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Are there specialists who regularly deal with GM in the U.S.?
I'm not sure if this question can be answered in a public forum, but I'd like to start gathering the names of specialists in the U.S. who have dealt with G.M. on a repeated and successful (as successful as they can) basis. I'm in the Pacific NW, but we're open to flying to different states if there's someone out there who has dealt with this before. When I got my (tentative) diagnosis, I let the rest of my caregivers know, and their collective response was, "Huh! Never heard of it! Weird!" along with lots of sympathy, but not much help.
I am feeling a lot of grief today over this condition--over the lack of information, and also over my own case. Sometimes I try to just do wound care without actually looking at or feeling my breast. Last night I took some time to look at it and feel the lumps. The lumps have definitely spread, and the breast as a whole just looks so awful--so unhealthy. I want to start doing something about it, but I'm also scared. I have four children--the oldest turns seven this month--and I'm their primary caregiver. I can't imagine going through major courses of medication while trying to care for them. I think it would be helpful to have an expert walk me through all the possible side effects, et cetera, rather than just sitting around being scared.
Anyway. Tangent. If posting the names of doctors or clinics isn't allowed, I think I saw a message function on this board? Either way, thanks for being here and willing to share what you know.
Margaret Ann
I am feeling a lot of grief today over this condition--over the lack of information, and also over my own case. Sometimes I try to just do wound care without actually looking at or feeling my breast. Last night I took some time to look at it and feel the lumps. The lumps have definitely spread, and the breast as a whole just looks so awful--so unhealthy. I want to start doing something about it, but I'm also scared. I have four children--the oldest turns seven this month--and I'm their primary caregiver. I can't imagine going through major courses of medication while trying to care for them. I think it would be helpful to have an expert walk me through all the possible side effects, et cetera, rather than just sitting around being scared.
Anyway. Tangent. If posting the names of doctors or clinics isn't allowed, I think I saw a message function on this board? Either way, thanks for being here and willing to share what you know.
Margaret Ann
Hi,
My wife is having a lot of pain from her first mastitis incision and drainage (surgery) and we are not too sure if the doctor is a mastitis specialist and we were wondering if anyone knows of a specialist in the Boston area. If anyone knows of someone in Boston, that information would be very helpful to us.
She is in so much pain and maybe a specialist would be able to help us better.
Did you feel lumps still after an I&D? We still feel hardness like a lump and its been 4 days since her surgery
My wife is having a lot of pain from her first mastitis incision and drainage (surgery) and we are not too sure if the doctor is a mastitis specialist and we were wondering if anyone knows of a specialist in the Boston area. If anyone knows of someone in Boston, that information would be very helpful to us.
She is in so much pain and maybe a specialist would be able to help us better.
Did you feel lumps still after an I&D? We still feel hardness like a lump and its been 4 days since her surgery
Hi. Dr.Kristi Funk in Beverly Hills CA(Her breast center is called the Pink Lotus). She gave me options and other docs . She was very helpful in finding a Rhuematalogist . Dr Danial Wallace in Beverly Hills that has treated the disease with success.
I'm keeping you in my prays this is a hard thing to deal with. I chose mastectomy . Everyone has a different take on this. I gathered my info and then made my own decision.
Jeannette
I'm keeping you in my prays this is a hard thing to deal with. I chose mastectomy . Everyone has a different take on this. I gathered my info and then made my own decision.
Jeannette
Hi allegro:
Apologies I have been so quiet - many reasons for this, all can be directly related to my health and the resulting circumstances I find myself in, but that is a story for another day...
It is very normal to have recurrence after stopping Prednisone treatment, it has therefore become pretty standard practice to introduce Methotrexate along with the Prednisone treatment and slowly wean off the Prednisone, then the methotrexate, there seems to be much less return of disease this way, others are treating with methotrexate alone. If using Prednisone, in the management of GM, the generally recommended course is a moderate to medium dose, for an extended period - not a stop, start sort of thing.
My flare ups became increasingly less involved, as is the case with many women, so you have that to look forward to likely.
It is extremely painful for some of us, I did not take pain medication for a long time, and in hindsight I am not sure this was wise. The pain muddied my thinking and judgement, and in my case kept me working, when I was far too ill to be doing so...my employer of three years then laid me off four days before a known spinal biopsy I had scheduled, and asked me to sign off on all insurance coverages Iong before I would have the biopsy results).
