What to expect? When to get more help?

[clarep34]

Hi, I have just been diagnosed with GM, a relief after thinking it was Infammatory Breast Cancer.  My consultant (based in London) doesn't want to give me any treatment (surgery or steroids), but feels we should leave it and see what happens.  I keep reading that people have lesions - does this mean you skin opens up?  If so, should I expect that?  Sounds terrible and very worrying.

Is there anything else I should look out for?

I am 35, and a mother for two small children.  I live in London.

[MargaretAnn1977]

Just wanted to welcome you to the forum. I'm fairly new here as well, although you can see me all over the forum, incessantly asking questions :). I've been dealing with my case for 6 months but am still in the beginning stages of care for GM, since I wasn't diagnosed until December. It's rough, trying to figure things out. I hope your case resolves quickly!

[JoJo45]

I have had pain down my whole left side - my arm, my hand, my back, up my neck and in to my face since being diagnosed - there are other women on this site that have also reported the same arthritis type symptoms as well

unfortunately, no one seems to understand why that would occur medically - but I know for me, it is certainly a systemic illness - I have inflammation in my spine as well which they can't figure out, but certainly shows up on tests - and my whole body gets very inflamed before a recurrence of GM

anyway, the point is you are not crazy -

I would make sure you have been tested for TB - simple skin test - your GP can do it - can rarely be a cause of GM...just to be safe (TB is another granuloma based disease), and you will need this test anyway before you begin any of the strong anti-inflammatory drugs as they suppress your immune system, so very important to rule out any underlying infections before you start...

Jo

[clarep34]

Thank you so much for replying.  I really do appreciate and read your posts many times.  I think I am slightly in denial about the severity of this disease - even though as I sit here I am in pain.  My boob hurts, my hand hurts (feels like arthritus??) and my chest hursts ( feels like a mild chest infection?)......I guess it's all related, but you're right I don't think anyone understands including my doctor.   I don't even want to contact him right now, as I know I am meant to wait it out!   I am going to my GP (general practitioner) tomorrow for blood tests to make sure nothing else is going on.Thank you once again.  Just having someone to contact as helped massively.  xxx Take care

[JoJo45]

Hi Clare -

if your consultant has seen a few cases, he is a world expert - most doctors have not personally seen that many - so I think you should be reassured by that - it is still a very rare disease of unknown origin and therefore there is no defined treatment course, and there are a lot of frustrations and treatment questions that come up because of that - I think it is as much a mind game as anything else - unfortunately the doctors don't know much as you know - there is no reassurance to be had

if you have any symptoms you are not comfortable with - go to see your doctor again - a red area on your breast is common with this, but I can't tell you what it might mean for you or not - but you should not hesitate to see your doctor and have him tell you - if you feel he is too dismissive, find another doctor that will be more caring and suit you better

I also think you should line up a rheumatologist - they are the doctors that treat this disease with drugs if indicated, and you don't want to be scrambling around with that if you do get quite ill

is your doctor affiliated with a comprehensive breast care centre (I don't know the medical setup in the UK)?, somewhere where you can have your entire care centred

I think it is completely fair for you to think about seeing a counsellor because this disease is full of questions with no sure answers and the associated stress with that - it can range from a limited, self-resolving experience to a very serious disease and trying personal experience and the treatment options can be extensive and invasive - personally I have found it tremendously helpful to see a medical social worker throughout this process and it has really helped - when I have considered mastectomy, had recurrences...etc., tried to make serious treatment decisions in a vacuum of information

you will also likely find that as no one (friends, family, coworkers) have any idea about what you are going through, some levels of ignorance and lack of proper caring or reponse around you - a counsellor really helps with that too

so I wish you the best and think you should be very assertive about your care - but assume the best outcome and not the worst for now

sorry if this sounds preachy, don't mean it to be

it is a tough disease to have and I am sorry that you are going through this - I am sorry that we all are

there are other women on this group from UK - maybe you can compare notes on treating doctors?

Jo

[flogw]

As Jo Jo says, lot of people have different experiences with this disease - and I'm one of the lucky ones.

Like you, I  had a mass of inflammation, on Xray/ultrasound, no abcesses. My consultant (in Cambridge) also advised expectant management (leaving it alone and seeing what happens basically) - that was about 4 years ago. It did go away within a few months, and I have been fine since.

I must admit, having read what I could after my initial diagnosis (this forum wasn't around then); I was all prepared for steroids, or methotrexate, or whatever, and was slightly taken aback when when he suggested waiting and seeing, but very glad that he did.

I hope that this is reassuring!!! - and that you have the same good fortune.

Please do post again and let us know how you are going on...

Flo

[clarep34]

Thank you for your replies.  I really appreciate it, especially as there is such little information out there!

I am doing ok, but I am very worried.  My consultant doesn't seem at all concerned, but he also said in his career of twenty years he has only seen a handful of cases of GM.  I get the general impression he thinks it will all go away if left alone.  In the ultrasounds that I have had there was not abscesses, just a big mass of inflamation. Is this normal for it to start this way?

I had (another) a core biopsy on Thursday (they want to make sure it wasn't IBC), and I am still very sore.  There is also a patch of red skin that has come up, but it doesn't hurt particulary - do you think this could be a start of a lesion?

Any advice would be greatly appreciated.

Thank you once again, and I hope we all get better soon.

xx

[JoJo45]

Hi Clare -

sorry that you are having this to deal with, but glad it is not breast cancer for you

some of us have the inflammation get pretty intense, I think the theory is an autoimmune response is somehow triggered (possibly hormonal or prolactin imbalance), or other causative factor, which leads to an immune response in your body - cells attack your own tissue within your breast and this then causes cellular debris to form (pus), inside the breast in the form of abcesses - often this debris collects and at some point forms a channel to the outside of the breast and breaks through the skin to empty - you will read about this as 'sinuses' in the medical literature

in my own experience, I can tell when this is about to happen as my breast becomes very red and purple in that area, the skin is thinning, and my pain becomes intense due to the pressure and inflammation

I have personally had really good result with having the abcesses drained under ultrasound guidance, before they break through - another member here, Auntie bq also had success with this treatment

if the channel does open through your skin, it can remain open for some time and continue draining - yes this is pretty awful to have happen, unfortunately some women have multiple channels at once, or they will have a whole area of their breast slough off the skin and drain

HOWEVER not everyone has this course of symptoms - so I wouldn't worry about it until you do have this happen

what I would suggest is that you keep monitoring your breast and see if you notice changes in the skin texture or colour and at that point you might want to consult your doctor to see if you have a collection of debris and if it can be drained before breaking through

some women seem to have more solid masses that never drain, others have self-resolving cases that never open up, they just seem to heal without intervention - so let's hope that is you for now - expectant management - that is what your surgeon is advising

if you do end up with sinuses, there is much info here about how to deal with that, from a number of different women, with a number of different approaches, so we can support you, and while is it not nice, it can be managed

welcome to the forum and let us know any questions

Jo

[Red11483]

Hi I am a 27 year old mom of a 3 year old in Atlanta GA that was just diagnosed last month. Like u I dont have any open lesions. I just saw a breast specialist this week for the1st time and am going for a second biopsy monday. My doc is doing more testing before trying methotrexate. She wants to avoid surgery as long as possible since most women have poor wound healing with GM. Everyone is different and it seems to b trial and error so if you feel uncomfortable with your care try a second opinion. Your doctor.should suport u on it especially with something rare like GM. I am.finding This group very helpful. Good luck!