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DIABETIC MASTOPATHY

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Re: DIABETIC MASTOPATHY

Hello! I am new to this forum. Thanks for any comments!!! I am 62 years old and past menopause around age 50. Two years ago I started having breast pain. I went to the doctor and a mammogram showed I had abnormal cells in two places. I had a double biopsy and had the areas removed with a small margin. I had DCIS low grade on one place.
The surgeon seemed sure she got it all and I decided not to progress with normal protocol which as you all know was radiation and drugs to control the estrogen. I recently had an ultrasound and mammogram which seemed ok but I still have the breast pain. I have been pre diabetic for years but now have type 2 diabetes. I also have fibromyalgia which makes many medicines not agree with me. I have tried metformin and Junuvia now and I feel worse on both. I do think my breast pain is better on one of these medicines. This has led me to think this is diabetic related not cancer related. I have read that mastopathy is related to type 1 diabetes but have not seen anything about type two diabetes. I would like to know if anyone has had this problem. I would say this breast pain is like having two bowling balls on my chest. Any thought would be appreciated and any of you taking medicines for diabetes that you like. Thanks

peacock
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Re: DIABETIC MASTOPATHY

Hi everyone
I've been doing some googling because for 2 weeks now I've had a largish, and sometimes painful (when its touched) lumpy boob. I visited my GP who sent me off for a mammogram and I also had an ultrasound. The diagnosis came back as "hormonal", which I was quite relieved about, but the lumpyness is still there, so I am considering returning to my doctor to ask for further investigations.

My point of writing is that I've come across this thread. I am a diabetic, on insulin and have been for almost 40 years since I was 11. I never knew this condition existed and now because of my recent problems am wondering if this is what I have. Is there a way of actually checking or does it involve further breast cancer checks before confirmation of diagnosis.

My control has never been ideal, perhaps on the higher side than it should be although it tends to be "brittle". I don't have other diabetic complications, except that there have been some "normal" changes with my eyes.

Any help is greatly appreciated with thanks.

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Re: DIABETIC MASTOPATHY

I have been interested reading all your posts above - I have had type 1 diabetes for 31 yrs with no complications, no eye changes etc, and found a lump in November - In december got an USS and truecut biopsy done - USS showed normal tissue (!) and biopsy showed inflammatory changes - was told this was normal in diabetics. Presumably then i have mastopathy - which worries me a bit as the diabetic association web site suggests that this is a complication of diabetes, due to poor glycaemic control and is therefore linked to other complications - wereas I had understood it to be more like a frozen shoulder, which can happen to diabetics at any age. Also, I would have thought that if it was due to diabetic control then type 2's would get it as well.

Anybody got a clue?

Another question, the biopsy was done on the 20/12/07 but i still have a dark red 1/2cm scar from this, that looks much worse than a scar from an op done on the 5/02/08. Is this normal?

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Re: DIABETIC MASTOPATHY

Hi Sujac,

I have not been on site for a few weeks - so have just seen your posting. How did you get on at the hospital? I hope all went ok - it is a really worrying time when you are not sure what you have got going on in your body. Hopefully the clinic will have been able to provide some answers for you.

I too am Type 1 diabetic and you will be able to read from my earlier postings what my experiences have been.

Lets know where things are up to and how you got on, and I will keep a watch on site in case you want to chat.

Take Care

Judith

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Re: DIABETIC MASTOPATHY

Hi Sujac,

Hope your appointment goes well tomorrow, let us know how you get on.

Trace
xxx

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Re: DIABETIC MASTOPATHY

Hi I'm new on here and have recently discovered a lump in my left breast,have a hospital appointment on October 23rd.I am diabetic,Type 1.5 on Insulin.I have heard about this condition which could be related to diabetes and am wondering if it could be what I have.

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Re: DIABETIC MASTOPATHY

Hi!
Thanks Judith! I'm pleased to report that everything went well! The surgeon said that everything is as it should be in terms of healing, and I must say myself, it looks great. He told me what changes to expect over the next 6, 12 and 24 months so that I can keep my eye on things. I asked him the name he had given the condition last time I saw him as I forgot before. He said the pathology report showed chronic inflamation in the form of duct ectasia and periductal mastitis. I've read about these conditions since and everything fits with that, especially periductal mastitis. So, it's all good really and I just have to manage the discomfort, which is much easier when you aren't worrying about what on earth is causing it!
Thanks you so much for your concern and support once again, Sally & Judith!
Tracey
xxx

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Re: DIABETIC MASTOPATHY

Hi Trace,

Hope all went well yesterday.

