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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’m just so lost and afraid.


  • Afraser
    Afraser Member Posts: 4,190
    Dear @ilovewhenitrains

    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. 
  • TonyaM
    TonyaM Member Posts: 2,818
    Hi,I’m sorry about your bc diagnosis but glad you’ve found this network. You are in the thick of it, the dark tunnel where you can barely see a light just yet. It is just so scary  and you are are having the hardest treatment first. Let me say that every bc decision you have to make is an awful one! Some are just too hard to make until you’ve gone further through the treatments. Be guided by what your medical team recommends, do your research and listen to your gut. Although triple negative bc is a worry,it responds well to chemo. I had eostrogen +ve cancer back in 2003 when I was 47. I was horrified to lose a breast so opted for lumpectomy, full node clearance and radiation. It came back in the same spot 7 yrs later so had to have a mastectomy and chemo.- no recon and Tamoxifen for 4yrs.That was 12yrs ago and I’ve been fine-  bc caught early enough and the majority of women live a long life. The recovery for a mastectomy is not too bad physically- you may be left with numbness and a tight sensation.
    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
  • ilovewhenitrains
    ilovewhenitrains Member Posts: 14
    Thank you @Afraser and @TonyaM for your kind words and support. 

    It’s all so very overwhelming
  • jennyss
    jennyss Member Posts: 1,853
    Dear @ilovewhenitrains,

    from jennyss in Western NSW
  • Chrissy1121
    Chrissy1121 Member Posts: 18
    Hi @ilovewhenitrains. Just to share my experience, I was diagnosed Triple Positive in Nov 21 which resulted in a mastectomy of my right breast, all happened very quickly.  I have just finished 12 weeks of Taxol and continue Herceptin infusions every three weeks. I have listened to Charlotte Tottmans podcasts, more than once and I have found them very supportive and informative, I actually think without having listened to them I wouldn't be in the head space I am currently in.  I have been to see my Reconstructive Surgeon twice, he has set out a 4 stage plan for me to digest at my own pace and for when I'm ready and may even go back and discuss again.  So I guess what I'm trying to offer as advice from my experience and what has helped me, is using the tools on this site, talking to your doctors, reading other peoples stories and advice.  Go with your gut feelings, ask those questions that you feel too reluctant to ask Doctors, nurses, anyone as it can be intimidating at times, but just do it and take control, its your body and your life and it starts to build a new sense of confidence you didn't know you had.  I hope this helps in some way. Take care.
  • Julez1958
    Julez1958 Member Posts: 942
    Hi there
    ” 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.🌺
  • ilovewhenitrains
    ilovewhenitrains Member Posts: 14
    Thank you all, as odd as it sounds, it’s nice to hear from others that have been through the same/similar experience - I appreciate you sharing it with me.

  • iserbrown
    iserbrown Member Posts: 5,375
    Love your post name!
    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 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

    Also this link

    Lots of info available

    Take care and best wishes 
  • Halla
    Halla Member Posts: 184
    Hi @ilovewhenitrains your thoughts sound very familiar! I wanted to know exactly what to expect too. 

    In regard to surgery, I had a lumpectomy that took 1/4 of my breast, which apparently was quite a lot for a lumpectomy. It wasn’t nearly as bad as I feared though. It only hurt if I moved, and it got better quite quickly. There was a plastic patch over it that stays on for at least a week, so you won’t  need to see the result until it heals up a bit and you adjust to the idea of it. You will be able to choose whether it’s a temporary flat chest or not after you have lived with it for a bit - that’s good I think. 

    I had a day or two off work , still responding to email queries on my phone but then got up and worked full days from home. It was lockdown so that was normal. 
     I only had the sentinel lymph node removed, but that was enough to cause cording a bit later on - you can get a soft “lymphodoema ball” to roll over the whole area which seems to help a lot. (After the scars have healed a bit, maybe a few weeks.)it’s just a squishy ball like a tension release squeezey ball. 
    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.

    Then once it’s all done, keep all your appointments and scans and if it comes back you will deal with it. But you know - anything can happen to anyone at any time so you just have to accept that illness happens to everyone at some stage  and look after yourself to reduce the chance of recurrence of this particular illness.

    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!  🤗