mammosite radiation
Comments
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mammosite "ads"Kristin N said:LOL this is getting funny
LOL this is getting funny with all of these NEW advertisements. Geesh...
Well, I'm glad everyone is having fun with our "ads" for mammosite but...we really aren't paid to give our opinons about our procedures. I'm pretty sure we just feel strongly about everyone having the OPTION of the 5 day targeted treatment. And...it's not as new as some of you think. The 5 year trials have been over for a few years now. I won't quote dates as I don't have that handy but really everyone can check it out for themselves. None of us get paid to offer our support for those recently diagnosed. But it is empowering to "think" you might be helping another woman going through the same emotional hell that we've all been through with the initial diagnosis. For those of you who really believe we're just advertising well...I guess in a way we are. That's our goal...get the word out about the availability of this treatment while we reassure newly diagnosed women that they will be alright even if they decide full beam is what they prefer. We don't promise any miracles...it's just an option. Besides it's not even the right procedure for everyone. All we're about is..it was great for me. So...for someone who's asked or someone who hasn't heard about it's availability...we just want to help. There's no benefits or perks other than the personal satifaction of supporting another woman - honest.
And please don't be offended by this post. Everyone has the right to their opinion. Just please accept the voices of mammosite posts as legitimate. Thanks for letting me explain and once again good luck to all of us!!!0 -
Good grief!Kristin N said:LOL this is getting funny
LOL this is getting funny with all of these NEW advertisements. Geesh...
Has the ACS/CSN Breast Cancer Board been INVADED? By a GROUP of folks who temporarily "pose" as "members"; but, with only ONE very specific purpose?
Yeah.. Sheesh.
Kind regards, Susan0 -
Very strange, indeedChristmas Girl said:Good grief!
Has the ACS/CSN Breast Cancer Board been INVADED? By a GROUP of folks who temporarily "pose" as "members"; but, with only ONE very specific purpose?
Yeah.. Sheesh.
Kind regards, Susan
Several people signing up to promote one procedure and all sounding very much the same make me pretty certain that something strange is going on here. I would be very wary of taking these testimonials as gospel. This is not a standard therapy and should be investigated deeply before committing. I'm not even sure that this is not one person posing as many. Be very careful, ladies.
Mimi0 -
Terms & Conditionsmimivac said:Very strange, indeed
Several people signing up to promote one procedure and all sounding very much the same make me pretty certain that something strange is going on here. I would be very wary of taking these testimonials as gospel. This is not a standard therapy and should be investigated deeply before committing. I'm not even sure that this is not one person posing as many. Be very careful, ladies.
Mimi
I've just re-read (for about the third or forth time, actually) the American Cancer Society's Terms & Conditions for membership within their Cancer Survivors Network.
Although I'm certainly not a "legal eagle" - it seems to me that the suspicious poster(s) here just may be in violation of that agreement.0 -
strangemimivac said:Very strange, indeed
Several people signing up to promote one procedure and all sounding very much the same make me pretty certain that something strange is going on here. I would be very wary of taking these testimonials as gospel. This is not a standard therapy and should be investigated deeply before committing. I'm not even sure that this is not one person posing as many. Be very careful, ladies.
Mimi
Mimi - I am Rebecca - and no we are not all one person posing as several - we are part of a group call Voices of Mammosite. We are here to help and encourage anyone male or female who has been diagnosed with Breast Cancer. The trial period for Mammosite has ended. So this is a legitimate procedure that one should have the option of looking into when discussing with his/her Dr.'s about what is available for radiation treatment. We have all been thru the MammoSite Radiation and are still around to tell our stories.
Yes Mammosite Radiation should be researched and investigated by the person looking into it. Ask questions, and we are simply here to answer any question about the process we can, as well as to encourage those diagnosed with Breast Cancer. I did my homework with my procedure and found it to be the best option for me. It's all what is Best for the Patient.
I will talk to anyone with any type of cancer. As I have friends who have had other types of cancer and we can talk about our experiences.
