Baby Steps
Having discovered a lump in my breast during the early weeks of my second pregnancy, I offhandedly thought it was just due to hormonal changes. Thankfully I mentioned it (only in passing) to my obstetrician during the first visit and he suggested I undergo a few tests - just to be sure. During what should be one of the happiest experiences of life, I soon found myself simultaneously facing one of the most frightening. Being both pregnant and diagnosed with breast cancer has been terrifying and oftentimes isolating. So much information is now available about breast cancer and pregnancy independantly but combining the two can be like finding your way through a jungle of opposing views. What's more, I have discovered that telling others about my pregnancy and the cancer has subsequently put me into a position of having to justify and then assure them its Ok for me to have chemotherapy whilst pregnant. I am still on my path (both of us coping really well so far!) and am hoping to share experiences with other similarly navigating through this maze of mixed emotions.
Comments
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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 :-)
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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 :-)
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Hello!
Thank you so much for your lovely post. I can certainly relate with your experience and it is again refreshing to know that someone else has "been here done that" and come through it all OK - complete with a healthy bub.
I have just had my third session of chemo on Monday and am doing really well. I have still been able to work most of the time (just taking a few days off for my treatment) which also has helped keep me grounded. It is indeed a rollercoaster but I do think, like others that I have heard from, that the pregnancy strangely seems to help you deal with the chemo better? Ironic, given we spend so much of this time so very carefully watching what we do or do not consume to help support the growth of a new little life! I do believe that this little blessing is helping keep perspective on everything too and I am convinced that attitude is a significant contributor to how you cope in the midst of this journey.
Looking forward, at present I have one more round of chemo to complete (on the 20th December so finished in time for Christmas - hooray!) and then will need to undergo further surgery in January. Scheduled for 19th January but at this stage we are still deciding the best approach. Unfortunately my margins were not clear from the lumpectomy so there is discussion as to whether it is feasible to go back and try taking "a bit more" - then having to follow-up with radiation after the little one is born - or doing a mastectomy with immediate reconstruction. Having been a generally healthy person to this point the frequent doctors and hospital/surgery trips is a bit overwhelming. There is also the vanity about looking disfigured after all of this. Ridiculous that this should be so important but it just is.
I have been fortunate in a few ways through all this compared to your story though. Firstly, I have managed to hang on to some of my hair. I have lost about 2/3rds of it but had so much to start off with that if you didn't know me you would think I just had fine hair. I am conscious of it but given I would otherwise be completely bald - really can't complain. The other thing is that my "team" of specialists have been brilliantly working together. I do feel quite blessed in this regard knowing your story. It must have been very confusing and upsetting at times for you being treated as almost two separate people with two separate conditions at times. You can all too quickly feel lost in this maze and knowing that there is a group of people who review my case regularly really does keep me focussed that I just have to go along with them on the ride. Such a blessing! It is also why there has been so much discussion about what is best surgery-wise for me next. I am personally not too keen on the radiation therapy (would really like to get this over and done with so I can just focus on the new little life once he/she arrives). To me the radiation therapy just adds more time and treatments to the calendar. The mastectomy does bring its own fears though. I am hoping they might be able to do one and preserve the nipple so aesthetically it is not so noticeable. My surgeon has also said he would do it as a transfer from my back muscle (since my stomach muscles are currently otherwise "engaged").
It is all a bit overwhelming but hearing stories such as yours do remind me that I am not alone and that others HAVE faced this juggle, and the wealth of decisions required, successfully. Thank you so much for your lovely reply. It is greatly appreciated. I do hope that in sharing our experiences others, who may just be starting this road, can do so knowing that it isn't all bad and in some ways, having a little life to focus on can be just the breath of air you need to keep you going!
So lovely to "meet" you!
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Thank you for creating this Group, Pink Dawn. And thanks for adding to it Pees and twoofus. I'm so pleased to be able to read your stories and gain some insight (even a little comfort). I hope you (and your bubs!) are all doing well.
I had a full mastectomy of my right breast 3 weeks ago (when I was 19 weeks pregnant). I still haven't been able to confront the wound head-on in the mirror (I'm already suffering some kind of Frankenstein complex), but I'm sure the day will come soon.
In the meantime, my husband and I are trying to get our heads around chemotherapy and the implications for the baby. My oncologist wants to start me on Fluorouracil, Adriamycin, and Cytoxan (FAC) next week. She's chosen Adriamycin because apparently it's the one most widely tried-and-tested on pregnant women. What concoction were you given????
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Thank you ladies for creating this group. I had a lumpectomy on the 12th March 2014 at 16 weeks and am currently awaiting the results. Nervous times at the moment waiting to hear whether the margins and the two nodes they took are clear. Nodes were within the margins.
Then there's the next step - treatment!! Chemo has been suggested so it has reassuring to read your blogs and discover that your bubs are healthy after every you've been through. My cancer in Oestrogen receptive so it looks like I'm in for hormone therapy down the track as well. Has anyone been on this?
I realise that your posts were some time ago, but if by chance you happen to pop back on I'd love hear how you are all going.
Staying positive and healthy for the moment :-)
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Thank you ladies for creating this group. I had a lumpectomy on the 12th March 2014 at 16 weeks and am currently awaiting the results. Nervous times at the moment waiting to hear whether the margins and the two nodes they took are clear. Nodes were within the margins.
Then there's the next step - treatment!! Chemo has been suggested so it has reassuring to read your blogs and discover that your bubs are healthy after every you've been through. My cancer in Oestrogen receptive so it looks like I'm in for hormone therapy down the track as well. Has anyone been on this?
I realise that your posts were some time ago, but if by chance you happen to pop back on I'd love hear how you are all going.
Staying positive and healthy for the moment :-)
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