DIABETIC MASTOPATHY
DIABETIC MASTOPATHY I posted an e-mail regarding Diabetic Mastopathy last week after finding out that an earlier reader was diagnosed with the same condition as me!! I was quite surprised as this, I understand, is quite a rare disease. I am , however, quite concerned about what may happen to my breasts themselves - I was incorrectly diagnosed with Breast Cancer in December 2003 and then diagnosed with Diabetic mastopathy in January 04. The lump which is a hard mass was originally only in my right breast but this has now occurred in my left breast (and appears to be bigger than the right). I know, luckily, that breast cancer isn’t likely to occur because of this condition I have, but I do know that because of the mass of lumps I have, that finding any cancerous lumps would prove to be more difficult. I am currently waiting to see the same consultant as last time, but because of this not being very common, wonder what the best course of action would be. The consultant told me last time that he thought it best to leave the lump alone as long as it didn’t increase any more in size and that if it did a mastectomy may have to be done (due to the lumps’ size).
The lady, who also had the same condition wrote to say that she was having her lumps removed (although I know that by reading vaious sites about Diabetic Mastectomy that the lumps are likly to regrow.
If anyone has any information at all I would be grateful to hear from them. I’m sure I will feel much better once I’ve seen the consultant but it’s the waiting that’s the worse thing (at the moment anyway!).
Thanks for reading…
For Sallyvalentine Hi Sally,
I am sorry you haven’t had any replies to your post so would suggest that you either phone the BCC freefone helpline where you can talk to the trained staff about your concerns or you use the BCC Ask the Nurse email service where a breast care nurse will respond to you within 5 days.
The freefone help line number is 0808 800 6000 and open Monday to Friday 9am - 5pm, Saturdays 9am - 2pm.
The link for the Ask the Nurse service can be found on the Home page of the BCC website, just follow the step by step instructions.
Hope this helps.
Kind regards
BCC Host
Hi Sally,
Apologies I didn’t see your details earlier, I haven’t been onto the website for a while, but I can give you an update on what’s happened with me and the Diabetes Mastopathy since Feb.
I went in for surgery very nervous as the Consultant still couldn’t rule out cancer, and he had given a strong indication he was going to remove most of the hard tissue.
However… came out the op with a breast that felt a normal size and with a huge dressing over the wond. The surgeons hadn’t removed all the tissue as it didn’t look cancerous and sure enough the results came back benign - only a section about cubic 1cm was taken.
My left breast hurt for ages after surgery and was significantly more swollen, however a few months on and with concerted effort, I’ve improved my diabetes control and the ‘lumb’ appears to have gotten smaller and there is more malleable tissue in the breast.
Alas, I have lost some of the sensation in my left breast and it is also heavily scarred and still tender at times.
The breast clinic surgeon, despite my asking, refused to pass my details onto the Diabetic care team (at the same hospital), as he wanted to rule out any suspicious - but I wish he had done it as they are very keen to investigate further. I’m waiting for a further blood test result before they can give me any further info.
Sally, my advise to you is - control your bloods better than you think you can, harras the Diabetes team, if they won’t help you - visit or call another hospital with Diabetes research and advise.
What are your thoughts and feelings at the moment? Have you seen the consultant yet?
With best wishes
Jan
Message for Jan Hi Jan,
Now I’m apologising for the delay in replying!!
Fortunately for me, after waiting for 5 long weeks waiting to see the consultant I finally got to see him on 2 April. I was pretty sure that it was Diabetic Mastopathy that I had in my left breast (as diagnosed in my right breast 3 years ago after been told that they were 99% sure that it was breast cancer) but fortunately it turned out to be a harmless lump - phew!! Fortunately although the consultant that I had previously had retired he returned to see me!!
I must admit Jan that although what we have is an extremly rare disease (that really no-one seems to fully understand) I do feel very lucky. I have had Type 1 Diabetes since I was 7 years old (I am now 42) and have not had too many problems arising - though I must say that before the misdiagnosis of me having breast cancer I had a very stressful couple of years with one thing and another which obviously had an effect on my blood sugars.
