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Prophylatic Breast Removal
I was diagnosed with Invasive Lobular Cancer in my Right Breast last Oct. Stage 2 Three out of 17 nodes positive.
E & P positive and Her2 negative. Pathology showed 3 seperate locations in the breast.
I had a mastectomy of the right breast, Chemo consisting of 4 rounds of EC and 12 of Taxol and am just finishing
33 daily radiation treatments, 28 + 5 booster treatments.
Since I had Lobular cancer located in more then one location in the right breast I'm seriously considering
prophylatic removal of my left breast in Nov. It will be one year since my original diagnosis.
Considering my diagnosis I'd like to know if I'm making a logical decision. I'm over 60 and not consideration
any reconstruction because I do not want to be bothered with additional surgery or deal with possible additional
complications. My goal is to try and eliminate a new Invasive Lobular Cancer popping up in my left breast and to save my lymph glands on this side. When both breasts are removed will I continue to need MRI's
Thank you for your response. I've given my decision a lot of though and waited a year to have the surgery.
E & P positive and Her2 negative. Pathology showed 3 seperate locations in the breast.
I had a mastectomy of the right breast, Chemo consisting of 4 rounds of EC and 12 of Taxol and am just finishing
33 daily radiation treatments, 28 + 5 booster treatments.
Since I had Lobular cancer located in more then one location in the right breast I'm seriously considering
prophylatic removal of my left breast in Nov. It will be one year since my original diagnosis.
Considering my diagnosis I'd like to know if I'm making a logical decision. I'm over 60 and not consideration
any reconstruction because I do not want to be bothered with additional surgery or deal with possible additional
complications. My goal is to try and eliminate a new Invasive Lobular Cancer popping up in my left breast and to save my lymph glands on this side. When both breasts are removed will I continue to need MRI's
Thank you for your response. I've given my decision a lot of though and waited a year to have the surgery.
Thanks SO much, Patsy--I appreciate all the info! I'm going to send you a private message with more details.
Hugs,
Norah
Hugs,
Norah
Here is one of the studies about the Tesla 3 MRI machine
Biologic effects of 3 Tesla (T) MR imaging comparing traditional 1.5 T and 0.6 T in 1023 consecutive outpatients.
Weintraub MI, Khoury A, Cole SP.
SourceDepartment of Neurology and Medicine, New York Medical College, Valhalla, New York, USA. ***@****
Abstract
BACKGROUND: The recent use of high and ultra-high magnetic field (MF) systems (3.0 T and above) have raised concerns about biologic effects and safety. Sensory symptoms (magnetophosphenes, dizziness/vertigo, headaches, metallic taste, pain changes, and cognitive effects) have been reported. We monitored 1023 consecutive outpatients undergoing MRI after recent introduction of a 3 T MR unit in our community.
METHODS/DESIGN: Observational study utilizing a pretest and posttest symptom rating scale (0-10) questionnaire presented to subjects undergoing MRI at three different facilities with five MRI machines, specifically a 3 T (Philips), three units with 1.5 T (GE, GE, Philips), and one 0.6 T (Fonar) unit to record symptoms before and after study.
RESULTS: 147 subjects (14%) experienced either new (N= 69; 6.7%) or changes (N= 78; 8%) in symptoms. New onset symptoms occurred predominantly with 3 T and female preponderance (75%) [P= .002]. Vertigo/dizziness (N= 28, 5.6%) [P= .001], headache (N= 8), spine pain (N= 11) occurred more frequently on 3 T, whereas magnetophosphenes (N= 8) and metallic mouth symptoms (N= 4) occurred principally in 1.5 T. Seventy-eight subjects (8%) experienced pain symptoms upward arrow downward arrow with 75% occurring with 1.5 T. Females were 60%. Forty-three percent of individuals had brain MRIs. Symptoms of vertigo/dizziness, headaches, and magnetophosphenes were more commonly seen in individuals undergoing brain MRIs but other body sites were also represented.
CONCLUSIONS: Although no harmful effects were reported in 1023 cases, an unexpected high rate of 14% of individuals experienced sensory stimulation in both 3 T and 1.5 T units. Females appear to be more magnetically sensitive.
