Misdiagnosed or not diagnosed properly ?

MO74

I am 61. About 4 years ago I started having pain in my left breast. Did self exam, found something. Mulled it over for months before seeing my primary care.

She said "Yes, there's something there" and sent me to see breast specialist at Dana Farber.

Mammogram showed nothing. Specialist's (NOT a Doctor !- a CNP Breast Specialist) told me, "I'm not worried about you.Just come in for yearly mammograms and we'll keep an eye on you."

My previous history , risk factors, all shared with her:

-a lump during pregnancy - same breast - that disappeared when I miscarried.

-My maternal aunt died of breast cancer.

-I also had astronomically extreme estrogen levels and did not stop menstruating until a partial hysterectomy at age 57.

Pain continues, I go back for recheck, demand MRI. Shows nothing. She advises another MRI in a year. This one notes "ductal changes" and the pain continues. I notice my left breast changing shape, hanging a bit. She tells me it is "normal aging".

This past year the pain is worse. It has spread into my left armpit and back. My breast is enlarged.

I wake up with a bruise on the breast one morning, go see my new NP and she sends me to breast specialist after telling me "It looks inflamed" I live in Maine now so go see a Maine breast specialist. She inspects breast and says "I see lots of women with breast pain. This bruise is nothing to be concerned about but I want you to come back for mammogram and sonogram in 2 weeks"

Both tests show nothing. A small lump under bruise that she says is a hematoma.

My breast pain continues, my breast keeps looking weird, the nipples are definitely different on each breast. I have some redness under the breast where it hangs on my abdomen.

Suggestions welcome. Thanks for reading.

exbrnxgrl

Hello,

I understand that it is difficult not to worry, really, really difficult. Let me start by saying that IBC is very rare. As to your “risk" factors:

- lump during pregnancy. Why is this considered a risk factor? If it disappeared when you miscarried (I am so sorry you had to go through that), it was likely related to the pregnancy.

- Only a small percentage of breast cancers are genetically connected. Despite the fact that over 30 gene mutations are now identifiable, the vast majority of those who develop breast cancer have no known genetic mutation. Have you had genetic counseling? That might help you understand genetic risk better.

- High estrogen levels. I don't know enough, medically, to comment on this.

I know the anxiety can be awful but you have seen several medical professionals and had some imaging done and they can't find the source of your symptoms. If the condition on the skin of your breast is a concern, a dermatologist might be able to address that. Overall, since both you and your providers are aware of your concerns, it sounds like continued monitoring would be a good strategy. Not being diagnosed with breast cancer doesn’t mean you’ve been misdiagnosed or not diagnosed properly. What it means is that with the assessments you’ve had, no breast cancer has been found. All the best.

MO74

High estrogen levels are a risk factor for breast cancer.

exbrnxgrl

Yes, I understand that but am unable to comment on how that , specifically, contributes to your personal risk. Have you checked with a derm to see if you have a skin condition? In general, besides being rare, IBC follows a fairly rapid progression. It sounds like this is not the case for you, which is a good thing!

Beesie

MO74,

I'm sorry you are having this pain. I noticed that you've posted in the IBC forum, and I hope that soon someone with IBC will come by to comment. Until then, while I can't say anything about your latest symptoms, I think it's probably pretty safe to say that IBC would not go undiagnosed for 4 years. IBC comes on quickly and usually worsens within days or at most weeks. You wouldn't have IBC for 4 years without it being very obvious.

I checked back on your previous posts and noticed that the NP Breast Specialist that you first saw suggested the possibility of Tietze syndrome. Did you ever pursue this? djmammo, a member here who's a breast radiologist (unfortunately not posting on the site at this time) also suggested costochrondritis.

As for your risk, to add to exbrngrl's comments, I agree that a lump that develops during pregnancy would not be a risk factor for breast cancer. Similarly, having a single second degree relative with breast cancer would also not likely increase your risk. Are there any other cancers in the family, and particularly, in the same line of the family as your aunt? Some other cancers, such as ovarian and prostate, are in some cases genetically related to breast cancer. If there is more of a family history of cancer, that could be something to pursue with a genetic counselor. With regard to your periods, yes, extended continuous exposure to estrogen, i.e. starting your periods at a young age and going through menopause at a late age, does increase breast cancer risk. I've always seen this referenced as being a "slight" increase in risk - so this is a low risk factor, not a significant one. Most women have at least one or two low risk factors - that's what takes the average woman from a base risk of 4%-5% (the breast cancer risk we all face just for being born female) up to a risk of about 12%, which is the average risk across all women in North America. Someone with a single low risk factor (or even a couple of them) might still have an overall risk that is lower than average. Not saying that's the case for you, of course, but if this is your only risk factor, then it certainly wouldn't make you high risk.

Of course that doesn't mean that you may not develop breast cancer - 1 in 8 women do - so it's important to be vigilant and to get things checked out, as you have been doing. But if multiple MRIs, mammograms and ultrasounds have found nothing, there is not much else you can do other than remain watchful and, given the symptoms you have, perhaps consider other possible causes. Those are the 3 screening modalities for breast cancer, and if they show nothing, there is nothing else a doctor can do. This is not a misdiagnosis; there is just a mystery about what's going on. Unfortunately that's not uncommon with medical conditions - I'm dealing with a couple of those situations like that myself, though not breast related.

I hope that you are able to get a diagnosis of one sort or another, so that you can treat and reduce this pain.

MelissaDallas

Red underneath where your breast lies on your midriff (or in any skin creases) is pretty common for fungal skin infection because it stays warm and damp. I would try athletes foot powder or cream or spray while I waited for the doctor

Moderators

Hi MO74,

We're so sorry to hear you're worried -- it's very common to be scared when you find changes in your breast area. The good news is, as members above have stated, IBC is a very rapidly-developing diagnosis and if that was your outcome, you'd know it way before now.

Breast changes are common, and in many cases benign, but it's good that you're being diligent about these changes. Please let us know how your testing goes and in the meantime, try to remain positive that this is nothing at all to worry about!

--The Mods

AliceBastable

I get ugly red spots under my whole breast if I don't wear a bra for too long. Age + gravity + plus largish breast makes a breeding ground for a fungus among us. The most recent was first noticed by my oncologist on a routine check-up - I hadn't bothered to hoist it up to look underneath for a while. Anti-fungal athlete's foot cream fixed it. I don't know your age or physical build, but that same gravity combination can have an effect on other breast appearances, too. I have to make sure I wear a bra at least every other day or I get all kinds of discomfort. Cold weather hibernation with sweatshirts means I have to actually think about things like this.

Kipani

could be Granulomatous mastitis