The consultant did say that the lump in my right breast appears to have reduced in size - which is a good thing. I must say that I am just very aware of lumps in my breasts nowadays, which I wasn’t as much before - one scare was quite enough as you would probably say now. How long have you had diabetes Jan?
Has it been relatively stable? I assume you are on insulin?
Well, I apologise for not replying earlier - it’s just so nice to talk to someone with the same condition - especially when it’s a rare one!! I couldn’t believe my eyes when I read your e-mail!!
Take care
Sally x
Is it diabetic mastopathy ??? Hi both,
I have really appreciated reading your postings. I am diabetic - Type 1, having had it for over 23 years now and am currently in the process of being tested for breast cancer.
I had my first appointmemt at the clinic just over 6 weeks ago, having an ultrasound and fine needle aspiration. All was ok at that point - but the Dr was concerned about the lump. She said that she thought it might have been diabetic mastopathy - but after talking to the person who undertook the ultrasound she didn’t believe it was. She suggested that it may be hormonal - so I went back to the clinic last week, 6 weeks later.
I do feel my lump has been changing size and does get larger near to my period - but it was still there. So I had a core biop. The Dr who I saw last week felt v sure that it is diabetic mastopathy - the opposite to the first Dr - and felt that this would be confirmed by these tests!! He did go on to say that he had another lady at the clinic who also had this condition. However you do begin to panic that the other doctor was right and he has got it wrong. Reading your experiences has shown me that it isn’t all ways easy to diagnose so I will just have to wait and see.
I hope to get my results on Wednesday - and will let you know how I get on.
I have to say though, up until a few weeks ago I never had any idea that this is one of the diabetic complications I could be facing. It isn’t really advertised anywhere whereas the risks to your eyes, kidneys etc seem to be advertised everywhere, and are constant features in the Diabetes UK magazine I get !!
Thanks again - you really have helped me - as I am sure you can imagine I am going through a pretty emotional time at the moment.
Judith
Hi Judith,
Just wondered how you got on Wednesday - have they confirmed that it is Diabetic Mastopathy?
I felt the same as you as in the fact that this complication of Diabetes Type 1 is not advertised at all - I did in fact write to Diabetes UK to say this! I now feel that there is now more than me out there with the same condition which I must admit makes me feel less isolated - it is great (although I’d rather not have it - although it did make me look at life a little differently afterwards).
Let me know Judith how you got on - it would be nice to know.
Take care
Sally x
Still Not Sure? Hi Sally
I got my results on Weds by phoning and speaking to the Consultant’s secretary as they had said that they would write to me - and I couldn’t wait any longer to recieve the letter (which still has to arrive).
Basically she read out that my results were benign and as the Doctor had discussed with me I didn’t need any more treatment??
I can’t really recall much of this part of the conversation we had the week before - so I was awaiting the letter to see what if anything else it said.
So I am not sure - I presume it is diabetic mastopathy and they simply don’t intend to do anything about my lump - which after what I have read I am glad - as it seems to grow back anyway!! But I have also read sites that suggests that people with this condition are screened annually via mamogram or ultrsound - but it doesn’t look like I am to be offered any of this - are you on any type of screening program?
To be honest I was so releaved it wasn’t cancer I couldn’t ask any more questions over the phone. I will wait til I get the letter and probably ring back to ask some other questions as I feel I want to know a bit more about it!!
I will let you know how I get on.
Judith
For Judith… Hi Judith,
Thanks for the reply - I’m so pleased that it wasn’t cancer - it sounds as if you were in a similar situation as me 3 years ago apart from the fact that Diabetic mastopathy wasn’t mentioned and cancer was confirmed - what a relief.
Have you received your letter from the consultant yet?
I wasn’t offered a screening but I must admit I do monthly checks on my breasts now - one big scare was quite enough for me. I do think though that there is not enough publicity on this rare disease that we have - there is, as said before that the eyes etc can be worrying but breasts have never been mentioned. I am sure that many women have been misdiagnosed in the past - I am so thankful that we are not one of them but think that more could be done - even at our 6-monthly check ups at the Diabetic Clinic would be ideal wouldn’t you say?
