Newly diagnosed - Triple Negative - Chemo underway - Family history
KRW
Member Posts: 17 ✭
Hi everyone,
Well this is the group you really don't want to join, but it appears to be a great resource and source of support, so here goes.
I was diagnosed with a triple negative tumour in my left breast on 9th May (grade 3), following a biopsy. I count myself lucky in that I have been part of a High Risk Breast Cancer Clinic at RNS Hospital since 2018, when I found I had the BRCA2 gene mutation. I have a strong family history of breast cancer, with my father having breast cancer at 64 and ultimately passing away at 68 from secondary cancers (way too early - he thought he could massage away the lump). His mother had breast cancer as well and my mother had ductal breast cancer in her 70's. So the annual mammograms, MRIs and ultrasounds since 2018 may have been a nuisance, but they picked up this cancer. I knew something was up when they did the mammogram and kept on calling me back into change again for another scan and then bringing forward the ultrasound appointment, where they did the biopsy. I am going to remember the call I received from the breast specialist's office saying that I needed to come and see the specialist "today" - no delay. I burst into tears and knew straightaway. I'm ahead of my parents in having been diagnosed at 59 - thinking of postponing my big family celebration weekend away in late July until after all this!
Quickly into an oncologist and the treatment plan set up within a week. Because of the triple negative category, I'm starting with 6 months of chemo - first 3 months weekly sessions of Pembrolizumab ('the' new immunotherapy drug my oncologist says has only been approved in the last few months), Paclitaxel and Carboplatin - then 3 months of 3 weekly cycles of Pembro, Doxorubicin and Cyclophosphamide. Following that, they hope the tumour will have shrunk and they will then do surgery to remove the remainder - with the decision then on a lumpectomy or mastectomy. Radiation is a possibility after that. My twin sister (same genes of course) had a double mastectomy as soon as she found out we had the BRCA2 gene in 2018 and her initial reaction was to 'get them off' - but I'm following the treatment plan suggested - and I think a bit grateful I don't need to make that decision yet.
I am down 2 weeks of chemo. The side effects I've experienced so far are the usual fatigue (have been trying to work in mornings, but I'm quickly realising that's even hard), inability to sleep the first few nights (the steroids I understand), yukky mouth sensation, slight nausea in morning with cooking smells, some slight rash spots on face - and the worst, the bloating/constipation (I won't share the details but I'm quickly realising I need to change up diet and liquids).
I don't have any great questions just yet, but look forward to interacting with you all in the future and thank you in anticipation. Sorry for the essay. Kathy
Well this is the group you really don't want to join, but it appears to be a great resource and source of support, so here goes.
I was diagnosed with a triple negative tumour in my left breast on 9th May (grade 3), following a biopsy. I count myself lucky in that I have been part of a High Risk Breast Cancer Clinic at RNS Hospital since 2018, when I found I had the BRCA2 gene mutation. I have a strong family history of breast cancer, with my father having breast cancer at 64 and ultimately passing away at 68 from secondary cancers (way too early - he thought he could massage away the lump). His mother had breast cancer as well and my mother had ductal breast cancer in her 70's. So the annual mammograms, MRIs and ultrasounds since 2018 may have been a nuisance, but they picked up this cancer. I knew something was up when they did the mammogram and kept on calling me back into change again for another scan and then bringing forward the ultrasound appointment, where they did the biopsy. I am going to remember the call I received from the breast specialist's office saying that I needed to come and see the specialist "today" - no delay. I burst into tears and knew straightaway. I'm ahead of my parents in having been diagnosed at 59 - thinking of postponing my big family celebration weekend away in late July until after all this!
Quickly into an oncologist and the treatment plan set up within a week. Because of the triple negative category, I'm starting with 6 months of chemo - first 3 months weekly sessions of Pembrolizumab ('the' new immunotherapy drug my oncologist says has only been approved in the last few months), Paclitaxel and Carboplatin - then 3 months of 3 weekly cycles of Pembro, Doxorubicin and Cyclophosphamide. Following that, they hope the tumour will have shrunk and they will then do surgery to remove the remainder - with the decision then on a lumpectomy or mastectomy. Radiation is a possibility after that. My twin sister (same genes of course) had a double mastectomy as soon as she found out we had the BRCA2 gene in 2018 and her initial reaction was to 'get them off' - but I'm following the treatment plan suggested - and I think a bit grateful I don't need to make that decision yet.
