Re: Waiting for surgery/ new to the group..

Hi everyone,

I am very new to the caregivers group, my fiance has stage 4 mrcc, which has metastisized to his lungs, he was diagnoised the first of Aug.this year, we are still waiting on a nephrectomy, he had a date Sept 19th for surgery and it ws cancelled at the last minute, the surgeon wanted more cardiac studies and at the last minute decided to cancell it... We are still waiting, 2 surgery dates have been picked the 17th or 24th of next month and i finally got him on a cancellation list to try and get him in sooner, so now it's very close to 3 months now...He has had 2 catscans now ,the last one was on the 14th of Sept...His tumor has grown fron a 7.2cm to a 7.7cm in a 5 week time frame, and his lungs are worse...He is due to have another catscan on Monday, and i am very worried at this point...He has very few symtoms alot of fatigue, to look at him you'd never guess that he is that sick..I have read up since day one all about this cancer, and treatment, i know that there are alot of people that don't have symtoms till late....The oncologist wants to put him on sutent after the surgery which i can't wait for this to happen, i am doing everything that i can to get his surgery sooner and i feel like we are in a rock and a hard place as there has been one thing after another that just seems to be preventing him from surgery...Tim now wants to see the surgeron before the surgery and of coarse i can't get him in till Dec 3rd, but the office told me to call every Monday to check for cancellations, it juist seems like we can't seem to get off of a cancellation list..I feel like i should of change doctors a month ago and i am going thru this terrible quilt right now...I was so busy with trying to connect with the all the doctors, dealing with all the insurance issues and trying to take care of the both of us with a very limited day as it is, that it never enter my mind that i should of been looking elsewhere for another surgeon...I guess i just wanted to connect with some caregivers out there, i think that i really needs some support at this point, i am not sleeping well and i know i have to start taking  better care of myself, i am Tim's primary caregiver and eventually i feel that things will get worse...Thanks for listening...

Rebba

Hi Rebba,

This will be shorter than my usual responses because my husband, Dave, is scheduled for surgery on Monday and we are frantically running around trying to get all the last-minute things done so he can be off work for a month. 

My first thought is to tell you that you should not wait for the surgery to get Tim started on some kind of medication to treat this.  Lots of people are deemed inoperable or must wait for the surgery, but they can be started on one of the kidney cancer drugs prior to surgery.  If you think Tim might have to wait much longer for his surgery, I think you should definitely ask his doctor about this.  I don't think "doing nothing" about the cancer while waiting for surgery is the best approach, especially since the tumors are growing as evidenced by the CT scan results. 

My husband, Dave, was diagnosed stage IV on June 27, 2008, 4 months ago.  He has a large tumor in the left kidney (10.5 X 10 cm), his left adrenal gland (size of a baseball), and more than 30 different metastases to both lungs as well as the lymph nodes in the chest.  He was deemed inoperable due to the widespread metastases and his overall poor physical condition (he was weak and had lost a lot of weight).  Our oncologist decided to start him on Torisel to see if there would be a response to it and that if Dave could get stronger so the surgery could be done.  Dave's first CT scan after 6 weeks of Torisel showed that all the tumors had shrunk at least 20-to30%.  Dave's condition improved a great deal, and he is stronger and feels so much better now.  He is doing SO much better that the doctors have finally decided to remove his kidney (which will be done on Monday).  This is a huge victory for us.

I honestly think "something" should be done for Tim right away, not just let the cancer keep spreading while you wait for a surgical date.  That's just my own opinion, and I'm not a doctor, so it's just something to think about.  This stuff is really scary.  Your whole life gets turned upside down when you find out about this.  You will find a lot of support here on this forum.  I wish you and Tim the very best and will keep you in my prayers.

Nancy

On 10/31/2008 Twiddles wrote:

Hi Rebba,

This will be shorter than my usual responses because my husband, Dave, is scheduled for surgery on Monday and we are frantically running around trying to get all the last-minute things done so he can be off work for a month. 

My first thought is to tell you that you should not wait for the surgery to get Tim started on some kind of medication to treat this.  Lots of people are deemed inoperable or must wait for the surgery, but they can be started on one of the kidney cancer drugs prior to surgery.  If you think Tim might have to wait much longer for his surgery, I think you should definitely ask his doctor about this.  I don't think "doing nothing" about the cancer while waiting for surgery is the best approach, especially since the tumors are growing as evidenced by the CT scan results. 

My husband, Dave, was diagnosed stage IV on June 27, 2008, 4 months ago.  He has a large tumor in the left kidney (10.5 X 10 cm), his left adrenal gland (size of a baseball), and more than 30 different metastases to both lungs as well as the lymph nodes in the chest.  He was deemed inoperable due to the widespread metastases and his overall poor physical condition (he was weak and had lost a lot of weight).  Our oncologist decided to start him on Torisel to see if there would be a response to it and that if Dave could get stronger so the surgery could be done.  Dave's first CT scan after 6 weeks of Torisel showed that all the tumors had shrunk at least 20-to30%.  Dave's condition improved a great deal, and he is stronger and feels so much better now.  He is doing SO much better that the doctors have finally decided to remove his kidney (which will be done on Monday).  This is a huge victory for us.

