New here and diagonsed with GM with abscess

[Mum2006]

Hello everyone, 
        I'm so glad I found this group have been feeling left out all this while. I'm 30 yrs old married and I have a 4 yrs 10 mths old daughter and I'm from Dubai. Have just been diagonsed with GM with abscess after almost 6 mths. It actually started as Fibrodenomas in April 10'.. That settled down with Evening Primrose and Vit E. 
       In Sept 10' one day I got to see this horrifying looking lump above the areola which was tender, sore and dark in colour. I visited a General Surgeon after 8 days (thinking it would disappear on its on in between). With 2 ultrasounds, 1 FNAC and a mammogram (BIRAD 3-4) it showed up as a large abscess which did not resolve with antibiotics. I had to undergo a wide excision biopsy in October 10' which revealed the case as Lympocytic Mastopathy (not much info on the internet). 
      One week later i developed a small collection of fluid on the lower quadrant of the breast. The surgeon made a small cut and let the fluid out saying it was a small collection due to the excision. Since then there is hardness in the area of excision and my entire breast looks as if there has been a massive earthquake on my breast :) with all colourful patches and the scar.
        In Feb 2011 developed another tiny bump 2 cms above the excision. Had an FNAC done and the culture showed no growth (culture never showed any growth for any of the abscess). Few days later my scar (from earlier excision) had two openings which was oozing clear fluid. 
       Had been very patient all this while and having a very supportive husband a daughter helped me through all of this. Meanwhile visited a Breast Specialist and took a second opinion on that excision done in Oct 10'. It showed GM with abscess which the earlier Pathologist termed as Lympocytic mastopathy.
      In March 11' again 1 week before my periods I developed another mass on the lower quadrant below the excision. Very painful (as always) , FNAC done. The very next day that area bursted out in the shower with clot of blood and lots of bleeding. Right now its been covered with a bandage and waiting for the FNAC results. So sorry for this ellaborate information.
     Right now I'm unable to decide on whether I should opt for Cortisone which the Breast Specialist prescribed for 2 weeks or just wait for inflammation to go on its own :(... 
     Hearing about all the side effects and long term effects of steroids I'm not really prepared to go through more effects elsewhere on my body.. Have gone through most of the posts on this forum and I really admire all the patience and courage that all you ladies have... Somewhere deep within I'm loosing it now... And hearing about steroids is making it more difficult for me to decide.
     Thank you so much for hearing me out and please need an advice on whether I should go for the steroids.
   

[Miriamkh]

Hi Mum,

I consulted several different alternative practitioners when the GM was flaring up. I have posted in detail before about using castor oil packs directly on the abscess/inflamed areas, which worked to relieve my pain and usually brought the pus up to the surface. If you look through my old posts from last year I go into detail about that.
The herbal company I have used is called Premier Research Labs. They have a phone number you can call and consult with someone about what to take. They are familiar with our disease. I have taken a high-quality raw aloe product they sell, along with colustrum, omega 3's, another product of theirs called Nucleotides which boosts the immune system and has a lot of different herbs in it. I don't know what helped for sure- I think maybe my hormones calmed down eventually after pregnancy, which helped the most. I think this GM is all about our female hormones. I also continue seeing an acupuncturist who also does other alternative treatments on me- she works with a lot of my emotional issues, stress, etc, which she believes are directly connected to manifesting physical illness.
Hope this helps. Nutrition-wise, an anti-inflammatory diet (as Jo has said) is best, if you can stick to it. Dairy and all meats (including chicken) are considered inflammatory as they are too high in omega-6's. Fresh fruits, veggies, whole grains, and other minimally processed foods are best. I have had a hard time sticking to this, but we do eat organic in my family and as many unprocessed foods as possible.

[Mum2006]

@Jo -- thank you so much for that feedback.... I've been taking Evening Primrose oil supplement (reduces PMS) and just began with Fish oil supplement abt 3000 mg to begin with. Hopefully it helps in reducing the inflammation (fingers crossed) because I'm not going for the steroids yet. Meanwhile there is a small abscess area developing on the upper quadrant above the surgery scar again and may have to go for a drain in a day or two. This one has developed very soon since the last one. A gap of 10 dys approximately. Haven't got any 3 rd opnion results yet on the slides. Hope you are doing well !! Take care.

