Feeling lost :(
Options
Josephine66
Member Posts: 79 ✭
Hi, I've just been told I have breast cancer and now have to wait for hospital/surgeon to contact me for a pre op appointment. Just turned 51 and didn't see this coming as I suspect most don't. From what I can gather its stage 2 and I've been told I will have to have a mastectomy but it could be up to 6 weeks away. Keen to prepare with good health and exercise I'm wondering if anyone has advice on taking antioxidants prior to surgery. I'm looking at supplements NAC, Turmeric and Repairase. After researching online I've found arguments for and against so feeling very confused. Help please
0
Comments
-
It helped with my emotional state to walk every day for an hour.I think I’d check with your oncologist before taking supplements- I am a long time fan of high dose garlic tablets to prevent colds but discovered was a blood thinner and not advisable before surgery. There is a site many of us have referred to about supplements that might provide some preliminary information here is the web address :
www.mskcc.org/Cancer-care/patient-education/herbal-remedies-and-treatment
1 -
Hi, Thank you so much for your comment. Unfortunately when I got my results I was told to go home, be positive and I should hear from hospital within 14 days. I'm guessing I wont see an oncologist straight away. In the dark here but I'll check out the link and go for that walk
Thanks again 0 -
Welcome @Josephine66 to the online support group none of us ever wanted to need!
There are many posts in the menu on the right hand side of the page that might help you with your preparation for surgery, both physically and mentally.
Have you applied for your My Journey kit on the BCNA website here?
It has some fantastic books in it that will help you through the maze of information.
Including prompts for questions you might want to ask.
On the website, in resources, there are also some fantastic fact sheets you can download, the pathology report one might help you before you see the surgeon.
Do you have a Breast Care nurse yet?
If not go onto the McGrath Breast care nurse website and find the one for your area, or contact the Cancer Centre near you for contact details.
They are fantastic, a voice of reason when you are feeling desperate or alone and confused, they will liaise with specialists if you need and will decide a lot of the jargon for you as well as explaining proceedures. Excellent for asking if something is normal when you are worried.
All the above resources are free.
When you see your surgeon you will get a better idea of what you will be doing for the next few months.
Mine gave me a basic timeline for treatment based on my initial biopsy results.
Be aware that that may change after the operation, it is quite common for the pathology results to be different, the after surgery ones are what you work with regarding treatment, prognosis etc.
They should also give you information about your Oncologist if it looks like you will need one.
Ask about costs if you are going through the private system, and always remember you can switch to public any time if you want or need to.
Many people do some treatments in the private system and then switch to public for radiation, for example.
If you have private health insurance you will discover how good they are to deal with and how good their cover actually is. - or isn't!
Quite the eye opener . Unfortunately you also need to study up on what you need to do to get the best returns from your health insurance too, very time consuming.
Be prepared for lots of paperwork, lots of appointments and lots of time taken.
I bought a monthly board from BigW that attached to the fridge to try and keep track of them all, it can get overwhelming.
Take it all slowly, one treatment type at a time, ask as many questions as you feel you need and if you are not clear on the answers ask them again, both at specialists and on here.
Write stuff down, even if you are normally very organised, there is a lot to take in.
If you can take someone else to appointments, do so. They are great for moral support and to remember what is said and also to think of questions to ask.
The very best of luck with everything and hopefully some positives will come out of all this as well.
Jennie
1 -
Oh, and in relation to your original question, there are some supplements that are not advised to take prior to surgery, or during the other treatments, make a list of your regular supplements because you will probably be asked about them.
You may be called in for a preadmission appointment at the hospital, they will ask about supplements there and will tell you what not to take in the lead up to surgery.
Fish Oil was one I remember, something to do with blood clotting.
Ask your specialists or nurses.
The Pharmasist at the hospital where I went for Chemo checked all my medications and supplements for me.
Glucosamine was apparently not good during chemo and I was not allowed to use my migraine reliever drugs as they interacted adversely with the Antinausea drugs.
I also could not use a natural supplement that contained probiotics as I was neutropenic, and my Oncologist was concerned about unknown bacteria.
I would say just be as healthy and as fit as you can without straining your body.
Mastectomy may affect your flexibility of your arm, so if you need to sort issues with your arm out prior to surgery, it would be a good time to do it.
I wish I had seen the chiropractor before surgery as I am in desperate need now, and can't go until my radiation burns heal.0 -
Thanks Jennie, You've been very helpful and supportive. Yes I got the kit yesterday and have read through all twice over. The letter I got from Breast Screen Centre had a contact number for a Breast Care Nurse so I rang and left message but haven't heard back yet. Not sure if this nurse will be looking after me though as I don't think she is attached to the hospital I will be attending? Sorry to complain but feeling frustrated...when I got pathology results on Monday I was told to go home and get back to normal life, be positive and try not to think about it and the hospital will be in touch within 2 weeks. I'm hoping this is a pre admission appointment and they will give me a surgery date. Feel like I've been handed a grenade and instructed to hold carefully and eventually someone will disarm the bloody thing, but in the mean time don't move an inch! I'm of the thinking now that its best to avoid any supplements and rely on fresh food and exercise. Good advise on the arm, I think I'll get a massage and maybe a glass of wine to settle the nerves.
Cheers Josie1 -
Hi Welcome. I was 51 had embarked on a new job and life was looking less stressed at last...then bam.
I had an appointment fairly quickly and do contact the hospital referred to if you haven't an appointment time by Friday...sometimes they get lost.
