Surgery

Hi MrsKS 

Yes, you’re right. When it’s a salvage op, that means it’s done after other treatment eg chemoradiation. For first line treatment it’s just an APR. I tried a hysterectomy after chemoradiation  and it was also called a “salvage hysterectomy”.

Sarah xx

Hey Irene75359 to be fair, my surgeon was very, very Frank and explained in great detail that this is major surgery, although it won't be curative, I'll deal with that part once this is done with,

Thank you for the ongoing support 

 MrsKS oh I'm sorry to hear that you've had to experience this

If it is OK, could i possibly send you a private message? 

Yes absolutely feel free!

Hi Happyforager2 ,

I did wonder when in your last post you mentioned about an 8 hour surgery for your stoma but I didn’t like to ask if it involved an APR. 

In my time here there have been several people that have gone through this surgery some as first line treatment & others as ‘salvage’ surgery & although there’s no getting away from the fact that it is major surgery it’s generally done with curative intent & if this is what it takes for you to be cancer free it’ll all be worth it. At the beginning of my journey the thought of this surgery would have terrified me but having read so many peoples experiences on here has removed a lot of that fear. 

PMA (positive mental attitude) will play a big part in your approach & recovery from this surgery so try & look on it as your escape from this disease & believe that you’ll get back to living your life fully & more importantly cancer free! Don’t get me wrong we all suffer our blue days but try & stay positive & remember we’re always here to support you however we can. 

Nicola 

Dear Happyforager2 

I didn't see your post earlier. I don't know where you are now on salvage surgery.

I had it, a little over a year ago, in August 2023, after radio-chemotherapy wasn't enough to sterilize the tumor. My radiotherapist kind of brushed it off by telling me "well, there's a solution, we're going to do a salvage APR". as if it was a simple formality, like putting on gloves when it's cold.

I'm not going to lie to you, the reality was much harder. 1 month later I was in the operating room. and if the word amputation appears in the acronym APR, it is fully legitimate. the doctors told me that I would stay 10 days in the hospital, I spent more than 3 weeks there.

First they messed up the epidural and took over 10 days to find the right medication and dosage to reduce the pain. (excruciating pain, I cried day and night waiting for death at this point). But they finally found the right dosage.

And then I was able to get up. And I discovered my body. Before the surgery, I was terrified by the stoma, this definitive companion, tainting my physical integrity, my femininity. That was before discovering my buttocks and my perineum. Disfigured landscape, in place of the anus and up to the vagina: a huge diamond of swollen skin. It was the flap of my rectus abdominis muscle. Well I'll spare you the details. I could have endured everything more easily if I hadn't been told 15 days later that unfortunately, after analysis of the removed parts, the margins were affected. all for nothing I told myself.

I was barely 50 years old, single for 4 years (after a very  hard time with my ex) and finally settled with my children in a new apartment that was all mine, and a promotion at my job. And BAM! like a bomb in my head.

I used to go out a lot before, I was single again after 15 years of failed marriage, I had romantic dates again.
It's over. I haven't had sex since the operation. Physically I think it would be painful. But especially in my head it's just impossible to show this body that is mine now. While I used to like it, today it disgusts me.
but that's my story, my barriers. And I don't have time to worry about my body or about having sex, because I'm still in a fight for my life, so all that is secondary.

Well, at least since the surgery I can eat normally. I'm getting used to managing my stoma, mechanically, I have no choice. 

I hope I didn't shock you, I just wanted to be honest (as my radiotherapist wasn't with me), it's a very heavy surgery.
And if I wasn't lucky, the APR didn’t save me, others have been rid of this cancer thanks to this surgery.

And I hope that this will be your case if the APR is maintained.

Don't hesitate to write to me.

crossing fingers for you 

xxx

Oh Helen what a dreadful experience you have had to go through at such a young age too. Life can give some people massive obstacles to cross and I’m sure you said to yourself why me! I do really hope this isn’t the norm for all that have to go through what you have had to endure and it seems to me part of your bad experiences were very much the hospitals incompetence. Reading your story would frighten me to death if I was faced with the same situation but also make me aware that I would fight for exact knowledge of what the hospitals intend to do and if they are up to it. 

Being a single parent and finding a life partner is hard enough without having extra problems and hating your body. I truly wish that one day you find a companion who you can feel happy with and not lonely as it can be lonely when you are single with children. 

A big fat hug for you x

Thank you Jaycee12 for your words️

Yes, I realize that the description of my surgery is a bit violent. But I wanted to say that this procedure is not to be taken lightly, it is a major surgery that changes your life forever. And we are entitled to expect maximum information from doctors and support from the entire care team. 

 Happyforager2 , in case you still need information: what would I do differently?

1/ I would ask for a chemo before surgery. This in the hope of reducing the tumor. Indeed, once my body was opened, in the operating room, the surgeon saw that the tumor was more invasive than expected (not visible on the MRI) and even by making several cuts he was limited by the proximity of vessels, nerves and intestine). And unfortunately, the margins of the removed parts were affected. 2 months later a tumor was visible on imaging. In this irradiated landscape and after an APR, and the contact of the vessels, surgery is no longer an option.

2/ I would ask for a biopsy of the tumor before surgery. Some clinical trials require it, and so the hospital can keep a sample in case of need. (No more surgery or biopsy possible in that body location in my case, ever).

3/ I would demand that the epidural be done by a confirmed anesthetist. I learned later that mine was done by a young intern and she made a breach. Which caused horrible pain. We already suffer enough without having to bear being a guinea pig.

Finally, and this I have done and recommend, is to be followed by a psychologist specialized in oncology. because mentally you have to accept the disease AND the mutilation of your body and intimacy.

to finish more positive, a word from my radiotherapist, it made me sad because I once again "escaped" from recovery, but which is rather reassuring when all the conditions are met: after APR, if the margins are healthy, you will never hear about this cancer again.

Sorry I didn’t wanted to fear anyone, just share my experience to make others a little better hopefully. I wish you a lot of courage, find out and do not be afraid to have demands, it is your body and about your life.

️️

Helen

Your account is hair-raising, I am so sorry for what you have been through.  France is held up as one of the best countries for medical care but it sounds as though your experience fell far short of that in more ways than one.

You have had such a lot to deal with in your ongoing treatment and you are in my thoughts constantly.  Big hug from me too.

Irene xx

Bless Helen94  luckily I'm back home now, well, at my mums bungalow, i was under no illusion what this would entail, im a bugger for researching things

I was in for 11 days, i honestly think the only reason they let me go is because I was and still am, showing all the positive signs of recovery, all the grafts have taken really well and my body seems to have held up really well, i also have a good strong willed mind that is definitely going to help me come to terms with this whole horrible episode, still early days for me, getting my head around this stoma, and still being on a 'light diet' although when I was discharged, I've been given no guidance whatsoever as to how long I may need to keep it up for, im in quite a good position as in my mum, cousin and auntie all work in our local hospital so they already knew who would become my stoma nurse, turns out my mums very good work friends with one of them so that all helps massively