How Do You Go About Finding A Specialist?

[horseshoes]

My husband has a condition which is quite rare in women and extremely rare in men. He has been treated since March with antibiotics and steroids, but to no avail. Hes had 4 stays n hospital on a drip. It has flared up yet again and yesterday he went to see his GP, who by her own admission said when he consulted her, she had never heard of the condition; she said he really need to see a specialist! He thought he'd being seen a specialist in the breast clinic in our local hospital. The doctor he has been seeing there said there's a reluctance to operate as it can lead to complications.
Does anyone here know how we would find a specialist in his condition?

P.S. please do not think theres ANY criticism of NHS here because they've been marvellous.

[dannyk13]

His GP should be able to refer him to one.

[Sqad]

What IS this condition?

[horseshoes]

What his GP said, Danny, is that whoever he's seeing in the hospital should be referring him. Very likely his GP doesn't know of one. We just feel very stuck in the middle.

[horseshoes]

Squad. It's Granulomatus Mastitis and its horrible.

[Sqad]

Very rare.......

I agree operation would be quite a risk.

I would have thought that seeing the in-patient treatment that he is having, he is already under a Specialist.

I suppose you are asking for a second opinion.

What area are you in?

[horseshoes]

Çan i just ask you please Sqad, why an operation would be so risky; that's not been explained to him.

We're in North Wales, so Chester, Liverpool, Birmingham or Manchester are our nearest large cities.

[Sqad]

The operation would have to be done under a steroid cover so as not to exacerbate the granulomatous process. As secondary infection is ever present in this condition and with steroids covering the operation, then secondary infection in the wound would be an ever present worry for the surgeon, with the prospect of spread into the chest wall.
Assessing the pros and cons of the operation would be quite a gamble with either curative powers at best or complete disaster at worse.
All the centres that you mention would have good breasts units with experienced specialists.
if you really want a second opinion, although i cannot see it would be a medical advantage, Google the breast units, find the name of the Consultant and armed with this knowledge approach your GP for a referral.
I would suggest Liverpool.

[Sqad]

https://www.rlbuht.nhs.uk/departments/medical-specialisms/breast-unit/

[horseshoes]

Thanks for this info Sqad, also for the link. I'm not even sure if it IS a second opinion we need; its just that as it's so rare, that they might not haven't expertise to treat it. I know this may sound insulting but it's not in any way meant to be; just need assurance that the team at our hospital will have the capabilities.

So does this Granula eventually just give up and go away?

[Sqad]

"So does this Granula eventually just give up and go away?"

Granuloma........it might go away but don't count on it.

i don't know the hospital OR your specialist, but if he were my husband, in the same situation as you, i would want a second opinion.

[horseshoes]

Sqad, just a mention to you that my friend with endometrial cancer is STILL with us! A few weeks ago, she made another trip to the UK from South Africa and I met up with her and her husband again. All treament has now stopped as there is no longer any effect or benefit. She did say to me, that in a way it's a relief as her whole life had become dominated by rounds of chemo and radio therapy. She says it is what it is and she and everyone is prepared. After I met up with her, they went off to Switzerland and had amazing week there. She sent me some lovely photos from the Jungfrau. We were in the middle of the heatwave and they were in the snow!

[Sqad]

Thanks horseshoes,that is very sad and i think that there is a time, whatever the disorder to say, "enough is enough" or que sera sera.....particularly with malignant disease.
Remember Granulomatous mastitis ISN'T cancer.

[horseshoes]

Thanks Sqad x

[Scarlett]

Hi Horseshoes, I know this may seem irrelevant, but if the cause of Granulomatus Mastitis is auto-immune, you could look at ways of dealing with that, such as Amy Myers books, and the Wahl's protocol. I was diagnosed with ulcerative colitis in 1999, an incurable and lifelong disease. Through fasting and taking a York test (blood test to find what food I was intolerant to) I have somehow managed to erradicate my UC completely. The specialist didn't believe I had ever had it, until I showed him my old hospital records, and the colonoscopy I had, they sent me away as my records showed a "normal" colon. Even colitis in remission would show scarring. Mine showed nothing. Previously I had had pancolitis- TOTAL colitis and been on steroids etc as nothing worked, for many years. By fasting I believe I re-set my immune system, and old immune cells were cleared away, and new ones made. It didn't happen overnight, but gradually I just got better. Turns out I was putting the wrong oil (and too much of it) in my engine.

[LadyCG]

Can I just second what Scarlett has said. Fasting will re-set your immune system after just 72 hours of nothing but water. It will also re-set your metabolism if you have trouble losing weight, even on a very restricted diet.

Fasting has been shown to reverse inflammatory disease and eat away benign and even malignant tumours.

It is worth doing some research into and personally I have found Joel Fuhrman's books on the subject of fasting and eating for health absolutely fascinating.