PMID:17608910[PubMed - indexed for MEDLINE
Biologic effects of 3 Tesla (T) MR imaging comparing traditional 1.5 T and 0.6 T in 1023 consecutive outpatients.
Weintraub MI, Khoury A, Cole SP.
SourceDepartment of Neurology and Medicine, New York Medical College, Valhalla, New York, USA. ***@****
Abstract
BACKGROUND: The recent use of high and ultra-high magnetic field (MF) systems (3.0 T and above) have raised concerns about biologic effects and safety. Sensory symptoms (magnetophosphenes, dizziness/vertigo, headaches, metallic taste, pain changes, and cognitive effects) have been reported. We monitored 1023 consecutive outpatients undergoing MRI after recent introduction of a 3 T MR unit in our community.
METHODS/DESIGN: Observational study utilizing a pretest and posttest symptom rating scale (0-10) questionnaire presented to subjects undergoing MRI at three different facilities with five MRI machines, specifically a 3 T (Philips), three units with 1.5 T (GE, GE, Philips), and one 0.6 T (Fonar) unit to record symptoms before and after study.
RESULTS: 147 subjects (14%) experienced either new (N= 69; 6.7%) or changes (N= 78; 8%) in symptoms. New onset symptoms occurred predominantly with 3 T and female preponderance (75%) [P= .002]. Vertigo/dizziness (N= 28, 5.6%) [P= .001], headache (N= 8), spine pain (N= 11) occurred more frequently on 3 T, whereas magnetophosphenes (N= 8) and metallic mouth symptoms (N= 4) occurred principally in 1.5 T. Seventy-eight subjects (8%) experienced pain symptoms upward arrow downward arrow with 75% occurring with 1.5 T. Females were 60%. Forty-three percent of individuals had brain MRIs. Symptoms of vertigo/dizziness, headaches, and magnetophosphenes were more commonly seen in individuals undergoing brain MRIs but other body sites were also represented.
CONCLUSIONS: Although no harmful effects were reported in 1023 cases, an unexpected high rate of 14% of individuals experienced sensory stimulation in both 3 T and 1.5 T units. Females appear to be more magnetically sensitive.
PMID:17608910[PubMed - indexed for MEDLINE
Hi NC,
I'm near Troy. If I lived closer to Ann Arbor I would have used U of M medical center. As it turned out I was able to make contact with one of the Breast Onc. there on line. I wanted to check out the Chemo protocols that were suggested by 2 Onc. in my area since they were different. I finally picked the one closest to what they were using at U of M.
I never had the advantage of using an MRI along with mamograms for screening. It was never offered to me. I've had Mamograms since I was 39 and they all came back negative even the one that I had in May 2010 prior to being diagnosed with ILC that Oct.
BTW nausea is also a side effect from the Tesla 3. It's part of the side effects listed and found in 14% of the people placed in that machine. Techs and even doctors will tell you
your symptoms are related to anxiety but in this case with Tesla 3 and higher magnetic machines these side effects are not all in your head or caused by anxiety. They are cause by the strong magnetic field. The hot flashes you have will eventually lessen. When I had them I found a pad on QVC that when you sat on it the chemicals inside turned cold. I'll look for the name of it. I used it at work, home, in my car everywhere and it worked nicely. No refrigeration required and it was not wet at all. It just got colder.
In addition I also used a bandana that had beads in it that when soaked in water turned cold too. You let it sit in water for about 5 min. then wrap it in a towel to extract all the moisture. It can be tied around your neck for cooling comfort. Amy port in a storm.
Just some ideas for you.
I'm near Troy. If I lived closer to Ann Arbor I would have used U of M medical center. As it turned out I was able to make contact with one of the Breast Onc. there on line. I wanted to check out the Chemo protocols that were suggested by 2 Onc. in my area since they were different. I finally picked the one closest to what they were using at U of M.
I never had the advantage of using an MRI along with mamograms for screening. It was never offered to me. I've had Mamograms since I was 39 and they all came back negative even the one that I had in May 2010 prior to being diagnosed with ILC that Oct.
