I may have made a big mistake, as other people have said. The Women's Center called today to set up the biopsy, and I told them I will have to think on it. They, of course, said to talk to my surgeon. I will try calling my doctor and see if my insurance will cover me to go see someone else, and if she can give me some other names than the two surgeons I have seen. I will keep reading every post here. I have already gained so much from what everyone is sharing. Big hugs to everybody.
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Dear Puppyted, I too am very concerned for you. Definitely get another opinion ASAP. I have never heard of a mammosite rep. involved with a procedure. I had my surgeon (inserted the catheter), my radiation oncologist and a nuclear physicist as well. After the cathether was inserted, I had to wait several hours until they were able to develop the radiation plan. And then every day (before radiation) they did an ultrasound to make sure that they catheter was still in place. It sounds like you never felt comfortable and he surgeon shouldn't be learning at your expense. You owe it to yourself to have someone review your entire case. I'm sorry that you had to go through so much pain. The ladies on this site that have talked about the fluid are absolutely correct. Removing it doesn't really do much good. Hang in there, I'll be thinking about you.
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Still curious if anyone else is being prescribed the Femara following the mammosite radiation, and if anyone has any knowledge of less expensive sources.
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I would definitely research your community and see who is doing the mammosite procedure. I found that in Las Vegas, my doctor was the main person that brought it into Vegas. Also, I believe that the experience of the radiologist is very important. I only had to have a small cyst drained on the first appointment after the removal of the savvy. I do find that I ache, but for some reason it is in my back. I almost wonder if the savvy irritated something in my back due to the location of the cancer.
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- Hi Lindapearson2, I decided not to do Tamoxifen or Femara and haven't had any issues (so far). But when I was talking to my doctor about it he said that you can start with Femara and then switch to Tamoxifen. Supposedly, the extra benefits you get from Femara are beneficial after surgery and then decrease over time. It may be worth a discussion with your oncologist. Sorry I don't have anything more to offer.
.
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Linda,
I was told that tamoxifen is the only hormonal treatment approved by the FDA for DCIS, thus many women take that unless there is some strong reason to prefer one of the others.
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Hello Everyone:
Happy to see this blog is really moving. I get so frustrated when I read some of your comments. As far as taking Femara, Tamoxifin or anything else your doctors want to prescribe to us, have any of you actually asked your doctors what percentage of survival you will have without taking these nasty drugs? For instance, I was told I had an 85% chance of survival without taking the drugs and a 90% survival if I took the drugs. 5% to me is not worth all the problems these drugs cause such as sweats, bleeding, bone pain, etc. I want to live happy as long as I can and I have refused all drugs and even took myself off Fosamax a year ago and was told I don't have osteoporosis anymore. I work out like crazy and I believe if we treat our bodies right, they will treat us right in return. From my experience working with breast cancer patients for American Cancer as a Reach to Recovery volunteer, all these doctors want to do is push drugs on us immediately after surgery. We have to stand strong, ask questions and say no if we feel they are not right for us.
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Just a few thoughts......I have had no problems from my Mammosite therapy and I am one year post treatment....my vessel was inserted by a very competent surgeon here in Illinois and assistance was given by my rad. onc.....however....and I consider this to be a huge plus, the representative from Mammosite was present at my surgery when the temporary vessel was placed, in the surgeons office when the real one was placed....at the initial mammosite set up at radiation site and on the day everything was discontinued.....she had literature for me, answers to questions and extra *parts* so to speak if anything was needed.....I was very impressed with both her knowledge and her helpfulness and as a nurse who does *our type* of nursing I am not always easily impressed. If I can be of any help....please dont hesitate to ask....Im very rarely on the boards but I do check from tme to time both here and private messages
my best wishes are with everyone always
jan
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Hi redsox,
Are you post menapausal? I am so confused and just don't know if I am being sold on a drug I may not need?
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Hey BosomBuddy,
Would love to have your feedback if I am a great wine lover? I totally agree that these doctors get a kickback from the pharmacy developers, but is alcohol really anything involved with your knowledge?
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Hey BosomBuddy,
Would love to have your feedback if I am a great wine lover? I totally agree that these doctors get a kickback from the pharmacy developers, but is alcohol really anything involved with your knowledge?
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Linda,
I am postmenopausal. Whatever your status, I think you should ask the doctor to compare the pros and cons of femara and tamoxifen -- and consider whether femara is worth the difference in cost if you run out of cobra.
Bosombuddy,
I have read the literature very thoroughly and know the statistics well. With a mastectomy I could have reduced my chance of recurrence to barely above 0%. I am willing to accept a higher risk to preserve the breast, but I am not willing to accept the risks that many here seem to be willing to take.
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Linda,
I had already had my ovaries removed, so after a double mastectomy I didn't do radiation or any drug therapy. While you still have insurance, you might want to talk to your doctor about your need for drugs if you were to have your ovaries removed.
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Hi Redsox, so as being post menopausal, did you have the mammosite radiation option, and are you doing femara or tomoxifin? I also fear letting my breast surgeon know that I am aware that my cobra goes away at the end of the year, as will he eliminate his care for me? I love him, but know that it is his way or no way, and I do know that these procedures are highly billed in an insurance situation. My daughter-in-law is a pharmacist and indicates that possibly the generic form of Femara in Canada could be OK? I am just wondering, as a real estate agent, and self employed right now, are there any options?
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I worry that a doctor will write you off if they suspect that your insurance coverage, even Cobra ends at the end of the year?
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Lindaperson2:
First, concerning alcohol for breast cancer survivors and patients: I gave up drinking socially right after my lumpectomy and mammosite because I was told that drinking alcohol, even wine, with our situation can definitely cause a recurrence of breast cancer. Whenever I do drink anything alcoholic, I pay for it with throbbing in my boob or sometimes it swells up a bit. So, even though women are told wine is good for them, it is not good for breast cancer patients. This is explained quite well in women's magazines, especially More magazine. Ladies, you have to do what you feel you want to do.
Redsox:
As far as taking meds after surgery, you have to decide in your heart what is right for you and that goes for all of us. If we believe that these drugs will extend our survival, then we need to take them.
I just want to give all of you a heads up: I am so happy to see this blog really moving and all the wonderful questions and responses coming in. I am learning so much. As far as Cobra, I am retired and not in that situation. My suggestion if you can, don't tell the surgeon Cobra is expiring and take good care of yourself. Wanted to let you all know if you don't hear from me, my wonderful husband is taking me on a cruise to celebrate my upcoming birthday. I will look forward to all your comments. God Bless all of you.
Your BosomBuddy, Judy
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Linda,
Mammosite would not have worked for me because of the tumor location in the breast. I am taking tamoxifen.
You have to use your judgement about your doctor's reaction if you discuss costs/insurance. Some will try to work with you to find a solution that benefits you without extreme cost and others won't.
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Redsox, what age group are you, and are you postmenapausal? I am just still trying to know that I am doing the best thing for me.
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Yes, post menopausal and late-fifties.
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So, have my one month on Femara doctor appointment tomorrow. Actually went to the gym today (surgery November 18) and realize that I have no arm strength any longer! Please keep in mind that I had implants done in 1984 (still same implants) and my surgeon was able to save them and do the mammosite. So, by now you know how vain I truly am. I am 52, still like to have my wine in the evening and still want to do the tanning bed. I of course know what the doctor will tell me, but wanting to know if anyone has any experience on continuing wine and tanning? I want to live, but probably still want to do it my way!
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Hi Everybody:
lindapearson2 - I know where you are coming from. Just celebrated my 68th birthday and thankful I am! You are 52 and have just survived breast cancer. You should live your life the way you want to. If you want to tan and drink, that's up to you. Why deprive yourself of anything unless you want to be cautious and make choices? You will get your arm strength back, but it will take time. Start lifting lighter weights and increase as you go along. Don't be afraid of using your arms. I was at first and noticed one arm was fatter than the other. I quickly corrected that. I am very active at my gym with yoga, zumba dancing and power ball lifting. Push yourself gently.
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Hello Everyone,
Went to a wedding out of town this weekend and met someone that had been diagnosed with breast cancer. She started by taking Tomoxifin and then after other problems had a hystorectomy. Now she is on Femara, and all of her hair is falling out, and her bone density is gone. I would love some advice from anyone on Femara. I am totally amazed that no one on this blog is using Femara.
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Hi Everyone:
Today, after many agonizing months, I saw my cancer doctor and told him I felt a new lump in my left breast where I had my lumpectomy 3-1/2 years ago. He felt around and just above my incision, he located two marble- size lumps that were excruciating when he felt them. After thoroughly checking them out, he told me they were not cancer. Cancer does not cause the pain I was experiencing. He told me the scar tissue had been building up from my mammosite inside my breast and had formed the marbles I felt. We talked about the mammosite and he was very apologetic about the way they used to do them -- letting the holes heal on their own and causing cysts. Because I value his opinion so highly, I truly believe I do not have any additional breast cancer. He did say I could have a biopsy to drain the marbles, but felt very negative about the idea himself. I hope this helps some of us who are struggling with thoughts that the cancer might have returned. I can endure anything if I know it is not cancer.
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