I guess what I am trying to say is, be kind to yourself. I know you hate the drugs, but I would keep them steady until you see the specialist and then follow their advice on weaning to avoid flares and pain in the future.
I still have pain in my breast four years on, but not nearly what it was...I have also come to emotional and intellectual terms with GM, which is of course a huge part of living with this disease...it all helps.
Yes, I believe you will have relief soon. The pain will not continue as is - you will manage it with the experts and learn how to get your life back.
Take care and best wishes, Jo
Apologies I have been so quiet - many reasons for this, all can be directly related to my health and the resulting circumstances I find myself in, but that is a story for another day...
It is very normal to have recurrence after stopping Prednisone treatment, it has therefore become pretty standard practice to introduce Methotrexate along with the Prednisone treatment and slowly wean off the Prednisone, then the methotrexate, there seems to be much less return of disease this way, others are treating with methotrexate alone. If using Prednisone, in the management of GM, the generally recommended course is a moderate to medium dose, for an extended period - not a stop, start sort of thing.
My flare ups became increasingly less involved, as is the case with many women, so you have that to look forward to likely.
It is extremely painful for some of us, I did not take pain medication for a long time, and in hindsight I am not sure this was wise. The pain muddied my thinking and judgement, and in my case kept me working, when I was far too ill to be doing so...my employer of three years then laid me off four days before a known spinal biopsy I had scheduled, and asked me to sign off on all insurance coverages Iong before I would have the biopsy results).
I guess what I am trying to say is, be kind to yourself. I know you hate the drugs, but I would keep them steady until you see the specialist and then follow their advice on weaning to avoid flares and pain in the future.
I still have pain in my breast four years on, but not nearly what it was...I have also come to emotional and intellectual terms with GM, which is of course a huge part of living with this disease...it all helps.
Yes, I believe you will have relief soon. The pain will not continue as is - you will manage it with the experts and learn how to get your life back.
Take care and best wishes, Jo
I saw the doctor at Princess Margaret and am being referred to the rheumatologist at Sunnybrook next. My goal in all of this is to get off prednisone. Until I see that doctor I have to use this awful drug.
In the meantime I have another, what we are referring to as, flare-up. Everytime I get a flareup it comes back faster an stronger than the last one.
I had been off the prednisone for three weeks, albeit with lots of joint pain and stiffness. I was so hopeful and was ignoring the little twinges in the breast.
Then there it was again. Back to prednisone. I must have not started early enough or something because it is, regardless of prednisone, it is getting worse again. I have been also put on morphine for the pain and to let me finally sleep. (Somethiing I didn't do for three nights before finally giving in and going to the emergency department in tears)
I don't know if this is the forum for this but can someone tell me if these flare-ups get worse everytime?
Should I be returning to my medication (predinisone) earlier, even before I see the purple colour and swelling return?
Until I see that specialist at Sunnybrook I have to manage this with my doctors in our town, who have admitted they don't know this illness but mean want to best for me. They are very willing to read what I bring them and have even gone off and read up on this disease themselves.
Someone tell me that this disease, if not curable, is at least manageable without so much pain.
Thanks...so glad I found this group. Hugs to all!
In the meantime I have another, what we are referring to as, flare-up. Everytime I get a flareup it comes back faster an stronger than the last one.
I had been off the prednisone for three weeks, albeit with lots of joint pain and stiffness. I was so hopeful and was ignoring the little twinges in the breast.
Then there it was again. Back to prednisone. I must have not started early enough or something because it is, regardless of prednisone, it is getting worse again. I have been also put on morphine for the pain and to let me finally sleep. (Somethiing I didn't do for three nights before finally giving in and going to the emergency department in tears)
I don't know if this is the forum for this but can someone tell me if these flare-ups get worse everytime?
Should I be returning to my medication (predinisone) earlier, even before I see the purple colour and swelling return?
Until I see that specialist at Sunnybrook I have to manage this with my doctors in our town, who have admitted they don't know this illness but mean want to best for me. They are very willing to read what I bring them and have even gone off and read up on this disease themselves.
Someone tell me that this disease, if not curable, is at least manageable without so much pain.
Thanks...so glad I found this group. Hugs to all!
I dont know why I havent posted this but I live in Atlanta, GA and go to...