BTW nausea is also a side effect from the Tesla 3. It's part of the side effects listed and found in 14% of the people placed in that machine. Techs and even doctors will tell you
your symptoms are related to anxiety but in this case with Tesla 3 and higher magnetic machines these side effects are not all in your head or caused by anxiety. They are cause by the strong magnetic field. The hot flashes you have will eventually lessen. When I had them I found a pad on QVC that when you sat on it the chemicals inside turned cold. I'll look for the name of it. I used it at work, home, in my car everywhere and it worked nicely. No refrigeration required and it was not wet at all. It just got colder.
In addition I also used a bandana that had beads in it that when soaked in water turned cold too. You let it sit in water for about 5 min. then wrap it in a towel to extract all the moisture. It can be tied around your neck for cooling comfort. Amy port in a storm.
Just some ideas for you.
Hi, Patsy,
Thanks so much for responding. I honestly don't know which machine is used for my MRIs but I'm scheduled for the 25th and I'll definitely check it out. I also get very sick with the MRIs, so maybe it is the Tesla 3. It's such a small world---are you in the Ann Arbor area by any chance? I get very nauseous and when I breathe deeply to keep from throwing up, it shows up as motion and I've had to repeat the test! I hate it, too, but I know it's the only way to really screen in my situation. I'm also claustraphobic, so maybe that contributes to the nausea. The first one I had, I had terrible shoulder pain from the positioning, and didn't think I'd survive the hour in the machine holding perfectly still. Th techs have adjusted my arm position, so that's not such a problem now. I've found if I take Valium an hour before, get the earliest possible appointment in the morning and don't eat anything prior, it's a little better, but not much.I also still get horrid hot flashes ( will they ever stop??!!) and I think that contributes to the nausea, too. At first I thought it was the contrast, but the techs tell me that isn't it---who knows?
My LCIS was found on excisional biopsy of two areas with suspicious clusters of microcalcifications. One had only fibrocystic changes but the other had the LCIS with proliferative fibrocystic changes. Since then, I've only had the every six month screenings with mammo & MRI. My oncologist talked about tamoxifen, but with the severe hot flashes I have, he didn't want to prescribe it yet. Basically, it's been watch & wait. I see a new onc on the 30th, so I will discuss it again with him. Did you have LCIS prior to ILC?
I very much appreciate your concern and I'm glad to have a new friend from MI!
Thanks so much for responding. I honestly don't know which machine is used for my MRIs but I'm scheduled for the 25th and I'll definitely check it out. I also get very sick with the MRIs, so maybe it is the Tesla 3. It's such a small world---are you in the Ann Arbor area by any chance? I get very nauseous and when I breathe deeply to keep from throwing up, it shows up as motion and I've had to repeat the test! I hate it, too, but I know it's the only way to really screen in my situation. I'm also claustraphobic, so maybe that contributes to the nausea. The first one I had, I had terrible shoulder pain from the positioning, and didn't think I'd survive the hour in the machine holding perfectly still. Th techs have adjusted my arm position, so that's not such a problem now. I've found if I take Valium an hour before, get the earliest possible appointment in the morning and don't eat anything prior, it's a little better, but not much.I also still get horrid hot flashes ( will they ever stop??!!) and I think that contributes to the nausea, too. At first I thought it was the contrast, but the techs tell me that isn't it---who knows?
My LCIS was found on excisional biopsy of two areas with suspicious clusters of microcalcifications. One had only fibrocystic changes but the other had the LCIS with proliferative fibrocystic changes. Since then, I've only had the every six month screenings with mammo & MRI. My oncologist talked about tamoxifen, but with the severe hot flashes I have, he didn't want to prescribe it yet. Basically, it's been watch & wait. I see a new onc on the 30th, so I will discuss it again with him. Did you have LCIS prior to ILC?
I very much appreciate your concern and I'm glad to have a new friend from MI!
Hi NC,
Thank you for your reply. I don't know if you have your MRI's on the Tesla 3 MRI machine but I do. Because of the high magnetic field of this machine it gives me terrible vertigo.
