Another new member - please welcome them

[JoJo45]

Hi. I am 39 year's old and I too was diagnosed with Granulomatous Mastitis in January of '2010. I have had many needle asperations and eventually ended up having to have surgery done in December of '2009. This is when they diagnosed me with having this disease. I am awaiting to see another doctor for a second opinioin. I just can't believe that there so little research on this disease. I am currently starting to suffer with tenderness again in my right breast after only healing completely in March from the surgery I had on both my breasts in December. There has to be help out there somewhere. I too would looove to see a support group for us women who suffer with this disease. I agree, it is very hard to stay positive when you are in sooo much agony.

[JoJo45]

Hi Twig:

Welcome to our group.

Most of us here know exactly what you are going through.

Please post any questions or thoughts.  There is likely also a lot of info in the past discussions you may find helpful.

Anyway, you are not alone...I know it is scary to say the least but we can support you here.

Jo

[JoJo45]

Here is Twig's full post from her profile:  Much of it sounds very familar...Twig I am posting here as most in the group will read it here, while they may not go to your profile...I hope you don't mind - JO

Hi. I am a 39 year old mother of 2. I developed GM in November of '2008, but did not get a diagnosis until January of '2010. Throughout all of this time I have had mammograms, ultrasounds, several aspirations, biopsies and eventually surgery. I started with a lump in my ... [More] right breast and they did a mammogram on it, but it was inconclusive. They then did ultrasounds and said that it was cysts...therefore I had several aspirations. This did not solve the problem the lump always came back within weeks. Then I developed a lump in my left breast too. Then my right breast started getting tender and turning pink and hot to the touch and I had fevers. I went to the doctors, AGAIN, and they told me I had a skin infection and gave me oral antibiotics. Did nothing for it. I went back and they gave me more antibiotics through intervenous for a couple of days. Did nothing again for this problem. By this time the skin on my right breast resembled the skin on an orange and had a large ***** head sitting just below the skin. They put me on the highest for of intervenous antibiotic that they could for 7 days. I mean this stuff just about burnt the veins out of my arms. It did nothing also. To make a loooong story shorter, the "cyst" or so they called it, broke and I was oooozing puss all over the place and did I mention the agony I wne through for weeks with this thing before it broke. I couldn't wear a bra, nothing!! Anyways, they figured that the only way to get this thing healed...which they really didn't know what it was...was to remove it and clean it up. I have surgery on the 21st of December '2009.  I got my diagnosis the first part of January. Soooo, here I am. The surgery itself was o.k. My left breast healed up pretty good, but the bad side took until March to fully heal. The public health nurse was literally squatting puss out of me for months and try to make it get better. A couple of days ago, I found another lump in right breast again. It is tender and I am scared to death pnce again that this thing is rearing its ugly head. I am suppose to be on a waiting list to go to another breast surgeon for a second opinioin, but surprise surprise I haven't heard a word from them yet. This is just a shortened down version of my whole nightmare. It is nice to hear from other women who are going through the same thing I am. This is sooo new..it is scarey. My doctor told me after surgery that she was fully prepared to have to tell me I have full blown breast cancer. That is scaaarey....I have such mixed emotions to this disease. I mean I am glad it's not cancer, but how much does one reeeally know about it?!! Love to hear from all you ladies out there that may have a few words of wisdom to share!! Thanks!!

[Miriamkh]

Hi Twig,

I have been through a very similar nightmare. So sorry you are going through this right now. We will try to help in any way we can- our advice and knowledge in this forum is sometimes more than the doctors know- which is scary.

Miriam

[Twig71]

Thanks, Miriam. Yes, it is very scary. Any views on the drug methotrexate? I am having another flare up right now and I am trying to get an aspiration done on it for some relief. I was given the option of Prednison, but I declined it. Was wondering if anyone on here is taking methotrexate and what they might have to say about it/side effects/etc. Looove to hear from anyone one this!!

[lillkagri]

Hello :-))

Im Lill,  28 year old from Norway. Got diagnosed with GM in february this year.  Im on methotrexate now, going on my third week now. It have not had any good effect on my breast, its still very inflamed og opend. But they said Metho dossent start to work after 4 weeks or later.So i guess I just have to wait and see.  The side effects is not many but I feel like I got the influnenza some days. I take it once pr week (sundays)
I hope you will get better soon and that U will have good effect on methotrexate.
Best wishes from Lill

[JoJo45]

Hi Twig - in addition to Lill on methotrexate, another active member here Amy669 has been on the drug for some time.  They will be good contacts for you.

