Aa
Any advice please?
Dear all, I am writing about my wife. She has had significant inflammation of her left breast, redness, pain and also joint pains (especially knees and wrists) and general fatigue. I'll try and keep a long story short but as you will all know, that's quite difficult! We had our baby in May 2011 and my wife has recurrent mstitis for two months. It got so bad that she was admitted to hospital (in Spain) and they gave her a drug to stop milk production. They felt it was the best solution to stop her suffering and to avoid an operation. All was well until February this year when the mastitis returned and seemed worse. This time the breast looked angry, bigger than the other one, hardness over a big part of it, redness and very very tender.
One month ago she eventually saw a breast specialist who did US, Mammogram and core punch biopsy. The radiologist report said that this was either atypical mastitis or inflmammatory breast carcinoma. The biopsy came back as benign and also negative for all other things they tested for (bacteria, TB etc). The relief was immense but they were still concerned, so arranged an MRI a week later. This has obviously concerned them greatly as they called yesterday wanting to see her right away. The MRI has identified a mass and clearly has other suspicious characteristics. They want to do further core punch biopsies of the breast and also of the underarm.
We also went to see another specialist privately for a second opinion. He said that this could be granulomatous mastitis, albeit that it is v rare and he has not seen many cases in a long career. Anyway, he has proposed doing a mammotome biopsy to get further samples for testing and also as removing some of whatever is there may help relieve symptoms (she is in real pain and feels like she doesn't want her breast anymore.)
Should we do more core punch biopsies or go for the mammotome?
We are extremely anxious and just wondered if anyone can help or offer any advice / similar experiences?
With many thanks, Winton
One month ago she eventually saw a breast specialist who did US, Mammogram and core punch biopsy. The radiologist report said that this was either atypical mastitis or inflmammatory breast carcinoma. The biopsy came back as benign and also negative for all other things they tested for (bacteria, TB etc). The relief was immense but they were still concerned, so arranged an MRI a week later. This has obviously concerned them greatly as they called yesterday wanting to see her right away. The MRI has identified a mass and clearly has other suspicious characteristics. They want to do further core punch biopsies of the breast and also of the underarm.
We also went to see another specialist privately for a second opinion. He said that this could be granulomatous mastitis, albeit that it is v rare and he has not seen many cases in a long career. Anyway, he has proposed doing a mammotome biopsy to get further samples for testing and also as removing some of whatever is there may help relieve symptoms (she is in real pain and feels like she doesn't want her breast anymore.)
Should we do more core punch biopsies or go for the mammotome?
We are extremely anxious and just wondered if anyone can help or offer any advice / similar experiences?
With many thanks, Winton
I am writing this because, like a lot of the women on this site, I am desperate. I write to you because you seem to have dealt with this for a while and have a lot of knowledge. Please help. I started with my GM around March 21st of this year and two weeks ago went to see a rheumatologist who said it was GM and that he wanted to treat it with methotrexate for 18 months and that the almost dozen patients he had treated so far had success. He had briefly mentioned it was experimental. I have been reading your comments and those of the other ladies after I saw him in the hopes of finding anyone who tried that treatment. I have not started it because I'm afraid of chemo, even in low doses and am scared of letting him know I'm not keen on trying the therapy he suggested. I went to see a holistic healer recommended by a lady who was diagnosed with breast cancer and she says that it is caused by inflammation and we have to treat the cause and that the methotrexate only treats the symptom. I am anxious to find anyone who has tried this and to see what they felt during treatment, side effects, etc. and what they think. Any help our there?
Hi Winton:
CMbabys has given you great advice, history. As she has mentioned, you can read lots of information in this forum, albeit not organized in the best fashion, unfortunately.
My advice at this point, and I believe that you and your wife have done everything correctly to date...my advice at this point is to have your specialist, the one suggesting this new treatment course to contact the current worldwide specialist that I know of, for a telephone or electronic communication and consultation. I believe she will do both as she seems genuinely interested in dealing with all cases and helping us out as a patient group - incredibly generous of her. Anyway, once you have done this...and even if this is not successful, I think at some point with GM, you just have to trust your own gut, (or your wife does), as each case is different, and move forward with some treatment to relieve your wife's suffering.
