Thanks SO much for starting the group! I looked on a month ago and thought we really need to get one going! And here it is started by you who is well and truly immersed in it all at the moment - thank you. Love the name too!!
My heart sinks when i hear of those diagnosed during pregnancy but like Pees I'm excited to hear from others in the same situation. It feels like you are the only person in the whole world going through it at the time and I found there is not much support to be had from other expectant mums (many are fearful of you and I think some feel you might jinx them with breast cancer just from sheer proximity!)
There seems to be more of us in this situation but there is definitely a gaping hole in terms of finding information, support and sources of hope to get through what is essentially an agonising time. Everyone's situation is unique but I hope that for those of us who have got through the pregnancy side of it we can be there for you in some small way.
I was diagnosed in Dec 2008 at 24 weeks pregnant. I had a mastectomy 2 days later. Chemo started a few days before Christmas and I had 3 rounds before my son was born, 100% healthy, in March 2009 (38 weeks!). I was able to breastfeed him partially for 3 weeks before i resumed chemo (something i was initially told I wouldn't be able to do). Then had 3 more months of chemo and Herceptin (which i have now chosen to continue for a second year). I got through chemo really well while pregnant too... aside from feeling a bit tired for a few days afterwards... it was just the whole bald, boobless, disfigured thing that was a bit of a problem for me!
There was a real disconnect between my ob and my oncologist - they each felt comfortable that the other one was doing there bit and didn't want to encroach on the others' territory, but in retrospect i think some kind of formalised shared care plan would have helped - if only to assure me that they were both on the same page. I sought a second opinion from a surgeon with a special interest in pregnancy and breast cancer which was very reassurring. She was across the issues and treatments and I felt she treated me as some one pregnant with BC not with two mutually exclusive conditions. We formed a plan and I felt like I regained some small amount of control back over the situation which was completely overwhelming.
I continue to grieve for that time in terms of the losses that were experienced and the utter exhaustion that came from either the decisions that i had to make or that were taken away from me. It is tough when you are trawling for information and re-analysing your decisions all the time too - the worry that is generated seems to spiral out of control.
Thankfully tho alot of those worries didnt eventuate for me... if only i could have them set them aside and let things unfold at the time without continually second guessing my decisions. Easier said than done tho!
I have lots of good news to share - my son continues to be a daily source of hope for me - he is bright and healthy, with no side effects at all from the chemo. My health is stable and my reconstructive surgery has been a fantastic success. I feel like I am somehow slowly getting through all this, which prior to my son being born seemed like such a remote possibility. There is time to enjoy being a parent and plan life again - I wish you all the best for your pregnancy and hope you are both going well.
Am happy to chat any time :-)