hi all,this post just my emotion and what I have in my head that make me cant sleep because of these options.1. chemo and radiation then hormone therapyor 2. radiation and ovaries shutdown and hormone therapyI prefer to choose second option but also anxious wether this is the right one.Oncologist cant give decision, it is on meshe just said chemo only for assurance, some people dont want to take. I can choose this option no chemo if i dont want to.but after that she said my cancer is grade3 and little/ LVI (Lymphovasculer invasion) in the cancer sample. Due to this situation, chemo is better option.So, this means only one option given rather than 2 options?????!Somehow, I thought why should I ruin my body for chemo if this is not 100% can be used As the oncologist said, this chemo is like home insurance, you might or might not need it.. thats why some people do not want to have it...but i also worry if maybe I need it???Oh...goshhh ... I just feel these 2 options only 1 option. the first one - with chemo. who can decide it for me??? Breast surgeon ?? or search for second oncologist opinion??I am anxious with the side effect of chemo, it mentioned can create another different type of cancer...All this things from my head that make me cant sleep.hope i can sleep after this post.

@Della, I feel for you, I have been in exactly that situation (in fact, most of us have). I chose to go the chemo and will go the radiation but if the hormone blockers make life hard, I may discontinue them. (Ten years of hormone tablets is a lot to cope with if it really stuffs me up) My reasons are: the Chemo will mop up anything that may be floating around in my blood or lymphatic system, the radiation will clear up any cancer that may have been left in situ and the hormone blockers will have a final go at starving any cancer that may be left after both the chemo and radiation. (as my cancer is hormone positive). Each one will reduce my risk of the cancer returning. If any was left and it did happen to spread, it could go to the brain, liver or lungs. I figure it may take a while to recover from the nasty side effects but I'm going to fight like hell to make sure I have every chance of living my best life. I'm not going to rule out any medication that can reduce my risk cancer unless the side effects become unmanageable and I won't know that until I'm going through it and then I'll consider stopping it.No one can make this decision for you, you need to decide what is best for you and the risks involved. To make the decision even harder, everyone reacts differently to the chemo. Some people come through fairly easily and some really do struggle and you won't know until you do it. Do you have a breast care nurse? If not you can find one here:https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/You can discuss it with her and she'll help you weigh up the options. Best wishes and care XXXX

@Della, just the fact that you are on here, looking for help, shows that you are brave and strong. Even the strongest of us have down days, scared days, days when we don't know how to go forward. Allow yourself to feel your emotions and try to do what you can to keep a little bit of control. It might be going for a walk and giving yourself time to think, it might be filling the freezer with food for days when you don't feel up to cooking, it might be writing down all your fears and questions to ask your doctors/specialists and nurses. What ever you can do to keep a little bit of control for yourself. For me it was cutting my hair short before it fell out in great chunks. If it was going to come off anyway, then it was coming off on MY terms!This disease is a bastard and journey we all travel is a hard one. You are stronger than you realise, and you will make your decision because you have to. That is most of what people see as bravery, just doing what you have to because there is no other choice.Don't feel bad taking up the time of the breast care nurse, that is what she is there for! Can you call them Monday morning before you see the oncologist? Maybe ask if you can talk to the oncology unit nurse manager to help you decide, they deal with people going through chemo everyday and see all outcomes.Don't be afraid to ask heaps of questions of health professionals (part of their role is to provide you with all the info you need) , ask people going through similar things, ask friends and family for hugs, be kind to yourself - if there was any time when you deserve to put yourself first, now is it!. Wish I could do more to help.Take care xxxx

@Julez1958 I had and still having great service throughout my treatment i went public originally as i had no option i was not sorry. From diagnosis to 1st treatment was 6 weeks. I did get put up on a level 1 category on the other side at the same time in mostly private setting an in-law had an horrific time with her private treatment. And is suffering PTSD badly. Shes now doing public route as a private patient. And is happier than before. i think sometimes it is the luck of the draw a lot if us get on this roundabout with no knowledge of whats going to happen and how long it should take. And we’re scared as hell and just want this cancer out and gonethe online network has been fantastic for me. I don’t comment a lot but i do read heaps and not just recent posts. Usually find the answers to most of my queries I wish you well in your treatment.

