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1822062 tn?1317279766

Is surgery the only option?

Hi everyone,
I've been reading this forum for quite a while,and finding it so moving. Only now do I have a courage to post something.
I'm a 25 yr old mother of 2,and since 2months ago been having this lump on my right breast. I have done cell sample test and the result is 'suspicious' of GM. A doc prescribed me on 10mg of Prednisone for 2weeks and since there is no improvement, he said I should stop. I've been going back and forth to a private and a government hospital. The private hospital is saying there's no other option but surgery, during which they will send a sample for test and if it really is GM they'll cut half of my breast, but if it is cancer, they'll cut the entire breast. However, the government hospital, which in my country always take ages to get any results or appointments, is saying if the result of the needle biopsy we did turns out cancer, they will remove the lump but if it is just GM, they will not because they say the lump is too big and the removal would result in something 'cosmetically unacceptable'.
Is surgery really the only option for GM? I don't really know whether mine is GM or IGM. If it is, is there any basis on the doctor's decision to only remove the lump if it is cancer?
19 Responses
1548207 tn?1303454180
f it is GM or igm surgery is not the best option due to poor wound healing associated with GM .I say wait for results before doing any cutting. Keep us updated.
1822062 tn?1317279766
thanks Red11483, looking at the queue for any kind of surgery at the gov hospitals i think i have no choice but to wait. my only concern is if by waiting the disease will spread to my nipple. i dont mind too much having part of my breast removed as long as i have my nipple so i can still breastfeed my baby (or babies in the future)
so far my GM is not very rapidly spreading, i think. and it's not too painful. but i do worry post surgery would be more painful physically and emotionally.
1627204 tn?1302012537
Please do not let them do surgery. There is so much information here if you are willling to dig. Our bodies do not all work the same, but I do believe waiting it out for a while is a good course of action. Try consulting a Rheumatologist. Grandulomatous diseases are an auto immune category....and therefore a good Rheumatologist can treat it. Not all are comfortable with it as it is a rare disease, but PLEASE do not let them butcher you.
1822062 tn?1317279766
Thank you so much. Since my last post, I've been to another hospital and went through another round of check-up, ultrasound and needle biopsy with a new panel of doctors. They are also saying if it's not cancer they will not take it out and start me back on a higher dose of Prednisone. They also told me to stop breastfeeding (I've been breastfeeding for 3years).
Regardless I'm still confused, why would a breast specialist I met before said surgery is the only option and the longer I wait the worse it'll get?
1548207 tn?1303454180
The truth is many doctors have never dealt with GM and there isnt a lot of research so an inexperienced doc might suggest surgery but if they do more research they would know that in the case of GM it can actually make it worse to remove the lump although a masectomy is an option just removing the lump may not be best, I know there was another woman that continued brestfeeding but they may want u to stop due to the meds you could ask them their reasoning.
1822062 tn?1317279766
My next appointment is this Friday bt only if my needle biopsy result is available (and this is the better hospital, 4 states away). I've noticed my lump has grown so big that it is visible even when I'm wearing clothes. But I'm still thankful I dont hv any abscess.
1627204 tn?1302012537
Lump. Abcess. They are all the same to me. Abcesses are lumps that are filled with thick fluid. If your lump is growing that much...it is likely an abcess. I suggest you have him aspirate it and drain the thick fluid out.
Avatar universal
Hi, I'm currently going through this too. My lump developed beginning of Aug/11 which has grown quite big. I've had 2 biopsy's, an xray and most recent, an ultrasound, which found I had an abcess. I've had 3 needles as well for aspiration but a very small amount was retrieved. Since pus started leaking last Wed (in 3 spots, not nipple), my breast has been feeling better. In the last 2 months, I've been on several antibiotic prescriptions. This last one, I think, seems to be helping. Between my first and 2nd biopsy, I developed a fluctuance, they called it and eventually, started to leak pus from that area and from the biopsy site as well. I've been applying polysporin as well, in hopes it will help! My breast is looking better and I'm feeling better about that but the lump is still there. I'm hoping and wishing, like everyone else, that it will get better. Best of luck to you!

