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Most discouraging follow up visit with surgeon today :(

angec's picture
angec
Posts: 664
Joined: Mar 2012

Hello, had the follow up visit with my mom's surgeon. She is 79 and had her right kidney removed by robot a week ago. She is stage 3 grade 4. T3N1mx. Also has a positive margin for the renal vein. The surgeon gave us the report and basically told us mom is on borrowed time and that she will subcumb to her disease. He gave no hope or anything and was very matter of fact. Is this true? Are there no drugs out there to help at all? So we have to make an appt. with an oncologist and i am going to take her to Sloan for that. She is diabetic and has heart issues. One positive lymph node but the surgeon only took two out and said it wasn't necessary to take more because if one is positive then they are all positive. I don't see how that is possible if only one out of two were positive. I am just thinking he should have done a radical on her but given her age he didn't want to. I guess he feels she lived long enough. There was no hope and only negativity. We did not tell mom yet. She is already scared as it is. What a terrible office visit. This is the same doctor that told her maybe he can cure her because the mass was only 4.3cm. Turns out it was 6.5 cm. What to do now?

VeryAnxious
Posts: 67
Joined: Sep 2010

All I can say if you are not happy see someone else. It is so hard to find a doctor that listens to you. I can relate to terrible visits. After my initial robotic surgery 1 1/2 years ago, the doctor thought it would probably be begnign. Well not only was it not, but i got positive margins. Surgeons can tend to be difficult to talk to. Try to keep positive.

angec's picture
angec
Posts: 664
Joined: Mar 2012

Thank you VeryAnxious.. mom was also told that it would probably be a cure since the mass was small. What was your outcome? I hope things are going well for you. How did you make out with the surgery? did you have it in the veins and noes as well? We are in NY. I am going to make an appt. for Sloan which i should have done in the first place but mom didn't want to travel too far. We will though for the oncologist. All the best to us all! Thank you. Angela

VeryAnxious
Posts: 67
Joined: Sep 2010

All I can say if you are not happy see someone else. It is so hard to find a doctor that listens to you. I can relate to terrible visits. After my initial robotic surgery 1 1/2 years ago, the doctor thought it would probably be begnign. Well not only was it not, but i got positive margins. Surgeons can tend to be difficult to talk to. Try to keep positive.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

The prognosis can't be wonderful for a lady of 79 with serious illness and the surgeon probably took the view, as some do, that he should be on the level with the nearest and dearest and say things he might not choose to say to the patient herself.

You may get a nicer picture from the oncologist who is almost certain to be a bit more positive and make you feel less downcast. He/she is bound to make suggestions for what is best to do now and you should get best advice at Sloan Kettering.

If the picture there isn't as cheerful as you're hoping for then maybe you should not go chasing after someone to tell you what you want to hear but rather focus on making the best of things for your Mom to enjoy life as much as possible by following the oncologist's advice if you think it sounds appropriate.

angec's picture
angec
Posts: 664
Joined: Mar 2012

Hi TW.. yes i understand. Mom has the normal diabetes and takes heart/pressure meds but nothing major or life threatening in those areas. However i see the side affects of the drugs and they alone are so scary. Kind of a darned if you do, darned if you don't scenario. I am gonna take her to Sloan. In the meantime she is on advanced homeopathy with a dr. that has treated many patients and they lived long healthy lives with no side affects. But i don't know how long it would be before someone decides to go main stream with the meds.

The surgeon spoke to me like he was showing me the holes on a golf course with no feeling. But when my mom asked him if he had kids a whole new side emerged. He remained quiet, then teary eyed and said his wife had trouble conceiving and it was too heart breaking and he can't talk about it. Alas, he does have emotion. It hit me the wrong way. But i understand your point.

One onocologist briefly said she can take chemo. We all know chemo does not really respond to this type of cancer and they don't have chemo testing at that center so i will see what Sloan advises.

Thanks Garyn you are right, there are other treatments possible. I think she has to start with a fresh scan at the moment to see where it might be if anywhere. A long road ahead. I hope everyone else is doing well.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

There are drugs available, all with a laundry list of possibly nasty side effects. An oncologist should be able to determine if mom can tolerate drug therapy and which drug might be the best fit for her.

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