Atlanta Breast Care Specialists and see Dr. Carrie Stallings their # is 404-255-8086 they treat my boob and I see a rheumatologist for my meds Dr. Paul Sutej at Atlanta Arthritis and Rheumatology Associates their # is 404-255-5956
Atlanta Breast Care Specialists and see Dr. Carrie Stallings their # is 404-255-8086 they treat my boob and I see a rheumatologist for my meds Dr. Paul Sutej at Atlanta Arthritis and Rheumatology Associates their # is 404-255-5956
Hi allegro:
sorry for the delayed reply, but I am so happy that you are able to access the Henrietta Banting Breast Centre - and if by chance you are not, there is a rheumatologist at Sunnybrook Hospital in Toronto - who has treated at least 4 or 5 cases. I can't remember her name right now...but they do have experience there too, and if by change you can't get in to Women's College, I would suggest you request seeing the rheumy at Sunnybrook (the Breast Centre at Women's College know the referral info). Have also heard of a couple of cases being treated at Princess Margaret - they have quite an advanced breast centre there.
Really hope you will find experienced care very shortly and get on with healing.
JoJo
sorry for the delayed reply, but I am so happy that you are able to access the Henrietta Banting Breast Centre - and if by chance you are not, there is a rheumatologist at Sunnybrook Hospital in Toronto - who has treated at least 4 or 5 cases. I can't remember her name right now...but they do have experience there too, and if by change you can't get in to Women's College, I would suggest you request seeing the rheumy at Sunnybrook (the Breast Centre at Women's College know the referral info). Have also heard of a couple of cases being treated at Princess Margaret - they have quite an advanced breast centre there.
Really hope you will find experienced care very shortly and get on with healing.
JoJo
Thank you for your response. Through another member of the forum, I ended up seeing a doctor here in Seattle who has treated many cases. I am so thankful that we didn't end up having to travel to a doctor!
I live in San Diego and am being treated by doctors that have never heard of our disease. However, I am going to go see a doctor in LA who has treated IGM in the past.
Her name is Dr. Cathy Dang at Cedars Sinai in the breast care center.
http://cedars-sinai.edu/Bios---Physician/A-G/Catherine-M-Dang-MD.aspx
Hope this helps.
Her name is Dr. Cathy Dang at Cedars Sinai in the breast care center.
http://cedars-sinai.edu/Bios---Physician/A-G/Catherine-M-Dang-MD.aspx
Hope this helps.
I can't thank you enough for listing your doctors and treatments received in Toronto. I am 45 minutes north of Toronto was diagnosed (after months of preparation by health professionals to prepare myself for a breast cancer diagnosis).
We have a breast cancer surgeon in our community who, while wonderful, has never treated this, my GP has never treated this and neither has the doctor for internal medicine that I was sent to see.
I have been on prednisone (as high as 50 mg) since May and while it manages this condition I just turned 40 and can't imagine being on it forever. As I decrease the dose I become quite sick and have unmanageable pain. I haven't been able to get below 35mg of prednisone since I started this. I work and have a child, I just can't be sick like that for long periods of time.
The doctor for internal medicine suggested I find someone who has treated this before and work with them to manage it. The trouble was finding someone who had experience. I was so happy to see that someone else was being treated for this within reasonable distance.
. After reading your post I had to take a quick walk of happiness before writing this as I was becoming quite depressed at the lack of info and support for this condition. I will be calling my doctor for a referral tomorrow. Thank you a million times for thinking to share your story here
We have a breast cancer surgeon in our community who, while wonderful, has never treated this, my GP has never treated this and neither has the doctor for internal medicine that I was sent to see.
I have been on prednisone (as high as 50 mg) since May and while it manages this condition I just turned 40 and can't imagine being on it forever. As I decrease the dose I become quite sick and have unmanageable pain. I haven't been able to get below 35mg of prednisone since I started this. I work and have a child, I just can't be sick like that for long periods of time.
The doctor for internal medicine suggested I find someone who has treated this before and work with them to manage it. The trouble was finding someone who had experience. I was so happy to see that someone else was being treated for this within reasonable distance.
. After reading your post I had to take a quick walk of happiness before writing this as I was becoming quite depressed at the lack of info and support for this condition. I will be calling my doctor for a referral tomorrow. Thank you a million times for thinking to share your story here
Thank you, all, for your posts on this. We've had visitors or been visiting for the last two weeks, so I've been offline for the most part. Sadly, I need to start paying attention again to getting care. With all the busyness lately, I've just ignored it, which is obviously not helping matters!