Anyway, let me know what happens…
Take Care
Sally
so confused! Hi Sally, Jan & Judith,
I hope you can help. I’ve just been told that the suspicios lump I had biopsied is commonly seen in diabetics. I’m thrilled it’s not cancer…but…I’m not diabetic! I wondered if you knew anything more about the condition having experienced it. Do you know if there is another reason I could have developed this type of lump? Is it likely to go away? It’s uncomfortable, especially during the time of the month, and it throbs if I lie on my side.
The surgeon has put me on the waiting list to have it removed, which I’m really nervous about as I have small breasts (36A or B) and this thing is big (3-4cm) and totally solid. At only 28 and a being a fan of beach toplessness (it takes bravery at first!), I don’t want too much of a mess. Minor scarring and even a little dent I don’t mind at all. However, I don’t like to moan when I’m fortunate to have been told I don’t have breast cancer! I hope you can give me some advice.
Thanks,
Tracey
DIABETIC MASTOPATHY I have edited this post and added the link
Kind Regards
Forum Host
Breast Cancer Care
posted on 24.06.07 9:04 am
jude2
Hi Tracey,
As you will have read from my postings I too know very little about the condition. I have since found a small piece of information on the Diabetes UK web site under ‘long term complications’, which you may find helpful to read. (I have actually gone and found the page and pasted it for you to read at the bottom of my posting).
It does feel very confusing to be told that it is something like diabetics get when you are not diabetic!!! I was also under the impression that it wasn’t that common a condition for diabetics - so its strange you have been told this!!
I am 36, but have not been offered any surgery to remove my lump - and have simply been discharged from the breast clinic, and sent a two line letter basically telling me ‘you lump is benign and you don’t need any further treatment’
From what little I have read on the internet certainly for diabetics it would appear that the lump could grow back if removed - but this may not be the case for you. I think it would be worth trying to get back in touch with your surgeon / consultant to try and find out a little more as to exactly why he feels it is necessary to remove the lump - as it is quite a major thing to have surgery, particularly when you are not too sure about the condition he has diagnosed. Also from what you have written you clearly want to find out about how your breast will be affected by the surgery and what it will look like afterwards. Then YOU can make an informed choice if surgery to remove the lump is the way you wish to move forward with this.
I hope this is helpful.
Judith
diabetes.org.uk/Guide-to-diabetes/Complications/Long_term_complications/Breasts_Mastopathy/
Hi Judith,
Thanks for such such a promp reply. Now that I’ve had time to think about things and research a little more, I do feel that surgery is perhaps a bit hasty. I’m seeing my GP this afternoon and hope to get some answers regarding why I have developed this large lump and if there’s anything I can do to reduce it’s size or get rid of it completely. Thanks also for the link to the diabetes website. I notice it said that the lumps can indeed become painful, I was previously under the impression that such lumps should be painless.
I hope to be further forward later on today and I’ll let you know how I get on.
Thanks again!
Tracey
chat with GP Hi,
I thought I’d give an update after seeing my GP yesterday and also having a long chat with a nurse from this site who phoned me yesterday. My GP was able to tell that there had been a multi-disciplinery meeting about my biopsy result which is showing lots of things going on. There are various changes in my breast tissue and ducts, including one change which indicates or immitates diabetic mastopathy. My GP is going to test me for diabetes and I have an appointment for that. We agreed it is unlikely I have diabetes but will test to be sure. She said that the consultant wants to remove the lump because the biopsy threw up so many question marks, and more of the lump needs to be examined to find out exactly what it is. I now feel more confident that the lump is not simply being removed ‘willy-nilly’. The biopsy shows no cancer and the consultant is very confident that this is for sure so the lump will be removed probably in august or september. The chat on the phone with the nurse was great, I’m so glad I came onto this site, it’s made me feel much better!