Hi della - I must admit wasn’t given a % at start but I knew the triple positive cancer was a concern . ER+ and HER+ Can be a worry The chemo was to target any cancer cells still around after other treatments , with clear margins at surgery and no lymph nodes involvement .No treatment regime has guarantees it will work .That’s the problem .at end of day I figured I had to be able to say I’d tried everything that they’d suggested ( and I have ) .

Hello @Della - These decisions are very hard for us 'ordinary' people to make, and even more so when the 'specialists' are wavering.All I can say is to make a list of the pros and cons for your particular lifestyle and expectations, ask all questions of the treating team so you are clear in your mind. From then on, you need to be sure that you won't regret any decision should something not turn out as well as you'd hoped in the long term.All the best.

Chemo or not chemo | Online Network

Sue_w1
Member
4 years ago
@Della, I feel for you, I have been in exactly that situation (in fact, most of us have).
I chose to go the chemo and will go the radiation but if the hormone blockers make life hard, I may discontinue them. (Ten years of hormone tablets is a lot to cope with if it really stuffs me up)

My reasons are: the Chemo will mop up anything that may be floating around in my blood or lymphatic system, the radiation will clear up any cancer that may have been left in situ and the hormone blockers will have a final go at starving any cancer that may be left after both the chemo and radiation. (as my cancer is hormone positive).
Each one will reduce my risk of the cancer returning. If any was left and it did happen to spread, it could go to the brain, liver or lungs. I figure it may take a while to recover from the nasty side effects but I'm going to fight like hell to make sure I have every chance of living my best life. I'm not going to rule out any medication that can reduce my risk cancer unless the side effects become unmanageable and I won't know that until I'm going through it and then I'll consider stopping it.

No one can make this decision for you, you need to decide what is best for you and the risks involved. To make the decision even harder, everyone reacts differently to the chemo. Some people come through fairly easily and some really do struggle and you won't know until you do it. Do you have a breast care nurse? If not you can find one here:
https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/
You can discuss it with her and she'll help you weigh up the options.

Best wishes and care XXXX
Della
Member
4 years ago
Thank you Sue_w for sharing your story.
I am also hormone positive ER+ PR+
Clear lymph nodes, stage1 but cancer is aggressive grade3. I wish I could be brave and strong like you but it is difficult.
after posting my emotion, i tried to close my eyes and sleep but turn out I cant sleep. Here I am, trying to keep myself busy cooking and laundry with a little bit toothache ( need to check again with dentist on what he has done to my tooth, it seems something not right ) hope can be solved before my treatment.

I do have breast care nurse with the hospital but I just feel it is not easy to reach them, they have many patients and I dont feel good to take their time for my problem.
but i have to make decision tomorrow Monday with my oncologist and I have not made my decision yet. No breast care nurse can be contacted during weekend.

many thanks for listening my story.
Sue_w1
Member
4 years ago
@Della, just the fact that you are on here, looking for help, shows that you are brave and strong. Even the strongest of us have down days, scared days, days when we don't know how to go forward. Allow yourself to feel your emotions and try to do what you can to keep a little bit of control. It might be going for a walk and giving yourself time to think, it might be filling the freezer with food for days when you don't feel up to cooking, it might be writing down all your fears and questions to ask your doctors/specialists and nurses. What ever you can do to keep a little bit of control for yourself. For me it was cutting my hair short before it fell out in great chunks. If it was going to come off anyway, then it was coming off on MY terms!

This disease is a bastard and journey we all travel is a hard one.
You are stronger than you realise, and you will make your decision because you have to. That is most of what people see as bravery, just doing what you have to because there is no other choice.

Don't feel bad taking up the time of the breast care nurse, that is what she is there for! Can you call them Monday morning before you see the oncologist? Maybe ask if you can talk to the oncology unit nurse manager to help you decide, they deal with people going through chemo everyday and see all outcomes.

Don't be afraid to ask heaps of questions of health professionals (part of their role is to provide you with all the info you need) , ask people going through similar things, ask friends and family for hugs, be kind to yourself - if there was any time when you deserve to put yourself first, now is it!.

Wish I could do more to help.
Take care xxxx
jennyss
Member
4 years ago
Dear @Della ,
Yes, the breast care nurse is there for you.

from jennyss in Western NSW
Della
Member
4 years ago
thank you @Sue_w for your support. The best things are keep active and happy . Some survivor just eating vegetables and fruits and cancer are gone. I see many on youtube. I am not quite sure whether this works?

