So unsure

Anna LouiseAnna Louise Member Posts: 11
Hi All,
My first time in this forum and to be honest I've avoided anything to do with focusing on my breast cancer. Pink just turns my stomach and I'm angry with my health professionals because I feel like a number to arrive very three weeks for chemo and have nurses unable to find veins and poke holes in me which just makes me wonder what the hell. It's stressful enough without being poked with needles. 5 attempts til they found a vein.
I've been told that I have stage 2 which is neither agressive  nor passive what ever that means and I would like to know whether I will survive or at least is it likely?
I'm meant to have a multidisciplinary team of health professionals who are supposed to discuss an individualised treatment plan but do they meet to work out the best way forward? I don't know.
I'm stressed and anxious and isolated due to poor communication despite my trying to find out prognosis. i feel rushed when I'm with the oncologist. He told me he believed I would benefit from chemo.
What does that mean? To benefit......how? My hair is gone and I'm feeling like I don't want to leave the house.
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Comments

  • AfraserAfraser MelbourneMember Posts: 988
    Being angry is a very natural reaction but it has limited benefits. Without knowing details, it's hard to generalise. Cancer is highly variable and nearly everyone is different, however the following may help:

    I too was stage 2. Five years on, I am well, living a normal life and so far there is no evidence of disease.

    Veins are unhelpful devils, and I swear they run away. But there are procedures and devices that can be used to stop you feeling like a pin cushion.

    Try writing down your questions before you see your oncologist and tell him you want some detailed answers. That's utterly reasonable. He should be able to give you written information on the chemotherapy he is proposing. You will find it daunting but remember lots of people have got through this successfully and not everyone has difficult side effects. The purpose of chemo is to kill off cancer cells. It's hard medicine but it may quite simply return you to health. Which is what we all want.

    This is a good place to talk, ask questions, let off steam. You don't have to explain, most of us have been through the feelings you are having somewhere along the line. Perhaps we can help you feel less isolated, more in control and much more hopeful. Best wishes.
  • primekprimek Broken HillMember Posts: 3,308
    Welcome Anna Louise. 
    Have you a breast care Nurse?. They can sometimes provide a wealth of information and can at times be an advocate during Drs appointments. 
    How many more chemos do you have left? I had a port inserted after round 3.  I only had one tiny vein they could use in my hand, and they prefer hands. As I had weekly taxol (12 sessions)and 12 months of herceptin to go (17 sessions) it was agreed a port would reduce my stress and make the process a whole lot easier. 

    It's awful you feel so isolated. I had someone with me during appointments and chemo, so I had someone to talk to. Is there a local group that can be a source of support also?

    I eventually asked my chance of recurrence. I didn't want to know at the beginning. I know my breast surgeon said the same thing to me about chemo. They were able to put in all data...size, nodes, path...and a formula works out your % of disease free rate at 5 and 10 years. The formula of course can't tell you if you are in the average 90% or the 10% of it progressing. There are many cases of women with poor prognosis living full long lives and ones caught at very early stage who go onto stage IV. It's  a lotto and impossible to tell. The treatment offered gives you the best possible chance of being one of the ones to go on living a long life and helping others following behind. It takes time to believe this. 

    So glad you found us and I hope we can provide answers and give you some support in what is a very challenging time in your life. Kath x
  • iserbrowniserbrown Regional VictoriaMember Posts: 1,714
    Welcome to the forum that most don't want to be part of it but come to appreciate and embrace.  There's always someone on any time of day or night to help you through and I hope you get comfort in reading posts, perhaps offering a comment and eventually accepting the colour pink.  It is, in my view, symbolic!

    Not sure what State you are in to offer suggested groups that you may want to enquire about.  If you use the BCNA website and search engine you will find a multitude of services available in your State.

    As others have said being angry is understandable.  Do you have a Breast care nurse?  What about your GP, to discuss your concerns and find out about resources that may assist and or counselling.  BCNA have nurses that you can speak with.

    Here's a link from the BCNA website that hopefully will give you a better understanding of your type of Breast Cancer
     https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

    Getting an understanding and or talking with a Breast Cancer nurse and or BCNA staff or even us on the forum will help you to formulate some questions so that you won't feel so left out of the loop.

    Take care 
  • ZoffielZoffiel Regional VictoriaMember Posts: 933

    Hi Anna Louise,

    Tough times, the first months after diagnosis. Being thrown into the breast cancer mincer is very hard work, particularly if you don't feel like you have developed any relationship with the people who are treating you. The MDT thing tends to happen early on and only really comes back into play if your situation or treatment changes. They meet, have a talk about you, draw up a plan and then the individual specialists take over.