Best of Luck to all those who are going thru treatment - and may you find the best option available to you.0 -
mammosite
Hi:
I had mammosite radiation two years ago. If that is an option, it is the only way to go.
If you have specific questions, please go to www.voicesofmammosite.com. A member of Voices of Mammosite will answer you via email any questions or concerns you may have.0 -
2 funny!tolerable2 said:mammosite
Hi:
I had mammosite radiation two years ago. If that is an option, it is the only way to go.
If you have specific questions, please go to www.voicesofmammosite.com. A member of Voices of Mammosite will answer you via email any questions or concerns you may have.
This is getting beyond ridiculous! I know you are entitled to your opinion, as we here are too. But, there is NO LONG TERM PROOF of whether the mammosite works or not. So, anyone considering it, had better be prepared for the results.
thanks0 -
Maybe there was so muchAlexis F said:2 funny!
This is getting beyond ridiculous! I know you are entitled to your opinion, as we here are too. But, there is NO LONG TERM PROOF of whether the mammosite works or not. So, anyone considering it, had better be prepared for the results.
thanks
Maybe there was so much input from the voices of mammosite ladies because they also communicate with one another. I went to both their site and to the mammosite. It has been around since 2002 and according to the clinical trials there have been zero 5 year recurrences. It is used only under certain criteria and is an alternative to standard radiation. Yes, anyone considering this needs to do their research and needs to weigh the fact that it is still very new. But then at one time so were lumpectomies. I can image the talk when there were first being done. I think that many would have advised friends and family to have the "safe" "better" original type of treatment, the mastectomy. They might have said to someone, don't do the lumpectomy just because it is less invasive and recovery is shorter. And when they were first done, they didn't know the prognosis of one compared to the other. Even Arimidex vs Tamoxifen is another "newer" treatment that we don't know the long term prognosis for recurrence. It hasn't been around twenty years. The oncotype test is the same. I think that the bottom line is what many of our regular ladies have stated. Be informed. But I don't think that it necessary to treat these women who seem legitimate (I looked at names on the VOM site) with hostility. They didn't come on here and open this topic. Nor have they gone onto other threads to promote mammosite. They just came and gsve their opinions and their experience. We are usually so welcoming. Why did some of us react with such aggression? I love this board and all of us so much. I hate to see us being so negative about what is, although still new, a legimate treatment alternative. No one was advocating, for example, sucking lemons as the only way to cure breast cancer. I hope that I didn't offend any of my sisters and brothers on board. I am neither for or against mammosite. I just didn't see this as such a big deal. These VOM seem to be just very happy with their choice. And the bottom line is every thing about our disease comes down to choice.
Stef0 -
MammoSite Parameters
Unfortunately, not everyone can have MammoSite 5 Day Targeted Radiation Therapy Treatment. The size and location of the tumor (how close to the skin it is), how many lymphnodes are involved are all factors of being able to have MammoSite. After the first balloon was inserted, I developed large air pockets which is not conducive to MammoSite treatment. Had the larger balloon not worked in eradicating the air pockets, I would have had to have the external radiation for I don't know how long. It would have been much more crulling than the 5-Day Targeted Therapy. We have women on voicesofmammosite.com who are 10 years out from treatment and doing great with it. I most certainly would entertain the possibly of MammoSite should the need arise again (but with God's help it won't). And because it is internal radiation, it is less harming to the internal organs as it has dissipated enough before reaching them compared to the external radiation.0 -
MammoSite ParametersLdyJane said:MammoSite 5 Day parameters
Maggie, you mentioned "if you fit the parameters". What are the parameters?
Sorry LdyJane, didn't see where I could reply from your comment and placed a comment down further about the parameters. Please scroll down to see my comments.0 -
Nothing strange, indeedmimivac said:Very strange, indeed
Several people signing up to promote one procedure and all sounding very much the same make me pretty certain that something strange is going on here. I would be very wary of taking these testimonials as gospel. This is not a standard therapy and should be investigated deeply before committing. I'm not even sure that this is not one person posing as many. Be very careful, ladies.