Crystal
1822062 tn?1317279766
Oh sorry..what I meant to say was I don't have anythg on the surface of my skin.
Earlier on, before I was diagnosed a doctor did put a long needle into my lump to suck out any fluid, but there was none. Is that considered as aspiration? I don't know...
Recently during ultrasound another doctor also said my lump is a mass or solid, somethg like that.
Anyway it really hurts today, I can hardly stretch my arm upright, which is really bothersome since I'm a teacher and I have to write on boards.
1822062 tn?1317279766
I admire your positivity. I have had pus-like liquid coming out of my nipple, but after a week of antibiotic, it stopped, or maybe it was just less since my breastfeeding daughter continued breastfeeding without complain.
Can you tell me more about this polysporin? I'd really appreciate it.
Avatar universal
Hi there:

I have been reading your posts.

I believe GM is something that can be overcome, although it is a serious disease, and I encourage you to remain positive.

I am however concerned with the level of care you are receiving.  May I ask what country you are located in?

The best thing is that you are receiving care and that your caregivers appear to be screening you very carefully to rule out cancer.  That is good as hopefully when they have thoroughly examined your biopsies, your mind will be at ease that you do not have cancer.

But if you are in fact dealing with GM, the medical community in general does not know much about GM at all (this is why you are getting so many different treatment methods suggested by your doctors should this be GM), and I would suggest that you try to have your ultimate doctor (you seem to be seeing a few), consult a specialist via telephone regarding what your treatment options should be.  You deserve to be treated in the best way possible and I believe appropriate treatment at the outset will have a dramatic effect on your ultimate outcome.

GM can have both solid masses and abcesses involved in its process.  Most believe this is due to a very strong immune reaction in the breast.

So please let us know where you are located and perhaps we can find a doctor experienced in GM care that will speak to your doctor and advise on the current best practices.

Please don't worry too much.  No matter what is happening within your breast, I am sure it can be dealt with and you can then move on with your life.

All of us here have been through something similar and there is hope.  I do know how scary this can be at first, so please be sure to share your feelings - we are here to support you.

