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Stage 4 bowel cancer

wyc15

HIPEC Abandoned

My mum was supposed to have her HIPEC surgery today. They had to abandon it because once they opened her up there were too many. They were too small to show up on scans and not much of a marker. They took out what they can. They now said chemo. My question is will chemo blast the tumours being small and will she ever be considered for HIPEC again or will it just be chemo for life? Liver clear and clear lymph nodes.

Bear G

Hi @wyc15
Just as reassurance, and please take this positively, your Mum is being treated at one of the world’s leading cancer centres, The Christie, and is therefore being cared for by leading specialists.
You could look for a second opinion and you’re right, Imperial in London is another great centre that specialises in HIPEC. Good Hope is also a good centre. But, for now, I’d be inclined to follow the advice she’s been given and embrace the chemo.

Please also reassure her that chemo is nowhere near as bad as it used to be and many get through with very few or even no side effects. We can help by giving advice on how to get the most from her specific regimen.

Also, the chemo is likely to only be for a few months for long term gain.

Big hugs
Bear
:x::x:

Chelts

I was lucky in that I only had only 1 fairly large tumour so they could operate on me.
I'm not sure about the Imperial treating more advanced cases- HIPEC is an established surgery and most hospitals carry out the same procedure , so it will down to the surgeon as to whether he/she believes it can be treated.
Something else to think about is that a number of hospitals are moving from HIPEC to PIPAC, where instead of soaking the abdomen in chemo, they high-pressure spray the chemo into the abdomen in the belief that the spray will penetrate further into hidden areas

Chelts

I agree totally with what @Bear G says and would also add that in no way is HIPEC without after affects.
It is major surgery that can take up to 12 hours and recovery time is upto 6 months, so it almost equates to standard chemo treatment time.
I had a number of issues post-op.

wyc15

I came across PIPAC on here and have asked my brother to ask today about that.

Chelts

Pressurized Intraperitoneal Aerosol Chemotherapy (PIPAC)
PIPAC is pressurized intraperitoneal aerosol chemotherapy. It is a new method of giving chemotherapy to patients with advanced abdominal cancer in which chemotherapy is given directly into the abdominal cavity.

Routinely, chemotherapy (cancer directed therapy) is administered intravenously (through the veins) as a drip. Intra-peritoneal chemotherapy is given directly into the abdominal cavity in patients who have cancer spread to the peritoneum that is the lining of the abdominal cavity and its organs.

How does PIPAC work?

In PIPAC, a chemotherapy vapor is generated using a special device called ‘Capnopen’. This procedure is performed through laparoscopy. In laparoscopic surgery, the pressure in the abdominal cavity is raised. The combined effect of this increased pressure and vaporized chemotherapy, increases the drug concentration in the cancerous tissue. A very small dose of chemotherapy is used leading to lesser side effects. Recent studies have shown that this form of chemotherapy delivery can be as effective as intravenous chemotherapy.

What are the benefits of PIPAC?

It is a simple procedure for which the patient has to be in the hospital for one or two days only. The side effects are minimal and the recovery is fast. It has shown to be effective when systemic chemotherapy has stopped working or in patients who cannot tolerate systemic chemotherapy. Multiple sessions or PIPAC can be given at intervals of 6 weeks each. 1/10 the dose is used to produce the same effect as systemic chemotherapy. PIPAC does not interfere with routine chemotherapy and both can be given together to produce a better effect.

Which patients benefit from PIPAC?

Currently, PIPAC is used for patients who have peritoneal tumor deposits arising from ovarian cancer, colon cancer, stomach cancer, appendix cancer and some rare cancers of the peritoneum. Patients who have fluid build up in the peritoneal cavity from any cancer that does not respond to chemotherapy can benefit from this treatment. PIPAC is given to patients who have received chemotherapy before and usually more than 1 type of chemotherapy.

wyc15

Thank you @Bear G. I’m just going to stay positive and hope the chemo will blast the small peritoneal mets for good. With lymph nodes being cleared I am taking that as a good thing. Someone said her husband’s peritoneal tumours shrunk by 30% on Folfiri.

wyc15

She keeps saying she knows she’s not got long left and don’t know if she can withstand the chemo and anything else that goes with it. She only turned 58 last month and not old at all. The mets on her Peritoneum were too widespread for HIPEC and they didn’t even try to remove any. I thought the whole point of HIPEC was to target the mets? I don’t understand why it can be too widespread for the surgery. Given this, are they likely to say chemo for life instead and nothing else they can do?

Chelts
Quote from @wyc15:
She keeps saying she knows she’s not got long left and don’t know if she can withstand the chemo and anything else that goes with it. She only turned 58 last month and not old at all. The mets on her Peritoneum were too widespread for HIPEC and they didn’t even try to remove any. I thought the whole point of HIPEC was to target the mets? I don’t understand why it can be too widespread for the surgery. Given this, are they likely to say chemo for life instead and nothing else they can do?

As @Bear G said, chemo these days is a lot easier to take than previously. I would not worry about whether she can take the chemo- at her age she should be well able to cope.
The alternative is not very good- unfortunately the life expectancy with peritoneal mets is not good- normally 3-6 months with NO treatment.
If the mets on her peritoneum are too widespread for HIPEC then chemo is the only option it sounds like.
This is how the PCI is calculated and the levels for whether surgery is an option or not.... www.hipec.com/knowledge-base/determining-the-peritoneal-cancer-index/

wyc15

I have read that chemo doesn’t really touch peritoneal mets though.