I am down 2 weeks of chemo. The side effects I've experienced so far are the usual fatigue (have been trying to work in mornings, but I'm quickly realising that's even hard), inability to sleep the first few nights (the steroids I understand), yukky mouth sensation, slight nausea in morning with cooking smells, some slight rash spots on face - and the worst, the bloating/constipation (I won't share the details but I'm quickly realising I need to change up diet and liquids).
I don't have any great questions just yet, but look forward to interacting with you all in the future and thank you in anticipation. Sorry for the essay. Kathy
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Comments
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Golly gosh, @KRW - you & your family have had a hard time of it xx. I hope you continue to have minimal side effects from the chemo & that it does the trick & reduces the tumour xx.
Jump onto this thread & consider joining the Private Group for those with Triple Negative BC, as it is a specialised BC and you can read up on other’s comments and also add your own. It is totally private - only members who've joined the group can see see the posts.
https://onlinenetwork.bcna.org.au/group/30-triple-negative-breast-cancer-tnbc
Also, have a look at this thread … it has a lot of ‘other stuff’ on the forum that you may also be interested in …. Off topic threads like Pets, Gardens, art & craft, and even funny bits (as we all need a laugh now & then.)
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest
take care & all the best1 -
Hi KRW, welcome to the group. 26 years ago, at 39, I was also diagnosed with Triple Negative. I went through 6 months chemo and then a mastectomy. Tested positive for BRCA 2 in 2014 when my sisters also developed breast cancer (6 of us out of 7 girls) which prompted the familial cancer interest. Those of us that had lumpectomies ended up with metastatic cancer, and now I have completed chemo again and another mastectomy for the other breast as cancer (different tumour type this time) reappeared last year. My surviving sisters and I have also had our ovaries and fallopian tubes removed which may be something you will be offered. I am now on an aromatase inhibitor for at least 8 years….so you can see there are certain similarities..For the constipation, my McGrath nurse suggested eating pears as evidently they are wonderful for that issue (and they have worked for me..) Tap into the special group previously suggested (Triple Neg.) as ongoing treatment is somewhat different to other tumour types and there are many who can share their experiences and “what worked for me” stories. P.S. I love reading “essays”!2
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@arpie thanks so much for your lovely comment and suggestions. My 'story' has an added cancer element I didn't include - during Covid I found I had surgery on a lesion in my liver which turned out to be cancer. Thankfully it was caught early, surgically removed and no other treatment was required. They don't believe the breast cancer is linked to that and it is just 'coincidental'. I'm still counting myself lucky in relation to the liver cancer - I only went to the hospital with stomach pain after a Covid vaccination when it was spotted. Joined the Triple Negative BC Group on sign up but need to go back now and check it out more. Thanks again.1
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@Mareealso Thanks Maree for your response and wow, what a family history you have as well. I'm from a large family as well, though not that large. I am one of 5 and as well as my twin sister having the BRCA2 gene, my middle sister does as well. My eldest doesn't and I don't think my brother has still had himself checked - although we have strongly suggested, given our dad's cancer. At the time we found this out, the three of us 'girls' have our ovaries and fallopian tubes removed (it made sense and we were a lot older than your initial diagnosis).
That's an interesting comment about the lumpectomies and the metastatic cancers - food for thought. Who knows, after I get through the chemo, I may be jumping at the chance to just "take them off", as I may never want to go through this again.
Thanks for the tip re the pears. I've always liked pears and the other morning I had my son shoot off to the supermarket for pears and pear juice, as I read up that might help. It is funny, as I've always been a herbal tea person, but they're just not tasting the same now - so instead, I've been putting a little pear nectar in a mug and topping it up with hot water and it has been going down well. Really appreciate your thoughts. Have a nice day and hoping all is going well for you in your post recovery after the second incidence.1