new to penile cancer

Hi spraylifter and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I can't help with your questions around side effects but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be more easily seen.

You should have been assigned a cancer nurse specialist, sometimes referred to as a keyworker, as your point of contact for questions. If the nurse can't answer the questions she'll refer to your consultant and get back to you.

The last thing you need to worry about while you're concentrating on treatment is money. I'm not sure if you're aware that Macmillan have a welfare rights team who can check that you're getting all the benefits and grants that you're entitled to. If you'd like to speak to them you can call free on 0808 808 0000 Monday to Friday 8am to 8pm and Saturday and Sunday 9am to 5pm.

x

Hi latchbrook

thanx for your reply

i was taken in for an op 4 weeks ago my understanding was that they were going to remove the tumour inside my penis i passed my pre op assesment etc bloods were fine  then on my way to theatre  the consultant said he was going to do an biopsy on the tumour and remove the tumour a few weeks later i asked if he had read my notes as in my notes it says that any general aneasthetic to me must be a last resort as to high risk from previous surgery   so he canned the operation  and said i need another pre op    i told him i was on the understanding that it was all going to be done in the one operation  so he has agreed to this as it cuts the risk getting one op instead of two ops  he agreed this will cut the risk by 50 % i am still waiting i keep calling hospital but have no info atall from them as for a nurse i have never heard of this being available it feels like i have been hung out to dry thank you very much for taking the time to reply stay safe my freind

                    best wishes Rab

Hi latchbrook  after torturing the hospital looking looking for answers to when i get my high risk pre op assesment i finaly was told its next thursday  at 11am seems i was forgotten about  can you or any other person here tell me what a hight risk pre op assment is ? as the words high risk realy bothers me   any info on this would be great                                                     TIA  rab

Hi spraylifter

That's good to read that you finally have your pre-op. I'm afraid I don't know what a "high risk pre op assessment" is but you could post your question in the ask a nurse section of the online community. However, as they're closed over the weekend it might be better to phone the Support Line on 0808 808 0000. It's free to call and they're available every day from 8am to 8pm.

x

thank you very much again my friend

Good evening RAB,

great to have you here. It seems like a very worrying time for you.

Good to read the reply from latchbrook, some good advice about support. Sometimes waiting can be very difficult as you probably want answers to calm your concerns.

The helplines are good. When I’ve rung the people at Macmillan have been attentive, understanding and helpful. They went out of their way to help, sending follow up emails too.

Money worries don’t help. I’ve spoken to people on the phone and face to face and each one tells a different story. It can be very frustrating, even worse when you have other things on your plate too.

There needs to be more joined up thinking for sure. Again, ring the helpline for finance and benefits. They could help. I didn’t know if you have a Macmillan centre or Citizens Advice centre you could access.

There’s also several benefit checkers you can use online to find out if you can claim anything. I’ve learnt it’s not straight forward and takes time to process but the sooner you start hopefully the quicker you’ll get some answers.

Macmillan also have a grant you may be able to apply for linked to additional costs linked to cancer.

Hope you get some answers soon from the hospital and financial departments.

Good you’ve aired your concerns here. 

I wonder if you have any plans for this weekend. Maybe good to do something you enjoy if you can, a gentle walk in the out of doors possibly could help. I know it’s not easy. Try and think and do some activities that lift your mood.

Take care of yourself

a wee update here

it  have shaken up a hornets nest here  after making many phone calls to forth valley royal being passed all over the place ok we will transfer you call here there and all over the place after four days of realy being a pest she took ownership of my issues i cant thank her enough for doing that in the end she called me back its sorted she told me i thought well done

it seems i had been forgotten about in waiting lists etc  i ad a pre op on friday past with aneathsatist i have another pre op this comming friday then i get my op on the 7th october at least now i have answers and a date for my op thank you again to the young lady that sorted things out for me

                                                               Rab

Hi RAB

Good to hear you’ve got somewhere at last and someone fighting your corner.

Well done on not giving up and ensuring you got some answers and action.

Hope the pre ops go well and all the necessary things are done and information provided to what will happen. It could be an ideal time to ask any questions you may still have. Oct 7, isn’t that far away although it may seem so when you’re waiting.

Thanks for keeping us in the picture.

Hope all goes well.

can i ask does having penile cancer male you feel tired and worn out  i had bladder cancer in the past and i cant remember feeling as tired this time as i did the last time ? TIA RAB

another update on my self

i am now 17 days post op they removed the tumour from my penis and they removed my pee pipe as they call it i still have a lot of discomfort from the op they told me complete rest well me being me decided to drive after 6 days omg i burst a few stitches that they say will heal on their own they have not done biopsy yet on the tumour i should hear that result next month all i seem to do now is sleep they say that is good medicine my appetite is almost non existant they say i am on the mend the advice i would give any one after this op is listen to them and rest bed or couch i hope no one else hs to go through this  as they say its a rare type of cancer take care all

best wishes

Rab