Mimi
Please check out our voicesofmammosite.com web page, read the women's stories, and locate doctors in your area from it. There are many reputable surgeons and radiation oncologists that are performing this procedure and it is THE WAY OF TREATMENT for many women who want to keep their lives in as "normal" mode as possible, but still kicking the "C" in it's teeth and not letting it get the better of them. Please feel free to locate me on the Voices Of MammoSite website in the state of FL under Bobbie. I am more than willing to tell my story about my treatment, answering what questions I can you may have and trying to help put your mind to ease on what YOU CHOOSE to do...be it traditional radiation or MammoSite.0 -
FOR THE RECORD......rellard said:strange
Mimi - I am Rebecca - and no we are not all one person posing as several - we are part of a group call Voices of Mammosite. We are here to help and encourage anyone male or female who has been diagnosed with Breast Cancer. The trial period for Mammosite has ended. So this is a legitimate procedure that one should have the option of looking into when discussing with his/her Dr.'s about what is available for radiation treatment. We have all been thru the MammoSite Radiation and are still around to tell our stories.
Yes Mammosite Radiation should be researched and investigated by the person looking into it. Ask questions, and we are simply here to answer any question about the process we can, as well as to encourage those diagnosed with Breast Cancer. I did my homework with my procedure and found it to be the best option for me. It's all what is Best for the Patient.
I will talk to anyone with any type of cancer. As I have friends who have had other types of cancer and we can talk about our experiences.
Best of Luck to all those who are going thru treatment - and may you find the best option available to you.
Hi everyone. Just wanted to throw some facts out here. Please do not be offended (not my intention here!).
First of all....the clinical trial that alot of these Mammosite members are referring to here is indeed OVER (and with very promising data & results!).
However....the TESTING is not over. I was asked to be part of several clinical trials YESTERDAY and this was one of them (ladies from Mammosite.....just understand that this is a NEW trial.
As much as I feel some people need to say "yes" to being part of clinical trials (otherwise we would only have standard treatment with no advances) this is one that I personally did decline. The other one I have accecpted to participate in.
It is a promising treatment, however, it has not been given the OK as a ligitamite proceedure YET and by having this done you will still be participating in a clinical trial.
God Bless all the women who have done this for us and all the women that will continue to in the future. I personally mainly declined because I did not want to deal with a catheter put back into my Boobie for one & for two it was not a guarentee that I would be randomly selected into receiving the 5 day treatment. It would have been a hardship on me to travel an hour and a half everyday if I was put into the other group. Also, this treatment is given twice a day for 5 days but remember, it may not be Monday thru Friday actual treatment time and you may need to have the catheter or balloon in your breast longer (over a weekend). However, way shorter than 5-6 weeks treatment.
I would like to thank all the women who have commented on this thread to make us aware of this option and I can understand your enthusiasum with the implications. However, after reading soooo many post at once, it was beginning to sound like an advertisement (which I understand was not your intent) and there was some misleading information.
I suggest that anyone interested in this talk with your Oncologist. Please keep in mind that this is still a clinical study and not an accepted standard procedure yet. Hopefully someday it will be.
Pammy 0 -
Stef......fauxma said:Maybe there was so much
Maybe there was so much input from the voices of mammosite ladies because they also communicate with one another. I went to both their site and to the mammosite. It has been around since 2002 and according to the clinical trials there have been zero 5 year recurrences. It is used only under certain criteria and is an alternative to standard radiation. Yes, anyone considering this needs to do their research and needs to weigh the fact that it is still very new. But then at one time so were lumpectomies. I can image the talk when there were first being done. I think that many would have advised friends and family to have the "safe" "better" original type of treatment, the mastectomy. They might have said to someone, don't do the lumpectomy just because it is less invasive and recovery is shorter. And when they were first done, they didn't know the prognosis of one compared to the other. Even Arimidex vs Tamoxifen is another "newer" treatment that we don't know the long term prognosis for recurrence. It hasn't been around twenty years. The oncotype test is the same. I think that the bottom line is what many of our regular ladies have stated. Be informed. But I don't think that it necessary to treat these women who seem legitimate (I looked at names on the VOM site) with hostility. They didn't come on here and open this topic. Nor have they gone onto other threads to promote mammosite. They just came and gsve their opinions and their experience. We are usually so welcoming. Why did some of us react with such aggression? I love this board and all of us so much. I hate to see us being so negative about what is, although still new, a legimate treatment alternative. No one was advocating, for example, sucking lemons as the only way to cure breast cancer. I hope that I didn't offend any of my sisters and brothers on board. I am neither for or against mammosite. I just didn't see this as such a big deal. These VOM seem to be just very happy with their choice. And the bottom line is every thing about our disease comes down to choice.