@ Miriam- hi there... I'm sure its more of a trouble to go through all this especially while you are pregnant... I'm glad it has subsided for you since then and hopefully things will get better for you in future too. 
       I'm really open for any kind of natural medicines before going in for steroids. However I've stopped homoepathy for the past 2 days since it has started pain in my left breast too and I'm worried this is not the beginning for the left one :(( .. I've just added Fish oil supplement to my Evening Primrose oil and Vit E supplements. Trust me I've been surfing a lot these days to find out cure other than steroids (my eyes are already popping out :)) .... I'll be seeing the Homoepath this week for change of medicines. Are you taking any herbs or medicines right now and would you like to share their names here ?? I'll probably have something more to research then :)) Thanx for your feedback Miriam.... Take care and hope you feel better..


Mum2006.

[Miriamkh]

Hi Mum,

I too am a mother to a four year old. I developed GM while pregnant with my second child, exactly two years ago- it just occurred to me that a few days ago was my anniversary.
I understand your concern about both methotrexate and prednisone. I was only offered prednisone initially because I was pregnant at the time. I was on it for five months, and while I too felt great on it initially (like Pandora 1962) I hated it after a while, and chose to come off it while taking lots of herbs as guided by herbalists/naturopaths. My GM has slowly died down and gone away, although I can't call myself "cured"- I still have red areas on my breast and they are sore- and I had the flu last month, and while I had a fever, my breast felt like it was on fire. Weird sensation. I think homeopathy is worth a try, but if you are open to alternative medicine, you may want to explore all options, including immune-system boosting herbs and nutrition.

Miriam

[JoJo45]

Hi Mum

I take 4000 mg of Omega 3 daily (fish oil source - very high grade, no toxins) as well as EPA.  I am also completely gluten free (have been for years) and lactose free or extremely low lactose.  I take full-chain protein shakes each morning and a greens plus supplement.

I avoid the most inflammatory of foods and try to follow a mostly alkaline diet as well.

I do feel better with this diet and supplements.

Jo

[Mum2006]

Thank you Jo and Eluriajen for that valuable information... I completely understand that at the end its a personal decision whether one should be undergoing any kind of treament and not getting pressurised by anyone (which right now my Breast specialist is insisting :)) .... 
      What I like about a forum (including this one) is that different people with different backgrounds coming from different parts of the world are trying to battle out against a disease which is comman for everyone (with different symptoms). The discussions happening here helps each one of us to understand whats happening with thier twins (breasts :)). 
       We can actually correalate and be lil confident when we trying to figure out a treatment plan with our Doctors. At times Doctors do not mention any side effects any medication can cause unless we ask. Not always the case though. 
       After joining this forum I'm more confident about this disease and my body and with the research I have a better understanding of what may work and what may not.. And with all the information about everybody's treatment, symptoms, side effects and emotions I'm trying to make myself  strong and I'm sure I'll get the support which I need from this forum :) ...
       Right now I have decided to hold on to the steroids and try the anti inflammatory diet and supplements along with excercise and yoga to help myself from within :) .. If nothing works and things getting more horrifying (like those bursting lumps in the shower) I'll opt for steroids. 
      Meanwhile I forgot to mention that the previous Histopath who diagonsed the condition as Lymphocytic Mastopathy is very keen on her results and differing from GM which the results from my second opinion came through. She wants me to go for a third opinion with those biopsy slides. 
So amongst this battle of diagnosis I'll try to fight my own battle of overcoming pains and aches and upside down emotions :)))) .... Has anyone tried  Evening Primrose Oil and Fish oil supplements (reduces inflammation) and  noticed any change?? Please inform would be very helpful.. 
      Thanx once again ladies and all the best to each one of us here fighting this disease each day. I love this forum :) n happy to have joined it. 
     Jo thank you so much for taking the intiative of starting this forum :))).
Take care everybody and will keep everyone updated :) ..

[eluriajen]

Hello. I just wanted to say that I can completely understand your concerns about taking the steroids. I agree that what to do (or not to do) is a completely personal decision. I also think that while we are all dealing with the same thing, each of us is also dealing with a version of this that is specific to us...so what works for one person might not work for others.

