Asking Questions?

[Lily-Anne]

Did any of you get the opportunity to discuss with the consultant chemo? I've got so many questions and I really feel too scared to just go and start without him answering my concerns, yet I've just had a call asking me to go to a clinic to start chemo without a post op check or anything. I still feel unwell post op have had a pelvic infection and now I may have another infection plus I'm anemic, I thought you were supposed to be in full working order?

[Hidden]

I would suspect they would give you a check up while you are there (before starting chemo) didn't you have an operation earlier? and this is your second operation, perhaps they work differently then, I don't know but you can always ring the hospital back and ask these questions at least it would put your mind at rest...if you are unsure you are entitled to clarity so if I was you I would give them a ring best wishes love x G x

[Hidden]

Hi L-A,

I am amazed that you are being called to start chemo without a meeting with your Oncologist. I was first seen by him, given the information about chemo and the choices, then seen again. I questionned, researched, and made the decision to have the least chemo on offer, despite two trials being current too. Having decided to go ahead, blood tests to make sure I could tolerate the drug were taken a couple of days before, and a CT scan to show the post-op picture was taken.

It might be that the appointment they are offering is with your oncologist - but I would check and insist on one if not.

It is very easy to go along with being 'sucked in' to the treatment machine - this is their expectation, of course- but never hesitate to emphasise that this is your body, and your treatment, and that you'll make your own decisions, having heard their advice. The medical team are there to support you throught your experience - and that is not necessarily that of the other patients they have treated.

Don't be afraid to assert youself!

Best wishes,

Isadora.

[angelina]

Hi I agree with Gwyn and isadora - you should have a chat and check up with your

oncologist before starting chemo. They don't usually just start you on chemo. I also

had another appointment to see a chemo nurse and she explained everything to me

about the procedure and also what you can and cannot do while you are on your

course of treatment. Maybe you should give them a ring just to check you aren't just

going for a chat on the chemo ward.

Best of Luck

Angie x

[iamstillme]

Hi Lily-Anne

Just seen this post . I too am suprised that you have not seen your oncologist prior to starting chemo .I would phone and ask for an appointment . As you have an infection they may not wish to start this until resolved as chemo makes you more at risk of infection. You should as Isadora said see a nurse a couple days before/have bloods etc /talk over what to expect etc/sign consent forms and they will and should give you advice about skin/oral care and wigs

Please phone and ask . This is a hard enough job without added worry

Lots love

Ally

[Whippit]

Dear Lily-Anne

You'll need several appointments at the hospital before starting chemotherapy. They will refer you to the Nuclear Function to test your kidneys which enables them to assess the dose that's right for you. That takes about 4 hours. I also recall having a blood test the week before starting treatment. You will also be checked by an oncologist to ensure you're well enough to have chemotherapy. Some unlucky women aren't in that position.

I wonder if the appointment is to see the oncologist to discuss things more? I should ring the number given on the correspondence and ask what exactly you will be going in for. That might reassure you.

I hope all the comments help and reassure you. xxxx Annie

[wendydee]

Dear Lily-Anne, I too am surprised that you have not had a meeting with your oncologist. It's no wonder you are having lots of unsure feelings etc etc. is there anyone at the hospital that you can talk to quite openly, like a CNS, specialist nurse? It sounds as if you are needing some more support. I had so much support, I was offered lots of opportunities to talk, met the surgeon and the oncologist 6 weeks after my op, i had plenty of opportunity to discuss with the gynae/oncology specialist nurse, I was also offered counselling. If you ring Ruth on 0845 371 0554, she may be able to help you about what you can do to get some more support.

All the best,

Love Wendy xx

[Lily-Anne]

I've spoken to the oncology nurse today, she said that they want to discuss treatment - phew - so I can make a decision, but after our chat I'm none the wiser of what to ask. She said the combi drugs carboplatin and taxol have a 75% success rate that seems low to me? She said there is no way of knowing if cells remain, there may be none, but if there are then the only treatment is chemo. I don't understand, or maybe I'm being blonde, but if there are cells and it only gets 3/4 of them then it's going to be back anyway?

LA

[wendydee]

Not necessarily! The cells may not develop into anything, also I think they always err on the side of caution when they are giving statistical info about 'what if.....' Once you are in the system, they keep a really good eye on you and watch for any possible occurrences. Also, the treatments are evolving all the time and, even if the cancer comes back, they may have a new regime to treat it with. A 75% success rate is good. It means that you have a much bigger chance of it being ok than not. When I was diagnosed and had my op, the consultant told my husband I might have 5 years, ten at the most. Well, it's ten years in 25 days ........ I'm not planning to turn my toes up yet as someone said earlier, 'bugger statistics!' It's still early days for you though and it's natural to feel confused at this stage. Stay with it, share your thoughts and your fears, you will get through it all.

Love Wendy xx