I've actually found studies that show aprox 14% of patients experience this distressing side effect. It makes me sick and the thought of having to have an MRI using Tesla 3 every 6 months is worse then making the decision to remove my other breast. I don't think I want to live the rest of my life knowing I'll have this distress every 6 months.
Because ILC does not show up on mamograms my advice to you is to continue having MRI's and if possible with the Tesla 3 even though I hate that machine. It gives the clearest pictures but it also can show false positives which can lead to biopsies. Have you had any surgery for your LCIS? Your new friend from MI
Thank you for your reply. I don't know if you have your MRI's on the Tesla 3 MRI machine but I do. Because of the high magnetic field of this machine it gives me terrible vertigo.
I've actually found studies that show aprox 14% of patients experience this distressing side effect. It makes me sick and the thought of having to have an MRI using Tesla 3 every 6 months is worse then making the decision to remove my other breast. I don't think I want to live the rest of my life knowing I'll have this distress every 6 months.
Because ILC does not show up on mamograms my advice to you is to continue having MRI's and if possible with the Tesla 3 even though I hate that machine. It gives the clearest pictures but it also can show false positives which can lead to biopsies. Have you had any surgery for your LCIS? Your new friend from MI
I just wanted to let you know that I can empathize with you in making this difficult decision. You've already been through SO much more than I have. I only have LCIS but because of additional risk factors, my oncologist said I'm a candidate for bilateral prophylactic mastectomies. I'm three years older than you, it'll be two years in October and I'm still debating the possibility. I'm just not ready to take that drastic step yet. I do know that if I ever do end up with invasive cancer (hopefully, never), I would definitely consider it more strongly. The stress of mammos and MRIs every six months can take it's toll. I'm sure it's a really small thing to others here, including you, who've had it much worse than I have, but it's there. It sounds like you've given it a lot of thought and researched the options carefully. I wish you all the best in making your decision and hope you're in an area with excellent medical care available. If you do go ahead in November, I hope everything goes well for you. Please come back if you wish to let us know how you're doing. Take care,
nc
nc
Thank you for your response. I have checked with all my doctors and have gotten
the pros and cons. Because ILC is difficult to find I think my best bet is to remove the second breast. I honestly don't think one can be watched close enough to find this type of cancer quick enough. The doctors said I already have 2 strikes against me (1) the diagnosis of ILC and (2) it was found in more then one site in the right breast. Articles
that I've read also indicate if you have these two things you should seriously consider removing the other breast. I've waited a year so I'm not rushing into making this decision.
the pros and cons. Because ILC is difficult to find I think my best bet is to remove the second breast. I honestly don't think one can be watched close enough to find this type of cancer quick enough. The doctors said I already have 2 strikes against me (1) the diagnosis of ILC and (2) it was found in more then one site in the right breast. Articles
that I've read also indicate if you have these two things you should seriously consider removing the other breast. I've waited a year so I'm not rushing into making this decision.
Patsy,
I had ILC as well and chose to remove my left breast for preventative measures since ILC tends to go bilateral. My oncologist agreed that it was a good decision and overall it reduced my risk tremendously. Please discuss with your doctors.
I did it for added peace of mind. By the time I had my second mastectomy there were two masses in it, both benign, thank goodness! But the fear .... oh how I remember that fear.
Best wishes.
I had ILC as well and chose to remove my left breast for preventative measures since ILC tends to go bilateral. My oncologist agreed that it was a good decision and overall it reduced my risk tremendously. Please discuss with your doctors.
I did it for added peace of mind. By the time I had my second mastectomy there were two masses in it, both benign, thank goodness! But the fear .... oh how I remember that fear.
Best wishes.
Before I made this decision on my own I would discuss it in detail with all my Dr.s. I'm not sure what type of follow-up would be advised after surgery but I'm sure you would need to be followed in a similar manner. Mastectomy does NOT insure that any form of Breast Cancer will not occur at some point in the future. Of course it always comes down to your decision but it's best to be well informed before this decision is made. Regards..
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