Best wishes from Canada, Jo
1822062 tn?1317279766
Thank u, Jo, I'm touched by yr concern.
I am in Malaysia, it is in the South East Asia. Honestly, I've had doubts about how familiar these doctors are about the disease. But then again, I myself have such limited knowledge about this myself, so I'm not really in the position to argue much with them. Joining this forum has taught me more about it than anything else. So please allow me to thank you personally, Jo, for creating the forum board.
Before GM, I have been struggling with hyperthyroidism (Grave's Disease), which has resulted in me going through different kind of drugs for years. I don't really want to have to go through the same process of trial and error, and face all the uncertainties with yet another disease. It's taking its toll not only on  my health but also on my marriage and my life in general. I wish there is a specific fail-proof way to deal with it once and for all. But alas, life is not black and white. Still, thanks again for the advices and support. If GM is a battle I have to fight, there are no other comrades I rather have but you guys (okay, sorry I get carried away n b all dramatic). Let's go get that elusive cure, shall we? :-)
1822062 tn?1317279766
needle biopsy result today-chronic granulomatous mastitis
no surprise there..im actually kinda upset now cos i drove for 3hours right after work n waited in d waiting room for 2hours only to see d doctor for less than 5minutes.
d doc act told me d last research paper ever written on gm in my country was yearssss ago.n he even shared another theory that gm is caused by ciggarete smoke.well,i dont smoke n non of my family members do.
nway,back to steroid,in hope d lump will shrink enuf do a surgery can b done without causing too severe deformity.they can chop evrytg up there n then for all i care.i hate all d wait n uncertainty!
1844398 tn?1318886400
Hello Aini
I'm a mother of 3 and with 29 years old. I had right breast inflammation since June 2010 Dr's treated me with antibiotics for about 5 month and it went away, then in november 2010 the inflammation came back stronger than ever they gave a really high doses of antibiotics I ended up with join inflammation I couldn't move my body for 3 weeks and I was hospitalized for 5 days in december 2010, They did biopsy, mammograms and ultrasound with negative results for cancer and that was when I was diagnostic with GM. They started treating me with high doses of Prednisone since december 2010 and with Methotrexate the lump got a little better but never went away I gain a lot of pounds and a lot of side effects because of the prednisone and I just can't handle the pain no more. I stopped taking prednisone in august because I feel that it wasn't really helping that much. My breast had always drain but I'm in the point that the skin opens and drain even from the sides of my breast causing more pain and wounds that ended most of the times infected and I went to ER one month ago they referred me to a surgeon immediately. I had a surgery Sep 20, 2011 to remove part of that hard tissue (or part of the GM) and one week ago my Dr. checked me and recommend a second surgery because the GM was growing up again so last thursday my Dr. decided to do partial mastectomy surgery, and here I am sitting at my computer looking for answers and to similar cases. It has been so hard and painful process and I'm just at the point after all I have been thru this year I don't mine to have a complete mastectomy, sometimes I think I waited so long, sometimes I think I didn't have the right Dr.'s all I know is that I want to feel good and enjoy life with or without my breast. My kids need me, they need a mom with energy and not a mom that is always taking medications or going to Dr.'s appt every week, I'm just desperate and depression is getting worst.
1822062 tn?1317279766
dear Mily,
sorry to hear bout wat ur going thru.i sound like a whiney baby compared to u.bt wat ur going through is exactly wat i meant by d uncertainties in dealing with dis disease.
no one really take it seriously cos its not life threatening,yet to those who r facing it,its life changing just the same.
hope thgs get better for u..i wish i hv more to say bt i really dont,because i know less bout dis than anyone.bt i really feel u..n i sincerely wish u d best
1832634 tn?1325651318
Dear Aini and all the other ladies out there who are not quite sure how to deal with GM,

I offer you all my support and best wishes to finding the correct medical care that you need.  I can only imagine how scary and frustrating it has been for you to be told one thing after another about what might have caused GM and how best to treat the condition.  

Though I am new to this forum, in the small amount of research I have found about GM or IGM, surgery was listed as one of the worst possible things to do in order to treat the illness.  Jo is much more knowledgeable about this subject.  What she said all makes a great deal of sense.

For me, I want to make sure you all know that I really am here to support you.  I  keep reiterating it because I want to do what I can to actively get the word out about GM to the community.  I am not ashamed of my condition and told everyone I know about what I know about GM yesterday.  They were each thankful that I was open and willing to share such personal information with them.  They also appreciated hearing about a rare health condition that could affect them in some way.  They also offered any support they could to help me.

I hope you will not be ashamed and/or afraid to ask for help from loved ones.  It seems like now is the right time to do it, if you have not been comfortable doing it in the past.

I am a 34 year old single woman who does not have any children.  I was officially diagnosed as having Idiopathic Granulomatous Mastitis on Monday of this week by my breast surgeon.  I currently do not work and live with my retired parents.  My troubles are not even on par to the difficulties most of you have faced.  Because I do not work currently, I have been fortunate to spend time focused on resting and healing my body.  I think that has helped, along with the corticosteroids I have taken for the last 2 weeks.  I feel very lucky each morning when the inflammation goes down and that I can use my left side of my body without hurting myself.

Because of this unique predicament I feel like I am in,  I have felt up to doing research during the last week on GM and other related conditions.  I have checked out numerous books from a university I attended about breast diseases, autoimmune conditions, strengthening the immune system and a bunch of other similar subjects.  I have learned a great deal of information.  The more I learn, the angrier I get that little is still known about Granulomatous Mastitis.  Also from the research I have read, it seems misdiagnosis of GM first as breast cancer and other conditions has appeared to be fairly common.  That is really not right.

It has made me want to help all the others who have GM by speaking up for them.