I have been through the whole range of painful symptoms, emotions, and stress that go along with this disease. My symptoms started in March of last year with a huge, avocado-sized lump, and have varied over the last year, ranging from painful, changable lums to several abscesses that have burst open, and everything in between. I believe that taking progestin-only birth control pills while I was breast-feeding contributed to the fact that I now have this condition. I would say that fact weighs in heavily on my decision about what to do now. When I was younger, I didn't really think about the repercussions of any medicatons or drugs that I took. And now...well, I feel so differently now. The symptoms that I have had with this disease are so painful, and so upsetting, but in deciding if I should pursure further treatments, I try to compare my pain with the possible side effects of other treatments. Steroids have a lot of negative side effects, and methotraxate, in my opinion, is just very frightening. I read the list of drug warnings for methotrexate, and the possible outcomes terrify me. Also, somewhere along the way I read a study about IGM where in 50 % of the cases, over an average of 14.5 months, the IGM went away on its own. So...my resulting thought process was that I could suck it up for that long. No matter how painful it was, I could suck it up and take the pain for 14.5 months, or even longer, if in the end I still had both of my breasts, I was healthy,  this went away, and I hadn't damaged my body taking any more drugs. So...that was my decision. Anyway, I have been "sucking it up" without any treatments for several months now. My last abscess burst through in January, and it was the worst of all. It was like all of my previous abscesses, plus this new one, had grown together and formed a big mushy soft spot in my breast - the whole side of my breast was mush. I was horrified. And now, 2 months later, that tissue has healed. It has been 2 months now since I have had an abscess, and 12 months since all of this started. SO....I am cautiously optimistic. I definitely still have lumps in there. They hurt and grow and change sometimes. I have swollen lymph nodes in the side of my neck still. But my energy is much better most of the time, and the swelling and pain in my joints is better. I am afraid to get too excited, though. I have been taking vitamin D. Has anyone else had their levels measured throughout this process, or tried supplementing with this?

I guess what I want to say is that, in my opinion, choosing to NOT have any kind of treatment is a valid choice too. The steroids and the methotrexate have serious side effects. I understand the pain. And the fear. It is so scary when this is happenning. I also think that either because of the pain, or the exhaustion, or something else, there are times with this disease when it is hard to have mental clarity. And it hurts so much, and you can feel so afraid, that you would be willing to do anything to make it stop. At least that is how I have felt at different times. Anyway, you should think it through, and make the choice that you feel comfortable with. But if you don't want to do anything, don't let anyone pressure you into doing somthing you don't want to do. It's your body. I felt like everyone from doctors to family members pressured me to pursue different treatments...but in the end, I had to make a choice that I could be confident in. So that would be my advice: take your time, read, study, and make your own decision.

[JoJo45]

Hi - welcome to Mum and Mess

Mum, corticosteriods were the gold standard in treating GM until about 2008.  They do seem to work well for most people, however there is often a flare-up when the dose is reduced - the doctors then started to use methotrexate in combination with the steriods, at least in the last stages of treatment, to lessen the rate of recurrence once the medications were tapered.

I myself did do a couple of rounds of prednisone.  It did work to settle my breast quite quickly and dramatically.  I however had great difficulty weaning off of the prednisone (I did not add methotrexate) - and therefore ended up on a low dose for many months.  I HATED the feeling of taking prednisone and the side effects, which in my case, was a severe anxiety attack when the dose was lowered, along with many other physical and mental symptoms - corticosteriods shut down your entire adrenal system, which runs many important funtions in the body and mind, and when you withdraw the corticosteriod, sometimes the adrenal gland does not kick in appropriately, which can cause a myriad of chemical imbalances in the brain and body.  But people use them, because they work for serious diseases.

The side effects vary by person.

I have had recurrences since stopping the corticosteriod.  However my episodes seem to be decreasing in severity.  

I am very pro having any areas drained by needle as soon as they are evident.  This has worked well for me in managing episodes.

I have discussed with my caregivers and researched at length and should I have another severe recurrence, I will take methotrexate.  I also do not rule out prednisone, while I hated it, it did settle my breast when I desperately needed relief - it slowed the inflammatory process and made me feel better.

From what I can gather, just reading stories here for awhile, the more excisions one has, the worse off the breast - I think cutting needs to be avoided unless absolutely necessary as it seems to be when the inflammation and sinusing and draining becomes complicated.

How to treat this disease is a personal decision, but from the description of your breast at the moment, it would seem you desperately need to halt the process, reset if you can.  Corticosteriod and methotrexate are powerful drugs, but they can work.  

I wish you healing and relief, Jo

[Mum2006]

@Pandora I'm really happy to know that the steroids are working for you.. You certainly sound very positive and strong and its an encouragement for me and all the others. All the best girl....
&Red- so sorry to hear that your Dad has to go through all the side effects.. Wishing you and your family a good health. All the best for your treatment further. Keep us updated on your treatment too... May be somebody can correlate to it.

[Mum2006]

Thank you so much Red and Pandora for your support and kind words.. At the same time feeling sorry for each one of us going through all this. Each one of us here has a new battle to fight everyday.. Right now I think its just going to be trial n experimenting to see what works n what doesn't ... Meanwhile spoke to the earlier histopath who declared it as lymphocytic mastopathy and not GM and she wants me to resend the slides for a third opinion... So this way everday something new comes up and then new confusions, new emotions and new decisions (which I hate errrrrr).... To add on to this parents and friends around creating a panic (thinking "u've got a tumor n cancer n blah blah blah").. Worst thing is that you can't even zip thier mouths up. Getting difficult to explain these kind of species around without sounding rude.. I wonder how all of you handle these discussions or questionaires... However I do understand thier concern towards me but what I fail to explain it to them is that " guys I'm already struggling with new lumps, new pains, home management and everybody's suggestion of changing doctors" ....
     Sorry for venting guys !!!! I think I'm sending the slides in for a third opinion..... Hoping someone somewhere finds a guaranteed cure to put an end for all of us suffering here.

[Pandora1962]

Oh girl, I so hear myself in your post. My GM was caught fairly early by comparison. With so little information out there it is difficult to have confidence. I find it much easier now that I have this group. Your body is in distress right now. It is frightening when the sores grow overnight. Your rupture sounded painful and messy. Unfortunately, I am coming to the conclusion that this is a malfunction of our autoimmune system. That means our body is not going to heal the way it has in the past. Now it is fighting against itself instead of helping itself. I decided to use the prednisone for my families sake. I have taken 4 days worth. I feel fabulous. I had no idea how crappy I was feeling. I think so many of the aches and pains that I thought normal are really not.  My wound is finally healing after 2 months of weeping. So, if the only thing that happens on steroids is that my wounds heal from round one...I am thankful. I understand that this is likely a chronic condition. I understand that if the symptoms return we may have to try something different. I do feel better knowing I have sisters that have gone before me. I hope this is helpful. We are sick. We need help. If we can heal, we might be able to find a way to manage this without all the strong medications. Keep reading...I think there really is hope.

[Red11483]

I too am not a fan of the idea of long term steroid use due to seeing my father on them my entire life. There are some newer studies out about using methotrexate but it too has its own list of side effects. I think there aren't a lot of options unfortunately and everyone's experiences though similiar there is no one size fits all treatment. I hope you find a treatment that works for you. I am still exploring options too I see a rheumatologost next weekto discuss them further. This group is extremely helpful and has been a blessing to me.

[Mum2006]

@one_hot_mess --  hi... I'm so sorry dear I didn't want to scare anyone off the steroids .. I'm so sorry once again if my post has scared you :( .. Myself I'm so scared, confused, indecisive n etc.. You name the emotions and I have it :( .... Many doctors prescribe Steroids (i think thats the only remedy that works for GM) . I just didnt wanna regret later of not trying anything else before steroids. Eventually I think I'll have to opt for it too. But yes if the homoepathy helps me to reduce the inflammation in anyways I'll be keeping everyone updated.... Hope you feel better soon and happy recovery.

[one_hot_mess]

Oh goodness.  I started the steroids yesterday and don't have any idea what to expect.  My dose seems to be low so maybe it will be okay...

[Mum2006]

Sorry I forgot to mention that I also started using Homoepathic medicine for reducing the inflammation. I was hoping to wait untill it shows some effect before starting on the steroids. Am I making the right decision?? I'm so scared of steroids :( ..