24 years old, high risk, and no family hist.- can anyone relate?

mng95

Hi there-

A little bit about me, I felt a peanut sized lump in my left breast last year around August, I brought it up to my primary doc who went on to immediately dismiss me and assumed it was a cyst or something that could go away with hot compress. Well, I tried her suggestions and nothing went away, finally she referred me to a hospital near me to get an ultrasound. Got the ultrasound in Dec 2018, they said it was probably benign (BI-RADS 3) and to do the classic 6 mo. follow-up unless anything changes. I felt a thickening sensation around the lump and had it checked again in Feb 2019, they did a biopsy and it came back as ADH. I had an excisional biopsy on 4/3/19 and thankfully it didn't get upgraded. Over the past year I've had 3 core biopsies for suspicious lumps, a surgery, MRI etc. I'm now considered "high risk" and get annual MRI's along with clinical breast exams in-between (no mammograms until I'm 30 bc of radiation). I took the Color genomics test and it came back negative.

Majority of the high risk women in their 20's that I've read about have had a genetic mutation, and I've felt very isolated in this whole process. I recently got referred to Seattle Cancer Care Alliance and am hoping they will be able to come up with a better plan for me, so I'm hopeful. I was just wondering if anyone in their 20's is high-risk w/o family history? Did you have trouble being taken seriously by breast docs up until your dx? I've definitely learned I have to be my own advocate. (Sorry if this is all over the place- it's been a lot to process)

Side note: I know I could have it WAY worse- not to discredit my own feelings, but I just want to acknowledge that I'm thankful that I am getting screenings constantly so if I were to find anything- it would hopefully be caught early.

farmerlucy

Good for you noticing the subtle change in your tissue. I’m glad you are being your own best advocate. I hope you get some answers at the new provider. In the mean time I tell you what advice I’d give my own daughter. We do have a family history, with earliest onset at 27. I would tell you to keep on advocating for yourself. Breast cancer takes years to develop, and the MRIs should give you some protection. I’d suggest you continue to live your life, have your babies sooner rather than later, stay away from extra hormones. The last I heard even Brca carriers have until their early thirties to do the PBM. Hopefully between now and then more things will come to light re: other genetic mutations or treatments, or screening. There used to be a lady on here - I think her name was LintRollerDerby. Anywho she had a mutation and breast cancer, her daughter had the same mutation and had a PBM in her early twenties. You might look at her posts. Also she was active at the FORCE Website, and I’d take a look there and also ask questions.Try not let this rule your life. Sending you a gentle hug.

mng95

Hi Farmerlucy!

Thank you so much for your advice/kind words, much appreciated

I just got married this Sept. and we are definitely trying to have babies while I'm still "in the clear" just gotta get through school first! I'm getting my teaching degree at the moment. Thank you again for your post!

Moderators

Welcome, mng95! We know it's a lot to deal with, especially at your age, but it sounds like you're doing everything you need to be doing. We second Farmerlucy's advice: keep being your own advocate, but try not to let this rule your life! Congratulations on your recent wedding, sending you our best!

The Mods

mng95

mods- Thank you

blah333

I'm 37, have had DCIS and still struggle being taken seriously at my medical campus. I'm a low income person that goes to the county hospital but because I'm white (and I'm not fat or old, crippled, wobbly etc) everyone just assumes I'm fine and my life is fine. The breast center does take concerns seriously such as imaging, but I have to wait a long time for it. But for a lot of other health issues I have found doctors to be shockingly dismissive.

ANYWAY, I saw this recently. If you scroll down you can see what cells look like. https://www.breastcancer.org/symptoms/types/dcis/d...

I had looked at my pathology report recently because I am worried of recurrence. After my mastectomy they found ADH in the breast, as well as hyperplasia in my healthy breast. As you can see in the link above - the cellular formation appears like a possible pre-DCIS situation. (DCIS is breast cancer still in the ducts, in situ). I had no idea anything was going on in my breasts, I never had pain or cysts or hints of abnormal activity (except family history). I got a bilateral mastectomy because my mother had DCIS/lumpectomy and then DCIS appeared in her opposite breast 5 years later. At the time of mine, I realized that, even though we do not have any of the genetic mutations found so far, for whatever reason the "soil" of our breasts are just fertile for breast cancer for some reason. Being high risk, your breasts are probably also like fertile soil for the development of BC. So you must stay vigilant in monitoring it, as well as trying to help your body by not smoking, not being overweight etc, avoid things that increase estrogen in the body as most breast cancers feed off of estrogen. I have read that taking vitamin D, K, and iodine can help. They sell supplements of that together. Carciferous vegetables like broccoli/brussel sprouts/cabbage area also good for the body and keeping estrogen in check. I got a daily vitamin that has a "breast support blend" in it (it's a whole foods brand vitamin for age 40+ women though I'm not 40 yet) but who the f knows... as many women say on here getting bc is a crapshoot.

At least you are on the ball about it. I was oblivious at your age.

It's unfortunate you have to keep getting prodded, or waiting until something bad is present in order to take action. Hopefully you'll find a medical profesional that takes you seriously soon.

mng95

blah333-

I’m sorry you haven’t been taken seriously after all you’ve been through! I’ve never realized how dismissive some people can be until now, it’s been a blessing in disguise though because I stand up for myself way more than I use to! And thank you so much for all of your tips and advice- I will definitely be checking out those vitamins. I’m trying to maintain a healthy lifestyle too! They FINALLY took it seriously once my biopsy came back with ADH but still don’t know what to do with me because I’m one of their youngest patients at my breast center. My current specialist at the place basically said to me the other day that while they are going by the standard monitoring guidelines they don’t know what to do with me haha, which is why I got referred to Seattle cancer care alliance. I’m hoping SCCA has seen at least one other case like mine so that they have some idea of a comparison.

Also- I feel like a total outcast any time I come into the breast center, I’m surrounded by old women lol

I hope all is well for you! thank you again