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Any new developments or progress for anyone?

Hi - we have a couple of new members who have posted in the breast cancer forum GM thread.

Does anyone have any questions or need support from the group...I know a couple of you are in serious distress and having to make treatment decisions - please let us know if there is anything we can do.

Jo
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Avatar universal
Last time I was as the hospital my ultrasound doc found fluid in the inflameted mass, its a huge hard mass where there is no fluid, but this time she found some who are going in to channels in the mass. She wanted to try and get some of it out but the doc who is in charge refused to do it. Very frustrating for me. I had a hope that they could do something.
Now the IGM is not very activ, not mutch fluid coming out but there is a big hard and painfull lump ( over half of my breast)  Its ok to live with as long as I dont have to move a lot and use my hand.... ( that is not very mutch to do then)
I dont care if I get a scar if they do surgery on me,.. I just want this to go away.

Does anyone have an idea whats the reason of gm? I know is ideopathic but I always think if there was something I could do to get rid of this. I see my self as a very healthy person, very active and jused to go loads to the gym and hiking the mouintain.I eat healthy .. but I am a smoker and I have loads of allergy to some drugs (as in medicin), food and other things.

Going to Oslo on monday and Im bringing me information I got from you in this group. (universety hospital in the capital)

Take care and thaks for replying.
Lill
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Avatar universal
I don't understand why they will not simply drain, do an ultrasound guided (by radiologist) draining of your breast.

I found that you need to get rid of that fluid - or it make a drain in your skin spontaneously.  It also relieves the pressure, as you can imagine, and provides pain relief.

This was the most effective treatment for me - making sure they abcesses were able to drain.

Other members have also had the same experience.  

I would suggest asking your doctor why they are not arranging a very careful draining of theh fluid in your breast. -

Jo
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The new doc said the same, its just predisone that will help for me... they dont want to do anything else. Im still waiting for a letter from the hospital in Olso, but it seems they all agree that sterioids are the only way to go.
My ultralound doc said there probably is a loads of fluid in the breast and she talked about open it and see whats in there of fluid, but the old fashing doc refused. It seems like they wants me to be punished because I dont want to go on the prednisone.
The good thing today was that the new doc is sending me to a Rheumatologist... what test are u others with GM taking there?
Glad to hear from u again. Lill
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Avatar universal
Hi Lill:

I don't know what to say.  I too hated Prednisone and refused to go on it after two terrible experiences with it.  

There are other drugs for those that can't tolerate Prednisone (and there are many people that can't - so don't feel badly) - can your new doctor review these options with you?

Thinking of you - Jo
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I'm still waiting for my apointment in the capital if Norway. The old doc has given me up, she thinks its wrong of me to not want to go on the predsinole...  If wish it was so easy to just take a pill but for me the sideaffects is to bad for me. Therese must be something else to cure me? Going back to the hospital tomorrow, going to s new doc, and i know he is 100 % for steriods.....       I almost want to cancel the visit.
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Avatar universal
Thankfully you seem to finally have a physician who is listening and knows something, I am so happy for you and you must be re-assured.  ( I copied your note here so more could see- hope you don't mind)

Much of what you have written is what I was told here in Toronto, Canada.  They also believe it is autoimmune and do not want to provoke with any types of surgeries...however they do still believe in prednisone here as an agent to stop the immune response (prednisone shuts down your adrenal gland, and therefore your immune system).  Methotrexate, is often used as a chemotherapy drug, it shrinks tumours - it has been shown to shrink IGM masses (tumours).

At one time it was discussed to possibly put a 'drain' in my breast, rather than for me to keep going in for drainings to the breast centre, or have my breast open up itself.  But I think it was in discussion, nothing they have ever done before, and my breast settled before we went that route.

I am really sorry to hear about your other aches and pains.  I have had severe lower back pain since about a year in to this, and I am not sure if they are related.  Others on here have posted of this too...

I have had a number of MRIs - frankly I think they do them here for two reasons 1) to try to establish what IGM looks like on MRI, because I don't think they know and 2) as a secondary screening process to ultrasound (Obviously can't be in the mammogram machine during a flare - omg) - I generally have one every three months.

My understanding is that rheumatologists are generally involved in the treatement of IGM, along with breast surgeons, because the drugs used to try to shut the process down are the drugs they are used to prescribing...prednisone, methotrexate - most other docs don't want to to go near them, because they are serious drugs.  I look at it like a team, my family doc, my breast surgeon and radiologist and care team from the breast centre and my rheumatologist.

And I am very lucky I live in Canada, because I could not ever have afforded all of the care and tests I have received.  So I hope your insurance keeps coming through for you.

Good luck with the MRI - Jo


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Avatar universal
by Mzbowtie, 23 hours ago

JoJo45

Just a quick update: I went for my second opinion and the second breast surgeon wondered why I was not given an MRI.  I did not have the answer to this of course.  She also advised me that she never prescribes Prednisone for her patients because it only treats the inflamation (inflammation) and once you are off of it, it returns again.  She never discussed Methotrexate as an option either.  She explained to me that the biopsy surgery that the first breast surgeon wanted to perform on me was not the proper course of action either.  She explained it like this.  Why would you only take some of the mastitis out and then seal up the body over an abcess (abscess) that responds like infection even though it isn't?  You wouldn't and the reason is that without a large area to drain, the body would create a larger abcess (abscess).  So, she said if/when we go to surgery I should expect to leave with ports.  She said it is a bigger pain and hassle but that this type of issue needs to heal from the inside or bottom out otherwise it will just continue to happen.  So I left waiting to hear if my insurance would approve the MRI.  They did as of last Friday so now I am waiting to schedule the appointment.  The weirdest thing about that is that I have to have the MRI exactly ten days after the first day of my menstrual cycle.  Otherwise I risk getting a false positive reading due to hormones.  On a side note, I have begun experiencing arthritic-like pain in all the joints of my body.  I do not know if it is a side effect of what was left of the Prednisone or coming off of it.  It also may be another "auto immune" disease.  Who knows.  All I know is that I am in severe pain and move like I had the work out of my life and am sore the next day.  Sadly, no work out.  The pain in my hands is bad enough that I some times am unable to apply pressure to a pen in order to write or hold the object.  I am seeing my primary care physician for this later today and am assuming I will be referred to a Rheumatologist.  I just found it odd that some women on here say they are being treated for their IGM by a Rheumatologist.  That is why I mentioned this in case it may some how be related.

Thanks for listening everyone!
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