@jennyss thank you for reading my post and give me support.

many thanks
arpie
Member
4 years ago
I feel for you, @Della - I was lucky & didn't have to make that choice, but we DID make that choice for my husband as his cancer was aggressive & altho it was 'only' found in the 1 lymph node .... that was enough! As @Sue_w says - the chemo is to mop up the randoms, much the same as the radiation does (I did 4 weeks of radiation) ...

They are much better at chemo doses these days too - not everyone loses hair etc, tho some do.

It is a tricky one ..... it is all about the 'what ifs' ...... what if it comes back and you hadn't had the chemo?

I know that I would have done the chemo if it was suggested to me .... as I wanted to throw everything I could at the beast .....

Don't believe all the 'quack' stories on the web - just as many vegetarians get cancer as anyone else ..... just eat well but not too much, exercise normally & keep busy & make a life .....

Check out this post .....
https://onlinenetwork.bcna.org.au/discussion/comment/204044#Comment_204044

and more of the same .....
https://onlinenetwork.bcna.org.au/search?Search=the+things+they+say

Take care, all the best for your decision making xxx
Della
Member
4 years ago
hi @arpie thank you advice.
My heart and mind try to negotiate not doing the chemo since 2 lymph nodes taken are clear and this cancer is hormonal so just terminate my ovaries. There are so many reason came up from my head to avoid but on the other hand half of my head said ‘what if’ it recurring ??
silly me, why i am still thinking this and I know the reason ‘ I hate the nasty effects cause by chemo’

Anyway, I know decision will be in last minutes when I see my oncologist.

Many thanks,
Zoffiel
Member
4 years ago
Hi @Della These decisions need to be made but it's always difficult. Ive been through this twice myself and have had many discussions with others about how you weigh up the pros and cons and find the right solution for yourself.

One observation, those who decide they are not having chemo usually come to that conclusion immediately. It's a flat 'No.' right from the start. The fact that you are having such a hard time with this probably means that part of you is considering it as an option, unpalatable as that may be. If you need more time to listen to that little voice, that is OK. None of us like to be backed into a corner.

Sue has given you some excellent advice. Please get hold of your breast care nurse and have a chat to them. Yes, they are busy but you do need some help with this and that is what they are there for. You mentioned talking to another oncologist, that is also a reasonable thing to do, though from experience, you will get the same response from them. Good luck with this and listen to your heart. MXX
noosa_blue150
Member
4 years ago
Hi della - make sure you have a really good discussion with your oncologist about chemo.
all of us go through the dilemma of trying to,ascertain best treatment options and only you can make the decision but do,ask about risks if you don’t do,chemo,

I hope you don’t mind me making a observation about lymph nodes : I had 5 removed and they were all clear after a lumpectomy .jump forward 8 months or so after adjuvant chemo/lumpectomy/radiation and extra chemo ( as I didn’t achieve full regression of tumour on pathology at surgery) I now have a bone metastase in my spine and am lining up for stereotactic radiation . Radiation dr said she could,see,response to chemo,between several,scans .

A bit,shocked as I honestly thought it’d show in lymph nodes first but no………
At least now I think there was nothing else I could have chosen to do really , I took all treatment offered.

That’s the really shitty part of being in this position -having to weigh up your options and make the decision. None of,us have a crystal ball .
Wishing you all the best
Sue_w1
Member
4 years ago
@Della, Just a thought on the 'Some survivor just eating vegetables and fruits and cancer are gone.' videos on youtube, Please be careful with these. What scientific data do you have that the cancer is gone or that eating only fruit and veg 'cured' them. Everyone's body reacts differently to cancer and while a healthy diet (balanced and including proteins and healthy fats too) will boost your immune system, the treatments the oncologist offers you, has been proven to kill cancer cells.

Maybe you could look on Google Scholar for peer reviewed studies about diet and cancer?
BCNA has info on diet and exercise that may interest you too.

My own personal view is to combine both the treatments offered by the oncologist and radiologist and diet + exercise to give myself every chance I can to beat this bastard of a disease!

I know making this decision is hard, all you can do is go into it armed with as much information as you can. Use all resources at your disposal, including your breast care nurse, as she has experience with many, many women going through the same thing and can draw on that for you.

Best Wishes
XXXX