Judith

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Re: DIABETIC MASTOPATHY

check up changed to 10th October, be back on with an update then, all seems well though!
xxx

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Re: DIABETIC MASTOPATHY

Really glad to hear that all is going well - and that everything is healing nicely. I am sure it will feel good starting to get back to normal at school and I am sure the kids will keep you very busy.

Hope all goes well on the 5th.

Keep looking after yourself!!

Judith

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Re: DIABETIC MASTOPATHY

Hi there!

Just a quick update to let you all know that 3 weeks on, everything is great. I've healed up so well, I've shown friends and they have actually struggled to find the inch and a half scar! The tissue appears to be settling and softening now too. I went back to work on Monday and the support and concern there, as it is on here, was really touching. Although I am tired and a little achey now it's the weekend, I can honestly say it was great to get back to work! Long may this continue. My next check up is on 5th October, so I'll update again after it.

Thanks for your continued kind words and thoughts through this wonderful forum,

Tracey
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Re: DIABETIC MASTOPATHY

I am so please everything has worked out well for you - thanks for keeping us updated!
Take Care
Sally x

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Re: DIABETIC MASTOPATHY

Hi!

I had my follow up at the hospital today. The surgeon explained that I have a sort of chronic infammitory problem in the breast which is just one of these things which happens without reason. He said that this is something which may well happen again, or reverse and get better. He gave it a clinical name which annoyingly I can't remember! The main thing is, it's all benign! He said it would be unlikely that any future lumps would be removed as I would be in and out of hospital and would end up with 'messy' breasts. The only thing I can really do if I get discomfort is to take painkillers. I have another check up in 6 weeks as he'd like to examine me when the tissue has really settled down.
My wound looks neat, but now the dressings are off, I can see there is a lot more healing to be done and I'm taking next week off work just to be sure I don't jump the gun and open it again or get an infection in it. All in all, a positive
outcome I think!

Tracey
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Re: DIABETIC MASTOPATHY

Thanks for letting us know how you got on - just remember to keep us updated when you know more.
Take Care of yourself
Sally x

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Re: DIABETIC MASTOPATHY

Glad the op went well. Let me know how you get on Friday, I will be thinking about you.

Judith

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Re: DIABETIC MASTOPATHY

Hi!

I'm home and OK. Everything went well I think. I'm swollen and tender to touch but not constantly achey which is good. I go back on Friday to have the wound checked and get the biopsy results. I'm so glad it's done!

Trace
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Re: DIABETIC MASTOPATHY

Hi Trace,

I hope all went well and you are starting to recover. Take things easy for a while and allow yourself to be indulged in a few luxuries.

Look after yourself.

Judith

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Re: DIABETIC MASTOPATHY

Thank you so much Sally & Judith!
I'll be in touch as soon as I can and let you know how I got on. This time tomorrow it'll be all over thank goodness!

Trace
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Re: DIABETIC MASTOPATHY

Hi Trace - Good luck for Friday - I will be thinking about you.

Take Care

Judith

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Re: DIABETIC MASTOPATHY

Hi Trace, let me know how everything goes - at least you will know what it is won't you. Keep us posted - we are thinking of you! Sally x

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Re: DIABETIC MASTOPATHY

Hi Judith!

Well we are almost there! I go in on Friday afternoon, hopefully as a day case only. Everyone is kidding me on that the worst part for me will be the fasting before it! I am ALWAYS hungry! I'm a teacher and started work again today after the Summer holiday, so my mind will certainly be kept off it (more or less) until Thursday night. I really hope that removing the lump will give me more answers as to what the lump is and why I developed it in the first place. Fingers crossed!

Trace
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Re: DIABETIC MASTOPATHY

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

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Re: DIABETIC MASTOPATHY

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
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Re: DIABETIC MASTOPATHY

Sorry Sally, re-read your post there, now understand that you didn't have proceedures needlessly, but others may well have.

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Re: DIABETIC MASTOPATHY

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
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Re: DIABETIC MASTOPATHY

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

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Re: DIABETIC MASTOPATHY

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

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Re: DIABETIC MASTOPATHY

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

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Re: DIABETIC MASTOPATHY

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

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Re: DIABETIC 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

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Re: DIABETIC MASTOPATHY

DIABETIC MASTOPATHY I have edited this post and added the link

Kind Regards
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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

http://www.diabetes.org.uk/Guide-to-diabetes/Complications/Long_term_complications/Breasts_Mastopath...

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Re: DIABETIC MASTOPATHY

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

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Re: DIABETIC MASTOPATHY

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

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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

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Re: DIABETIC MASTOPATHY

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

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Re: DIABETIC MASTOPATHY

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

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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

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Re: DIABETIC MASTOPATHY

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

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Re: DIABETIC MASTOPATHY

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
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Re: 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.........

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DIABETIC MASTOPATHY

DIABETIC MASTOPATHY