Barbara

@wyc15 I was turned down for HIPEC in November 2016 with a prognosis of 6 months with no response to chemo and ‘2 years, maybe more’ with a response. I currently seem to be on a one year rolling contract, like a mobile phone , as whenever I ask the oncologist he hopes I will have another year. As long as it keeps rolling I’ll accept it! I’m on fortnightly infusions of irinotecan followed by 9 days capecitabine which we are looking to try to extend and see if it still keeps things under control. The chemo is a bit relentless but quite manageable. I’m perfectly well. Hope this gives you a bit of hope.

Chelts
Quote from @wyc15:
I have read that chemo doesn’t really touch peritoneal mets though.

I did wonder why peritoneal mets have such a poor prognosis. You may have answered my query!

wyc15

[quote]Quote from @Barbara:
@wyc15 I was turned down for HIPEC in November 2016 with a prognosis of 6 months with no response to chemo and ‘2 years, maybe more’ with a response. I currently seem to be on a one year rolling contract, like a mobile phone , as whenever I ask the oncologist he hopes I will have another year. As long as it keeps rolling I’ll accept it! I’m on fortnightly infusions of irinotecan followed by 9 days capecitabine which we are looking to try to extend and see if it still keeps things under control. The chemo is a bit relentless but quite manageable. I’m perfectly well. Hope this gives you a bit of hope.[/quote

wyc15

Thank you. This has given me hope. If you don’t mind me asking, how widespread were the mets on your Peritoneum and has chemo blasted them down?

wyc15

My brother said my mum’s Cancer is too advanced, it’s everywhere in the intestines and bowel. It’s basically terminal so no PIPAC and no HIPEC.

Bear G

Hi @wyc15
Some of the terminology around cancer is scary and often inappropriate. Terms like ‘terminal’ are used a lot, I was classed as terminal and that was 5 years ago.
You may also hear ‘incurable’ and ‘palliative’. Very few diseases and disorders are actually curable by medicine - think diabetes or hypertension, it’s the same story there but they don’t get the same label.
Hopefully your Mum will do well on her chemo and bear the odds like many of us are doing.
Big hugs
Bear
:x::x:

wyc15

Trying really hard to stay positive and still hold on to hope that chemo will do something. She’s already had the bulk of tumour removed from colon in June and they didn’t see any tumours in intestine or bowel. Then she had 3 sessions of chemo before coming back but took a few months to be considered for HIPEC as they delayed it for a month as she was too frail. In hindsight, don’t know if they had continued the chemo whilst waiting for HIPEC would have made a difference to stop the spread.

Barbara

@wyc15 peritoneal mets we’re described as very extensive. There has been a lot of shrinkage on chemo. First scan showed 29% but I needed 30% to go on a trial - if it were an exam you would ask for a remark! Further shrinkage since then and stable since last summer. I was devastated when turned down for HIPEC but to be honest I now think it was the best thing as it’s such a brutal operation and I am living really well. Chemo gets in the way of things I want to do rather than reducing quality of life!

HH79

Hi @wyc15 so sorry to hear this and best of luck for chemo, I hope it works well and it often does lots love :x::x:

KatieR

Doctors at The Christie are considered “The “ Best Cancer Specialists ...your Mum is in good hands
If as you say she is frail and not in the best of health could you get some advice on helping to with her diet and exercise...like supplements fruit / vegetable smoothies Soups Protein shakes etc
Im not an expert on nutrition but I bet her appetite is not very good and she may need a lot of encouragement to drink and eat enough but it will make her feel stronger and more able to cope
This applies to you too ....its hard work supporting a loved one who has cancer and it’s really important that you keep yourself well fed and hydrated
Your Mum is getting the best care ...you dont need to understand everything that is happening ...you dont need to google about statistics and probabilities the opinions on the Internet are outdated and generally cover the worst possible scenarios
Every single patient is different,no two cancers are exactly the same and they all react differently to the treatments used
Thats the best thing about being treated at a Centre of Excellence....they know what they are doing and thats really all we need to know
Cath :x::x:

Tiffany

@wyc15

Hi there. Not sure if this will be of any help to you but just wanted to chime in. My husband was diagnosed in June 15 with bowel cancer that had spread extensively all over his peritoneum. He had a laparoscopy so the oncologist could see exactly what he was dealing with - he said it looked like paint splatters all over and the disease was advanced. Just to add to the difficulty of things his primary tumour was actually never found!

He was classed as inoperable and incurable. However, after 6 months of FolFox and Avastin he had an 80% shrinkage of the tumour. He was then switched to capecitabine with Avastin and after another few months was declared NED (No Evidence of Disease). After this he was on a maintenance routine of 5FU with Avastin for another two years. He is now off all chemo drugs and life has resumed to normal (ish) and his last scan still showed no evidence of disease.

There is hope without an operation. You can click on my name to read what else I did to try to help my husband. Thinking of you and wishing you all the best. Tiffany :x: