A fractured second opinion

[pondhockey]

I'm the caretaker to my wife, 37 dx T4aN2M1 on 7/19. We've now been through three surgeries in the past 16 months (details in signature). After the liver resection (second surgery), the cancer appeared very quickly in the left ovary. This lead to a recent modified radical hysterectomy with bilateral salpingo oophorectomoy where they confirmed a 3cm solid tumor in the left ovary, 2 positive nodules on the uterus, and microscopic disease in the uterus and the right ovary. The spleen showed several suspicious "freckle like spots." The surgeon showed the picture to us, but was not sure what to make of it. The spots on the spleen did not look nodular or bumpy which is the reason for suspicion. They did not remove the spleen due to high risk of complications. The surgeon proclaimed that she "got it all" at the follow up visit.

We're now working our way through various appointments with the ONCs to determin the path forward. The GYN/ONC surgeon who did the hysterectomy and our second opinion at MSK are saying that this is not peritoneal carcinomatosis while our primary oncologist is proclaiming that the cancer is confirmed on the spleen and that my wife has PC. We're at a bit of a crossroad here and trying to figure out how to move forward.

We've heard from a few of the medical professionals that spread from the cecum/right colon to the ovary happens frequently in younger women with CRC. Has anyone else been through something similar? We haven't been able to find much useful information on the topic and we're looking to plan for what might be next. Do we start consulting with HIPEC and/or EPIC surgeons?

Our current treatment protocol is metronomic xeloda, IV vitamin C (new for us), CIM, PSK, celecoxib, and some repurposed meds and various other naturopathic additions. MSK is suggesting a Xeloda cycle, while our primary is suggesting FOLFOX or FOLFIRI. It's hard to accept FOLFOX/FOLFIRI treatment plan when we are technically NED and we're trying to avoid a chemoresistance scenario. Are there good reads/literature out there about efficacy of the oxi or iri protocols vs xeloda in a postadjuvant scenario for met spread? How have other users progressed from here?

[stu]

Hi ,
I can see your dilemma, in a good position being NED but also wanting to ensure the most effective pathway is selected going forward .
One thing I would do if was my family member would be to have a meeting with a Hipec surgeon and see what they would suggest going forward. I found the specialist surgeons opinions often shaped the next step on my mum’s journey.
I use PUBMED search engine for research articles just in case you have not found it .
Back when my mum was in active treatment the approach in the UK was to only treat visible disease and save as many chemo options for visible disease . However even that practice has shifted a bit and I notice more do a bit of post op chemo now and given her age and spread of disease I can see why they are suggestion some . How much and what is tricky though .
I would have the surgical consult as it sounds to me as though you both have unanswered questions before you can settle in the right option . It might provide some clarity.
Take care ,
Stu

[pondhockey]

Thanks Stu - We have had a few different oncologists put up a wall in front of us to prevent those conversations. Last year, we had to go around one onc, start care with MSK in order to work towards the liver resection. Our primary at the time would rather have seen us on the FOLFOX/FOLFIRI for another year before discussing possible, curative resection. Sometimes it is so infuriating that we cannot advocate for our own care in the way that makes most sense based upon recent literature and we have to go through these conventional oncologist walls.

Did you find that you had to advocate strongly to get the referrals to speak with the specialist surgeons?

Curious how others have found oncologists who are willing to try supplemental approaches? It seems like we hear "no" all the time. Is trial and error the only path here?

[stu]

Hi ,
My mum was a brilliant responder to chemo which did actually created a barrier . Her oncologist wanted to remain with a treatment that worked . I understand that clinically but like you we had our eye on spreading that out over the long term and particularly here in the U.K. at the time there was less chemos to work with . So our approach was reduce the tumour burden first with chemo and reduce it further with surgery where possible . Her oncologist at the time stated she could “ bleed out on the table “ our reply was it was still a conversation we would like to have with the surgeon. At that meeting we asked if it was a “ reasonable approach” he went through the clinical / surgical risks fully but also advised us that with the liver there were windows of opportunity that can pass with the liver in terms of the amount of chemo used . Mum selected to go with that opportunity.
Her current oncologist is wonderfully balanced and patient centred . Age is now coming into play but when she had a lung met which was slow growing her oncologist decided surgery was her best option and happy referred her . We thought “ what a difference “ then when we consulted with that surgeon the junior Dr thought she was operable but the consultant thought she should just sign up for a clinical trial where they observed it growing. So out came the negotiating skills again and I highlighted that she was currently in good health but two years could change that status . The Junior Dr was allowed to make the decision and was totally on board so that issue was resolved.
It is much easier dealing with a Dr what is open minded and makes sound clinical judgements. I would find it hard not to take her judgement seriously now as I have so much trust in it . Her previous oncologist was renowned here and really knew his stuff but had much more ridged clinical judgements which to be honest my mum would not be here now if she followed ! And that is the very difficult ground of navigating a stage 4 diagnosis.
You sound very reasonable and well informed . At no point did we dismiss the oncologist position or judgement but wanted to balance that out with another equally qualified specialist performing well in their own field to see their judgements. That to me is reasonable when it comes to your health . It’s not as though we were saying we were more informed than them , just that we needed more information to get on board one way or another .
Take care ,
Stu

[FightCRC]

Where did you wife get her first surgery? Prophylactic oophorectomy is recommended by aggressive surgeons, as it's a common site of metastasis. So if it was not recommended by that surgeon, I would find another one going forward.

My wife was also treated at MSK, and can share intel if you like. Feel free to PM.

Otherwise, would absolutely start researching and consulting with HIPEC surgeons now. I know it can feel like you're tempting a self-fulfilling prophecy, but better to be prepared to GO if that becomes necessary.

Look up rp1954 here. He's a caregiver to his spouse, as well. They've had great success with metronomic Xeloda + supplements/repurposed drugs. But must be understood that every case is different, and yours is already much more complex than his. IMO, I would have done the chemo post-liver resection, and I would do it now. If the goal is cure. If you've already made the decision to prioritize quality of life vs. quantity (a totally valid, legitimate choice), then you may as well experiment. Best of luck to you both, whichever path you choose.

[pondhockey]

Where did your wife get her first surgery? Prophylactic oophorectomy is recommended by aggressive surgeons, as it's a common site of metastasis. So if it was not recommended by that surgeon, I would find another one going forward.

We've now worked with a few different surgeons.
1st - Lehigh Valley. Right hemicolectomy, caught the drop met on the omentum.
2nd - Liver resection at MSK
3rd - hysterectomy at Mass General (MGH)

Quick bit of context: We started this journey in Montana, and moved out to the Boston area due to work/life circumstances. We did the liver resection on the way out to Boston.

We are still working with the surgeons at MSK and MGH so we're no longer with the original colectomy surgeon. I have read mixed things about prophylactic oophorectomy, seems to be a controversial topic. Our oncologist actually advocated that we tried to save the right ovary during the latest surgery because it did not have a clear signature on scans. Be damned sure that we advocated everything came out with the surgeon, and she agreed and respected our wishes (so grateful to the MGH surgeon).

Otherwise, would absolutely start researching and consulting with HIPEC surgeons now. I know it can feel like you're tempting a self-fulfilling prophecy, but better to be prepared to GO if that becomes necessary.

Yes, the self-fulfilling prophecy is always the fear. We'll heed the advice and consult with the HIPEC specialist.