recurrence 12 mo post chemo - scared

Monicaemilia said:

One step at a time...
Hi Traci: I agree with what Tara said about embracing the 'chronic model'. And you are doing absolutely the right thing in getting a second opinion from a respected specialist. I was dx Nov. 05 with FAP (a genetic form of colorectal cancer) that had spread to the liver. Then some nodules appeared on the lungs. I had to leave the country to get a liver resection because in Canada once your cancer has metastasiced to multiple organs surgery is not considered helpful by our doctors. Of course that is entirely debateable, and mostly by the medical community, not by me. A bone met was found prior to my lung surgery (another long debate with my surgeon). I then had surgery to remove the multiple nodules in my lungs. I am now three years out, and have had a recurrence in the liver and a couple in the retroperitoreum, but am currently working towards another surgery to remove the mets (again I may have to leave the country to do it). As long as you are feeling good and can fight, you fight and show doctors what the 'chronic model' really looks like. God bless. Monica

Canada
Hmmm Monica... maybe you should think of changing doctors. I, too, am in Canada and although my spread has not gone to the same places as yours, they found it had spread to my right adrenal gland and mets (or small spots) to my lungs. I'm not sure whether to call them mets or spots... 2 are definitely mets because they lit up the PET scan, the other 5 are too small to light up the PET, but are considered suspicious and that it won't be any surprise if they grow into the size where they will light up the PET.

Well, first was the shock/terror that it had spread and yes, I got the talk (which I'm sure our neighbours to the south get as well) that once the cancer has "seeded" or is found in other areas outside the primary colon location, then it is considered "Advanced Colon Cancer" and there comes a time when it is not beneficial to do surgeries. That was when I was given the dandelion analogy where, if you throw a bucket of dandelion seeds in a field and a couple of dandelions pop up, you can remove them and all looks fine. But chances are a good many more of those dandelion seeds are going to sprout up and you aren't going to be able to run around pulling them out, expecting them not to continue popping up all over, eventually taking over the field. So, there comes a time when you have to stop pulling them up... especially in the lungs because there are only so many surgeries you can do to the lungs before you would end up with no lungs.

Ok... so having had that talk (and you bet I was absolutely terrified.. to this day I still think I went into physical shock and left my body)... my oncologist kept saying, "Cheryl come back... we have to talk. We still have plans, but you have to come back and listen to me."

That's when she said that although the cancer had spread, she took my case to "Case Conference" amoungst surgeons, oncologists and various specialists and the recommendation was (if she thought I was physically strong enough) to remove the right adrenal gland (surgically) and then remove the 2 lung mets (surgically). She felt I was strong enough so the decision was up to me. Well, you all know what my answer was!!

I had the right adrenal gland removed last June... and we were preparing for the next step which was the lung surgery when she called me in to discuss another plan... and that is the RFA procedure for my lung mets. There is only one interventional radiologist that does this procedure in BC so she suggested that she refer me to him and it will be up to him to decide if I'm a candidate. Well, the appt. with him seemed discouraging when he went through the song and dance about the fact I have these spots in my lungs and chances are this is just the beginning, how he has to turn away 50% of the patients who are referred to him because he will only do this costly procedure if there's a chance for a cure or, if not a cure, then that it will prolong a good quality of life. So I was trying to prepare myself for him to say "You are in the 50% who I have to turn away because you have more than one or two mets"... but he said he was willing to do the two mets and that we'd keep an eye on the other spots to see what they do.

I'm getting that procedure done on Tuesday and I have to admit, I am very excited about it. It is a non-invasive procedure and will take a couple of hours to let the "conscious sedation" meds leave the body and then I will be back to my normal self and activities. I plan to go home the next day (31st), get into my new party frock and go celebrate New Year's Eve with my friends. THIS procedure replaces the original plan of having a lobe from my right lung removed and facing a 6 week recovery period.

Anywho... just wanted to clarify that it's not ALL doctors in Canada that subscribe to the "if it has metastacised to multiple organs, then surgery is not considered beneficial". For sure, it all depends on just where, how much, age, and all sorts of medical factors... but it's not a blanket statement that once it's metastacised that no doctor will do ongoing procedures.

I'm so sorry to hear you have to leave the country to get your procedures done!! Not only is that stressful having to leave the country... there's the incredible expense of that too!!!

Huggggggs,

Cheryl