Check out the post 'Treatment with Methotrexate Alone' just below this discussion.  You will find much information there - article on this drug use for GM, and notes from those on the drug as they progress through treatment.

I think you will find this helpful.

Jo

[WLD]

Hi Twig,
I’m WLD 30yrs old mother of 3 & it will be a yr in August that ive had GM. After 3 surgeries & being diagnosed with GM on both breast… I decided to have both breast removed. I had surgery on June 11, 2010 a double mastectomy with immediate reconstructive surgery. I will have a 5th surgery in a month… my implant will be put in. So far everything looks good, No infections & everyday i feel stronger. We are all Tuff Cookies.
I just wanna let you know you are not alone. This is a gr8 source of support.  

[Twig71]

Hi:

I hope you are doing better. I am interested in methotrexate. I am still concerned with the fact that it is a cancer drug....I don't know, guess it just gives me the willies thinking about it is all. I am interested in how you are dealing with the drug/side effects and also if you feel that the drug is doing your breast any good. Will be looking forward to your reports on it.

Twig

[Miriamkh]

I worry about it being a cancer drug, too. It has well-known side effects including the increased rate of developing cancer at a later time. But, when faced with extreme options, some people on the forum feel it is the right choice for them over total excision; and prednisone is pretty scary too! There really need to be more choices when dealing with this disease.

I chose to consult several reputable alternative medicine pracitioners and have had really good results. But, I know that is not for everyone.

Miriam

[Amy669]

Welcome to the group, Twig.  I have written a lot about my experiences with taking prednisone and methotrexate at the same time and most of my entries are under the heading "treatment with methotrexate alone - have you seen this article?"

Things are going very well so far with the tapering (I have been on 15 mg of prednisone for one week).  I don't want to jinx anything by saying that.  On and off, the tapering was really unpleasent (heart palpitations, faintness, dizziness, feeling of panic attack approaching, feeling of being pulled down, sinking).  Lately, I have not been having a problem.  (Note: I have been on prednisone for 8 months!)  

The methotraxate was causing me side effects in the beginning (I have described them in detail previously) but I no longer have any symptoms.  My rheumologist halved my dose 3 weeks ago, maybe that's why.

I rarely have sensations in the breast, however the breast is lumpy.  There is no pain with pressure.  The scars are still very much present (the least of my worries).

As for the other breast in which I developed mastitis - that infection has completely gone away as well as the enlarged nodules above the nipple I mentioned.

It's just a waiting game.  Somebody in this forum (I forget who) said that every time they went under 20 mg of prednisone, the GM came back.  That's what it's all about.  I wait and watch and make no assumptions.

Miriam - wonderful to hear your good report.

[lillkagri]

Hello :-)

Sorry for late reply, I have bin away this weekend and no laptop. How are you doing? Any better?
Metho is a canserdrug, but in lower doses it is used for ppl with revmathologic illness and psoriassis with very good effect. I know a woman who said here life got so mutch better after she started with the metho since  she had so mutch pains in here bones. So in mild doses I think Metho can be a very good cure. If it works for the GM I really dont know yet, but it seems like Amy has good effects on it with the prednisone.  
Today Im starting my week nr 4 on metho, the sideeeffects is not huge I think, but I feel a bit ill the first day and Im taking it before bedtime so I have bin sleeping after taking the medicin.  The doc said we will not see any effects before after a month going on metho, so Im hoping to see results soon.  I got GM in the left breast and Im fed up as all the rest of us I guess...
Have you discussed with your doc about going on metho?  If this is not working for me I will have surgery as WLD. This illness is taking to mutch of my life at the moment.
Hope everybody is feeling a bit better.
Have a nice week ! :-)

Lill

[Twig71]

Hi,
Right at this moment I could really see why WLD had to do what she did. I feel soooo discouraged and down-hearted. I went today to see this new surgeon and he has totally ignored the fact that I have been diagnosed with GM and he is treating me as though we don't know what the problem is. I thought I was through with the ultrasound waiting games, but apparently not. He says I have a mass measuring 4x4cms. in my right breast. He thinks it is hard, but needs an ultrasound to make the decision final. He says if it's soft then he will aspirate it. If it is hard...he wants to do surgery and remove it and send it away for testing. Like, huh? I just don't get it?!!! I tried talking to him about this being GM and he just blew it off. He's acting as though he has to find out what the problem is all over again. I am sooooo over all that. I know the problem and it's there in black and white for him to see, so why is he acting this way? God that feels good to get off of my chest...no pun intended.
Just don't know what route to take from here, but this is just soooo not working for me.
Like I said, times like this and I can reeeeally see why WLD chose the route that she did. I see that road coming towards me now and it seems to becoming clearer and clearer. Sad isn't it?!!

