Question For Ladies With Eds

[Katybug]

When I was 26, I was told by my GYN that I had "fibrocystic" breast tissue and that it was nothing to worry about but that I should start getting mammograms earlier than most women. Last year I had some discoloration in the skin on my breasts (which turns out to be my veins being more visible from the florinef), so my cardio sent me to one of the top breast surgeons here to have it checked out (she felt it was vascular but didn't want to take any chances.) So, anyway, he confirmed that it was my vascualr tissue becoming much more visible but told me that he is glad I came in to have a mammogram because I have very dense fibrous breast tissue and that even though I was only 36 at the time that he wants me to have a mammogram annually as I would not necessarily be able to feel a lump the way other women would. The radiologist actually had the mammo tech tell me the same thing before I left their facility.

So, here's my question, I am suspected of having EDS and in the process of getting a better grip on that dx. Is this something that is associated with EDS in women? I have not seen any mention of it in the EDS resources I have found but I know that the practical experience among us is often more accurate than the data readily available to the public about these things. I haven't really mentioned it to my other docs because it seemed like a specialized thing that was unassociated, but, maybe it is another piece of the puzzle that I should be talking about. ???

[Crow]

Looks like there's been some articles on it?

http://www.ncbi.nlm.nih.gov/pubmed?term=%20breast%20ehlers%20danlos

[Katybug]

Crow,

Thanks for these articles...this is good to know too. But, my issue is not calcifications...it's that my actual mammary tissue is inherently more fibrous than the average woman's. Because of this, it feels lumpier naturally when I do a manual breast exam and the breast surgeon said that the density of it would make it hard to detect a "lump" that was deeper in the tissue with a manual exam. I'm just curious if this is another EDS trait that they never tell women about until you ask the question.

[anaphylaxing]

I have ?EDS3 and my whole female family has extremely dense tissue. Also thin skin and readily visible veins. Occasionally these can get thrombosed and become even more obvious. Though, there are many women with dense tissue and no EDS; it is very common.

It is good you are starting screening early, but can I ask, are they doing ultrasound or MRI with you mammo screening? If your tissue is dense, mammography has low sensitivity and it is prudent to at least have a bilateral breast ultrasound as well. Often, before 40, some recommend yearly breast ultrasounds and saving the mammo for when the ultrasound's abnormal or every second year until 40 to save some radiation. MRI is also an option. Things to discuss with your doc; maybe you already have

Do you have a family history of breast cancer at all?

Fibrocystic breast tissue is found in more than half of normal women, so I would try not to be concerned about it. That being said, if you ever feel a new lump or a change, you should always be assessed by your doctor. I do realize, like you said, with lumpy tissue, it's hard to pick out new lumps! So, good that you are getting screening.

Also, the younger you are the denser your breasts will be. You might find this changes with age.

[CharmedLinz]

Hi Katybug,

Yet another thing we share......long lost cousins??? My Cousin with POTS is Kate as well, you don't live in Memphis do you??? LOL

Ok anyway, both myself and my Mother have extremely Fibrocystic breasts.

I was told my Watkins in Alabama that this is common in Dysautonomia patients. But this could easily be part of a connective tissue disease in my opinion such as EDS.

But I also have fibrotic tissue just about everywhere in my torso region, one thing they are trying to figure out.

I was told I could try to take Vitamin E and that would help the breast cysts, but then I was told by another Doc to be careful with Vitamin E because it can thin your blood if you take too much.

[AllAboutPeace]

I also have this issue, but no EDS. I found a lump last year - only because it was close to the surface (otherwise I never would have been able to feel it). I had a mammogram and ultrasound when I first got sick with POTS and they were investigating everything. When the radiologist was doing my biopsy, he located the lump and said "I've got it", but when I looked at his positioning, I was suprised because he wasn't in the right spot. He found a second one, by mistake. This second lump hadn't turned up on either the ultrasound or mammogram. The one lump the did the biopsy on was determined to be a fibroadenoma (benign), but it is a little disconcerting that both of those investigative tests missed the lumps. I can't feel the second one either. My prolactin levels were elevated in my bloodwork as well...which everyone determined was unusual. (???)

[brethor9]

Hi Katybug!

I don't have EDS but I just went through a scare with this actually just recently. My mother is a survivor of bilateral breast cancer several years ago.....because of that I now have to have mammograms every year due to the high risk. I went for my mammogram and about 3 days later received a call from my Dr's office saying they needed me to have a follow up ultrasound to my mammogram.....they said no reason why and it was a friday...figures.....I spent the whole weekend sick to my stomach that something was wrong. Any ways long story short I was told I too have very dense breasts and they are fibrocystic also and on a mammogram the density shows up as white snow as does cancerous nodes so because of this they cannot tell the difference. A breast ultrasound allows them to see the fibrocystic glands and surrounding tissue better without the snow. So now every year along with my mammogram I will have to have an ultrasound also its actually quite common among women.....hope that helps

Bren

[peregrine]

I'm 26 and have been getting mammograms and MRIs for a year now (the usual rule I was told is ten years before the first diagnosis in the family; my mom was diagnosed at 33 and so I started a bit late). The plan is that I get a digital mammogram (more sensitive than film) every year in the spring, and an MRI with contrast every year in the fall, so I basically get screening every 6 months. The first mammogram showed that I have very dense tissue (fibrocystic, yup!), which is another reason the MRIs rock. Sister on my mom's side also has fibrocystic breasts, although they did more screening for hers and she was quite a bit more worried as a result. Both of us have some hypermobility in the fingers; I'm the one with hypermobility everywhere else, although it may or may not be hypermobile EDS (hypermobility syndrome may or may not be the same thing) depending on who you ask these days :^)

Edited to add - the MRI I got last fall was really terrible for one reason: no support for the upper arms, so they cut off circulation to your arms and they get super-numb. Given our issues with circulation, I'm going to ask if I can get some padding or *something* so that doesn't happen again. Doing that for 30 minutes can cause some real damage! I don't know if all of the breast MRI setups are like that, but something to watch out for.