Stef
Thank you, I felt the same way. See my earlier post. Pammy 0 -
Stef, thanks for your post.fauxma said:Maybe there was so much
Maybe there was so much input from the voices of mammosite ladies because they also communicate with one another. I went to both their site and to the mammosite. It has been around since 2002 and according to the clinical trials there have been zero 5 year recurrences. It is used only under certain criteria and is an alternative to standard radiation. Yes, anyone considering this needs to do their research and needs to weigh the fact that it is still very new. But then at one time so were lumpectomies. I can image the talk when there were first being done. I think that many would have advised friends and family to have the "safe" "better" original type of treatment, the mastectomy. They might have said to someone, don't do the lumpectomy just because it is less invasive and recovery is shorter. And when they were first done, they didn't know the prognosis of one compared to the other. Even Arimidex vs Tamoxifen is another "newer" treatment that we don't know the long term prognosis for recurrence. It hasn't been around twenty years. The oncotype test is the same. I think that the bottom line is what many of our regular ladies have stated. Be informed. But I don't think that it necessary to treat these women who seem legitimate (I looked at names on the VOM site) with hostility. They didn't come on here and open this topic. Nor have they gone onto other threads to promote mammosite. They just came and gsve their opinions and their experience. We are usually so welcoming. Why did some of us react with such aggression? I love this board and all of us so much. I hate to see us being so negative about what is, although still new, a legimate treatment alternative. No one was advocating, for example, sucking lemons as the only way to cure breast cancer. I hope that I didn't offend any of my sisters and brothers on board. I am neither for or against mammosite. I just didn't see this as such a big deal. These VOM seem to be just very happy with their choice. And the bottom line is every thing about our disease comes down to choice.
Stef
Stef, thanks for your post. As I mentioned in my original post, I had the core biopsy and sentinel lymph node biopsy done when they were still very new, and now they are the standard of care. I feel that having those done instead of the conventional methods has actually helped most of the people in this forum, because the tests were proven to be safe and effective.
I also had DIEP reconstruction this year after a recurrence in the breast that had the full treatment of radiation in 2000. The DIEP is also a relatively new procedure, and I'm thankful that it was available, even though it isn't the standard of care today.
Joyce0 -
Mammosite
I had mammosite radiation in February of 08. All went well and I recently had a mammogram showing NO signs of cancer. I had the catheter put in on a Friday afternoon and went back on Monday for a CT Scan and X-ray to be sure everything was in place. My first treatment was the following Thursday. I finished up treatments on Wednesday of the next week and was back teaching school the following week. The catheter isn't the most comfortable thing, but no real pain associated with it. The treatments were pain-free and very minute side effects. I stayed pretty inactive during the two weeks with the catheter, but was up and around quickly when all was done.
Please feel free to e-mail me if you have specific questions. I hope and pray all goes well for you.
Sharon
Sharon@atcteam.com0 -
mammosite update from jkw who started all this
Wow...I sure did start a fuss with my initial question about mammosite. Many thanks again to all the respondents. Sorry for those who think this is some kind of ad campaign. I guess newer procedures are sometimes suspect....and this one certainly generated some dialogue. I might add that had I known about the VOM website, I probably would have gone there first....so thanks to the person who found my question posted here. It seems to me that this is the purpose of these kinds of forums.