Here's my story in a nut shell. My mother died of Breast Cancer over 35 years ago which puts me in the "high risk of getting Cancer". But, I believe I never will get it, because I'm healthier, less stressful than my mother, and I strive to have a "positive attitude". I've already outlived my mother...she was 49 when she passed away and I'm 52 and going strong!
In Sept. 2010, I had a healthy mammogram & was shocked when I felt a lump in my breast 6 mos. later. I had extreme soreness, pain, inverted nipple, all at the same time in my left breast. After a sonogram, needle biopsy I was diagnosed with IGM.
No one was familiar with it including my Breast Surgeon. Because I had "suspicious cells" the doctor opt to remove the mass and get another opinion that was when my diagnosis was confirmed as IGM.
I left the Breast Surgeon because she passed me on to another doctor who had never heard of IGM. After feeling depressed, I decided to learn as much as I could about this IGM which is when I found MEDHELP.
I'll always be thankful to JoJo's advice! She's awesome and I'm grateful for this website!
After I made a lot of phone calls, network with friends in the medical profession, I came across a doctor that sees "unusual cases" who I'm seeing now. She has treated and is treating patients with IGM. Since I already had the mass removed, she is only monitoring me now every 6 months which means she's going to rotate my visits with a Breast MRI and a sonogram. It was such a relief to find a doctor who is not only concerned about my health, but is familiar with IGM. She did tell me that if I had gone to her first, she would not had removed the mass (which I'm glad I did for peace of mind) and prescribed prednisone.
By the way, she said to avoid smoking & soy which I find almost impossible because soy is in almost all foods. Apparently, some cysts or tumors "feed" on soy. You might want to research info. on soy.
Good Luck & let me know how everything turns out. Here's info.
UT Southwestern Medical Center/Dallas, Texas
Roshni Rao, M.D. (My doctor)
Assistant Professor
Division of Surgical Oncology
Toll Free 866-460-4673
www.utsouthwestern.org
Frankie 53
In Sept. 2010, I had a healthy mammogram & was shocked when I felt a lump in my breast 6 mos. later. I had extreme soreness, pain, inverted nipple, all at the same time in my left breast. After a sonogram, needle biopsy I was diagnosed with IGM.
No one was familiar with it including my Breast Surgeon. Because I had "suspicious cells" the doctor opt to remove the mass and get another opinion that was when my diagnosis was confirmed as IGM.
I left the Breast Surgeon because she passed me on to another doctor who had never heard of IGM. After feeling depressed, I decided to learn as much as I could about this IGM which is when I found MEDHELP.
I'll always be thankful to JoJo's advice! She's awesome and I'm grateful for this website!
After I made a lot of phone calls, network with friends in the medical profession, I came across a doctor that sees "unusual cases" who I'm seeing now. She has treated and is treating patients with IGM. Since I already had the mass removed, she is only monitoring me now every 6 months which means she's going to rotate my visits with a Breast MRI and a sonogram. It was such a relief to find a doctor who is not only concerned about my health, but is familiar with IGM. She did tell me that if I had gone to her first, she would not had removed the mass (which I'm glad I did for peace of mind) and prescribed prednisone.
By the way, she said to avoid smoking & soy which I find almost impossible because soy is in almost all foods. Apparently, some cysts or tumors "feed" on soy. You might want to research info. on soy.
Good Luck & let me know how everything turns out. Here's info.
UT Southwestern Medical Center/Dallas, Texas
Roshni Rao, M.D. (My doctor)
Assistant Professor
Division of Surgical Oncology
Toll Free 866-460-4673
www.utsouthwestern.org
Frankie 53
Doctors/Centres in Toronto Canada:
for what is it worth, I have had compassionate, thoughtful and professional treatment which I would call excellent... at Women's College, Henriettat Banting Breast Centre in Toronto, Ontario Canada
I believe my surgeon has treated four patients in her career
the pathologists, radiologists, surgeons and office staff are top notch...important
Dr. Pamela Lenkov and Dr. Tulin Cil, Surgical Oncologist have been my main treatment providers
Sunnybrook also has a rheaumatologist who has seen a few cases - I can't recommend WCH highly enough though - care as it should be
Jo
for what is it worth, I have had compassionate, thoughtful and professional treatment which I would call excellent... at Women's College, Henriettat Banting Breast Centre in Toronto, Ontario Canada
I believe my surgeon has treated four patients in her career
the pathologists, radiologists, surgeons and office staff are top notch...important
Dr. Pamela Lenkov and Dr. Tulin Cil, Surgical Oncologist have been my main treatment providers
Sunnybrook also has a rheaumatologist who has seen a few cases - I can't recommend WCH highly enough though - care as it should be
Jo
there is another doctor in Philly, published on IGM, and at one time she contacted me and expressed an interest in assisting our group, however that fizzled out likely due to legal issues - anyway, I have no personal background or reference for her, idea of her expertise but here goes:
Link to article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1949402/
her email is: ***@****
Link to article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1949402/
her email is: ***@****
One other thing- I had searched and searched for specialists. Had even emailed Johns Hopkins Breast Center- I mean you'd think they would have someone! But no one even at Johns Hopkins had ever heard of IGM!