[Katybug]

Thanks for all the feedback ladies! I knew that having this isn't rare or scary but I wasn't sure about any connection with EDS. (I had to find out for myself that being hypermobile, having a hiatal hernia, and MVP were all potential signs of EDS.) Sounds like there isn't necessarily a connection with this particular item. That's good. I appreciate the info about the ultrasounds...I haven't been told that by any of the docs. I am lucky that I don't have a family history of breast cancer (which is nice cause I have a family history of just about everyhing else that will kill you .)

[Katybug]

While we're on the subject of EDS...how is it determined if you have "hyperelastic" skin? I see that it is a symptom but I haven't found an explanation as to how this is determined.

[sugartwin]

I read that testing skin hyperextensibility recommended to be done on the forearm, palm side up. Normal is no more than 1.2 cm of extension. More than that is considered hyperextensible. That said, every doctor seems to have their own idea of what actually constitutes "stretchy."

[comfortzone]

The whole thing about skin involvement on breast tissue is vitally important... Inflammatory Breast Cancer - though said to be rare - I believe is not all that rare. But it's the most deadly kind and I'm shocked at the number of women who have never heard of it. It can appear as a red area of skin like a bug bite, or rough dimply skin like that of an orange peel, it can be a little reddish itchy area - it's all about the skin... Shamefully some are diagnosed with mastitis or some other minor problem - and then lose their lives because of this delay in treatment. Once diagnosed you must have chemo within hours - and later on a mastectomy... It infiltrates by layers of tissue so most of the time no lump is ever felt. Some may notice one breast being larger than the other - if this is new then it needs to be checked out ASAP. Not too many women survive Inflammatory Breast Cancer - But if caught extremely early - I do believe you can survive. One of the head ladies in the Ehlers Danlos National Foundation died of it last summer - so sad - she so young in her 50's I believe. It's thought my mom died of it - she was 47. I have very dense breast tissue - had a scare with IBC - but it ended up a bunch of hooo ha and I am thus far without it. So I am not surprised a doctor would be very concerned about skin changes on your breast/s.... The question of stretchy skin - even doctors that see thousands of EDS patients have to rely on their experience in exams over the years - and those experts will vary in their opinion... so if it's not hugely noticeable to the whole world - those minor cases - some may call it and other docs may not... subjective opinions vary in my experience.

I had a mammogram that looked positive for CA - so had an ultrasound done - it showed negative and that all was good - but the other "non" problematic breast suddenly looked positive for CA - so had MRI's and guided biopsy .... all found just incidently - that's creepy... so they removed something by needle biopsy - I was told I never had anything looking like IBC - yet that was the reason for the biopsy... So confusing... But thus far it's not my choice to go get the genetic counseling for the cancer gene - and yearly mam's is what I'm doing - although if I had better insurance I would alternate with Mri's just by personal preference. If anyone does get IBC - the MD Anderson Cancer center in Houston is supposed to be the best I read - and they just opened a branch in Arizona too...

[anna]

Nowwhat

Do you mean Paget's disease;

Paget’s disease of the breast is an eczema-like change in the skin of the nipple, and 9 out of 10 women who have it (90%) have an underlying breast cancer. The underlying breast cancer may be an invasive breast cancer or ductal carcinoma in situ (DCIS). In DCIS, the cancer cells are completely contained within the milk ducts.

Paget’s disease affects about 1–2 out of every 100 women with breast cancer (1–2%). It's most common in women in their 50s, but can occur at a younger or older age. It can affect men, but this is extremely rare.

Or is it another form?

[Katybug]

Nowwhat,

Thanks for talking about IBC. I actually am aware of it because I unfortunately know a woman that succumbed to it as well. That is one of the reasons why I was concerned when I saw the discoloration on my breasts. The breast surgeon had me come in to his office even though my mammo was clean because I said I had discoloration. He said any time he hears that, he doesn't go by just the mammo and wants to examine the area. I was really impressed with him...I had to wait in his office for a few minutes before he came to talk to me and he had several books on his shelf that were about the mind/body connection, some Jon Kabat-Zinn books, etc. I knew I liked him before I met him. Then, he really took his time with me and has to be the friendliest doc I've ever met (and he's the chief of oncologolgy at a major hospital). Anyway, I think anytime we can have these discussions with other women so more women have more knowledge, it's great!

[Trach]

Hi Katie,

I have EDS and very fibrous breasts. My ob/gyn told me fibrous breast can be genetic (it does seem to run in my family). I was also told caffeine can make the condition worse. Since I love my morning coffee, I have chosen to have fibrous breasts! (I have gone off of caffeine previously to see if it would reduce any of my symptoms. There were no changes, so I happily resumed my morning coffee.)

I have also had cyst biopsy which was negative. I will always need an ultrasound.

Regarding stretchy skin, I totally agree with Nowwhat". If you want to see examples of "stretchy skin", you can google image ehlers danlos hypermobility. Please realize you will see extreme examples, but there are also pictures of the more moderate cases meeting the criteria. I thought I was "normal" until I used the images from an exam and compared myself to a friend who is not hyper mobile. However, like Nowwhat said, only a experienced doctor can truly evaluate you.

I hope you find answers soon!

Trish

[peregrine]

Interesting - my sister (also fibrocystic) has to avoid caffeine, but they didn't tell me that - I guess because she needed much more follow-up, since otherwise my clinic has been more comprehensive than hers. Good thing too - I like my black tea!