It’s back for the third time 💔
Hope 2013
Member Posts: 21 ✭
Hi ladies,
Some of you might remember me. I had DCIs for the first time in 2013 at the age of 22 years old, had a lumpectomy only not further treatment which is something I questioned back then and now still although I was brca 2 positive. September 2017 I had recurrence DCIs again in the same breast my only option was mastectomy only no other treatment needed because my margins were clear. I felt a tiny bump straight after my reconstruction, hoped it will show in my MRI it didn’t. Pointed it out to my doctor had US and they assured me it was a scar tissue, had a follow up 3 months later and it turns out it was a recurrence. Now here I am again Sept 2019 less than 2 years from my mastectomy going through IDC recurrence.
Is it just really bad luck or because of my high risk I should had a lot more than just surgeries?!
This is exhausting.
Had my CT and bone scan and thankfully everything came all good expect for my ovaries being larger than normal. Meant to have pelvic US but because am not sexually active and never had anything going up there the doctor didn’t feel comfortable doing it neither did I. The thought of doing it freak me out and the thought of not doing it also does, because am not sure if am putting myself at more risk by doing!
Surgery is also next week and I will be flat on one side 😢 as implant will have to come out and more skin removed. I’m hoping won’t need chemo but doubting it.
any advise will be much appreciated 💕
Some of you might remember me. I had DCIs for the first time in 2013 at the age of 22 years old, had a lumpectomy only not further treatment which is something I questioned back then and now still although I was brca 2 positive. September 2017 I had recurrence DCIs again in the same breast my only option was mastectomy only no other treatment needed because my margins were clear. I felt a tiny bump straight after my reconstruction, hoped it will show in my MRI it didn’t. Pointed it out to my doctor had US and they assured me it was a scar tissue, had a follow up 3 months later and it turns out it was a recurrence. Now here I am again Sept 2019 less than 2 years from my mastectomy going through IDC recurrence.
Is it just really bad luck or because of my high risk I should had a lot more than just surgeries?!
This is exhausting.
Had my CT and bone scan and thankfully everything came all good expect for my ovaries being larger than normal. Meant to have pelvic US but because am not sexually active and never had anything going up there the doctor didn’t feel comfortable doing it neither did I. The thought of doing it freak me out and the thought of not doing it also does, because am not sure if am putting myself at more risk by doing!
Surgery is also next week and I will be flat on one side 😢 as implant will have to come out and more skin removed. I’m hoping won’t need chemo but doubting it.
any advise will be much appreciated 💕
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Comments
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It somehow feels wrong to say welcome back, @Hope 2013. You must have hoped never to need this site again.
Your medical team will be the ones to talk to about treatment and whether chemo will be required.
Thinking of you as you navigate this awful disease...... again3 -
Your brac2 gene is not helping and there does only need to be one cell left behind apparently. Yes persistent bloody thing. Now it's IDC they may consider chemo depending on path results that come back.
My heart goes out to you as even the first time round is hard enough for most of us. Please do have a consult with a genetic specialist to discuss all your cancer risks and they will refer as they see fit. An appointment with an onco-gynaecologist should happen also regarding your ovaries being larger and a brac2. It may well ve nothing but you never have too much information about risks I don't think. At least then you are making informed decisions and not just leaving it up to specialist only to decide.
If you do need chemo they will recommend egg retrieval for safety.2 -
@lrb_03 I did indeed, but what can we do life is not fair. Thank you 🙏🏾
@primek I haven’t thought about a genetic specialist but will look into that. I feel like i will go with the pelvic US, as I read that CA-125 blood test are not accurate enough detect any concerns with the ovaries. Appreciate the tips and advise 🌸1 -
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I can't imagine how you're feeling at the moment @Hope 2013. The scans are scary but not knowing is, too so I think you're right to have the ultrasound. I would second @primek in suggesting an onco-geneticist given you know you're dealing with the BRCA 2 gene. I'm not casting doubt on your oncologist but I'm assuming that he/she has experience in treating women with this genetic makeup? Best wishes.1
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Hi @hope2013
I think that you are wise to take any testing that is offered, regardless of your reluctance to go through the pelvic exam. Make sure that who ever is conducting the exam is aware of your circumstances, ask your onc or GP if they will prescribe a sedative if you are really freaking out and keep reminding yourself it is only one day in your life and it could make a huge difference for both your mental and physical health in the future.
The advice on the Onco-gyn is well worth discussing with your current team. The other thing to consider, even though you have more than enough on your plate, is how you feel about your current oncologist. I'm a difficult old bat and it doesn't take much for me to decide I've lost confidence in someone--and that may have nothing to do with their competence, just the quality of my relationship with them. Trust is critical even though I am more than aware that this sneaky mongrel of a disease is monstrously unpredictable and medical teams are pretty dedicated to keeping on top of it. If you haven't already done so, maybe think about seeing a counselor. Sometimes they are helpful; sometimes not so much so. You have a lot to process and you may find the support useful.
I've also had a recurrence (though thankfully just the one) and I can't imagine how it must feel to be so young and to have to be back on the BC train for a third time. It is bad enough the first time. Don't stress too much about the chemo. If you need it, you need it. It passes. Mxx
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This is so unfair and it's so so horrible that you are in this situation again Honestly.... dont be afraid of chemo. It isn't nice, but it's a lot easier than it was ten years ago. I don't have anything more substantive to say but I really do hope that whatever you choose to do works out well for you.
All the best.2 -
@Hope 2013
Sorry to read that you are back on the bc rollercoaster. Great advice has been offered!
Just wanted to wish you all the best with your decisions and hopefully connecting with a Genetic Specialist and perhaps a Counsellor you will find very beneficial. The Counsellor will give you some coping mechanisms.
Take care, sending you a virtual hug
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