Hi there,
I am in Philadelphia which is probably not helpful to you...but the most recent breast surgeon I saw was Dr. Sataloff in Philadelphia. She is not really an expert as I am only her second case- but she knows more about our disease than other breast surgeons as she has seen at least two of us.
She was somewhat helpful but by the time I got to her I started taking matters into my own hands- it was after two other surgeons, both of whom had operated on me- and I was on prednisone which I hated. I am very alternative-medicine oriented and because I was not getting better I decided to consult with a number of alternative practitioners and I was on a protocol of herbs for a long time. Self-weaned off the prednisone (an infectious disease dr had prescribed it- he told me how to get off) with lots of side effects and draining and pain, but I did it- and slowly, slowly started to feel better with the new herbs I was taking.
Don't know if this was helpful to you,
Miriam
I am in Philadelphia which is probably not helpful to you...but the most recent breast surgeon I saw was Dr. Sataloff in Philadelphia. She is not really an expert as I am only her second case- but she knows more about our disease than other breast surgeons as she has seen at least two of us.
She was somewhat helpful but by the time I got to her I started taking matters into my own hands- it was after two other surgeons, both of whom had operated on me- and I was on prednisone which I hated. I am very alternative-medicine oriented and because I was not getting better I decided to consult with a number of alternative practitioners and I was on a protocol of herbs for a long time. Self-weaned off the prednisone (an infectious disease dr had prescribed it- he told me how to get off) with lots of side effects and draining and pain, but I did it- and slowly, slowly started to feel better with the new herbs I was taking.
Don't know if this was helpful to you,
Miriam
Jo,
Thank you for your replies (to this question as well as my other posts). I can't tell you how much it means to me! You are so consistent in keeping this community updated and connected, as well as welcoming newcomers.
No problem on needing time to post the specialists. I suspect patience is a virtue I'll need to be practicing a lot with IGM :).
I'm sorry you're not well at the moment. I'll pray for you.
Take care,
Margaret Ann
Thank you for your replies (to this question as well as my other posts). I can't tell you how much it means to me! You are so consistent in keeping this community updated and connected, as well as welcoming newcomers.
No problem on needing time to post the specialists. I suspect patience is a virtue I'll need to be practicing a lot with IGM :).
I'm sorry you're not well at the moment. I'll pray for you.
Take care,
Margaret Ann
You are right to feel upset and frustrated so be kind to yourself.
I have at various times, researched all published doctors on the disease (many in the US) and done email campaigns to them, trying to get some support. I will post this list - why not, it is public info on the net.
Most did not reply to me, those that did often advised they were pathologists or radiologists, not direct caregivers. Anyway I might do it here or on the GM website. Will try to do today.
Short answer - I don't know of any definitive expert. Drives me nuts that we have a large sample of women right here, who would be willing to participate in any studies to learn more about this disease - most published articles are based on samples such as 8 cases over 20 years at some centre...why the heck is no one looking at us?
Sorry -- my own tangent.
Let me see what I can post to assist. Only problem is I am not well with some other issues and can't sit or work for very long, etc. so you might need to be patient.
Best wishes, Jo
I have at various times, researched all published doctors on the disease (many in the US) and done email campaigns to them, trying to get some support. I will post this list - why not, it is public info on the net.
Most did not reply to me, those that did often advised they were pathologists or radiologists, not direct caregivers. Anyway I might do it here or on the GM website. Will try to do today.
Short answer - I don't know of any definitive expert. Drives me nuts that we have a large sample of women right here, who would be willing to participate in any studies to learn more about this disease - most published articles are based on samples such as 8 cases over 20 years at some centre...why the heck is no one looking at us?
Sorry -- my own tangent.
Let me see what I can post to assist. Only problem is I am not well with some other issues and can't sit or work for very long, etc. so you might need to be patient.
Best wishes, Jo
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