Recurrence

[Dennyp]

I had a recurrence to my liver, MRI showed a single lesion. When they did surgery they found 5 other small liver lesion plus a few small tumors on my diaphragm. They didn’t finish the surgery, they closed me up and sent me back to my oncologist. I have an appointment with her next wee. This seems unique. I’m reaching out to see if anyone else had anything similar, and what the options are.

[DarknessEmbraced]

I'm sorry that your cancer came back. *hugs* I hope your recovery and appointment go well.

[rp1954]

Basicly their default view is that it's a non curative surgical situation, now "chemo forever". Extra effort may turn up better answers than the std SOC.

Sorry for your experience. I suspect the system failed you in the monitoring, by relying primarily on scans when likely there were seriously suspicious blood panels in CEA, CA199, LDH, ALP or others. Too late on the alarm and response, inadequate on the chemistry on several levels, for monitoring and prevention.

I'm not saying you're drs failed the NCCN protocol, I'm saying the NCCN protocol itself was likely inadequate for prevention and for a timely, effective salvage response in your case. If you could share your current CEA, CA199, LDH, vitamin D levels, and any other blood work I talk to others, you might help yourself as well as others, now and in the future.

Although different than your situation, I found this paper on an isolated CRC met to the diaphagm informative in several areas.

[Dennyp]

I'm sorry that your cancer came back. *hugs* I hope your recovery and appointment go well.

Thank you.

[Dennyp]

Basicly their default view is that it's a non curative surgical situation, now "chemo forever". Extra effort may turn up better answers than the std SOC.

Sorry for your experience. I suspect the system failed you in the monitoring, by relying primarily on scans when likely there were seriously suspicious blood panels in CEA, CA199, LDH, ALP or others. Too late on the alarm and response, inadequate on the chemistry on several levels, for monitoring and prevention.

I'm not saying you're drs failed the NCCN protocol, I'm saying the NCCN protocol itself was likely inadequate for prevention and for a timely, effective salvage response in your case. If you could share your current CEA, CA199, LDH, vitamin D levels, and any other blood work I talk to others, you might help yourself as well as others, now and in the future.

Although different than your situation, I found this paper on an isolated CRC met to the diaphagm informative in several areas.

I kind of think that is what I will be told. I wonder if there is a way it could go from inoperable to operable if the diaphragm tumors go away?

[Rock_Robster]

I’m sorry about the news. I was planned to have a liver resection (my 3rd), and on the table they discovered extensive distant lymph node disease. So they converted the surgery to a lymphadenectomy, and we treated the liver lesions with radiation instead. As RP said, if a large surgery isn’t likely to be curative then they often aren’t prepared to take the risks associated, and would prefer less invasive treatment.

Good luck, I hope the next steps yield some more treatment options for you (eg you could ask about a combined resection with CRS on the diaphragm, perhaps using radiation or thermal ablation on some of the smaller lesions if necessary).

[Dennyp]

I’m sorry about the news. I was planned to have a liver resection (my 3rd), and on the table they discovered extensive distant lymph node disease. So they converted the surgery to a lymphadenectomy, and we treated the liver lesions with radiation instead. As RP said, if a large surgery isn’t likely to be curative then they often aren’t prepared to take the risks associated, and would prefer less invasive treatment.

Good luck, I hope the next steps yield some more treatment options for you (eg you could ask about a combined resection with CRS on the diaphragm, perhaps using radiation or thermal ablation on some of the smaller lesions if necessary).

Thanks. I would love that option, chemo for life is daunting. I hope maybe a combination of chem, radiation and surgery can get me back to NED. Keeping my fingers crossed.

[beach sunrise]

I am also keeping fingers crossed that you find a good combo therapy.

[Dennyp]

I am also keeping fingers crossed that you find a good combo therapy.

Thank you!

[Dennyp]

Basicly their default view is that it's a non curative surgical situation, now "chemo forever". Extra effort may turn up better answers than the std SOC.

Sorry for your experience. I suspect the system failed you in the monitoring, by relying primarily on scans when likely there were seriously suspicious blood panels in CEA, CA199, LDH, ALP or others. Too late on the alarm and response, inadequate on the chemistry on several levels, for monitoring and prevention.

I'm not saying you're drs failed the NCCN protocol, I'm saying the NCCN protocol itself was likely inadequate for prevention and for a timely, effective salvage response in your case. If you could share your current CEA, CA199, LDH, vitamin D levels, and any other blood work I talk to others, you might help yourself as well as others, now and in the future.

Although different than your situation, I found this paper on an isolated CRC met to the diaphagm informative in several areas.

Sorry, I forgot to post my CEA levels. They were steadily rising for about a year ranging from 2.7 topping out at 13 when the found the liver lesion. We did several Ct, PET and MRIs in that year looking for the recurrence and didn’t find it until last month.

[rp1954]

Basicly their default view is that it's a non curative surgical situation, now "chemo forever". Extra effort may turn up better answers than the std SOC.

Sorry for your experience. I suspect the system failed you in the monitoring, by relying primarily on scans when likely there were seriously suspicious blood panels in CEA, CA199, LDH, ALP or others. Too late on the alarm and response, inadequate on the chemistry on several levels, for monitoring and prevention.

I'm not saying you're drs failed the NCCN protocol, I'm saying the NCCN protocol itself was likely inadequate for prevention and for a timely, effective salvage response in your case. If you could share your current CEA, CA199, LDH, vitamin D levels, and any other blood work I talk to others, you might help yourself as well as others, now and in the future.

Sorry, I forgot to post my CEA levels. They were steadily rising for about a year ranging from 2.7 topping out at 13 when the found the liver lesion. We did several Ct, PET and MRIs in that year looking for the recurrence and didn’t find it until last month.

The more of your bloodwork that you can post, the more we can talk about biological differences, timelines and possibilities. A lot of us just order the extra panels ourselves. It costs more time and money explaining, arguing, begging things vs just simply done.

You are now looking for biological and statistical hints on escape routes to NED. Only a few routes are conventionally available, tend to be low %s, and often not offered by the onc shop around the corner. The more the better and you often need to be your own facilitator.

[JulesW]

I had peritoneal involvement and got Folfiri last fall which dropped my CEA levels significantly and then I interviewed a number of surgeons from around the country. I had a cyto reductive surgery in December of last year. I'm aware that there's a fairly high rate of recurrence but some people seem to be doing okay years later.
My top surgeon recommendations would be Dr Turaga at Yale, Dr Kasspooles in Kansas or any of the surgeons at UCSD. You may get some pushback but it's the surgeons who can tell you yes or no definitively. The liver involvement makes it a little more tricky but I had lung involvement when the surgery was done and then had a final spot ablated earlier this month in my right lung close to some important blood vessels FYI

[Dennyp]

After giving it thought I’m a little disappointed my surgeon didn’t just remove the diaphragm lesion and do the liver surgery. I think a more aggressive surgeon would have done it and spared me a second surgery. I really like him and I have faith in his skill but I think he’s too conservative. I will discuss using a different surgeon with my oncologist for my next surgery.

[beach sunrise]

That is disappointing. I hope you find an aggressive skilled surgeon!

[Dennyp]

That is disappointing. I hope you find an aggressive skilled surgeon!

Thanks, I’m confident I will.