Op to remove primary

Hi Star74

I am going to link in SarahH21 as she might have some insight into this .

Sending you lots of love . If it were my relative I would have a couple of questions to get a grasp of the situation . How many times have they carried out the surgery and how many times have they experienced a patient with paralysis? Sometimes that gives you more insight into how prevalent it is . I might also want to know would there be a possibility of the nerve regenerating . 

Whilst factoring in the surgical risks is the toxicity with chemo through time , and how do they project that risk .  My mum was faced with a very difficult conversation in one surgery which due to her age held very high mortality risks which I never normally mention here . It’s a good team that seek to ensure you are fully consented , but it’s hard . A couple of questions we found helpful . Asking if it was reasonable and if it was with curative intent . This opened up other insights from the surgeon that helped my mum greatly . 
I have read of one person but it was not with the more extensive surgery , they were just unfortunate. 
In the end of the day my mum opted for curative intent . But it’s not easy and at the end of the day it has to be one you are on board with .

Take care ,

Court 

Thank you as always court, some great questions there, just hope I've got the balls to ask them!  I have a tendancy to avoid asking tough questions as I don't want to hear the answer!  John's going to come with me so I'll make sure he's aware of my list.

Your Mum is one tough cookie.  If the op is curative intent it's got to be the way to go.  I'm hoping once I meet the Professor I will gain some confidence in him, I've heard little about the team but my colorectal nurse and oncologist rate them.

Xx

Not only will they be able to give you some advise remember they also have a dedicated team of anaesthetists and theatre staff . They will work together and have a good understanding of their working practices. They may also have other surgeons in assisting . I drew a lot of strength from that . Although her surgeon was changed twice on the day but I reasoned they were at the top of their game and they did not disappoint . 
She is made of strong stuff . This part is hard for sure but there was some comfort in knowing how thorough they were being . 

That’s good your team rate them . They are inclined to be in the know .

take special care ,

Court 

Not in a position to add anything as I’m new to this but wanted to reach out and say hi.  I’ll be looking out for you following on from this meeting and really hope you have firm decisions soon.  I hope you don’t have to wait too long for the appointment xx

Hi Star74 and sorry for the delay in getting back you you, I’ve spent the last couple of days travelling home from holidays. Thanks court for the heads up.

I had the total pelvic exenteration, so a bit different, but similar risks to be advised of, and yes, paralysis is one of them as there is a danger of nerve damage-in my case to the obturator nerve which can be damaged depending on much much they have to remove during surgery and its  proximity to this. This was not quite as bad as the major risk on my consent form which was of course death! I run a private support group for exenteration on Facebook so am in contact with ladies who’ve had the posterior exenteration for colon cancer/rectal/anal cancer etc, and know no-one who has suffered paralysis during/after any type of exenteration surgery and I’ve spoken to many, many women over the past few years who’ve had the surgery. Our team still need to advise of us of this possibility.

For me, and all the ladies with my type of cancer(cervical) the intention is curative and the surgery is only done for recurrent cancer. It is important to have complete faith in your surgeon and I asked questions about how often they had performed the surgery etc. I didn’t ask about successes because I knew the basic stats, potentially 50/50 in my case, but I never actually think about stats as we’re all individuals and we have to be comfortable in ourselves about the risks any surgery brings. In the end my odds were 70/30 against  success (which I didn't know at the time) but I am more than 2 years out, and my surgeon refers to me as her “poster girl” for this op as it was so successful. 

It is very scary, I won’t deny that, but I held onto the thought of curative intent, because for me the chemo alternative was a palliative option. I know people who have been too scared to have it done, and I didn’t want to be one of them, so I maybe didn’t ask as many questions as I should have prior to surgery. 

What I will say is that recovery is very long, and very tough-there’s just no sugar coating that, I was told it would take a year, and that’s not wrong in my case.Ask exactly what will done in the surgery-another thing I failed to do! I had 3 surgeons for mine-gynae, colorectal and urology as I also had my bladder removed, working in tandem,so my operation wasn’t as long as anticipated due to their efficiency. I had 2 nights in the high dependency unit and a further 12 on the ward.

Getting home, you need a lot of help and support. The main issue for me was incredible fatigue. Pain wasn’t an issue, more discomfort. In hospital I was only given paracetamol and oramorph if required, which I would typically take just at night time. I needed no real pain relief except paracetamol when I was home. Getting used to stomas takes a little time but once the stoma settles, it just becomes second nature. 

I have never once regretted the surgery. Not once. It’s tough, but it can give such amazing results. For me, it was worth it and I don’t know anyone who has had it done who has regretted it. Keep in your head the words “curative intent” and keep a positive attitude would be my main advice. I’m a huge advocate of this surgery when it’s possible, because I know how lucky I was that it was possible for me. It changed my life, but saved my life.

Its a big decision to make, but I hope you can be reassured that this may be the best decision you could ever make. Feel free to ask me any questions you’d like and I’ll do my best to help.

Sarah xx

Thank you Mizzle88, how are you feeling?xx

Thank you so much SarahH21, your message was just what I needed, you have reassured me and I am back on track!

consultation with the surgeon is on Wednesday next week, I shall be armed with courage and questions! 

I am sure that I want to go ahead, like you, the only other option is palliative chemo.  Hopefully they’ll get me in sharpish, pardon the pun!

thanks again and I hope you had a fantastic holiday.

michelle xx

Hi Star74, yeh just back home now - they started the chemo quite late so kept me in for 3 nights to be on the safe side. Steroids for 3 days only (just finished last one and Dom for a further 2 days.  A little tired but probably more from being wired up to a machine and being waited on for 4 days!  Thank you for asking and good luck for your consultation!  Xz

Oh that’s good to hear Mizzle88, glad it all went ok.  It’s good to get the first one done, now it can start working it’s magic. Xx

Really hope so - Day by day!  Have to dream of  reducing tumors!  Have to keep strong don’t we.  I’ll check in on Wednesday x