Stage 4 bowel cancer

Marfalous

Advice re Neoadjuvent chemo before CRS & HIPEC op

Hello, this is my first post. I have read and gained a lot of support from reading the threads in this forum but until now have never had the courage to post myself. I am usually a night owl and find myself tapping into the forum late at night although I'm also always trying not do this as it messes up my sleep patterns. As you all know, that's not always easy to do with this condition!!
I was diagnosed with stage 4 sigmoid colon cancer almost 2 years ago, initially with liver mets. In the latter half of 2017 I had an anterior resection and adjuvent chemo (Folfox and cetuximab) at St Mark's hosp. In Sept/Oct 2018 I had a liver resection and a small intestine resection with an appendectomy at Hammersmith hosp. I've had no chemotherapy for the past 16 months.
In Jan 2019 my liver consultant at Hammersmith hosp told me my post op CT scan was NED. I was elated. As I hadn't seen my oncologist for 6 months or more at this stage I wanted to be sure that my case had been considered at their MDT. Hammersmith had not sent any information to St Marks and as I was concerned about a couple of things in the CT report so my oncologist requested another CT and MRI scan. The results of this, is that I have one new liver met and a growth in a peritoneal deposit that I never knew I had.
I had an explorative laparoscopy last month which was restricted by many adhesions but my surgeon reported he's happy to operate with CRS & HIPEC. On the same day my oncologist agreed that surgery is the best plan as the tumour load is so small that neo adjuvent chemo would not be necessary. Within a few days this plan changed to recommending neoadjuvent chemo as they wouldn't be able to offer an operation date for 5 to 6 months. My oncologist was happy to refer me to Imperial for a second opinion in the hope of having the op much earlier but this has come back in agreement with the plan. I am now going to be referred to Basingstoke and in the meantime will have a CT scan to check for progression. I'm also going to complain to the St Mark's PALS about the 5 - 6 month wait for an operation and proposing to use, at the time, unnecessary chemo.

I'd be really grateful to hear from others who have undergone or about to undergo a CRS & HIPEC op and find out if you needed to have neoadjuvent chemo, how long you had to wait for the op and where you had it. I am an NHS patient but I'd love to here from both NHS and private patients.

Thanks for making it to the end of my long post.............

Sharon Cox

@Bridget55 Would be someone you may like to talk to. I’m sorry you’ve experienced such delays :x:

Chelts

I had my op at The Good Hope in Sutton Coldfield. I had no chemo before the op and the operation was done within a month of being referred. I certainly wouldn't of been happy with a 5-6 month wait.

Marfalous

Hi @Chelts thanks for confirming for me that the wait is unacceptable. It helps to get another perspective from someone whose already gone through it. It'll gives me more confidence when I make a complaint to PALS today!

Baxter2

Good morning @Marfalous and a very warm welcome to the forum!

I had CRS and HIPEC done through private health insurance in Basingstoke March 2017. Unfortunately I'm at high risk or reoccurrence so I had chemo (Folfiri and Cetuximab) just before and after the op. I had 6 months break from chemo in order for me to have a liver resection in the Jan and CRS and HIPEC in the March of 2017. For me, there wasn't actually a wait.....more really trying to hepbet the timing right for us all (I had to fly down there as I live in Fife) please have a read of my profile if you wish and do t hesitate to ask away with any questions either on this thread or by pm. I should probably add, I'm still on chemo (Folfiri and Cetuximab) and having cycle 62 tomorrow!

Best wishes

Karen💛💚❤️💙💜

Marfalous

Hi @Baxter2 , thank you for your response. Wow, have you been through the wringer and come out so well the other side! Yours is an inspirational story for me as you have shown the determination to get the best outcome in the face of a lot of negativity. I'm so happy for you that you've found your sweet spot with the chemo your on. I found out today that I'll be on Folfiri and Cetuximab as well if I start, so I hope I have a similar response to you. I only hope that I have it post op, not before.
Like most, I don't like to complain but I'm determined not to take this long wait for surgery lying down. I went to a chemo consultation and found out that I've been put down for 4 to 6 months of treatment so I'm potentially looking at a 5 to 7 month wait for the surgery that they've said that I'm ready for now.......it's so frustrating.
I put in a complaint with the hospital Pals people today so hopefully this might influence my position. In the meantime, I have to wait for the second opinion process with Basingstoke. With a lot of chasing at Imperial, a desk based review took two weeks.

Does anyone know if you can seek a second opinion with more than one hospital concurrently? There are two other hospitals that I know of that offer CRS & HIPEC (Christies in Manchester and New Hope in Sutton Coldfield). It would save time to contact them all at the same time as it might be a capacity issue at them all.

