Hi, my husband is in his mid 40's and has bowel cancer (removed) with 4th stage liver mets.Initially the surgeon advised that the number - approx 14 & size of the tumours meant surgery was not viable but may be possible if treatment shrunk the tumours enough. We have insisted from the outset that we wanted the treatment to be aggressive and since changing from Folfox to Folfiri combined with Cetuximab there has been up to 50% decrease in the tumour size & the tumours are all showing as calcified. We have gone back to the surgeon who is now saying his stance on not operating would be the same & that my husband should stay on chemo as it is working so well. He was also referring to the tumours as appearing dead, inactive &/or necrotic. As his initial diagnosis was so poor we felt that shooting for the moon was the best hope and aimed at tumour shrinkage and surgery. We are now a bit confused as the surgeon indicated initially that sufficient shrinkage would put the option of surgery back out there. Does inactive/dead/necrotic mean the cancer is in remission?? He is saying if he operated he would not do a resection but rather just remove any tumour that showed as active. We are seriously considering getting a second opinion as we think the surgeons attitude is more cautious than aggressive. His opinion that we go with indefinite weekly chemo sessions has knocked some of the fight out of my husband. Anybody out there been there, done this, sought secondary advice. We have found that you really need to be pro-active in sourcing treatment and insisting on treatment paths, but at this point are we being unrealistic.Given his treatment results which have seen great shrinkage and a cea drop from in the 600's to under 20 we really thought he was on track. Opinions, suggestions, where do we go from here?????
Hey just as an addition, I have jumped on good old google and found several surgeons who specialise with liver resections, checked out their credentials and eventually sent of an email to one that seemed the most well known in the field.Got a reply very promptly and an offer to see my husband and review his surgery options. I think the ongoing treatment was to important to accept one persons opinion, so we will see where we get to.
Would love to hear how you go. I have been advised pretty much the same - mets in liver too extensive to operate and will not operate on colon unless liver can be resected. Sought a second opinion which was the same - apparently they need to sections connected without tumours to be able to operate and I do not fall in to that category although my tumours have shown good shrinkage. CEA is down to 6.6 from 250 after 10 Folfox/5FU - Avastin sessions. I moved from a conservative specialist to a more aggressive one. They also said no radiation as liver is very sensitive and using the chemoemobilization or treatment direct to liver tumours is a last line option once chemo works. My specialist said that the must do no harm and any other treatment at this stage would cause more harm than good so whilst chemo is working to continue with it.
Keeping my fingers crossed you get better news.
My hubby actually has had the bowel resection and has a bag - there are at least 2 others we regularly see with the same situation who have had their bowel resection regardless of the liver mets so I'm not sure how your situation differs. My husband had minimal changes with the folfox combo but had really good results with folfiri/cetuximab. The Sirt radiation is apparently only offered if a surgeon says that there is no possibility of resection. We have had to send further scan results off to the second surgeon so we are still in a holding pattern at the moment. We have the option of the radiation if the surgery is squashed by this second surgeon. Their have been some limited instances where the sirt radiation has then achieved even more shrinkage and allowed a resection but its probably along the same lines as winning lotto. Will update as soon as we get an answer!
Thanks for your response. I have been told that my colon is resectable however is it not causing a blockage or having an impact on my bodily functions so they will leave it and only operate if it causes an issue - perhaps that is why your husband and the others have had operations as it was causing a blockage or other issue? My specialists told me they will only offer Sirt/chemoemobilzation if all chemo options have been tried and fail as the aim is to prolong life for as long as possible and using the last line options can in some instances cause more harm than good and after using the treatments there is nowhere left to go in terms of radiation. Having researched on the web though it seems that no two surgeons say the same thing and that all over the world different treatments are conducted. I am not sure if you have heard about the US research of grapeseed extract which has been shown to be effective at low doess in last line treatment of colon cancer with liver mets. The research had not been conducted in conjunction with chemotherapy but the Adelide University recently released research whereby the used grapeseed alongside chemotherapy in petri dishes and showed that it did not affect chemotherapy and in fact reduced side effects. They are now looking to go to human trials. Grapeseed etract can be bought in heath shops and I was taking it until chemo started when my oncologist asked me to stop taking it as they did not know how it would interact with the chemo. I am tempted once I move to maintenance chemo in a month or so to start taking it again and see what happens! Hope you have good news from your second opinion. Carole
Hi Cancer Sucks!
I'm like Carole and have bowel cancer with mets in the liver which can't be resected. I am currently on Folfiri with Cetuximab. I was wondering if your husband had the acne rash as a side effect? I have had it really bad to the point where I don't want to go out anywhere out of embarrassment. I'm glad to hear your husbands mets shrunk. Mine have not, but haven't grown either. Would love to hear from you re any info you can give.
My story is so like yours. I have had a 2nd opinion about resection and have been told by both that resection is not an option at this stage. I am on Folfiri and cetuximab at the moment and while my cancer hasn't shrunk it hasn't grown either. Are you on avastin and folfox because your cancer is "mutant" rather than "wild" type (lm wild)??
It's great news that your tumours are shrinking!! Your CEA count is great too and encouraging!! Please keep me posted on your progress.
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