Joan M
06-23-2008, 06:00 PM
Well one appointment down and one to go.
Today I met with the onc at Sloan-Kettering who said that he's definitely not going to recommend surgery to the surgeon who I'll be meeting with there again on Wednesday.
I kind of figured this would be his response. When I met with him last year, he said that I could take a wait-and-see approach with the first nodule which I ended up having removed. But I really didn't want to wait around for for a 9mm nodule which on a CT scan didn't look very patient-friendly and then which lit up on a PET/CT.
Today he made a few recommendations: Xeloda alone, Xeloda + Tykerb, Herceptin (despite progression) + Xeloda, Stop Herceptin and take only Tykerb, and Tykerb + Herceptin.
He also recommended a few trials at Sloan: MCC-DM1, HSP90 (heat shock protein 90, tanespimycin (17, AAG)), Ertumaxomab for patients progressing after Trastuzumab treatment.
Trouble is my nodule is too small for any trial where measurable disease is a criterion, because it's less than 1 cm and I think that would disqualify me.
I've thought about radiofrequency ablation and stereotatic body radiotherapy but was really leaning toward surgery again, with bigger margins this time (even though my margins last time were clean). I was really not considering chemotherapy.
Problem is when I met with the surgeon two weeks ago, she said that if the local recurrence in the lung turns out to look like a bc met after she has all the slides compared in the lab at Sloan, she's not likely to do surgey.
I expained to the ocologist today that I understand why he's recommending systemic therapy, but that it's also a quality of life issue, meaning that besides the obvious implications of having advanced cancer, the one thing that will keep me awake at night and give me a nervous breakdown is not being able to work because I feel ill from chemo and therefore worrying about losing my medical insurance and not being able to pay my bills -- and all this over a nodule that's the size of half the nail on my pinky. And I don't have any other nodules. And the nodule that's now in my lung has been deemed a local recurrence and not really a new nodule. Worry, worry, worry. I'm worrying already about not being able to work.
I'd like to avoid chemo for as long as possible. When I have more nodules in my lung and/or in other places I'll take chemo.
The onc said that I could take a dose of Xeloda up to the point where it wouldn't affect my hands and feet. I didn't respond to this but couldn't help wondering whether that was like taking AC up to the point where it doesn't make you vomit. Or put differently, at what point would I then not be taking enough for the drug to be effective.
My delimma is that if the surgeon refuses to do the surgery I'll end up having to strike out on my own to another surgeon and that bothers me since Sloan-Kettering is a very respected cancer facility.
May be it's like kicking sand in the life guard's face. I don't know, but that's what it feels like.
I thought that on Wednesday I would just say to the surgeon that I decided on surgery and when does she want to get started. Or just tell her that I've thought about my options and that I'd prefer to do surgery.
Of course I'd have to find out from her how she would approach it.
Today I met with the onc at Sloan-Kettering who said that he's definitely not going to recommend surgery to the surgeon who I'll be meeting with there again on Wednesday.
I kind of figured this would be his response. When I met with him last year, he said that I could take a wait-and-see approach with the first nodule which I ended up having removed. But I really didn't want to wait around for for a 9mm nodule which on a CT scan didn't look very patient-friendly and then which lit up on a PET/CT.
Today he made a few recommendations: Xeloda alone, Xeloda + Tykerb, Herceptin (despite progression) + Xeloda, Stop Herceptin and take only Tykerb, and Tykerb + Herceptin.
He also recommended a few trials at Sloan: MCC-DM1, HSP90 (heat shock protein 90, tanespimycin (17, AAG)), Ertumaxomab for patients progressing after Trastuzumab treatment.
Trouble is my nodule is too small for any trial where measurable disease is a criterion, because it's less than 1 cm and I think that would disqualify me.
I've thought about radiofrequency ablation and stereotatic body radiotherapy but was really leaning toward surgery again, with bigger margins this time (even though my margins last time were clean). I was really not considering chemotherapy.
Problem is when I met with the surgeon two weeks ago, she said that if the local recurrence in the lung turns out to look like a bc met after she has all the slides compared in the lab at Sloan, she's not likely to do surgey.
I expained to the ocologist today that I understand why he's recommending systemic therapy, but that it's also a quality of life issue, meaning that besides the obvious implications of having advanced cancer, the one thing that will keep me awake at night and give me a nervous breakdown is not being able to work because I feel ill from chemo and therefore worrying about losing my medical insurance and not being able to pay my bills -- and all this over a nodule that's the size of half the nail on my pinky. And I don't have any other nodules. And the nodule that's now in my lung has been deemed a local recurrence and not really a new nodule. Worry, worry, worry. I'm worrying already about not being able to work.
I'd like to avoid chemo for as long as possible. When I have more nodules in my lung and/or in other places I'll take chemo.
The onc said that I could take a dose of Xeloda up to the point where it wouldn't affect my hands and feet. I didn't respond to this but couldn't help wondering whether that was like taking AC up to the point where it doesn't make you vomit. Or put differently, at what point would I then not be taking enough for the drug to be effective.
My delimma is that if the surgeon refuses to do the surgery I'll end up having to strike out on my own to another surgeon and that bothers me since Sloan-Kettering is a very respected cancer facility.
May be it's like kicking sand in the life guard's face. I don't know, but that's what it feels like.
I thought that on Wednesday I would just say to the surgeon that I decided on surgery and when does she want to get started. Or just tell her that I've thought about my options and that I'd prefer to do surgery.
Of course I'd have to find out from her how she would approach it.