Initial Meeting with Oncologist

Lilac17

Hi, I was diagnosed with stage 1a IDC and DCIS - both in my right breast in May. The IDC was removed during the core biopsy and I had 3 lumpectomies to clear the DCIS which failed so I had a bilateral mastectomy on August 3. I met with my oncologist yesterday. He talked odds of this coming back over the next 20 years, and my odds weren’t as low as I had hoped for but still lower than some I suppose. He is putting me on a tamoxifen after I heal a bit more and my odds will be cut a bit still.

The odds game really upset me and I’ve cried ever since that appointment. I’m wondering about how others reacted to their odds and how do you begin to live again with this worry on your shoulder. I feel like I’m on borrowed time and I have 4 young kids to raise

Thanks

grainne

you are still reeling from shock and the aftermath of the operation and everything that goes with it. I was exactly the same at first: I obsessed over stats and almost drove myself insane constantly googling. I promise it gets better; ordinary life creeps back up and claims your attention and, impossible as it seems, bc ceases to fill your thoughts.

Post your stats and see if anyone shares them..it is very reassuring to see women with similar stats posting years after diagnosis!

One last thing: did your oncologist mention that regular exercise cuts the risk of recurrence by up to 40%? Nothing is more helpful for mental wellbeing and also for dealing with the side effects of medication. As soon as you can, get out even for a walk.

Keep in touch x

Falconer

Lilac, I understand your feeling of fear. I'm also a mom of three. Both my MO and RO reassured me that mastectomy and hormone therapy are very good treatments against this disease. You're right, they aren't 100% guaranteed, but it does sound like you had early stage disease, which has a high cure rate. I am almost two years past it all, and I'm finally feeling free. You're at the most difficult stage of the process as you're just recovering from surgery. Be gentle with yourself.

bluepearl

Instead of looking at the odds of it coming back, look at the odds of it NOT coming back. Say, at 20 years, it's 13%, that means 87% it won't...and in 20 years, probably sooner, much better treatments if not a cure.

beach2beach

Yes, really important to try to keep the foremost thought that it won't be back. Statistics are just that. You are different from someone else who has the same dx, different genes, different lifestyles etc. I think much of that plays into it also. Do whatever you can do for yourself, exercise, eat well, take care of yourself mind and body..and with 4 young kids I know it's not easy. I think about the long term also. Can't help not to but have to try to keep turning those thoughts around.

Did you have the OncotypeDx test done?

ubershop7

Hi, I am sorry you are going through this. I felt the same way. I am 1 a, no nodes or lvi. After my lumpectomy, rads and BSO for my stage 1 (grade 3) er pr pos, her2 neg early bc, my last visit was with the oncologist. He told me it had a 15-20 % chance of coming back, and that risk would remain constant. Completely took the wind out of my sails for a good two weeks after. He did say that if I took the AI for 5 years, that that would bring the risk of recurrance down to 7 to 10%. We all fixate on that percentage of recurrance, and not the larger percentage of it not recurring. I still have my moments of worry, and I am 2 1/2 years past my initial dx. My mom had stage 2 bc with 4 nodes involved. Dx when she was 58. Lived till she was 90 with no recurrance anywhere.

Celand

Thank you uber shop for telling us about your Mom's bc and her being a 30+ year survivor. Stories like hers keeps my spirits up. Although I am a 2 year survivor, I do think about it coming back from time to time (I was stage 1b). I do have horrible memories of when my Mom passed away from bc in 1976, she was 51 years old. I try to keep in mind that we have so many more treatments available today than ladies on years past. That also keeps me going.

Salamandra

It sent me for a loop too. I feel like the breast surgeon was all about the positive results, and then the less positive info come trickling in after. As far as I can tell, my 15 year survival rate is %85-91, depending on treatment. That really threw me. 15 years just isn't that long (even without a spouse and kids).

But what I'm trying to focus on is that my 5 year survival rate is actually really high. And who knows what kind of new technology we'll have within 5 years! Let alone within 15, and further down the line. That thought comforts me as much as the thought that actually 85% is a lot more likely than not that I'll be fine.

CaliKelly

Wouldn't you bet on a team that had a 91% chance of winning? I would!

Meow13

I recently read that experts believe there is a 22% chance of a devastating 9.0 earthquake occuring within 50 years in the Seattle Puget Sound area. No one is worrying about it, it dawned on me that is about the same odds my cancer will come back. Why was I worrying, it kind of put things in prospective for me.

Wised

Meow 113, thank you for putting these numbers into perspective. 💓