An update: I had the mammo site catheter put in yesterday. Although I must admit that it felt "strange/weird" at first...it felt fine after a couple of hrs. I watched the procedure on the sonogram monitor and asked lots of questions, so I understand the procedure. It was quick and seamless. I have no pain, no real discomfort. Occassional pressure. When I move around a good bit, I can feel it in my breast. Went to work today and stopped back in the office after the procedure, so you know I am fine. Go back tomorrow for the CAT scan , etc. Start on Monday June 29. And I must say I am actually looking forward to it because it will be over so soon. Sound nuts? Well, it is only 5 days and I love that.0 -
BRAC2jkw said:mammosite update from jkw who started all this
Wow...I sure did start a fuss with my initial question about mammosite. Many thanks again to all the respondents. Sorry for those who think this is some kind of ad campaign. I guess newer procedures are sometimes suspect....and this one certainly generated some dialogue. I might add that had I known about the VOM website, I probably would have gone there first....so thanks to the person who found my question posted here. It seems to me that this is the purpose of these kinds of forums.
An update: I had the mammo site catheter put in yesterday. Although I must admit that it felt "strange/weird" at first...it felt fine after a couple of hrs. I watched the procedure on the sonogram monitor and asked lots of questions, so I understand the procedure. It was quick and seamless. I have no pain, no real discomfort. Occassional pressure. When I move around a good bit, I can feel it in my breast. Went to work today and stopped back in the office after the procedure, so you know I am fine. Go back tomorrow for the CAT scan , etc. Start on Monday June 29. And I must say I am actually looking forward to it because it will be over so soon. Sound nuts? Well, it is only 5 days and I love that.
I had a lumpectomey and mammosite radiation in Feb 09 and it went very well. They tested me for the BRAC GENE after radiation and lucky me I have it so now I have to go back for a double mastectomy and a hysterectomy, Wish I would have done that first...Oh well
Wishing you a speedy recovery:) RaeAnn0 -
mammosite
I have just been diagnosed with breast cancer for the second time. 8 years ago I had stage one and had a lumpectomy, chemo, and then radiation. This time it is stage zero in the other breast. Can you believe we were happy with this news!?! After a re-excision last week, I have clean margins. The MRI done today also is clear. My doctors are very excited about the possibility of MammoSite RTS radiation this time around. When I asked about the "newness" of this treatment, they said they were part of the initial studies done and have seen excellent results. Can anyone suggest possible questions I should be asking on Monday when I meet with the radiation oncologist to evaluate the site? When they looked intially at it before the re-excision, the doctor was pleased with the size of the area. After going through chemo and six weeks of daily radiation, I am excited about this form of treatment. It took two years before I felt "normal" again after the last round of treatments. Thanks for all the other comments so far. I have learned more from you than any other site.0 -
No experience2nd Time said:mammosite
I have just been diagnosed with breast cancer for the second time. 8 years ago I had stage one and had a lumpectomy, chemo, and then radiation. This time it is stage zero in the other breast. Can you believe we were happy with this news!?! After a re-excision last week, I have clean margins. The MRI done today also is clear. My doctors are very excited about the possibility of MammoSite RTS radiation this time around. When I asked about the "newness" of this treatment, they said they were part of the initial studies done and have seen excellent results. Can anyone suggest possible questions I should be asking on Monday when I meet with the radiation oncologist to evaluate the site? When they looked intially at it before the re-excision, the doctor was pleased with the size of the area. After going through chemo and six weeks of daily radiation, I am excited about this form of treatment. It took two years before I felt "normal" again after the last round of treatments. Thanks for all the other comments so far. I have learned more from you than any other site.
I have no experience with this procedure because the cavity in my breast was too large. However, there are women on this board who do have experience and I am sure they will have advice. I would recommend that you start a new thread with your question. As you can see, this thread has MANY responses and became somewhat controversial, so you might get more attention if you start your own thread.
Good luck.0 -
Mammosite
I had Mammosite in April of 08 - it was the tool that enabled me to say that I "kicked cancer to the curb in less than 30 days"....I had two lumpectomies a week apart and was done with Mammosite before 30 days had passed....I was so blessed....
Now that your RX treatment is over, it is time to get back to living...schedule your checkups as instructed, but go back to LIVING.
CAROL0
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