I found out about and am reading a book called Women and Autoimmune Diseases by Dr. Robert Lahita.  He is a well-known immunologist and medical doctor in New York City.  He did his medical immunology studies at Rockefeller University, also in New York.  I have looked on their website and found their immunology center.  Their research sounds like it might be headed in the right direction.  I am working on a letter to send to one of the medical researchers in charge of their immunology department.

Dr. Lahita said the majority of cases of autoimmune conditions are suffered by women.  He even admitted to not knowing everything about what caused the conditions.  When a doctor can do that, it means a lot - to show he is also human.

They, as well as other research institutions in the US and other countries, need prodding and voices from people who are dealing with GM to tell them about the importance of learning more about how best to treat GM.   Most of the medical field are seen to be men.  They tend to not know a great deal about as many women-related health conditions as those traditionally thought of as "male-oriented" health conditions.

I feel badly for women in the countries like you Aini in Malaysia, where they may not have the proper medical care available and/or the knowledge to treat their patients correctly.  It seems to be placing even bigger burdens on what seems like many young mothers, who are doing the best they can to take care of their children and rest of their families.  That is not right.  That is why it is important to keep staying on top of your care and fighting for the right treatments for you.

If you are able, please do not feel ashamed of your illness and to speak up for yourselves when interacting with all medical professionals.  It seems that is the only way we will be able to get noticed and be taken seriously as having a valid illness that needs proper treatment.  Doctors should be accountable to their patients and to admit when they do not know something.  If you learn anything about GM, you should bring that information with you to appointments to show your doctors.  That might give them ideas about treatments they can try on you.

Since the doctors did not know much if anything about my specific case, I brought my research with me to my last appointment with my breast surgeon.  She appreciated seeing the information.

For possible things you can try on your own to help you feel more sane, I offer the following suggestions:

- Spend at least a little time every day, if you can, to sit, close your eyes and to focus on your breathing.  Though it might sound strange,  that short time can help you relax and help you better focus on your current situation.  I am not a mother, but that has helped me.
It will not cure your having GM, but it just might help you to feel a little better for a short time.

- Listening to your favorite music can help - even a little bit to feel more sane.  Somehow there is something magical about music that can help us to relax and/or to face life's challenges a little better.

-  Being stressed out seems to make health problems worse.  That is why it is important to relax when you can.

-  Sitting down to rub your feet for a few minutes and/or even massaging your hands and fingers can get the circulation moving better throughout the body.  It also can be relaxing. I am learning foot and hand reflexology. There are pressure points throughout the feet and hands that are connected or that affect organs throughout the body.  If you message me, I will be happy to tell you more about it.

- If you can, try to tap a finger or a few fingers near the center of the breast bone above the heart.  My Reiki instructor told me that helps to stimulate the thymus.  That is an important organ that affects the immune system.  It might sound strange.  But if you feel up to it, it is worth trying to help get circulation moving and to try to help strengthen the immune system.  I keep being told how important it is to keep circulation moving more evenly throughout the body - helping the bad go out and the good to come in.
  
As you can tell, I have developed a great passion for speaking up about GM and am not ashamed to admit I have the illness to males and females alike.  I think it is important they all know it exists and a proper diagnosis is vital to getting the correct care.

I also want you to know that I feel brave enough now to tell you my real name.  It is Amanda.  After I told my family and friends that I had the condition earlier this week, I knew it was time for me to be honest and accountable to the new friends I have made in this community and the community at large.

Sorry to have written so much Aini and to the others of you out there.  I hope some of the things I wrote might help.  You are not alone.  We are all here to help each other.

You are all in my prayers and continued positive thoughts.
Take care,
Amanda
1822062 tn?1317279766
Hi Amanda, thanks for your post. Everything you wrote was helpful, just the mere fact that you spent your time writing for this was helpful. I (and I think everyone on this forum) need the exact dose of positivism you're giving out.

I especially agree with you on the fact that we should tell more people about this 'unique' disease. Ever since I have been diagnosed and shared my story, at least 4 of my female relatives and friends had shared with me their stories of mysterious benign breast lumps that they had never told anyone about before.