    Always remember that you can back peddle and ask the questions that you forgot early on. This is all about you, a fact that can get lost in whole mucky business. Take a breath, and have a good think about what is pissing you off then start asking questions to fill in the gaps. You can also change practitioners if you really can't connect with your current one. We probably should do that more often--I went through four oncologists over ten years before I finally found one that seems human. Scientists are often very strange people....

    Regarding the benefits of chemo, most oncologists use a program called 'Predict'. Predict takes into consideration your stage of cancer, other treatments (such as hormone therapy and surgery) and spits out a figure that indicates, as a percentage, the amount of difference chemo therapy may make to your chances of surviving five or ten years. Cheery stuff when the percentages can be miserably low--5-7%--but the expectation is that we want to give ourselves the best chance of survival by taking up any treatments that may help.

    I don't think you will find anyone willing to give you a prognosis about whether or not this disease will kill you. Stage two means that there is a chance of cure, rather than just containment of the cancer so, from that perspective, you are in a reasonably good place. There are never, ever, any guarantees though and people who have been diagnosed with stage one can suddenly become metastatic, stage three can bumble along for years and years and not progress. I think it all comes down to luck, which is a pretty unreliable thing to make predictions on.

    Regarding the hair, if you are felling really vulnerable with that can I suggest going to another town/suburb to shop etc where you are unlikely to run into anyone you know. That can be quite liberating and when you really think about it, a woman with no hair isn't such a novelty in this bizarre world we live in. Anyone looks twice at you, give yourself permission to give them the finger and move on--you'll never see them again anyway.

    It's a shit of a disease and a real lottery. Be kind to yourself. Marg xxx

  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,631
    I just wore a black cap when ever I went out. I needed the warmth of it near the shops freezer sections anyway. Honestly I think I am invisible anyway. Not once in two years of going out with only one boob has anyone ever looked or noticed.

    Re finding a vein, drink plenty of water a few hours before the infusion. When you get there, walk up the road a bit and back to really get that circulation going. Hit the toilet before you go in and take a vest or a bit of a coat to keep you warm. It does get a little chilly in there after a few hours. Sometimes you get a really good nurse who can find a vein right off and sometimes you get those who can't find one, over and over trying. Just the luck of the draw with that one.

    Take someone to sit with you during chemo. You don't have to be a conversationalist with them, they can amuse themselves with a book or something. Its just nice to have the support. <3
  • Anna LouiseAnna Louise Member Posts: 11
    Thanks guys 
  • TonyaMTonyaM Member Posts: 2,472
    Hi Anna Louise, so sorry you are on this crappy bc  journey. I always took someone with me to appointments and treatments because you feel so vulnerable, especially without hair.I absolutely hated the bald thing. It’s a matter of finding headgear that suits you and that you feel confident in walking out the front door in.For me it was caps.As for the needles and veins, I’d only let the nurse have 2 cracks at it and then I’d demand someone else.Always make a list of questions before you see your doctor and tick them off! I had stage 2 cancer like you and that was 14 years ago- am still ok. Please stay hopeful and keep coming back to this network. 
  • Anna LouiseAnna Louise Member Posts: 11
    So lovely. Thank you! Yes 5 th attempt at vein was almost vomit material.
  • PaynePayne Forster NSWMember Posts: 75
    I feel your pain Anna Louise.  How many cycles of chemo to you have to endure?
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 214
    this only happened once to me, after 2nd attempt, a specialist was called in from the anaethatists dpt and all good,and in all fairness the nurse who did the first two attempts was only filling in for that lunchtime and I have what is called wavy veins,so I agree with Tonya, try and be confident and if something doesnt feel right say so its your body!
    Wendy55
  • Anna LouiseAnna Louise Member Posts: 11
    Only 6 and I've had 2 but the vein thing!!! Eeewww
  • AfraserAfraser MelbourneMember Posts: 988
    I have unhelpful veins and could only use one arm for part of my chemo. Good stabbers as they are called in the trade are essential alrhough putting the arm in a warm bath for 5 minutes helped too. Or talk about a port. 
  • Anna LouiseAnna Louise Member Posts: 11
    Ok thanks 
  • primekprimek Broken HillMember Posts: 3,308
    Or a picc line put in by anaethasist 
  • Anna LouiseAnna Louise Member Posts: 11
    Yes it might be a good idea. Thanks 
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