Feeling a little lost

Hi Ladies,
I was diagnosed with locally advanced triple negative IDC last October. Started chemo in November and just finished the last round on Friday.
Chemo started with paclitaxel weekly + carboplatin 3 weekly. I picked up a bunch of side effects on the way but pushed through. AC was next and while I didn’t have as many side effects, I feel really down for about a week after. I guess I’m almost over that hurdle now.
Surgery is next - unilateral mastectomy and auxillary clearance. While I can sometimes be practical about it all; yeah we’re taking the cancer out; I just find myself feeling so low, and just crying so much and just don’t know what to expect when I wake up from surgery.
Reconstruction will be delayed as I have to do radiation. And I don’t even know if I want reconstruction - if radiation affects the skin too much, my only other option is DIEP and that is just a whole lot of scary to me.
And then there’s all the other worries - what if I’ve done all this and I still have cancer. What if it metastasises, will I have to be on medication forever? How long will I have to live? I’m only 38.
I was diagnosed with locally advanced triple negative IDC last October. Started chemo in November and just finished the last round on Friday.
Chemo started with paclitaxel weekly + carboplatin 3 weekly. I picked up a bunch of side effects on the way but pushed through. AC was next and while I didn’t have as many side effects, I feel really down for about a week after. I guess I’m almost over that hurdle now.
Surgery is next - unilateral mastectomy and auxillary clearance. While I can sometimes be practical about it all; yeah we’re taking the cancer out; I just find myself feeling so low, and just crying so much and just don’t know what to expect when I wake up from surgery.
Reconstruction will be delayed as I have to do radiation. And I don’t even know if I want reconstruction - if radiation affects the skin too much, my only other option is DIEP and that is just a whole lot of scary to me.
And then there’s all the other worries - what if I’ve done all this and I still have cancer. What if it metastasises, will I have to be on medication forever? How long will I have to live? I’m only 38.
I’m just so lost and afraid.
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Comments
You can drive yourself completely up the wall with what ifs. Best to stop. Worrying about one thing at a time is quite enough right now, preferably things that have happened rather than things that only might happen. If you are not sure about reconstruction, then a delay is a good thing, gives you more time to think about how you feel
post surgery and what you really want. Getting through chemo is a big achievement, many find actual surgery easier by comparison. It’s worth trying to get some time to stop
the world spinning and maybe to get some guidance in dealing with the emotional side of cancer. Everyone concentrates on treating your body, for obvious reasons, but your emotions and feelings are hugely affected by both the diagnosis and treatment and some professional
counselling can really help. It’s important and often overlooked. Your GP can assist with a referral.
When you wake up from surgery, you’ll have completed the lion’s share of your treatment. You’ll have some adjustments to make but life is full of them. Give yourself a pat on the back, celebrate even. Life is precious, too precious to waste any of it in what ifs. Best wishes.
I’m not going to sugarcoat it, being lopsided has its drawbacks and it can be quite an emotional time at first.You can always think about reconstruction down the track as it can all be abit overwhelming to have to decide now. I recommend listening to the podcasts by Dr Charlotte Tottman on this network-“What you don’t know about breast cancer until you do” She’s a psychologist who got breast cancer herself. You are not alone- many of us have been through this crap bc journey. Big hug xx
from jennyss in Western NSW
” Feeling a little lost” after a BC diagnosis is perfectly normal.
You have come to the right place in this forum - we all “ get it” and no question is ever too trivial or silly and you can vent away till the cows come home!
I never cried to much in my life as when I was diagnosed.
But it WILL get better.
I decided to start a journal and write down my feelings plus medical stuff and milestones.
I was reading back over it the other day and liked this entry “ Got back from my week down the south coast and realised I hadn’t cried for a whole week”. That was a holiday I treated myself to at the end of my radiotherapy ( 4 months from diagnosis).
I ended up having a double mastectomy ( skin sparing) with delayed DIEP flap surgery.
I am now 5 months post that surgery and 18 months post diagnosis.
I have made some adjustments to my life but am pretty happy with my “new normal.”
Prognosis for breast cancer is good compared with other cancers so in the end you can’t let the “ what ifs” rule your life.
I had a couple of session with a psychologist specialising in cancer related stress early on and that was helpful .
I also found the podcast listed above in the “announcements” by Dr Charlotte Tottman excellent .
Take care.🌺
There's a helluva lot going on physically and emotionally!
Great advice on offer, please wear this forum and website out searching for info, when you are ready!
A visit with a Psychologist will help put your thoughts and steps in a semblance of order that helps.
I was told if you are starting to feel overwhelmed pat yourself on both legs and then arms, saying this is me.....it brought me into now and washed the anxiousness away!
There's a great website with regard to reconstruction and also a list of what to pack for Hospital. Us forum users contributed to formulating the list
https://www.reclaimyourcurves.org.au/
Also this link
http://knittedknockersaustralia.com/
Lots of info available
https://onlinenetwork.bcna.org.au/discussion/23810/triple-negative/p1
Take care and best wishes
As to radiation that doesn’t hurt at all. You just lie on a bed every day and they zap you with a big machine. You can’t feel it. It’s like having a scan. Keep rubbing in the creams a few times a day to protect you from peeling/skin breakdown . with a mastectomy they might give you a big silicone patch to protect the skin. You might feel a bit drained towards the end and afterwards for a few weeks.
Everyone gets scanxiety after their initial treatment, but in a way I look forward to the scans, because I’m more afraid of them not finding something early enough. If they find something they can treat.
I was lucky enough not to have to have chemo, but from others reports I would imagine it’s the worst part and you are already over that. I’m sure it would make you less emotionally resilient too, so as you get stronger after it you will probably feel less teary.
I hope that helps and I wish you all the best with the rest of your treatment, feel free to ask questions! 🤗