Newly diagnosed and considering mastectomy

I am so glad to find this group! I am 35 years old and have three children. I first developed symptoms six weeks ago, dec. 2012. I live in Denmark. None of the doctors who have seen me have seen GM before. The initial differential diagnoses were mastitis and inflammatory breast cancer. I have been bounced around from doctor to doctor, and nobody can really agree on how to treat me. The pain is incapacitating, and I am exhausted. I have been treated with three rounds of antibiotics, to no avail. I had one round of prednisolone, which reduced soft tissue swelling for a few weeks. I have just had a prednisolone injection last week, with he same results. The swelling is coming back though. The first breast surgeons I saw refused to treat me on the grounds that they didn't know what they were dealing with. They sent me on to various internal medicine specialists to rule out an array of systemic illnesses. Once these were ruled out and GM confirmed, these doctors sent me on to another group of breast specialists who have treated a few cases of GM in Denmark. They have all told me that this is chronic and cannot be cured , and that the symptoms can be controlled with long-term prednisolone and methotrexate treatment. If I take the drugs, I can experience serious side effects and will never really be cured, from what I understand. I cannot stand to live this way, and I do not want to poison my body with toxic drugs. My GP says that the one guaranteed way to make this go away is a mastectomy. I am so desperate, that I will gladly have one ASAP! Has anyone had success with a mastectomy? How much worse can having a mastectomy be when I am already in agony because of GM? Please help, I want my life back!

[AKVCOR]

Correction. My symptoms started more than six weeks ago, a week before Christmas. The pain and pain meds are doing a number on my brain. Akvcor

[leanek]

I struggled with this disease for over 3 years. I had a bilateral mastectomy in November of 2010 and have been trouble-free since. I chose not to have any reconstruction and wear prosthetics. I know I made the right choice for me, and am so grateful to be well now!

I hope this helps,
Leane

[AKVCOR]

Thank you, Leane. It does help! I'm glad that you've had no problems since. How painful was the mastectomy recovery compared to the GM? How soon were you able to resume your normal activities?

[leanek]

The mastectomy hurt--no doubt about that! My recovery was slow, but I had been sick for a long time, so was pretty debilitated going in. Most of the women I know who have had mastectomy are fairly back to normal within a few weeks.  The thing about the mastectomy pain is that I knew it would end, where as with the GM, there was no such promise.

Hoping the best for you!
Leane

[samantha1977]

Hi, I had symptoms from nov 2012 & diagnosed in Dec (same story as you masstitis then cancer misdiagnosis). I'm also 35 with 2 girls in Sydney Australia. Being chronic it's hard to deal with never feeling well. I have found a brilliant Breast physician in Sydney who not only treats me physically but sees me weekly and calms me down emotionally- knowing you have some support really helps. We decided not to do steroids for the side affects you mentioned & if its not a cure I'm not interested. We aspirste the abcesses every week & try antibiotics. I'm also taking tumeric tablets to help with the inflammation naturally. You can also get small ice packs to fit inside your bra which is a god send. I'm hoping I'm one of those cases that this disease will leave within the year. But if it goes past a year I would consider mastectomy & reconstruction.

[SoundOfWhite]

Wow Samantha!
You sound like you have a great Dr! mine has all forgotten all about me :(]
All i was saying when i had the worst bout of inflammation was that i just
wanted them chopped off!
So strange about the turmeric tablets as my mum was a natropath and she
suggested i use alot of turmeric in my cooking i didnt know they had turmeric tablets! I also read it in a book called "fast living slow ageing (aging)".And cold ice packs are a god send + a real good supportive bra.
Cant wait to chat after the weekend :0

[AKVCOR]

Thanks your input, Samantha. I just had an abscess drained on Friday, and the doctor told me that I can expect it to fill up again and that more abscesses may form now that one has formed. Even with local anesthesia, it was a very painful procedure. I don't think that I can handle it every week. The Dr. said this may go away in eight months, yet I am loath to spend so much time so sick. I will definitely try the turmeric. I hope you get well sooner rather than later.

[samantha1977]

I've been getting the abscesses drained for the last 5 weeks and I find if I have to Codeine paracetamol forte before the appt then rest all day while still taking the forte every 6 hours  it gets me through. As hard as it is, rest & being kind to yourself is the best way through. Don't think about the future as its an unknown with this disease - just wake up in the morning, see how you feel after a shower and then do whatever you feel you can. It's mind over matter with this one. Send me an email if you would like to keep in regular contact to keep each others spirits up - sounds like our disease has simultaneous timing!