33 yo - DCIS Stage 2

Anonymous

33 yo - DCIS Stage 2

yougogirls

Hi everyone- I am so inspired by all of the discussions on this board. I've been reading topics here and there since the day they found a suspicious area on my mammogram, one month ago. What strong women you are and what hope and strength you give off!

I was diagnosed with DCIS (estrogen positive, stage 2) two days ago, at 33. The area is about 1.5 cm. My doctor has given me two treatment options: (1) Additional lumpectomy to clear one margin and then radiation for 4 weeks followed by Tamoxifen, or (2) mastectomy. Yesterday I went in for genetic testing and am awaiting results which might inform my decision, though my gut feeling is to go with a bilateral mastectomy for future peace of mind. I have no children but hope to have them in the upcoming couple years.

I was wondering if there are any women reading this who are/were in a similar age and situation? My doctor has referred to me being an "outlier" (my mom was BRCA negative), and the articles I've read which are largely based on the 50+ age group. I feel like I am in a no-man's land in a way. I am most concerned with curbing recurrence, and mastectomy seems to decrease the % chance of recurrence a little more than radiation for someone my age group (if only slightly).

My concerns with radiation are fertility and Tamoxifen for 5 years. I am scared the radiation will have a long term effect on my body and perhaps a future child. The idea of taking Tamoxifen for the next 5 years also feels like an ask for me to plan around this disease -- which I do not want to to. I've had my cries and am ready to kick this thing in the ass already! In any case, for those reasons I am leaning toward bilateral mastectomy and reconstruction, but also I realize that may be considered "drastic" for someone my age.

Would love input/insight from anyone. :)on why you chose one treatment option over the other. Thank you!

Sophiemara

Hey, yes I was dx at 34 with stage 3, ER+ bc 2.5 years ago now. It is tough initially especially as everyone seems older, but once you have a treatment plan in place you kind of go with it.

I joined a young women's support group initially and although I don't go to it anymore, I made some great friends and found it really useful to talk about things such as fertility, chemical menopause etc older women don't necessarily have to go through. You're not alone, so definitely reach out. It also gets easier the further out you get.

DATNY

Really sorry for both of you to be here. I was 44 at diagnosis last year, but I faced the same question. I decided to go bmx, my rationale being that if the tissue is prone to mutaton, it will mutate more than once especially given enough time. I didn't look up any studies to reinforce my decision, to me this just seemed common sense.

Both my onc and surgeon told me I am making the right decision, due to my age.

VVV

Hey- I'm also 33. Young Survival Coalition has a private facebook group you can sign up for that's really active. This question has been discussed at least twice recently. https://www.youngsurvival.org/forms/ysc-private-fa...

What did you surgeon recommend? Mine recommended lumpectomy and gave the option of unilateral mx. I haven't had surgery yet but chose lumpectomy. I get the whole mastectomy idea, even double, but you will still have breast tissue and people can still get breast cancer. Make sure you know it reduces risk but doesn't erase it. Recurrence rates with radiation are about the same as mastectomy. There's a study out there about recurrence rates specifically for under 35- it might be worth discussing that with your doctor. I'm not really so worried about recurrence but I've also had chemo and our situations don't exactly match. I've seen that a lot of women in the US overtreat with surgery but that we don't necessarily have a higher survival rate. I'm doing chemo first so I've had awhile to think about it. At first I was pretty all in on a mx of some sort but now I'm ready for less surgery. These are the things that went into my decision: Recovery time from a mx is long from what I've seen. Then flap reconstruction recovery is also long (people seem to stay in the hospital a week afterwards). Some people's range of movement is heavily impacted, nerves are damaged so breasts go numb, possibility of pos lymph node during surgery meaning necessary radiation anyways. I'm worried about bad margins and needing another surgery or a mx later but I'm willing to give it a shot. I have heavily considered a umx but I'm just not ready for that right now and I'm choosing to trust my surgeon and her recommend. It seems like flap reconstruction can do a pretty good job of matching natural breasts if you're considering unilateral. If I had someone to take care of me during recovery I'd probably lean more heavily towards a unilateral one than I do currently.

