Aa
5 Months Post-Op and doing well!
Hello everyone :)
A Lot has happened since I posted last, and I want to share with you my GM story and how it's all worked out. (Long post ahead).
My first bout of GM was at the end of 2006 to early 2007. I had no idea what was happening, and neither did the doctors or surgeons. After the first spontaneous "explosion", they started doing surgical drainings, looking for cysts and, finally, dismissing me. The last time I saw the general surgeon, his words to me were, and I quote: "Well, at least when it blows up and drains it feels better, right? The exit in this office is to the right." UNBELIEVABLE!
Not everyone in my life was supportive, but most were, even if they couldn't understand or *see* what was happening to me. My husband was very supportive, and that helped me so much.
I got increasingly worse with pain, "explosions", constant high fevers and progressive debilitation. I was so run down I also caught every virus, cold and flu going around, and my life became very closed-in and small.
But God is good! One of the men in our church is a highly specialized Gyno-pelvic reconstructionist and a head Professor at St. Louis University. He recommended I see his friend, another top professor and head of the Dept. of Gynecolological and Breast Oncology, and got me in to see him immediately, rather than the 6 month usual wait for an appointment. This was December, 2009.
This Dr. knew exactly what it was by my description, having seen one other case in his 30 yr. practice. From there we tried various treatments--more antibiotics, surgeries, even Tamoxifen to see if blocking Estrogen to the breasts might help. Nothing worked. I have trouble with steroids, and decided not to take them since they didn't seem to produce a definitive "cure", and my Dr. didn't want to use methotrexate at all. We decided that we would try to wait this out for a few years, until after menopause.
In July/Aug., 2010 I had another "flare up", and was scheduled for surgical draining the next day. When he went in, *nothing* came out, in spite of the obvious abscess. He removed a large mass of sclerotic tissue, the sinus and other strange stuff, and we finally began to talk about mastectomy.
By this time I was so sick that I was non-functional. Although he really hated taking such a drastic step, we were out of options, and "waiting it out" was no longer possible.
Because of this group and the information so generously provided by other women with this disease, I made the decision to proceed with a bilateral mastectomy, not sparing the nip*les. This choice isn't for everyone, and it's no picnic, believe me. But, I had no life, and had spent the past several months sick, useless and in pain. After 3+ years of messing with this craziness, I just wanted some kind of life!
I had the surgery on Nov. 1, 2010. They sent everything to a pathologist who, after looking at it, immediately sent it to another pathologist who specializes in breast tissue. Now, here comes the amazing part:
Present in both breasts were 4 separate pre-cancerous conditions, and several types of pre-cancerous cells. (COMPLETELY UNRELATED TO THE IGM!) The question of me getting breast cancer was not "IF", but "WHEN". I had stopped getting mammograms because of the painful lesions, so I would never have known until it was too late. The Lord used this rare, bizarre disease to save my life. He is amazing!
It's been a long road to recovery, both from the months of debilitation and from the mastectomy, but I'm much better and stronger now. My husband and I have decided not to proceed with any reconstruction. With my history I would just be asking for trouble. Also, I just want to be "done" with all of this, and can't stand the thought of more surgery. Prosthetics are "different", and I'm getting used to my new normal. Although this was not an easy decision, and definitely isn't for everyone, it was the best decision for me, and I do not regret it even a tiny bit.
I do wonder about possible other immune system issues, but only time will tell. I've started getting a life back, and I'm grateful.
I continue to pray for all of you. I hate this disease and what it does to us, and I will continue researching, reading and trying to connect the dots. This group is invaluable--for information, yes, but also for support. I've said before that, unfortunately, WE are the experts when it comes to this disease, and I urge everyone to continue sharing your experiences.
May God bless each of you,
Leane
A Lot has happened since I posted last, and I want to share with you my GM story and how it's all worked out. (Long post ahead).
My first bout of GM was at the end of 2006 to early 2007. I had no idea what was happening, and neither did the doctors or surgeons. After the first spontaneous "explosion", they started doing surgical drainings, looking for cysts and, finally, dismissing me. The last time I saw the general surgeon, his words to me were, and I quote: "Well, at least when it blows up and drains it feels better, right? The exit in this office is to the right." UNBELIEVABLE!
Not everyone in my life was supportive, but most were, even if they couldn't understand or *see* what was happening to me. My husband was very supportive, and that helped me so much.
I got increasingly worse with pain, "explosions", constant high fevers and progressive debilitation. I was so run down I also caught every virus, cold and flu going around, and my life became very closed-in and small.
