Side Effects of Mammosite Radiation Therapy
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HI BosomBuddy, thanks for the bra info and saying everything is I am experiencing is not unusual. I wish your husband a speedy recovery. Good that both of you are doing well. Take care. dcchef
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I am so glad to have found this site. I has been supportive reading each posting and relating to what has been said.
I was blessed to have had my cancer found through a routine mammogram in November 2009. The lump was less than 1 cm. I was presented with the idea of the mammosite treatment and was thrilled with the thought of only one week of treatment. Due to the holidays I did not have surgery until January 2010. After this surgery I was told I wasn't eligible for the mammosite because the space was not big enough. About a week and a half later I was told I had to have another surgery since enough clear tissue had not been gotten the first go round With this second surgery the space was big enough for the mammosite treatment.
I completed the mammosite treatment in February 2010 - with each of the five days being an adventure in itself, so much so that the hospital sent me flowers! After about a month I ended up with a ruby red area about 3 inches in diameter over the area of the mammosite. It wasn't until the area was disappearing that I was told it was radiation burn. I still have an area about the size of a quarter that is surrounded in red. At times the area where the mammosite was burns, which is soothed by an ice pack. The area of my cancer has been called the Grand Canyon by my medical oncologist and Hiroshima by my PCP. I am pleased I only had to go through the five days of treatment but my depression has sure become unstable. My radiation oncologist said she is more worried about my depression than the cancer.
Thank you all for your postings and unknown encouragement. You have been a blessing and I will be keeping in contact.
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Hello Everybody and jingram4868:
I am so sorry you have had such a time with your mammosite treatment. First of all, do not despair. I believe in time the redness and area will both heal, but I am not a doctor. From what you tell me, it sounds like the doctors who performed your surgeries were not completely knowledgeable about what was going on with you. Telling you one thing and then changing their minds. From my experience counseling breast cancer patients for American Cancer as a Reach to Recovery volunteer and all the information I have heard, I don't think you received the proper treatment. I really believe that we all need to ask questions before we let anyone cut and paste. If we are not sure, we should seek alternate information. There are too many doctors lately too busy or uninformed refusing to give straight answers to important questions. As far as mammosites, we need to ask these doctors how many have they performed and do they enjoy doing them? Some doctors just do them because we ask. Where I live, there are not a lot of surgeons offering mammosite since my surgeon gave up her practice and moved away. They are looking for a different direction. I spoke recently to a new breast surgeon in town and she doesn't like mammosites. So guess what, she probably won't offer them. I was shocked. REMEMBER EVERYONE, WE ARE SURVIVORS AND THIS IS BREAST CANCER MONTH. LET'S CELEBRATE!!!!
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It's been a while since you wrote your post but I am having very similar symptoms and wonder if yours have resolved. I too began having shooting pains intermittentky just over past week or 2 that can be quite intense and are particularly painful when I am facing down ( with my breasts hanging down). During mammogram a couple of weeks ago, radiologist discovered a seroma. I had a lumpectomy following DX of DCIS in August of 2009, followed by MammoSite radiation for 5 days in September of 2009. This is the first pain I havre had, a full year out. If you have an update, I'd love to hear it.
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Igore: I, too, have developed a seroma in my breast a full year after my lumpectomy Nov, 2009. I finished chemo end of March, then radiation which ended June 10. My breast is now huge, hot to touch and painful. I go to my surgeon this afternoon for a needle drain (yuck). I'm beginning to wonder if I should have had a masectomy in the first place. My onc said the seroma may come back again after a needle drain. I'd like to hear how you are doing. After a whole year of this, shouldn't we be done with all this stuff & enjoying life healthy again??? I feel grateful to be a survivor, but my swollen breast is a painful reminder of this last year!
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Hello!
I am new to blogging so please bear with me. I was very glad to find you ladies. I am going for bilateral lumpectomies on November 30th. One is benign and one stage I malignant. Mammosite has been suggested and I was wondering if you felt that you made the right decision to have mammosite vs external radiation. Your reports of cysts and late occuring pain have me concerned.
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I am scheduled to speak to a radiologist oncologist on Monday. I had a lumpectomy on Nov.11th. They removed 2 lumps, one was invasive ductal carcinoma type meassuring 1.5 cm. and and one was a very small in situ tumor that was not detected in mammo/ 2 ultrasounds-1 before MRI and 1 after MRI nor was it seen in MRI. I had wanted to do a special Gamma Imaging type of mammo before surgery that sees thru dense breasts and can find cancer as small as 1 millileter, but my surgeon went on vacation and by the time he came back and okayed it, there wasn't enough time to do it before surgery! Too bad, I bet it would have found that one and it wouldn't have been a surprise to all. Anyway, my surgeon has sugested I do the Mammo Site radiation therapy, but after googling "side effects of Mammo Site therapy" and finding this site, I am very concerned about the side effects you all have discussed here and am in a real dilemma as what to do. I don't know if your reactions are to be expected for most people or if they occur only rarely. Since most of your side effects didn't occur until months or in most cases years after the treatment, are the Drs. and oncologists completely aware of these side affects? They sound very disturbing and in many instances painful. My heart goes out to each and every one of you and I hope these side effects go away--do they??? Do any of you know people who have had this treatment without side effects??? Please let me know any info that will help me to decide--I probably will have to decide on Monday.
