Pelvic recurrence advise

steved

For many Stage 4 survivors here the experience is of distant metastases in liver and lungs but for myself the recurrence has been in the pelvis. The MDT are rather pessimistic about the likelihood of being able to offer surgery as it is on the side wall near nerves and vessels. They are throwing all at it- hopefully cyberknife and 3 months chemo- before reviewing surgical options. The options would be a full pelvic clearance or a hind quarter amputation- neither of which are guarantees and both of which have their problems (the latter scares the hell out of me!).

I would welcome advise from those who are further along dealing with pelvic recurrences- how was the experience of chemo and radiotherapy? Have people had surgery for this and with what outcome? Any other useful approaches that have helped?

Considering the rather bleak view we are beginning to think of palliation rather than cure as one of the more likely 'best' outcomes but that is a huge shift as I am only 38, have two kids 3 and 6 and have had seven years post initial resection during which I began to think I had truly beaten this.

All advise welcomed,
steve

CherylHutch

Huggggs Steve!
I don't have any experience with what you are going through, Steve, so can't offer you any advice on the possible plans and will not even attempt to.

But I just responded to Rick's topic and what I said there applies to you here too. It's a double whammy for you since you had made it to seven years post original resection. There's no doubt in my mind that we would all have felt exactly the same as you... that if we had made it to seven years, then we had beaten the monster and were now a long-term survivor. So I can only imagine the shock you are in right now to have learned otherwise.

I'm thinking that this shock you are feeling is not going to go away too soon... and your imagination is going to fuel the embers. But try to hang in there and remind yourself that you are most likely in shock, as well, you have a very healthy imagination that is going to try and imagine the worst scenerios. Once your doctors and you have a much clearer understanding of what your plan is, then the shock should fade away and your imagination should settle down.

One day at a time... one foot in front of the other.

Huggggs,

Cheryl

Moesimo

second opinion
steve,

I also cannot imagine what you are going through. I know you dont live in the US, but are you able to send a copy of your scans for a second opinion perhaps at MD Anderson or another cancer center in the US. I had my surgery at the Brigham and Womens in Boston and would be happy to give you my surgeons name. I am not sure how this would work for you. Perhaps if you went to their site you could email them initially. Good luck.

Maureen

Sonia32

I have nothing really to offer
Apart from if it's ok I will be praying for you. Really sorry for your re occurance, but I hope your onc. etc can come up with a plan of action. You are only four years older then me, just makes me think. You have two children, a wife, friends etc, you have a lot to fight for. Hope you'll stay with us while your on this journey again.

Hugs

Crow71

Hey Steve
I didn't respond to your last thread; so I thought I would chime in this morning and say Hi. I'm 39 with a 5 year old son and daughters age 9 and 11.

I'm really sorry to hear of your recurrence. 7 years!!! That **** sucks. Well you've beaten this once, perhaps you can do it again. The only thing that sounds clear right now is that it is time to lace up your **** kicking boots. You sound like you are ready to do whatever it is that you need to do.

In you other post Steve, you worried about sharing bad news and bringing folks down. I don't think you should worry about that at all.

Our situations are not too similar. I'm dealing with liver, lung, and peritoneal mets. But your post caught my eye because I do have some pain in my right hip where a peritoneal met is pushing against something. (Fathers of young kids always catches my eye as well.)

I guess neither one of us are in great shape right now. Your surgical options don't sound too appealing, but some chemo and cyberknife may put you a much better situation. I guess the only recommendation I have would be to get a 2nd opinion. Not because you might lack confidence in your team, but because your case is not very straight forward.

Take care Steve.

Roger

charliesangel

Hi there
Hi there, my father has suffered the same recurrence as you, and I must admit it has been difficult...

He had a recurrence after 11-12 years NED!! The tumor is in the S1 and S2 nerve root which does not make him a surgical candidate. We live in Australia where there is no Cyberknife so we have now been to Malaysia twice for it. He has also been on Folfiri and now Xeloda which has keep the tumor under control and his CEA is currently 6.7... It has been 1.5 years since recurrence and things are travelling smoothly (well as smoothly as they can with the big C) at the moment.

The worst thing about this recurrence is his decreasing mobility, he has gone from being an extremely active man to using a walking stick.

Are you in pain? If so the Cyberknife will take that away completely (in most instances)...

Also note that Cyberknife can very successfully treat a pelvic recurrence... if you wish to PM me or let me know more about the exact location of the tumor I have done a lot of research and may be able to help, just ask! All is not lost, please don't ever lose hope!!!

xxx

charliesangel

charliesangel said:

Hi there
Hi there, my father has suffered the same recurrence as you, and I must admit it has been difficult...

He had a recurrence after 11-12 years NED!! The tumor is in the S1 and S2 nerve root which does not make him a surgical candidate. We live in Australia where there is no Cyberknife so we have now been to Malaysia twice for it. He has also been on Folfiri and now Xeloda which has keep the tumor under control and his CEA is currently 6.7... It has been 1.5 years since recurrence and things are travelling smoothly (well as smoothly as they can with the big C) at the moment.

The worst thing about this recurrence is his decreasing mobility, he has gone from being an extremely active man to using a walking stick.

