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Need some comforting...

Hi all,

I've been experiencing a slow but steady increase in Staging since April 19. Started out as small, easily treated etc., but since then tests, surgery, waiting and more tests, each coming back with worse and worse news (many of you are probably familiar with this story).

Tomorrow is the end of the road and I go for scans to look for distant spread. If I'd known then what I know now I'd have borrowed or stolen any amount of money to have those scans done out of pocket right at the start. I'd have either saved a lot of time, or at least eased those worries somewhat.

Anyway, I have a telehealth apt with oncologist on Thursday to go over the results.

Given that every test has come back with worse results than the one before I'm pretty sure I know the outcome.

So can anyone say something encouraging/hopeful for me to keep repeating to myself between now and Thursday morning? And after, come to that? Anything at all???

My oncologist has so far been useless in that department. I'm looking for a new one. Maybe she'll rise to the challenge, but in the meantime I'd love to just have someone say don't throw in the towel yet even if this comes to the very worst. There is hope because….

I suppose I should post this on the other forum, but I don't know for sure I'm there yet and I'd really like something to hold on to until Thursday.

No bad news stories please, although my experience here has been that no one would ever do that.

hugs to everyone.

S.

****

IDC 2005 - pre-adjuvant chemo, axillary dissection, post-chemo surgery pathology NED, DXT.

April 19 this year - ILC contralateral breast. Partial mastectomy - 6.8cm, with invasion to skeletal muscle and skin. One sentinel node +ve, one -ve. HR+ve HER2-ve Ki67 - 47%

Comments

  • moderators
    moderators Posts: 7,693

    Hi @londongirl99,

    We're so sorry for all you're going through. We know it can be so taxing when the information you receive continuously seems worse and worse. Just know that once you have all of the information in hand, and get a concrete treatment plan in place, you should start to feel a little better. Knowledge is power!

    And, no matter the results, please know we have so many incredible members here who have faced all kinds of downs, diagnoses, surprises, and upsets — and are still here thriving. While a breast cancer diagnosis is never ideal, there ARE treatments — no matter what stage you end up being — to treat or manage the disease.

    Try to not go to the worst case scenario. We know it's easier said than done, but a little positivity could take you a long way — and we'll be right here by your side the whole way!

    Please keep us posted as you learn more. Sending hugs!

    —The Mods

  • kaynotrealname
    kaynotrealname Member Posts: 346

    I am so sorry. Of course you're panicky. The wait is excruciating even as there's nothing you can do about it. My encouragement would be that even stage 4 patients now have hope. No, not realistically for a cure. Yet. But there's so many studies going on right now that I wouldn't be remotely surprised to see something quite powerful come down in five years or less. Shoot herceptin, which according to your bi-line you would qualify for, is huge for HER+ cancers. It's been a game changer immunotherapy thrusting triple positive to actually be the ones with the best prognosis out of all the breast cancers. And 20 years ago, it was one of the most horrific diagnoses. Just try to hold until all the results are in. Hopefully it's still just local spread.

    By the way, we'd all feel like you do in your circumstances. My wait time from start to finish to find out what I was dealing with was three weeks. And in that three weeks I lost 10 pounds and was literally curled up in the fetal position in my closet for a lot of it. It's mental and emotional torture. So you're expecting something bad because that's all you've felt for months now. But that doesn't mean you'll be told something bad on Thursday. It feels like a pattern but in breast cancer world that pattern can end at anytime. And by the way the months you've been waiting have been criminal. Nothing to do about it of course. No health care system seems to be perfect. But I hate that you and so many others are gong through this right now. But you're just about done thank goodness. And then you can finally start taking care of this thing. Many hugs sent your way.

  • lillyishere
    lillyishere Member Posts: 769
    edited July 2023

    Londongirl, check this out. As you can see, this post is from 12 years ago and women have been living for over 10 years with ILC:

  • luluh
    luluh Member Posts: 20

    Hi Londongirl99,

    You possess incredible strength and resilience within you, and you are not alone. Trust in your ability to navigate through this challenge. Remember that you have faced uncertainties before and emerged even stronger. It’s hard not to get ahead of yourself so just breathe and focus on the next outcome. Hold onto hope and remain positive. Remember that you have the inner resources to face whatever comes with grace and determination.


    Lulu H

  • iamnobird
    iamnobird Member Posts: 229

    Hi Londongirl.

    This post resonates with me because I was in your shoes just a few months ago. I had an upstage at surgery from Stage 0 to Stage 2. And even before surgery, each scan and biopsy had revealed something worse. I actually tried to avoid the FDG/Pet scan by cancelling it until my oncologist made it clear that he didn’t view it as optional and strongly suggested we do it before starting chemo. So, I did it, and in my case (1 of 2 nodes positive at surgery), it revealed no further spread or metastasis.

    Anyways, I just wanted to respond and say that I get how terrifying it is. I also have an aunt who is 80 now and has been living as stage 4 for 20 years. She has hormone positive ILC. She has been living well with a high quality of life. So, I always keep her in mind when facing scary stuff.

    Anyways, today is the day and I hope you get all of the answers and reassurance today from your oncologist.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Ooooh! Thank you, Bird! It's always encouraging to see someone living so well with a stage 4 diagnosis. Just goes to show you what proper care can produce.

  • homemom
    homemom Member Posts: 790

    I think most of us went through that as you go through your diagnosis journey. I was stage 2a after my biopsy because the tumor was <2cm. When they did the lumpectomy, they didn't get clear margins and there was cancer in my sentinel node. Next surgery they took out nodes under my arm and they found another positive node. I had two nodes "highly involved" and two with "a spec" in them. They didn't used to count those, but now they do, so I went to stage IIIA because I had four positive nodes.

    My PET scan was a positive thing, just one nodule on my lung which the dr's office said was totally normal. It's a real roller coaster ride, but once you get into treatment the stress is much much less!

  • londongirl99
    londongirl99 Member Posts: 23

    Thank you all.

    A long day of course - bone scan and 2 CTs. Even my husband slept for an hour after we got home.

    This time I made a point of telling the techs right away that I have a lot of anxiety. I've never done that before, and I think it helped. They would have been kind anyway I'm sure, but it probably helps everyone to know that I may look like a quiet little old English lady - (well, I'm only 63, but all these medics look about 16 to me now), but actually Little Miss Hyper is lurking - ready to freak out at a moment's notice 👾 👿. hahaha!!! Surprise!!!

    I also made a point of being chatty and nice to random people in the hospital while I was there. Long conversation with 3 of the volunteers. Helping a lady who didn't seem too steady on her feet. There was a couple with a woman in a hijab who looked as nervous as me and was following around the same path in the radiology department. We kept meeting up in all the waiting rooms. She wasn't talkative, but we exchanged smiles and wished each other good luck. And finally a 'bloke' who overheard our accents and turned out to be from England originally as well.

    I don't know how I'd be doing this without all of you.

    I've been on other message boards once or twice in the past - and this is the absolute best and most supportive and wise.

    Thank you to Mods as well for all you do on the boards, and behind the scenes.

    Now on to tomorrow morning.

    S.

  • iamnobird
    iamnobird Member Posts: 229

    Thinking of you today Londongirl and hoping all goes well at your appointment.

  • londongirl99
    londongirl99 Member Posts: 23

    So - we almost couldn't believe it - but all the scans were clear!!!!!! I am walking on cloud nine (which is kind of weird given that the news means I'll now get chemo).

    Still a long way from being out of the woods, but my heart is so much lighter. Just being able to tell the kids and my mum something positive for a change, was a blessing in itself.

    Thank you all. I'd printed out this thread and been carrying it with me through the last couple of days.

    It makes the world of difference to know we're not alone.

    Blessings and hope to all you of you also.

    S.

  • laughinggull
    laughinggull Member Posts: 509

    Fantastic news londongirl99! Enjoy your weekend and thanks for sharing.

  • kaynotrealname
    kaynotrealname Member Posts: 346
    edited July 2023

    Oh I am so happy for you, London!!! Yes I realize it's weird to say that when you still have breast cancer but I am saying that nonetheless. Early stage for the win!! Now onto treatment and you can finally start battling this thing and feeling like you're getting control back. Good luck and have a lovely weekend :)

  • lillyishere
    lillyishere Member Posts: 769

    This is great news! I'm so happy to hear it. You probably will be hearing soon the treatment plan. Why do you think you'll need chemo? What is your oncotype? ILC has a low Oncotype and most likely it is low grade.

  • iamnobird
    iamnobird Member Posts: 229

    I am so happy to hear that!

  • londongirl99
    londongirl99 Member Posts: 23

    Hi Lilly - it is low grade, but unfortunately due to other factors, it's IIIB and oncotyping isn't indicated for that. It's just a case of throwing the kitchen sink at it!!

    Can't wait to get started and get through it. Maybe I'll experiment with not coloring my hair any more when it grows back. There could be an upside to this. Well, maybe not. oh well.

    hugs,

    S.

  • lillyishere
    lillyishere Member Posts: 769

    Londongirl, you are right, throw everything you can now so you'll reduce the risk of future recurrence. Are you seeing the same MO? Is your team helpful?

    As you can imagine, you have the whole crew in here sending you good vibes. 😘

  • londongirl99
    londongirl99 Member Posts: 23

    Hi - yes, I had a bit of an upset with the MO, but we worked through it and relationship is on firm footing. I trust her, and the team is great.

    Nurse navigator called me today and we are on the way to getting this all started. I've said as soon as possible. Blood work tomorrow, echocardiogram asap, then port and off we go. The nurse has 20 years of experience and was very focused on making sure I have help in every way.

    And - the whole crew in here is invaluable. We all make a great team.

    S.