[JoJo45]

Hi Twig I understand this is dark, sad time for you and I am sorry that this surgeon was so obviously inappropriate in his care of you.

You already have a diagnosis.  You already have a doctor who has been treating you for some time - so my question is why do you need to do anything with this doctor...can you not move back to the first doctor for care, and even perhaps seek a third opinion.  Not even sure that today's visit would count as an opinion.

Can I help you network to find someone?  I am sincere in this offer and have the time to assist.

I do believe the new mass needs to be investigated but that would seemingly be able to be done by ultrasound, and other less invasive means than excision, particularly given your long diagnosis and testing history...

Don't give up - sounds like you ran in to a jerk - most of us have during our care process.  Don't let him get you down.  What he did was not right and I would take the ultrasound but do not believe you need to have him perform surgery when you are not comfortable with either his knowledge level or approach.

I don't see why we can't find you another caregiver or you can at least revert to your doctor who has been treating you thus far.

Keep you chin up -

Jo  

[lillkagri]

Hello !

I agree with jojo, what a jerk !  You should print out some info about IGM and show to your doc, and seek help with a new doc. Since there is not so many of us who got GM I think you should be sent to a spesialist in a good hospital.
I was going to a small hospital in my hometown and they finaly sent me to the best hospital in norway. It was they who desiced that I could try methotrexate.
I really wanted them to take out the  just the mass and see if it would heal, but my doc in Oslo said that its impossible that it would heal since it so inflamed. It was either take the hole breast of or try methotrexate or sterioids. The last option Im not keen on at all. I sometimes wish I could take the breast of and start on a fresh start, but I guess I must try the metho first... The docs was most keen on doing that, even tho I wish I could get rid of the GM today and operate the breast off.
Lill.

[Twig71]

Hi Ladies,

Well, to answer your question Jo about why see another doctor. The surgeon who was seeing me before and got the diagnosis for me is no longer at the hospital that I have to go to...he moved away. Therefore, my family doctor is trying me with the only surgeon that is at this hospital at this time. She was suppose to be getting me an appointment with a lady surgeon who specializes in breast issues, but I never heard a word from her office for an appointment and now here I am with a flare up and so she is sending me to this....I don't even know what to call him. This lady surgeon is about 400 km away from where I live, so I guess she must be on high demand or something.
Thank you soooo much ladies for lending me a listening ear. My husband right now isn't being all that understanding about this. I tried talking to him and explaining my fears and not wanting to be cut open all time and maybe for no good reason. He just says that I'm not the only person in the world with health problems and that I am worrying too much about things. But I am the one who has to suffer. I am the one who has to take medications. I am the one who has to be cut open, and I am the one who is being deformed little by little. It is true that to have true compassion one must have gone through what the person has to feel it. I know you ladies have and are. It is comforting to know that I can vent to someone who understands and I can lean on someone who has walked in my shoes. Thank you a million times over. I am sooooo glad I have found this group!! God Bless you all!!!

Twig

[lillkagri]

Hello :-)

I live in Norway, its a very small country and not a lots of big hospital.. but when I got GM I took a plane to the capital, about 300 km and got the fligth for free since the docs in my hometown hospital could not help me. I dont know how it is in your country but I think u should go to a bigger hospital and see a the best expert in your country. This is so rare , and I think this is interesting to the docs to see. I have had loads of professors and docs looking at me, and there has bin taking photos of me that will me used for teaching in med school.

This is not a small thing ! Its very rare and a horrible illness for woman in our best age.  We need to get more info about GM, so we can help others who gets it later.  I get mad when I hear about ppl who thinks GM is not a problem. There is so many nigths I have bin in bed not sleeping because of pains. This has messed up my hole life. Playing with kids, doing sports, consentrations, work etc...

I think you can say to your husband that this is not a normal illness. In Norway there has bin 5 cases of GM, and I read on the internet that there has bin only about 200-300 ppl i the hole world with GM. That is very few. No wonder why we get scared, and there is no right treatment for us dossent help. We need all the support we can get !

I wish all of us the best. Im so glad I have this support group !!  

Going on a summer hollyday tomorrow, so I wount be in this forum every day.

Take care, and have a lovely summer.