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Decision time- thoughts welcomed

steved
Posts: 835
Joined: Apr 2004

I don't often post about myself but have been hanging out awaiting a surgical opinion that is finally in today and I now face decision I would welcome people's thoughts on.

I am a 39 year old diagnosed with rectal cancer in 2004- treated traditionally with chemoradiotherapy and surgery. Was 7 years clear until November 2010 and have since been diagnosed with a recurrence in the pelvis. It sits on the right side at the sciatic notch through which passses the sciatic nerve. This is causing pain and progressive weakness in that leg. I have been re-irradiated (EB radiotherapy not cyberknife as it would fry the nerve and tumour is too big) and been back on chemo for over a year- now on avastin and xeloda cycles every two weeks. These are helping but the cancer is very slowly progressing. I have no signs of spread elsewhere on multiple PETs/ MRIs etc.

I have had a range of surgical opinions mainly for a pelvic exenteration (a clearance of all the pelvic organs and cancer which is the main surgical treatment for this). However, it is clear that would not be likely to be curative as it can't clear the cancer without destroying the nerves and blood vessels to the leg. I was then told there was no surgical option and moved into the palliative care process with a projected life span of a couple of years.

Following this the surgeons rediscussed the case (informally at a conference they were all at- typical bloody docs!) and recommended an opinion from a Danish group who have published the only series of patients who have hemipelvectomies for this. Ultimately their opinion is that it is worth doing.

The surgery is removal of ther bladder with a permanent urostomy (urine bag) and permanent colostomy as they remove everything they can find the pelvis. They also remove the side of the pelvic bone and amputate the leg. I would be left with two bags and one leg. I may be able to have a prosthesis but not definitely. They cannot say how likely it is to clear the cancer as only eight have been done in the published series and no one has done it in the UK. The Mayo has done some but never studied/ published outcomes.

My dilemma is how much of a gamble does one take in search of a cure. The surgeons feel there is a 'good chance' of it achieving an R0 resection (removing all the tumour with clear margins- potentially curative) but can't be more exact. My biggest fear is that I will do it and lose a significant part of quality of life and still have the cancer at the end. However, I have two young children, 5 and 8, who I am desparate to see grow up, and feel I have been offered a chance. There are no other potentially curative options- without it my cancer will progress, it will render my leg useless anyway and it will kill me.

I am scared and uncertain.

steve

Cathleen Mary
Posts: 827
Joined: May 2011

Steve,

This is a terribly difficult decision but I sense the answer is within you. Daddy is Daddy is Daddy seems to speak from your posts.
I have nothing to add to the words of wisdom offered but want you to know that I hold you and those you love in my heart.

Your posts have frequently helped me and I want to thank you.

Remember, kids are incredibly resilient. They are very blessed to have you as their Dad.

Wishing you strength, courage, peace,and many more years.
Cathleen Mary

manwithnoname
Posts: 404
Joined: Jun 2012

" There are no other potentially curative options " that's what our oncon told us for our son's brain tumour, gave him a few months....we aren't going down without a fight.

First of all I shouldn't even be here, I don't have colorectal, don't even know anybody with it, I came here coz I found Pete and his Gc-MAF experiment.
I gather you are a Doc. so you know how bad it is with recurrent tumours.

Now take this how you want, I hope you will read the literature and make an informed decision.

If you have a tumour sample in paraffin block do Proteomic testing, Dr. R.E Brown Texas will give you the pathways to target. $5000 US
Newcastle disease virus, you can use lasota strain if you can't find MTH-68
Metformin 2000mg per day
Thioridazine 21 days max
Both of the above target cancer stem cells without damaging normal cells.

Now if you can afford it; Gendicine gene therapy maybe an option. @$35000 US (In China) Gendicine targets P53

They told us it was 'possible' to get our son's tumour with the risk of his sight and then him dying anyway not long after, it's a quality of life thing...

Sorry you are in this situation, take care, and what ever decision you make is the right one.

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

So sorry that you have to make such a difficult decision. Glad that you are able to talk to your wife about this, that is important and she can help you talk it through. You are in my thoughts and prayers.

Kim

steved
Posts: 835
Joined: Apr 2004

Thanks again for the more recent replies.

There has been some good alternative suggestions made and I have had some PMs about others. I have personally found this challenging as it hits that spot of doubt we all carry about 'have I done everything possible'. I think that is why conflicts on this board often stem from that difference- it is an acutely sensitive spot to all of us as we make our treatment decisions on this journey.

I have decided at present not to advance any alternative treatments but have learnt a lot from people's suggestions and taken them seriously enough to now have a pile of information on many of them including traditional chinese treatments. I guess much of it comes dwon to finding those treatments that also best match our own views, values and core beliefs. For me those sit within conventional medicine and the others I have found may play a supportive role for me at the right time.

So I am continuing to find more about the surgery and am still leaning that way. Will decide when we meet the surgeons and the team in a couple of weeks. Will talk to our kids when we know more after that. Writing my thoughts and reading all yours has helped enormously in clarifying my thoughts. Ultimately my over riding drive is as dad to my kids and that is what I want a chance to be into the future.

Thank you all again for the information. thoughts and prayers (even as an atheist they mean a huge amount and equate to unmeasurable kindness from people I have never met).

steve

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Hi Steve

I remembering reading your post months ago, and have been praying over the miles for answers and peace for you and yours. And now, here the time has come. I know you have some challenging days and times ahead of you. I so so do know that in your position, that I would be making the same decision, with the same uncertainity and the same fear. The 2 young children are the clenchers for me. It is almost like you have to put your pride aside and realize the true core piece of who you are will never change and your children's love will ground you and get you through this. (not to mention your wife, family and friends). Steve, you will not be less of a man with one leg and 2 bags. YOU WILL STILL BE STEVE, A DOCTOR, A HUSBAND, A FATHER- a valued memeber of this board, and a contributor to your community and patients. YOU WILL SEE THOSE GREAT KIDS GROW UP!!!!!!!!!!!!! Believe it, it will happen.
Hugs and all the best from Minnesota,
Patty

rick1964's picture
rick1964
Posts: 5
Joined: Oct 2010

Steve

I'm sorry to hear about your problem. I also had Rectal Cancer in 2009 Stage I and I'm NED. This is my opinion on this matter because I have thought about this if I had recurrence in the pelvis area. I told my wife that I would not do surgery and just would fight it with Chemo. Losing everything in your pelvis area plus your leg with out knowing if it will work or not it just to much. I made up my mind on this matter long time ago in case this come up down the road for me. Good luck to you on your decision.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Steve...the other night hubby and I went out for dinner to a buffet restaurant ... sitting in a wheel chair was a young dad with his wife and two little boys. He had one leg missing from what I could see was way way up (he was at the next table and I was drawn to looking at him because I immediately thought of you....trying not to make my curiosity obvious) I was looking at this big strapping young man (and I mean big strapping, the rest of him was quite built) in a wheel chair and wondered what had happened to him. My normal thoughts were he must have been in some sort of accident, but maybe he had this cancer. He was back and forth to the buffet with his kids, enjoying a dinner out with his family.

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