I'm in a much better state than the last time I posted. The higher dose of prednisone is really helping to reduce the size of my lump, and tremendously helps with the pain. Only problem is I think it is messing up with my hyperthyroid medications, I will need to mention this in my next check up. I'm also having a week off from work, been a while since I had days off besides when I'm going for medical appointments. I'm just gonna put GM behind me and cuddle my babies.

All the best to all of you,lovely ladies..
1832634 tn?1325651318
Dear Aini,

It is wonderful news that you are feeling better today. A positive mindset can make a big difference.  It is hard to think clearly when you are not feeling your best.  I hope you have been cuddling your babies.  They are lucky to have you there to care for them.

I am happy to hear that the higher dose of prednisone is helping you.  It seems, at least from my perspective, that the pain was/is harder to deal with than the lump in my breast.  

Just from the little I know about treatment options for GM and IGM, it seems like doctors keep pushing us to take corticosteroids - Prednisone or Medrol - or else methotrexate. I hope the prednisone isn't making you feel too cooky.  A feeling of mania has been associated with the use of the med.  It sounds like the prednisone might be giving you a "happy high" feeling.  If anything, that is the best kind to have.

I was taking prednisone and felt really cookoo during the week after I started to take it.  Though it and the 2 antibiotics helped to reduce the inflammation in my breast, I made sure to tell my doctor about how I was feeling.  She changed me over to Medrol that same day.  I feel much better on it.   The inflammation has gone down a great deal since then.

Gosh - sorry to hear about the interactions you are having of using your GM meds along with those for for your hyperthyroid condition.  It seems like drug interactions might be a problem each of us might face in a number of ways.  I hope you can talk with your doctor about it and to see if there is/are other meds you can switch to.  The negative interactions seem to be what can make our bodies feel even more out of whack. (At least that is from my perspective.)

I hope you have been able to enjoy your week off from work.  You deserve to put your legs up and to rest whenever you can.  I learned that edema - or swelling of the legs, joints, etc from water retention - is a side effect that can occur while using the corticosteroids.  Please take care.  I put my legs up while I lie down on my couch and watch tv.  It seems to help a bit.

Keep your head up... You are strong and can/will fight this disease.  I know you want to be strong for your kids.

I feel humbled that you told your friends about your condition after you read my post.  I am just an average person who is just trying to do something small to help others. It is good that you and your friends have talked about breast lumps they had.  

Just so you know, I am not a person who was assertive in the past.  I did not tell anyone about health conditions I had because in some way I felt embarrassed.  I eventually gave in and told friends I had epilepsy while I was an adult.  (I have lived with that condition for the last 21 years.)  That helped a great deal to keeping open communication.  Then recently, after I found out I had IGM, I became really upset about the condition.  I decided no matter how much outside of my natural comfort zone it was to speak up about a sensitive condition, especially one that affected my breasts, I knew it was important to take action.

No matter how strange it might feel to speak with your doctor about your condition and treatment options, I suggest you face your fears and speak up for yourself whenever you can.  I am still working on that.  Since our illness is so rare, it makes it even more important to speak up on our behalves to make sure we are getting the correct treatments.

I am still trying to decide whether I want to follow my new rheumatologist's treatment plan of weaning off Medrol while I start using methotrexate.  Using a chemo treatment drug is a scary thought.

I have gone on and on again.  

Just one last thing: I found an outlet to discuss my concerns about GM.  I started a blog on WordPress.com earlier this week.  The address is http://mynewlifewithgm.wordpress.com.  My blog is called Amanda the GM Warrior.
Please message me and I can give you more information about the site.  I am doing it to help educate people about GM and to offer words of inspiration.

Take care of yourself.  Wish you all the best. :)
Avatar universal
Hi Mily:

How are you feeling - how is your breast?

I am concerned from your post that you were feeling so down about the pain, the state of your breast and the lack of doctor knowledge and confidence on how to best deal with your case.

Please let us know how you are doing.

Jo

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