Baxter2

Hi @Marfalous

I can understand your frustration. If you were told the chemo will get you in a better position for surgery then fine.....but if it's truly a capacity issue it seems extremely long!! The Christie is the other centre of excellence for HIPEC as far as I understand and I don't see what's wrong with requesting second and third opinions concurrently. The only thing is, the person referring you might do? I'd certainly ask the question as you don't want to be hanging around for months when as you say, you're ready for surgery now. It sounds like you're on the ball and ready to seek out the very best outcome available to you. Id always recommend being your own advocate and it sounds like you are! Please let us know how things go if you can?

Best wishes

Karen💚💜❤️💙💛

Bridget55

Hi @Marfalous and thanks @Sharon Cox for highlighting. Must admit it seems crazy to have a wait. Usually they want to try systemic chemo first but that’s if there is something to fix. There is then an 8 week lag to have the op to enable the chemo to filter through the body. As @Baxter2 has said then you could try Christies ( I’m under them) and they will review through their MDT. My understanding is that they want to tackle it with Hipec sooner rather than later as more chance of success. Bridget :x::x:

mountainwoman

Hi @Marfalous,
I agree with the others. They should only give you chemo before the operation if they think it's going to be helpful. I had a couple of rounds of chemo as my hospital thought my tumors needed to shrink before I could have an operation. It took about a month to get my appointment at Basingstoke who then said to stop the chemo (I had ovarian metastasis which apparently don't respond well to chemo) and do the operation. So if they can operate I think they normally want to get on with it. Definitely get another opinion.
All the best

Marfalous

Thank you @Baxter2 @Bridget55 @mountainwoman ...It really helps to hear others that have gone through it and confirm that I should push for further opinions. Baxter2 I hope your chemo went well today.

My hospital will only send out referrals by snail mail unless I can give them the specific email for the surgeons secretary. I'm starting to get overwhelmed with trying to find names of surgeons and their contact details at Basingstoke, Christies and New Hope. It's a bit easier to find their private practice details but not their NHS contact details. I'd really appreciate it if anyone could give me the contact details of their surgeons and their secretaries. Phone numbers and/or emails if possible.
I'm sorry if I'm sounding a bit desperate but I'm starting to freak out about not starting chemo. It's so weird how you can suddenly wobble in a split second.

Baxter2

@Marfalous

I think Mr Cecil is the lead surgeon for colorectal surgery at Basingstoke. I don't know of specific contact details but you could call the Basingstoke hospitals switchboard and ask to speak to his secretary? They all also do private work at the nearby BMI hospital. It's the Hampshire clinic. They may be able to advise too? I'd imagine your oncologist would have contact details?

Hope this helps. Chemo was fine today. Another one under my belt!!

Karen💛💚❤️💜

Marfalous

That's great @Baxter2 and @Chelts Thank you.

I called Basingstoke hospital but they weren't picking up, but I'll try the the Hampshire Clinic. Mr Youssef at the Good Hope sounds good and I'll pass these names on to my oncologist. @Chelts did you have surgery with the NHS?

@Bridget55 Do you have a contact at the Christie for CRS and Hipec surgery?

Thanks again for all your help

Chelts
@Chelts did you have surgery with the NHS

Yes I did. Got referred by my oncologist

Marfalous

Thanks @Chelts thats good to know

Bridget55

Hi @Marfalous . My surgeon Mr Wilson is a private surgeon but you could call christies outpatient dept and ask if Mr Wilson sees nhs patients and if not who the equiv nhs contact is at Christies on o1614463993 :x::x:

Marfalous

Thanks @Bridget55 I really appreciate that information, it's a great help to me :x::x:

GD62

Hello @Marfalous , I had three months of capox prior to CRS/HIPEC for a peri met and liver mets which shrunk the primary tumour, waited another 8 weeks and had crs/hiped then a liver resection about six to eight weeks later. Then they offered me a further three months mop up adjuvant chemotherapy. I went back to work within four months and still working awaiting my early retirement pension. I was operated on at Christies and liver at Manchester Royal, and never had any delays and can support @Bridget55 in that they are excellent and do everything possible to give you the best chance of long term survival.

Best wishes and good luck :x:

Marfalous

Hi @GD62 , it's great to hear that you've had a good outcome following your treatment. Its amazing that you were back at work within 4 months after such big surgery and I wish you luck with getting early retirement. I hope to have the surgery as soon as I can and Christies would be a great place to have it......I'll keep pressing on for referrals. Thanks for the information and giving me hope that this procedure really does give results. :x::x: