Feelings

B-A-P · July 2018

Since being diagnosed I've had great support. Sometimes I feel scared for the future and other times I feel like there's so many others here with a worse/scarier diagnosis that I shouldn't complain. Right now I'm in the middle of trying what to decide what treatment I should go for if any (already had lumpectomy ) , and I know I'm fortunate enough to have somewhat of a choice (between meds or rads) , but I'm super conflicted.

I could take tamoxifen , feel like garbage , but only have protection for maybe 15 years (then I'd be 45 ) , but it's an extra 15 with hopefully no issues. But, it isn't a total preventative

Or could do radiation , but it protects one breast , and not a guarantee , and can deal with long term problems (like future cancers ) , but this might solve my problem forever

Or I could monitor.

It doesn't seem like any option is good.

But , like I said. I don't know if I'm entitled to feeling this conflicted and upset about the diagnosis when dcis is often downplayed so much because of the prognosis and inability to spread.

It's tough to know how to feel.

VegGal · July 2018

You could also do a BMX. No exposure to radiation or need for Tamoxifen. It is an aggressive approach, but gives the greatest chance for long term resolution.

B-A-P · July 2018

hi yes, I'm leaning that way . I'm going to ask about that option as well but they haven't even put that on the table . I tried asking at my first appointment and they had said if I was High risk for recurrence or my MRI shows more areas then that's what the tx would be. I've been talking to another member privately , and she said some oncologists won't mention it unless you ask for one. So I think I'm gonna have to have a chat at my next appointment which isn't for a while yet.

I think I'm also struggling with the fact that many Drs have told me this is a pre cancer so it almost makes me feel like I'm ridiculous for evening worrying or making this a big deal. But it is a big deal to me.

B-A-P · July 2018

also it looks like you have A very similar dx as me (in terms of size and grade ) . How did your team lay out your options? Did they suggest mastectomy or did you ask? What was you main deciding factor if you don't mind me asking ? How was the surgery/recovery?

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smorr · July 2018

Stage 0. Well. That is about the best anyone could hope for. That sucker doesn't have a change.

I know it's difficult not to allow your mind to go to the darkest places.

A friend was dx stage o about 20 years ago. She took Tamoxifen. She has had no recurrence. She is doing well.

VegGal · July 2018

My tumor was grade 2 and only 6 mm. My breast surgeon did present it as an option, which is good as I had decided that's what I wanted. She was thrilled when I told her my decision.

Doctors say stupid shit all the time because they think it makes us feel better, and helps them feel more in control. DCIS is very much a cancer, just one that hasn't spread beyond the ducts. Put our cells out into the breast tissue and BAM we are suddenly getting chemo!

You may need to seek some other opinions. Go to an NCI designated cancer center if possible. Explore nipple and skin sparing surgery. At your age (so sorry about your young age) a very good cosmetic result is very much a possibility. I am 55 and look better than before my BMX so I know what's possible.

Good luck! Take your time and don't settle for anything less than what you feel is right for you. The docs work for YOU!

Lula73 · July 2018

if you’re considering mx, and since you’re young, have you thought about reconstruction and what kind (implants or natural tissue)? Here’s a link to a great resource on mx and recon that’s good for anyone having mx and/or recon no matter we’re you're going to have it and who the surgeon will be. The center that made the video is where I traveled to for mine and my results are fabulous. I’d do it again in a heartbeat. There are 2 parts to the video with the first focusing on mx and the second on recon. The link is for part 1 and from there should be a link to part 2. Feel free to ask any wjestions

https://www.breastcenter.com/2018/05/01/i-wish-id-known-dr-ordonye-speaks-to-ypo-about-modern-breast-cancer-care/

B-A-P · July 2018

thanks to you both for the reply

I'm In Canada so there are no NCI centres. Basically for me to have the option , the surgeon has to deem it medically necessary . Which I think it is. I have my radiation oncology appointment in about 3 weeks so I'm going to give the benefit of the doubt and Hear her out. I'm still going to bring it up. I brought it up to the medical oncologist but it seemed like the only way they'd consider it is if my MRI shows more lesions . But I Half chickened Out directly asking for one . My surgeon is great but I know she may shut me down . She's very matter of fact and opinionated. The other breast surgeon missed my issue all together and told me my problems were from drinking caffeine *eye roll* had I listened to him and my asked for a second opinion I wouldn't have known about my dcis.

Veg-my tumour was 6mm too. So we had the same dx it seems

I will also look at the video as well on reconstruction ! Thanks for the info

VegGal · July 2018

Being in Canada is a worry. It seems they like to be very conservative with the scalpel. You might start sending out feelers for more progressive surgeon recommendations.

I never had an MRI. Once I saw the surgeon we just went with that. I never saw an oncologist either, and I was at an NCI center.

Keep us posted. Sounds like things will start to shape up for you in just a few weeks.

Dhanno · July 2018

Hi VegGal I feel so happy to read that your reconstruction looks good .It must be a great feeling after coming out of daunting ordeal of cancer treatment .

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