Tracey
Hi Tracey
I was really pleased to read your posting. It sounds like the visit to your GP and chat with the nurse was exactly what you needed and has given you the explainations and information to help you understand what is going on.
It sounds like you are getting excellent care, and they just want to try an narrow down what is going on with your lump.
Let me know how you get on with your testing for diabetes - hopefully it won’t throw anything up.
I am really glad that you are feeling better and much more confident about everything.
Take Care
Judith
Onward! You are absolutely right Judith,
I now feel I have some answers to all the questions and unknowns which I was really beginning to worry about. I also agree that I seem to be getting excellent care and advice from everyone, including yourself! Thank you! I go on holiday on Friday for two weeks with my Mother and Sister and I’m pleased to say I feel I can forget about it for now and just relax. The appointment for the diabetes check isn’t until I come home either so I’m able to put that out my mind too. This time last week I was at the hospital and I now feel so much better, what a difference a week makes! Thanks once again and I’ll defo be in touch when things move forward.
All the best
Tracey
Hi there to both Tracey and Judith,
Just wondering how you have been getting on Tracey - have you had your appointments - how did you get on and what was the verdict? I must admit that I was rather surprised to see your entry on the forum and rather surprised! I am curious to see what has happened since?
I must admit that this condition I think is rather underated and I am sure that there are/have been many women who have been incorrectly diagnosed - what do you think? I keep thinking that I could have been given a mastectomy and chemotherapy by mistake although I appreciate that this is a disease which is rare and usually affects those people who have had long-standing diabetes type 1 which is the category I fall into.
Anyway, it would be great to hear from you or others for their comments!
Take Care
Sally x
Hi Sally & Judith!
Thank you for thinking about me and wondering how I was getting on. The holiday really did the trick of taking my mind off it for a while.
I was tested for diabetes last week and as I thought, I’m pleased to say that I don’t have it. While this is very good news, it still leaves a big question mark over what on earth is in my breast.
I have been referred through Bupa now and collected a referal letter from my GP today, which I’ll take to the consultation on 9th August (earliest I could get).
It was good to read it for myself as my biopsy results were enclosed and it’s given me some time to do some research. Here are the results:
“Two cores show very prominent stromal sclerosis associated with a rather dense lymphocytic infiltrate around ductal and lobular structures as well as blood vessels. The tissue appears rather atrophic and there are some myelofibroblastic cells within the sclerosic stroma. The appearances in this biopsy are not specific but raise the possibility of an underlying lymphocytic or fibrous mastopathy. The pathologist wonders if this fits clinically. There is no evidence of in-situ or invasive malignancy.”
From what I can gather, in plain English: There is a hardening of tissue which is being attacked by my immunne system, and there is also some tissue wastage/break down in the area. I have no clue as to what ‘myelofibroblastic’ is! A lump like this is often caused by an auto immune response seen in diabetics, which I’m not, so it doesn’t fit clinically. Finally, there was no evidence of cancer.
I go between knowing it has to be removed for further investigation, and wondering if should just be left as it’s not cancerous! So Sally, I can begin to relate to you wondering if you went through surgery and chemo unneccessarily. I agree that there isn’t enough info out there about diabetic mastopathy and it’s impressive that it was picked up on with me, as in many cases for others, unfortunately it isn’t. It’s very ironic considering Idon’t have diabetes!
All I can do for the moment is sit tight and see what happens on the 9th!
Trace
x
Sorry Sally, re-read your post there, now understand that you didn’t have proceedures needlessly, but others may well have.
Hi!
Just a quick update.
Saw a very nice consultant tonight who said he’ll have me in for the lumpectomy within the week!
I’ll let you know when I get a date for sure.
Trace
x
That sounds like good news Trace - at least if they remove the lump they will be able to look at it more closely to see what has caused it. Although I am sure you will feel some anxiety, on the other hand I bet it feels like a big relief to know that the consultant will get you in for a lumpectomy within the week. Let me know the date when you get it!!
Take Care
Judith