I do not know if your wife currently has draining areas from the affected breast, open sinuses? Often there will be large collections of debris visible on ultrasound with GM and if you have a radiologist, carefully, under ultrasound, 'drain away' some of this inflammatory debris, it will often provide great pain relief and avoid some of the 'spontaneous drainage' (where the breast channels up to the skin to relieve inflammatory debris that is a byproduct of the extensive inflammation involved in GM.
Other than that - GM cells should be visible to your pathologist, without a 6 week wait. I don't understand that delay...also most cases of GM are completely sterile, no known bacteria of fungus found (the cause of almost all human infection)...GM is therefore most often considered and autoimmune condition of unknown origin.
Be careful with the core biopsies...the punch biopsies, anything at all invasive, and certainly localized surgery (other than guided drainings done very gently)...I have been reading the posts here from the outset, and from my own experience, can tell you that unless a full mastectomy is performed (many of our members seem to have relief after this), avoid any possible surgeries...the tissues don't like it and it seems to provoke further disease.
Contact:
https://depts.washington.edu/gim/faculty/profiles/mlaya
Mary Laya
206 598-4958, 206 598-5500
Box 354765
Associate Professor, Dept. of Medicine/Div. of General Internal Medicine
UWMC-Roosevelt, Women's Health Care Center
FAX: 206 598-8957
Vmail: 206 598-4958
***@****
Good luck to you and your wife...if she wants to share her feelings when she is feeling better, we are here for her.
JoJo
CMbabys has given you great advice, history. As she has mentioned, you can read lots of information in this forum, albeit not organized in the best fashion, unfortunately.
My advice at this point, and I believe that you and your wife have done everything correctly to date...my advice at this point is to have your specialist, the one suggesting this new treatment course to contact the current worldwide specialist that I know of, for a telephone or electronic communication and consultation. I believe she will do both as she seems genuinely interested in dealing with all cases and helping us out as a patient group - incredibly generous of her. Anyway, once you have done this...and even if this is not successful, I think at some point with GM, you just have to trust your own gut, (or your wife does), as each case is different, and move forward with some treatment to relieve your wife's suffering.
I do not know if your wife currently has draining areas from the affected breast, open sinuses? Often there will be large collections of debris visible on ultrasound with GM and if you have a radiologist, carefully, under ultrasound, 'drain away' some of this inflammatory debris, it will often provide great pain relief and avoid some of the 'spontaneous drainage' (where the breast channels up to the skin to relieve inflammatory debris that is a byproduct of the extensive inflammation involved in GM.
Other than that - GM cells should be visible to your pathologist, without a 6 week wait. I don't understand that delay...also most cases of GM are completely sterile, no known bacteria of fungus found (the cause of almost all human infection)...GM is therefore most often considered and autoimmune condition of unknown origin.
Be careful with the core biopsies...the punch biopsies, anything at all invasive, and certainly localized surgery (other than guided drainings done very gently)...I have been reading the posts here from the outset, and from my own experience, can tell you that unless a full mastectomy is performed (many of our members seem to have relief after this), avoid any possible surgeries...the tissues don't like it and it seems to provoke further disease.
Contact:
https://depts.washington.edu/gim/faculty/profiles/mlaya
Mary Laya
206 598-4958, 206 598-5500
Box 354765
Associate Professor, Dept. of Medicine/Div. of General Internal Medicine
UWMC-Roosevelt, Women's Health Care Center
FAX: 206 598-8957
Vmail: 206 598-4958
***@****
Good luck to you and your wife...if she wants to share her feelings when she is feeling better, we are here for her.
JoJo
Dear all,
My wife's second bipsies were benign and we are now awaiting microbacterial reports which may take 6 weeks (they are culturing some tissue).
In the meantime, the doctor has proposed something which he says is experimental, so I wondered if anyone had any thoughts/similar experiences. He wants to try oestrogen blockade treatment - low does tamoxifen and also zloadex injections to stop the breast producing milk which could help the healing process...