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Hello Everybody:
This is especially for mommymu and keeppositive. If you read all the blogs here you will see for the most of us, mammosite has been the right decision. When mammosite first started over five years ago, it was cutting edge and many doctors who performed this type of radiation were not and still are not completely confident with this type of surgery. However, for myself who is starting my fifth year as a breast cancer survivor, I am so thankful that mammosite was an option for me instead of having to endure daily radiation for 33-36days and not being sure they got it all. With mammosite, radiation is distributed directly to the cancer spot only and leaves the rest of your body free from the harmful effects of ongoing radiation and it is a five-day process twice a day. Those of us who have suffered with cysts and other side effects, myself included. I have two benign cysts the size of marbles that will probably never go away and they can be painful to the touch. But, they are not cancer, so I accept these cysts because if you read my previous blogs you will find out that aspirated cysts can come back and fill up again as mine did. Today, mammosite is so advanced and if you have the right doctor who knows what they are doing, less of these problems are occuring. Yes, I know some women who have had mammosite recently and they are fine. The choice is yours. For me, I know I made the right decision. I hope you both make the right decision and you are both in my prayers.
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Hello to everyone.
This is also for the new members, keeppositive and mommymu. I would like to join Judy in saying that MammoSite is a great option. Also remember that 5 years have gone by and the procedure has improved and the doctors doing it have more experience. I had the greatest of care by the most professional team of people you could ask for. I encourage you to go for it!! As Judy said, it sure beats weeks of daily exposure to radiation and limits the tissue that is effected. Your recovery is much quicker also. It has been three months since I finished my MammoSite therapy and can say, if it wasn't for the scar, I wouldn't know that I'd been through a lumpectomy and radiation. Life is good...Hope everyone had a wonderful Thanksgiving. We do have so much to be thankful for.
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Congratulations IrishinNC! That's what I've been waiting to hear! A true success story after five years of experiments! This makes everything I have gone through worthwhile. We've come a long way, ladies and this is why I am fighting so hard to stamp out breast cancer and I won't stop in my lifetime! We need to be less afraid of cutting edge therapy and question the doctors who are presenting their suggestions to us. How many mammosites have they done? Do they like to do them? This is the only way we can have success. Breast cancer is becoming more prevalent every day and we need to ask questions and pay attention to what other people have to say.
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Judy,
I have a question, do you know how often chemo is done after Mammasite radiation? My radiaiton went great, but then I got chemo and radiation recall after my first treatment. Just wonder how often this happens. Am wondering how long we should wait for chemo is needed.
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Thank you everyone for you ecouraging words. Keeppositive, I work in Oceanside NY and will have my surgery Tuesday at South Nassau Communities Hospital. I wonder if we have the same surgeon?
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Thank you everyone for your replies and encouragement. I am going to see the oncologist radiologist tomorrow and am pretty sure I will be doing Mammo-Site therapy, but don't know yet when it will be. Do they start on a Tues. and finish on the following Mon. or must it be 5 consecutive days? How long does the set up take, is it done in one day or on a couple of days?
To the person going to South Nassau Hospital, I had my surgery at New York Presbyterian Hospital and that is where the Mammo Site Radiation therapy will be done as well.
Best of luck to you--all will be well. Keep positive!!!!
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This is for Kira 1234. I counsel breast cancer patients as a volunteer for Reach to Recovery for the American Cancer Society and I have never had anyone ask about chemo after radiation. I did not have chemo, nor have I gone on any chemo drugs after surgery. Your situation sounds unusual to me as you state you had to have radiation again after chemo. I really think you need to ask your doctors these questions and if you can't get good answers, call the American Cancer Society in your area, tell them you have spoken with a Reach to Recovery person and she referred you to them. I will be interested in hearing what you found out. To the other ladies that are going through or have gone through breast surgery, stand proud and be thankful we are all bosom buddies!!
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Judy, I only had radiation before the chemo. Radiation recall is a reaction I got after recieving chemo. I only had 1 chemo treatment because of the burns I got after the chemo treatment were so bad. I'm on Femara now.
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Well I saw the oncologist Radiologist yesterday(Tues. Nov 29). He and the head of the dept. said I was not a candidate for Mammo Site theapy because my grade 3 is--very aggressive and they don't think there is enough data regarding reocurrance in this type of tumor with Mammo Site and there is with Reg. radiation. I am also going to see a Medical oncologist regarding Chemo therapy. Which came as another shock--I thought I didn't need it- it wasn't memtioned before. My surgeon thought that becaus my tumor was small and there were no lymph nodes involved I would be a candidate for Mammo Site, which he has been doing for 6 years, but he said the radiology dept said they have changed rules regarding grade 3 tumors and don't do it for them. Good luck to all of you, and me too!!! Keep positive!!!
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Kira 1234, (and keeppositive..some of this is for you!)
If you don't mind me asking...why did you go for chemo? I had a special test done called an Oncotype test to help determine if chemo would benefit me or not. ASK YOUR DR TO DO THIS!! Mine showed I had a 13% chance of recurrence with just surgery/MammoSite and with chemo it only reduced it to 10%...3% was NOT worth poisoning my whole body with drugs. If you look at it from the positive side...I have an 87% chance of never getting breast cancer again!!! Considering that just by being female we have a 1 in 8 chance...I'll take my 87% and run with it. I would encourage any and all of you to check the information on this site on "alternative and holistic treatments" and start educating yourselves on what's out there that does not include drugs that poison your body and cause horrible side effects. The internet is a wealth of positive information that the MDs won't tell you about. Good luck and God bless. BUT ASK QUESTIONS.
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I have had a cough for quite awhile now I am wondering if anyone else is and if so what have you done for it and if anyone knows what causes it? I have had several chest x-rays and they found nothing. Which I am glad but the cough is annoying. I had my radiation in March of this year. A week ago the area started to get red and tender then very hard. I went to my doctor and when they done an ultra sound found that I had a cyst. They drained it and took biopsies I go back to the doctor on Tue. I didn't ever dream of something like this coming up. I had no trouble with it at the time but it did get sore when I had my first chemo treatment and I put some aquaphor cream on it and it cleared right up but it didn't help this time I guess because there was to much infection in it. I am taking antibiotics for it now. I feel better after reading what others shared about their experiences. Thank you for letting me be apart of this.
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IrishinNC, I did have the Oncotype test done. I got a 24 which is at the top of the gray area during the Taylor testing they are doing. The Onc. I had at that time felt I should do TCX4. As I said I had only one treatment. My new Onc. says he would never have suggested chemo because of my stats even though my Oncotype test came up in the gray arrea.
Something I find interesting is the new recommendations say my tumor shouldn't have been tested. My insurance has since turned down the Oncotype testing payment.
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Hey, Kira1234,
Not sure why your tumor should not have been tested...confusing to me too. My insurance company initially denied my test also even though I had a letter from them giving me the pre-authorization. If you had it pre-authorized, don't give up, Oncotype will go back to the insurance for you. I'm also amazed that you got two different recommendations from two different oncologists...so did I. Seems they all have their own agenda. BTW my Oncotype score was 21. I'm post menopausal and one Onc. suggested AI's the other Tamox. I went with neither!!
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Hi everyone!
Had my surgery - preliminary path (verbal given to the rad oncologist for my visit) was stage 1, sentinel node neg.I'll get the final path report on Weds. from my surgeon. The other tumor again came back benign but I'm glad they removed it anyway. Have to be seen by medical oncologist at the end of the month before they start regular radiation.They don't think I'll need chemo but wouldn't commit until I see the medical onc. I was not a good candidate for Mammosite due to location too close to nipple. I read somewhere on this site that Soma carries a good comfortable bra and would like to get it before I get too burned from radiation. Does anyone know which model is recommended? Thanks for your kindness and support.
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Sep 1, 2010 08:00 pm BosomBuddyJudyinFortMyersFL wrote:
Hello Everybody:
Welcome, Karen3231950. I just bought Soma's latest wirefree bras that replaced the Sofia. They are even better. You can look at them on soma.com. Mine are Larissa wirefree and Body Bliss Sara wirefree. Can wear them all day. Chico's/Soma are great contributors for breast cancer nationally. Be sure to lift the weights.
Judy Cook
Diagnosis: 7/11/2006, DCIS, <1cm, Stage I, Grade 1, 0/2 nodes, HER2-0 -
Wow! It's been two months since I first commented and boy has there been feed back.
I was leery of returning due to my perceived judgement call on my doctors. I have the best doctors in the area - my surgeon being the chief of surgery at one of the three local hospitals. I appreciated her being cautious with the first surgery and more aggressive with the second so there was not a third.
I am glad I chose the mammosite treatment, even with the side effects I have experienced.
Igore and emegram: I was so encouraged by your posts.
I did have my first mammogram since my diagnosis last month. It came back clear for any cancer but the fluid build up was found and supported by a subsequent ultrasound. I just went to my radiation oncologist Wednesday, 12/8, and my medical oncologist today. I felt so validated by my radiation oncologist Wednesday - she understood every symptom I voiced. Thankfully, she did not feel I needed to bear with the pain of the seroma, and gave me a prescription for vicodin. Boy, have the last couple of days been better! Both of my oncologists want me to return to my surgeon for another opinion - my radiation oncologist says now, my medical one says in February 2011 when my one year anniversary is met. I'm opting for February!
I still have the red 'burn' reminder of all I have to be grateful for. I was told by both oncologists that it probably won't go away.
Thank you all for your ongoing support and encouragement. I won't stay away so long - you are good for the soul!
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I had the bi-mastectomy in June, finally got my reconstruction done in October, had a pet/ct scan right before reconstruction and the only thing they really found was tonsils 'glowing'. Since have had another ct and mri of neck with no clear answer to what the problem is. The report includes one vocal chord too.
I'm terrified it's tonsil cancer. You're right kokokoko they don't offer much in the way of encouragement...<50% to live 5 years. What did you do to beat this. I probably will be having tonsilectomy surgery soon. Any help is appreciated. Thank you.
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Thanks karen3231950. I'll try these bras. I saw the med onc last week and she wants to wait for the Oncotype DX results before deciding on the need for chemo. Genomic Health (Oncotype company) did not request pre-auth from Aetna until 12/20 even though they received my specimen on 12/9. So we wait!!!! This whole thing started mid-October and most of the time has been spent waiting for results. So frustrating. I'm OK as long as I'm doing something positive. Hopefully, I won't need chemo and will start my radiation (not a candidate for Mammosite) beginning of the new year. Hope you all have a wonderful holiday season. Keep the faith!
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Thank you all for the most helpful information. I was unaware that this site existed and I am so happy that I found it. It's been 18 months since I had Mammosite Radiation Therapy and have experienced various pains from the beginning which I was told by my doctors was normal. My latest mammogram on 12/27/10 showed a considerable amount of calcification and the radiologist recommened biopsies. I spoke to my oncologost and she referred me back to the surgeon who performed the lumpectomy and also highly recommended the mammosite procedure which was performed in his office.. After reading the many enlightening discussions on this site I am wondering if I should go ahead with the biopsies or is there another screening method available.
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Carol73inFl, I have been advised by my healthcare provider NOT to have a mammogram so soon after my surgery (due to have one in Feb which would be 6 months after lumpectomy). She has recommended thermography...it will show more and I've learned that it can detect breast cancer much sooner than mammography can. It could possibly tell you if the calcifications are just that or if there's disease present again. It may be worth having. I don't think insurance pays for it, but it isn't paying for any of my other alternative care either. Your health is more important than being concerned about what insurance will and won't pay for. Good luck and let us all know what is happening.
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Carol173inFL
Wow, just read your blog. I think you are too new with your mammosite and lumpectomy to have biopsies. If you read many of our bogs, you will note the results of sometimes improper mammosites done by doctors or just what has happened to some of us after mammosites. There are many other tests like MRI and ultrasound and maybe thermography, which I don't know wmuch about, that you might try before getting involved in biopsies. You are still healing and after almost five years, my oncologist tells me the two lumps I have inherited from mammosite are non-malignant and believe me sometimes they can be a real pain! Remember, ladies, a lot of these doctors just want our money and will suggest all kinds of alternatives to get it. I note your address in Florida. I am curious where you went and who your doctor may have been. You can always contact me via e-mail if you want, or just comment on the blog. Good luck.
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Thank you IrishInNC and BusomBuddyJudy. After reading your replies I decided not to go back to the surgeon as I know he will definitely advise biopsies as this is his livelihood. He had me see a radiologist in his office to discuss mammosite radiation the day of my first appt. before I even had the lumpectomy. Yet, he was referred by my gynecologist of 20 years who is herself a breast cancer survivor. I'm not saying he isn't a good surgeon, but I feel he will discourage any alternative methods. Yesterday I made an appt. with a well known oncologist to get a 2nd opinion and hopefully continue in her care. I lost faith in my present oncologist as she never called me after receiving the latest mammography report (mistake) and when I call the office after one week she referred me back to the surgeon and said she didn't know that much about mammosite radiation. That is the reason I started to research on my own and again want to thank you for your valuable information. If I didn't read all your posts I would be having the biopsies right now.
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I had my six-month mammo and ultrasound on December 30. Everything was nice and clean, thank God.
There is a 3cm benign seroma present, but is not bothering me right now. Oncologist says sometimes it takes months for these to be absorbed. I was aware of this SE before I had the Contura radiation.
So far, the Contura procedure has caused me very little grief. I feel that I made the correct decision for myself.
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