Order a My journey kit which will help with lots of questions. Link below.
https://www.bcna.org.au/resources/my-journey-kit/
As to use of herbs etc with cancer and treatments there is a useful site which explains what you can safely use and what to avoid. Link below.
https://www.mskcc.org/cancer-care/patient-education/herbal-remedies-and-treatment
Without pathology results and first appointment you won't know what treatment you might need.
Once you know you can start doing practical things lie:
Organising hospital bag...nighties or PJ'S, toiletries etc.
Clothing that you can get on or off easy.
Looking at scarves, hats or wigs if you need chemo.
Cooking ahead meals. Sorting your home depending on surgery needed.
Practical things help the spinning head. I bought a mobile expander file helped me organise all things cancer related like path results, hospital info, bills etc.
I bought a diary also for appts and also to write down questions to ask.
Ask about a breast care nurse who will support you through this.
Any questions just ask away.
Kath x
1 -
Well, that was helpful advice, wasn't it? Go home and don't worry. Now, why didn't you think of that yourself? Sheesh, you've got to wonder what planet these people have been living on--or whether they are somewhere on the spectrum where they just don't have any empathy (probably)
Six weeks seems like a long time, but don't be surprised if that all goes out the window. It's remarkable how often the goal posts move around; specialists may be good at what they do, but as a few others can confirm, they sometimes get involved with ,and speculate about, what their colleagues will want to do--and get it wrong. It can take a few weeks for all the ducks to get lined up but the time will fly. OK, it doesn't fly that fast at 2 am when you are awake stressing, but you get my drift.
Regarding the supplements--meh, if you aren't in terrible knick they won't help, they won't turn you into Superwoman in a couple of weeks if you are already running to seed and they can be a really bad idea if you get it wrong. Fresh air, exercise and sensible eating make better sense. And wine. Now is not the time to give up wine. Good luck, Marg xx
4 -
Good news, I have an appointment with Surgical Consultant this Friday so fingers crossed I'll get a surgery date.
Great advise Kath, yep got hospital PJ's ready and have been cooking and freezing past few days to stock up
Marg, you sound like my kinda person Enjoying a vino now
Thank you so much for replies today, you all made my world feel a little better
Cheers Josie xx3 -
Oh so pleased you have an appointment and will know more soon. Please let us know how that goes.
And one other thing...you don't have to be positive for successful treatment (that's just what people say when uncomfortable with your emotions) if you are frightened, want to cry...whatever you feel let it roll and acknowledge your feelings. Don't think you can't. You will pick yourself and soldier on just like we all did. I managed it sobbing all the way. Kath x3 -
Hey there Josie once you get a plan of attack you will think clearer and your surgery date shouldn’t be too far away. I had one two weeks after my diagnosis and I was triple negative stage 2a grade 3 in the end aged 43 and i had a mastectomy then took the other boob off as I chose to 6 months later just waiting for my recon date which won’t be for at least another 12 to 18 months away thru the public system in Brisbane. Rest assured you’ve has great advice from the crew so far and hell yes enjoy that wine ..... I sure as shit do and I finished Chemo 12 months ago! We I’ll be here for you whenever you need it some days you will feel as strong as a lion some days you will hate the world and some days you’ll want to crawl under the doona and never come out but you will get through it and that’s the main thing. You will also find out soon enough who your true friends are and who are not. I had ones step up that didn’t need to and some that didn’t when I thought they would. Biggest hug. Margie xx1
-
Hope your consult went as expected today @Josephine66 and that you now have a plan in place. While waiting for my surgery I caught up on all my housework doing a big spring clean even though it was the beginning of winter. I cooked lots of meals and froze them and I shopped for new button down or very loose nightwear that was easy to access post surgery. I didn’t have a mastectomy however, I had a lumpectomy. I read all I could and educated myself on this disease. I chatted to all the lovely people on here who gave me great advice and I connected with a few friends who have gone through the same thing. I found that I needed to stay busy. In between every now and again I would have a good cry. I still do because let’s face it, this is a shit deal and who really wants to cope with it. Let us know how it went for you xx Lesley0
-
Oh, everyone who is going to hospital for anything.
write your name on every bit of clothing you take with you, phone number too if it will fit.
On my first op, the nurse in the morning grabbed some blankets from the chair in my room to take them to the laundry, gathering up my white waffle bathrobe at the same time.
I just managed to call out as she left the room and get it back.
On my second, recent op, the nurse bundled all the bedclothes up off the end of my bed while I was in the shower taking with it my brand new bed jacket that I had searched for months to find and was so happy with.
In my blurred post anaesthetic state I did not realise until a day later when I went to put it on and thought I must have left it at home, nope, it had gone with the linen to the laundry and I have not had it returned.
NOT HAPPY.
0 -
Hi Josephine66,
I hope your appointment went okay today. The first appointment with your surgeon can be very confronting & your head may be spinning. Allow yourself time to get used to this, your new reality.
As for hospital wear, I opted for a loose singlet top & loose comfy pj shorts, my breast care nurse said it was perfect. I had trouble finding button up pj tops in my size anyway! Always good idea to name your clothing.
Also in your bathroom bag, add in a pair of earplugs!
The precooked food is also a good idea. I was lucky enough to have good friends who cooked & froze meals for me, I also had my daughter staying with me for a few weeks to look after me. Just take it easy.
Take care,
Cat0