But God is good! One of the men in our church is a highly specialized Gyno-pelvic reconstructionist and a head Professor at St. Louis University. He recommended I see his friend, another top professor and head of the Dept. of Gynecolological and Breast Oncology, and got me in to see him immediately, rather than the 6 month usual wait for an appointment. This was December, 2009.
This Dr. knew exactly what it was by my description, having seen one other case in his 30 yr. practice. From there we tried various treatments--more antibiotics, surgeries, even Tamoxifen to see if blocking Estrogen to the breasts might help. Nothing worked. I have trouble with steroids, and decided not to take them since they didn't seem to produce a definitive "cure", and my Dr. didn't want to use methotrexate at all. We decided that we would try to wait this out for a few years, until after menopause.
In July/Aug., 2010 I had another "flare up", and was scheduled for surgical draining the next day. When he went in, *nothing* came out, in spite of the obvious abscess. He removed a large mass of sclerotic tissue, the sinus and other strange stuff, and we finally began to talk about mastectomy.
By this time I was so sick that I was non-functional. Although he really hated taking such a drastic step, we were out of options, and "waiting it out" was no longer possible.
Because of this group and the information so generously provided by other women with this disease, I made the decision to proceed with a bilateral mastectomy, not sparing the nip*les. This choice isn't for everyone, and it's no picnic, believe me. But, I had no life, and had spent the past several months sick, useless and in pain. After 3+ years of messing with this craziness, I just wanted some kind of life!
I had the surgery on Nov. 1, 2010. They sent everything to a pathologist who, after looking at it, immediately sent it to another pathologist who specializes in breast tissue. Now, here comes the amazing part:
Present in both breasts were 4 separate pre-cancerous conditions, and several types of pre-cancerous cells. (COMPLETELY UNRELATED TO THE IGM!) The question of me getting breast cancer was not "IF", but "WHEN". I had stopped getting mammograms because of the painful lesions, so I would never have known until it was too late. The Lord used this rare, bizarre disease to save my life. He is amazing!
It's been a long road to recovery, both from the months of debilitation and from the mastectomy, but I'm much better and stronger now. My husband and I have decided not to proceed with any reconstruction. With my history I would just be asking for trouble. Also, I just want to be "done" with all of this, and can't stand the thought of more surgery. Prosthetics are "different", and I'm getting used to my new normal. Although this was not an easy decision, and definitely isn't for everyone, it was the best decision for me, and I do not regret it even a tiny bit.
I do wonder about possible other immune system issues, but only time will tell. I've started getting a life back, and I'm grateful.
I continue to pray for all of you. I hate this disease and what it does to us, and I will continue researching, reading and trying to connect the dots. This group is invaluable--for information, yes, but also for support. I've said before that, unfortunately, WE are the experts when it comes to this disease, and I urge everyone to continue sharing your experiences.
May God bless each of you,
Leane
Agree with Jo... My first surgical biopsy was a standard and I didn't have GM prior... it was from that surgery that my surgical site never healed... and thus after months of confused doctors, was diagnosed with GM.
Since then I (foolishly almost) pushed for another surgery, make the margins bigger now that we know what I have. I was denied and denied, offered up a mastectomy; no one will touch it (because of my age, mid twenties).
Finally had another biopsy in 11/10 - that surgery was done "correctly" (I always swore up and down that SOMETHING went wrong in my original surgery; come to find, the surgeon never did internal stitches - the site according to standard operations; should have had internal stitching and drains - neither. This was confirmed by my new surgeon after reading the notes) turns out; even with proper measures; the tract is still here and of course, the GM.
Luckily (I use that loosely), my GM site and tract is just from my nipple to outer breast (about 5cms maybe) and seems to not spread and only that area - the outlet is my original surgery incision. I've been told I'm "lucky" since my GM isn't huge or all over...
Since then I (foolishly almost) pushed for another surgery, make the margins bigger now that we know what I have. I was denied and denied, offered up a mastectomy; no one will touch it (because of my age, mid twenties).
Finally had another biopsy in 11/10 - that surgery was done "correctly" (I always swore up and down that SOMETHING went wrong in my original surgery; come to find, the surgeon never did internal stitches - the site according to standard operations; should have had internal stitching and drains - neither. This was confirmed by my new surgeon after reading the notes) turns out; even with proper measures; the tract is still here and of course, the GM.
Luckily (I use that loosely), my GM site and tract is just from my nipple to outer breast (about 5cms maybe) and seems to not spread and only that area - the outlet is my original surgery incision. I've been told I'm "lucky" since my GM isn't huge or all over...
it seems that excisional biopsies need to be avoided -- if it is safe to do so
they seem to cause the deep channels to form and the GM to go crazy!
I think we all need to emphasize moderate, non-invasive care where possible for our breasts - I have just heard too many stories that are the same - as soon as there is an excision site, the sinusing and channeling start, and often this sets of a cycle that is not limited
I know sometimes they are necessary for safety, but the doctors need to be really prudent here - I am not sure enough of them believe or appreciate this is auto-immune and any activity in the breast during a flare is provoking...
just my two cents
Jo
they seem to cause the deep channels to form and the GM to go crazy!
I think we all need to emphasize moderate, non-invasive care where possible for our breasts - I have just heard too many stories that are the same - as soon as there is an excision site, the sinusing and channeling start, and often this sets of a cycle that is not limited
I know sometimes they are necessary for safety, but the doctors need to be really prudent here - I am not sure enough of them believe or appreciate this is auto-immune and any activity in the breast during a flare is provoking...
just my two cents
Jo
I know it's scary, and I know you're tired. But you can do this, you really can.
There was no history of BC in my family. I was so focused on dealing with the GM and the pain and illness that comes with it, I didn't even want to consider anything else, especially if it was going to cause me pain or might possibly lead to something else. I didn't even want to deal with Pap smears or yearly physicals.
But, if you consider the possibility of adding cancer to everything you're already dealing with, and what it would be like to add more surgery, radiation and chemo into the mix...
Please, stay current on your screenings--all of them!
Leane
There was no history of BC in my family. I was so focused on dealing with the GM and the pain and illness that comes with it, I didn't even want to consider anything else, especially if it was going to cause me pain or might possibly lead to something else. I didn't even want to deal with Pap smears or yearly physicals.
But, if you consider the possibility of adding cancer to everything you're already dealing with, and what it would be like to add more surgery, radiation and chemo into the mix...
Please, stay current on your screenings--all of them!
Leane
I feel so afraid that now that I have so much scarring, and clips that were inserted that there is no chance that I will have a normal mammogram ever again. Which means they will always see something, and then they will want to do a biopsy...and the cycle goes on and on. I think that the biopsies were what set off the abscesses. The worst of the biopsies made a huge fistula that drained constantly for months before finally closing off. Then, on ultrasound, we could see a channel of fluid that led directly from the closed-off wound to my first abscess...which then led to three more abscesses that were clearly connected to each other. SO...I REALLY don't want to ever have another biopsy...and it seems inevitable that if I have further screening that I will end up needing another one. I know that it is important...but I just don't know if I can make myself go through with it.
I hope my story encourages each of you to stay current on breast cancer screenings. It isn't easy sometimes, when doctors don't want to push MRIs and Ultrasounds, because Insurance companies don't want to pay for them. But most of us have learned that we have to be persistent—even annoying—in order to get the care we need. I did have an Ultrasound or two, but it picked up nothing. MRIs were never approved by my insurance. And nobody, no way, no how, was ever going to get me to squish my poor, hurting, exploding boobs between those tortuous plates again!
The important thing is that we all learn what we can from each other. I hope, if nothing else, my experience illustrates the absolute necessity to PUSH for proper care and testing if necessary. It's hard to do when you're sick, I know. But Don't Quit!
Leane
The important thing is that we all learn what we can from each other. I hope, if nothing else, my experience illustrates the absolute necessity to PUSH for proper care and testing if necessary. It's hard to do when you're sick, I know. But Don't Quit!
Leane
Hi Leane:
I am so happy to hear from you and to hear that things have worked out in their own way.
I really appreciate your sharing your story -- it is helping other women out there.
I also had to forego mammograms for years when my breast was open and active - it is only now that I am able to get mammograms. Ultrasounds and MRIs were used for screening for cancer during my worst time with this disease.
I think all with this disease in their history have to be especially vigilant with their cancer screening as chronic inflammation, regardless of where it is in the body is a known cause of cancer.
I wish you healing and that all of this is behind you.
Jo
I am so happy to hear from you and to hear that things have worked out in their own way.
I really appreciate your sharing your story -- it is helping other women out there.
I also had to forego mammograms for years when my breast was open and active - it is only now that I am able to get mammograms. Ultrasounds and MRIs were used for screening for cancer during my worst time with this disease.
I think all with this disease in their history have to be especially vigilant with their cancer screening as chronic inflammation, regardless of where it is in the body is a known cause of cancer.
I wish you healing and that all of this is behind you.
Jo
Wow you are so strong what a huge decision to make. I am so glad you are doing better. God bless!
Congratulations! The price you pain was huge. But as you said, "God is good." I am glad that you are at peace. You surely would not have survived cancer treatments. It is a reminder to us to keep getting the girls checked out...even if it is uncomfortable.
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