Are you in pain? If so the Cyberknife will take that away completely (in most instances)...

Also note that Cyberknife can very successfully treat a pelvic recurrence... if you wish to PM me or let me know more about the exact location of the tumor I have done a lot of research and may be able to help, just ask! All is not lost, please don't ever lose hope!!!

xxx

7 years
Me again, I just read your other thread and noticed that you had been NED for 7 years... although it sucks big time that it's back, one positive in this mess is that the tumor is more than likely very slow growing...

xxx

maglets

charliesangel said:

7 years
Me again, I just read your other thread and noticed that you had been NED for 7 years... although it sucks big time that it's back, one positive in this mess is that the tumor is more than likely very slow growing...

xxx

oh Steve
Steve that is so so bad......seven years......you poor thing.....Cheryl is right.....first shock then absorb digest wait and then a path will emerge.....

Steve I am so sorry but one foot in front of the other always is best....

so many hugs to you my friend

mags

abrub

Ask about IP chemo
See if Intraperitoneal Chemo is an option. I'm not talking about HIPEC, but rather chemo where they place a draining port into your belly, and fill the peritoneal cavity with chemo so that they can 1. use stronger chemo and 2. have it directed to the tumor areas.

I had several cycles IP chemo at Memorial Sloan Kettering for my Appendix Cancer with peritoneal mets.

It's certainly worth asking about.

Alice

Jewells

Pelvic recurrance
I had a hysterectomy because my recurrance was in my right ovary. They just found a new spot on my left side. I can honestly tell you that chemo my second time around was terrible! But, obviously I made it through. I have a 14 year old son. He is my motivation. I have always been the only constant adult in his life. So, people like us have no choice but to continue fighting and surviving for our children. I can't offer you any advice about chemo or radiation, but I can tell you that we can survive anything that is thrown at us. Our experience is making our children stronger also.

RickMurtagh

scary stuff
I have started writing a response to your post six or seven (okay 8 now) times and have yet to get very far. You are a little farther along in your diagnosis/treatment as I just found out three days ago, but boy things are happening fast. I hardly know what to think, never mind what to say.

Let us know how things progress. I for one woud love to hear about your journey through this as it all scares the crap out of me too.

My treatment is going to be at Memorial Sloan-Kettering with Dr. Paty. I hope you have the opportunity to be treated in UKs version of MSKCC. I have no advice for you obviously, but know you will be in my thoughts and prayers and any advice you can share will be most welcome!

abrub

RickMurtagh said:

scary stuff
I have started writing a response to your post six or seven (okay 8 now) times and have yet to get very far. You are a little farther along in your diagnosis/treatment as I just found out three days ago, but boy things are happening fast. I hardly know what to think, never mind what to say.

Let us know how things progress. I for one woud love to hear about your journey through this as it all scares the crap out of me too.

My treatment is going to be at Memorial Sloan-Kettering with Dr. Paty. I hope you have the opportunity to be treated in UKs version of MSKCC. I have no advice for you obviously, but know you will be in my thoughts and prayers and any advice you can share will be most welcome!

Dr. Paty is wonderful
Just bring books and be prepared to wait... and wait.... and wait.... He runs very late (can be several hours), but his patients (me included) know that he is well worth waiting for. I see him for my next follow-up in June.

You can ask the front desk to call you when you are next, so that you can leave the waiting area.

PM me if you have any questions re MSKCC.

Alice

steved

Thanks to all
Thank you for all the advise and support. It is interesting to hear others experience and nice to not be so alone and have the sense of being the only person to ever be so bloody unlucky.

Am starting chemo next week- 6X2 weekly cycles of oxaliplatin iv and xelodo orally with the hope of adding in avastin once the funding for it is sorted (not on standard protocols in the UK so they have to gain further funding before starting it- confident they will though). Cyberknife people said it is too large for them to do now but will review post chemo to see if it has shrunk enough. Otherwise they will consider standard radiotherapy but the risks are higher as I have had it before and so the other stuctures in the area are at risk eg small bowel perforation.

Have started to get our heads around the concept of it being palliative and about controlling it rather than curative which is a huge shift from last time but still hold out hope for a possible operation being offered if the response to CRT is sufficient. The surgical options are a pelvic clearance or a more radical hind quarter amputation. Neither fill me with joy but just facing one step at a time for now.

Off for two weeks holiday and luckily they have organised chemo sessions around it- I think they recognise having a break is just as improtant as anything else which is good. I know my family and I sure could do some laying around on the beach in a happy bubble of denial for a bit!
steve

plh4gail

I'm so sorry to hear about
I'm so sorry to hear about your reoccurance but glad you had 7 years free of the dang disease. I have no advice to offer but lots of good thoughts pushing your way.

Love and Hugs, Gail

Unknown

plh4gail said:

I'm so sorry to hear about
I'm so sorry to hear about your reoccurance but glad you had 7 years free of the dang disease. I have no advice to offer but lots of good thoughts pushing your way.

Love and Hugs, Gail

This comment has been removed by the Moderator

tootsie1

Sorry
Steve,

I'm sorry that I can't offer any good advice to you on this. Just want to say that I'll be praying that the doctors find the best solution for you. I wish you well in this difficult journey.

*hugs*
Gail