We would appreciate any thoughts about this...
My wife's second bipsies were benign and we are now awaiting microbacterial reports which may take 6 weeks (they are culturing some tissue).
In the meantime, the doctor has proposed something which he says is experimental, so I wondered if anyone had any thoughts/similar experiences. He wants to try oestrogen blockade treatment - low does tamoxifen and also zloadex injections to stop the breast producing milk which could help the healing process...
We would appreciate any thoughts about this...
Thanks for much for replying to me - it is much appreciated. That is great advice for me, thanks. This forum seems invaluable in having support and also keeping up-to-date with possible solutions etc...
I'm sorry that you and your wife are going through this and to say unfortunately "welcome to the club" seems to be appropriate for what is going on. I would say yes to a biopsy, you need to know a definitive diagnosis, my MD was able to say it is definitely not cancer/it is definitely IGM, I think that you can't rest assured until knowing that.
This being said, do not let them cut, never let them cut unless that cut is a final decision to have a total mastectomy with all breast tissue removed. It seems that any time you cut, and for me any time any trauma, including needles entered my breasts, it just made them more angry.
That is the only medical advice I can share, everyone has to make their own decisions on what they think is right for them and their family. I did 2 rounds of steroids, the first time it helped, the second time it didn't, and it may have been that first round of prednisone that brought the disease on to my other breast (you have a high chance of recurrence once you wean off, come to find out). I have not tried methotextrate, to me the drug seems too strong, other people have tried it with sucess. I have not tried diet changes, others have with sucess. All things that you can read about if you go through the posts.
I finally got to the decision of surrender/control and began to plan for a mastectomy and cut this disease right out of my life when things then finally seemed to simmer down and my breasts all of a sudden seemed to "get better," if there is such a thing with this disease; but time will tell, so for right now I am enjoying life without this disease being such a main focus in it.
You clearly are a supportive husband as you are doing your own research. My advice to you, just be there. Let her grieve because essentially she has lost her breasts, and all the feelings of femininity that go along with them, her life is forever changed. The pain is something you can't even imagine, hard to believe that breasts can hurt as much as this disease makes them, and the emotional pain that this disease brings. It is heartbreaking, I am sure that I am not alone in this. It is lonely because no one really understands, they ask questions and are concerned but really you are alone, even with a loving husband's support you are alone, except for the network of fellow IGM sufferers out there. Just keep being there.
I wish you both love and future health and hope that this disease does not wreak the havoc in you and your wife's life as it has in mine.
This being said, do not let them cut, never let them cut unless that cut is a final decision to have a total mastectomy with all breast tissue removed. It seems that any time you cut, and for me any time any trauma, including needles entered my breasts, it just made them more angry.
That is the only medical advice I can share, everyone has to make their own decisions on what they think is right for them and their family. I did 2 rounds of steroids, the first time it helped, the second time it didn't, and it may have been that first round of prednisone that brought the disease on to my other breast (you have a high chance of recurrence once you wean off, come to find out). I have not tried methotextrate, to me the drug seems too strong, other people have tried it with sucess. I have not tried diet changes, others have with sucess. All things that you can read about if you go through the posts.
I finally got to the decision of surrender/control and began to plan for a mastectomy and cut this disease right out of my life when things then finally seemed to simmer down and my breasts all of a sudden seemed to "get better," if there is such a thing with this disease; but time will tell, so for right now I am enjoying life without this disease being such a main focus in it.
You clearly are a supportive husband as you are doing your own research. My advice to you, just be there. Let her grieve because essentially she has lost her breasts, and all the feelings of femininity that go along with them, her life is forever changed. The pain is something you can't even imagine, hard to believe that breasts can hurt as much as this disease makes them, and the emotional pain that this disease brings. It is heartbreaking, I am sure that I am not alone in this. It is lonely because no one really understands, they ask questions and are concerned but really you are alone, even with a loving husband's support you are alone, except for the network of fellow IGM sufferers out there. Just keep being there.
I wish you both love and future health and hope that this disease does not wreak the havoc in you and your wife's life as it has in mine.
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