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.

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.

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

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

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

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

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Afraser
Member
8 years ago
You are having a most unfortunate time. My surgeon and oncologist worked closely together and my oncology nurses were both supportive and informative. But as you are sick and exhausted, it is hard to remember what to ask and what to ask for and your oncologist may not want to overload you. Never forget though that if you are not getting the treatment and the information you want and need, you can change your oncologist.
Anna_Louise
Member
8 years ago
Thanks Margie,
It maybe my frame of mind at the moment, but to be honest I'm pretty shocked at the service offered to people in my situation. I'm feeling sick and exhausted and yes the Oncologist is nice but I'm a number. I Have an appointment wit then move into chemo. That's it because I guess that IS IT? Have chemo, go home. Until next time. The services are disjointed and you have to chase them up??? These guys are being paid to provide a service. My initial breast care nurse was to provide a list of exercises for me to do post surgery but as my surgery coincided with a public holiday it didn't happen and then she sent them to the wrong email address. Glad she's not administering the chemo dose!!
onemargie
Member
8 years ago
Hi there @Anna Louise I would definitely recommend the port for access for your chemo I'm honestly surprised this wasn't discussed with you prior?? Sounds like you haven't had a good time with your oncol either with communication, Id write everything down before your visit you want to ask then take your time to get the answers you need or if you're still unhappy get a new oncol and where's your breast care nurse in all this?? Mine was awful but you should have more support from your team that what you are getting for sure. Margie :)
Anna_Louise
Member
8 years ago
Kezmsc,
Exactly! You are the evidence and there's plenty more. I asked at my centre if they had one for me please and the response from nursing staff how would you choose who gets to use it??? So NO! My response: shouldn't have to choose they as should be there for everyone. Private hospital has one which was donated but public hospital NO! Doesn't seem fair as I've paid my tax and always worked toward believing in an equivalent system for everyone
Teejay
Member
8 years ago
I had a porta Cath inserted. Although I had good veins I didn't want to destroy them. The specialists can't give you certainty but staying positive will certainly help. I ask lots of questions all the time with my Oncologist (haha) said I had been a difficult patient but it is my body and I have rights to ask as much as possible and so do you. Always listen to your body it knows what is best. I had only one node involvement but fast growing cancer so opted for 16 chemos and 20 rads and now on Fermara. Hair does grow back and you do eventually start to feel like your old self but with different perspectives I find. Do what you think is best for you. Take care
kezmusc
Member
8 years ago
Hi @"Anna Louise"

The cooling cap worked a treat for me. They have been in use for many years in the UK. My breast care nurse has been trying tirelessly to get one for our local public hospital. However funds, extra chair time and a dismissive attitude from some Onc doctors has rendered it an incredibly slow process. Unforturnately a lot of doctors don't pay much attention as to how much keeping your hair can actually make this whole shit fight just that fraction easier. You can go to work just looking normal. You can go out with your friends and look the same. It just helps so much I found. The picture below is my hair the day of my last chemo appointment. This was after 4 x AC and 12 weekly paclitaxel. These are the drugs some doctors will tell you the caps don't work with. This should be an option for EVERYBODY
iserbrown
Member
8 years ago

@Anna Louise

Oh, for me I just had to apply online as there were workshops to choose from nearby

Apart from that are you aware of the Otis Foundation? A free holiday for us, breast cancer patients - hopefully there is something in your State as it is good for the soul - check the search engine here on the forum and you will see previous experiences of others, @soldiercrab, @zoffiel, to name a couple, including me - My GP signed the paperwork for OTIS - he was thrilled with the idea

https://www.otisfoundation.org.au/
Anna_Louise
Member
8 years ago
Yes thanks Iser ,I rang about the workshop and it's a matter of supplying evidence that I'm a breast cancer patient. I need to get a medical person to send a letter to confirm this so I can obtain a kit? My word is not enough? I think it's a great idea but it's not that well organised or approachable. In my experience anyway.
iserbrown
Member
8 years ago
https://lgfb.org.au/workshop/

In the meantime have you attend the Look Good Feel Better workshop - the link above allows you to put in your postcode to find one near you.
Anna_Louise
Member
8 years ago
Thank you for your responses re cooling caps and new inclusion into the treatment sphere. I guess my thoughts are these; given the amount of donations and funding made to reduce the stress of breast cancer they should be factored in to the regime as part of our treatment. Where does the money go?

Why cant cooling caps at least be offered?
They are available and purported to work in many cases so let's have them please or at least ensure they are available at all centres for trialing. It is tough enough as you all know dealing with this bump in our road of life without being hairless and trying to get back to looking normal so as to work so I am a contributing member of society. I am not always well enough to work but having hair would give me a little incentive to not get so down. Sadly,how I look is important in my work but from a philosophical point of view it shouldn't matter within reason and it doesn't reflect the person but society judges in business.
No one sees my breasts but my hair loss is a beacon for discussion ,supposition or pity. Can we try please to get cooling caps as soon as possible into EVERY outpost regional and city???? I will be a strong supporter to drive this.