Nursepatient35

Your situation is very similar to mine. I was diagnosed earlier this year at 35 years old. It was a small lump in just one breast. I have no family history and really no risk factors other than bad luck. I went into my appt with the general surgeon thinking I'd just need a lumpectomy. After she explained all my options, my gut said to do a bilateral mastectomy. Although it seemed like a lot for a little lump, the thought of 6 weeks of radiation and 5 years of a drug seemed much worse. I have no idea how I would've reacted to radiation or tamoxifen but what if the side effects were bad and I wouldn't be able to take it anymore. Then what? If your gut is telling you to do a mastectomy, then do it. Some may think it's overkill but lots of women have had it for DCIS. You have to do what gives you the most peace of mind. I had my bilateral mastectomy with tissue expanders on Valentine's day and I'll have my implant exchange surgery next Wednesday. It wasn't easy the first few weeks but life is basically back to normal now. I don't think about cancer all day like I did in the beginning. You're in the hardest time now with getting diagnosed and waiting until surgery. It will get better eventually. Hang in there.

yougogirls

Thanks for replying everyone. It is very comforting just knowing I am not alone through your replies. I've sent a request to join the Facebook group, JVP and Sophie. Thank you for that.

I'm still waiting to hear back from genetics. I'm hoping the results will help me find peace in my decision.

Nursepatient and Datny- I am in similar thought as you. The thought of radiation and 5 years of drugs seems like a big ask at this age, especially when I have children on mind in the upcoming few years. I'm meeting with a radiologist next week and will have many questions regarding fertility as well as impact on fetus. I know I need to take care of myself first and foremost but the sacrifice of my breasts doesn't seem daunting, if it means radiation/drugs won't have a chance of effecting my future. Since we had similar sized cases (mind was 2 cm above my nipple), can I ask you if you were worried about clean margins from breast removal?

I think my worst nightmare is unclear margins after surgery and then having to do the radiation, as JVP mentioned. I wish there was a way to determine this early.

Did anyone ask for an MRI before making their decision? My doctor said she wouldn't recommend it prior to my diagnosis b/c young tissue is dense and we would find many suspect things. But at this point, more clarity seems like a good idea.

hugz4u

They are pretty good at getting clear margins. My huge hockey size lump at age 45 was growing into chest wall and I feel they did a pretty good job cleaning margins. I don’t have the best double mast recon on cancer side because they had to radiate much and take away so much chest wall. I had implants because I’m physical and at the time they wanted to take some muscle to build boob. I said, no way I need my muscles where they are.You should do fine! That was 2004!

Nursepatient35

My lump was also very close to the nipple and I was very small chested. I guess that was good though because I don't think I would've felt my lump otherwise. I was very nervous that they'd find something invasive going into my mastectomy. When it was all over my pathology said my margins were less then 0.1 mm which is close but the oncologist said it was still clear and with DCIS, he wasn't as concerned with the close margin just so long as it's clear. Therefore, I didn't need any other treatment other than the mastectomy. It's a very tough decision to make but once you make your decision, you will feel relief.

DATNY

I had to do radiation since I had her2+ cancer with positive nodes and lymphatic invasion. Even though I had complete response to chemo and immunotherapy, it was still recommended. I have one more week left of treatments. I was very uncomfortable with radiation among all treatments I had to go through (chemo, surgery and rads), but I feel much more comfortable now.

I wasn't prescribed tamoxifen as I was hormone negative.

Good luck with your decision. Hope all will work out well. It should, young age is always a good ally as one goes through treatments.

yougogirls

Hi everyone- Just wanted to say thank you again for your help. Also to give an update on my status, in case there's anyone else on the same boat, or this helps anyone in the future.

I opted for the bilateral mastectomy with recon, and I'm now 2+ weeks out of surgery. Happy to report, I feel pretty good Worst part had to be the drains for a week, but recovery wasn't half bad from there. When I made the decision to do BMX (not radiation), I asked my doctor for an MRI of my breasts to confirm I could do the nipple-sparing procedure without concern of retaining any cancerous cells near the aureola.

Thankfully, the MRI came back clear. They also didn't see anything suspicious that might require lymph node removal, so I didn't have that done either. Glad I asked about the MRI-- it definitely was a huge relief for my peace of mind. Final pathology after BMX surgery also came back clear, phew.

In any case, getting my 2nd expanding tomorrow which hasn't been the most fun experience, but I'll take it. I'm sure I will be asking many paranoid crazy questions about that stuff in the near future, haha.

Thanks again sisters for the insight. This forum has been an amazing resource.