I honestly think "something" should be done for Tim right away, not just let the cancer keep spreading while you wait for a surgical date.  That's just my own opinion, and I'm not a doctor, so it's just something to think about.  This stuff is really scary.  Your whole life gets turned upside down when you find out about this.  You will find a lot of support here on this forum.  I wish you and Tim the very best and will keep you in my prayers.

Nancy

Hello Nancy,

thank you for your response, this has been on my mind for the past 4 days now, I wish that i took the time to do this a month ago,at that time i was sure that we wouldn't be waiting this long..Tim doesn't want to go any other hospital than where we are going now, Monday i will call and really work on getting another surgeon there, the whole thing is all the urological surgeons are all in one dept,. but i am sure that i can get another surgeon that would be willing to see us, or better yet i have the name of the head of the dept and i could always ask for some help there... Explaining our problem and with alot of prayers i am sure will be willing to do something really quick..I will do whatever i can to get Tim that surgery sooner...I know if i talk to someone else this can be taken care of, there are a bunch of different surgeons there, there has to be something that can be done, i just haven't look in the right places or talk to the right people yet...I'll call whoever i need to call to get what has to be done... Thank you so much Nancy, i needed someone to just tell what the right thing was to do, and someone else looking at this from a different prespective made me see what i didn't see till now, Nancy you are a Godsend for helping me figure this out, i feel a little quilty that i didn't figure this out for myself and sooner, the important thing now is i know what i have to do...I am so sorry that your husband got that sick, and i am very happy to hear that he is having his nephrectomy Monday and especially that the torisel worked so well for him,, you two have been thru so much, you are so right, this does turn your life upside down to the point that you can't even think straight at times, i feel that we have been living with mrcc alot longer than 3 months, but 3 months is to long to wait for surgery, i will not wait any longer than we have to, this needs to be done ASAP and i will not take "no, there isn't anything that i can do" for an answer anymore...I will get past this secratary and get to someone that can help me and i will do this on Monday...I am going to go to the hospital site and find out other doctors names, so i will know who i need to talk to, when i call Monday morning, i sometimes hate weekends , when you can't get in touch with a doctor but it will give me the time to compile all the information and get a good plan of action that i will need for Monday...Thank you so much Nancy for taking the time out of your busy day to offer your help and opinions  and  sharing your story with me, i am praying for the two of you that your Dave has a very sucsessful surgery on Monday, i hope the two of you have a very special weekend togeather and my warmest thoughts, wishes and prayer are with the both of you....

Rebba 

Hi, Rebba,

We went through a bit of the same thing when Dave was first diagnosed.  I was shocked to learn he had kidney cancer, but to find that it was already stage IV was so scary.  We had to wait several days to see the oncologist, then several more days for the biopsy to be done and get the results, then we saw the oncologist again and learned that Dave was inoperable.  But, thank God, we have an aggressive oncologist who wanted to put Dave on something to try to shrink the tumors, and if Dave responded well to treatment THEN he could have the kidney removed.  So that was the plan. The doctor didn't want to put Dave through a horrible surgery if there would be no benefit from it.  I think he thought DAve was "so far gone" that there was nothing much they could do for him.  But he decided to try him on Torisel as a long shot to see if it would help him and get him to the point where his kidney could be removed.  So...Dave's first "chemo" (Torisel) treatment was scheduled for a week later.  I had a hissy fit right there in the doctor's office!  I told the scheduling lady absolutely NO, Dave could NOT wait another week for treatment.  I cried.  I told her he is already stage IV and we don't have a single day to spare!  And the oncologist came out and heard this and told her to schedule the chemo sooner, and they "worked him in" the next day!! 

Does Tim have an oncologist?  It seems like maybe he is just still seeing his primary doctor, or am I wrong?  I can't imagine any oncologist making someone with stage IV cancer wait three months for surgery!  Lots of people on this forum are started on medication BEFORE the surgery is done.  It is so important to get Tim on one of these new targeted therapies (Sutent, Torisel, Nexavar, etc) ASAP to try to get this stuff to stop spreading.  The surgery is important, but it is also important to get something done NOW. If the surgery can't be done right away, then look into getting Tim started on one of the kidney cancer drugs that are available.   I don't want to panic you at all, but to do nothing is not right in my opinion because it sounds like Tim is fairly healthy, and he should be able to get some help.  If you don't have a good oncologist, then I think that is where you should start.  A primary or general doctor is not a cancer specialist.  Tim needs a cancer specialist. 

I sure do wish the best for you, and believe me, I know just how you are feeling right now.  Hang in there, and know that there are lots of people out here who are going through the same thing as you, and we are like a family here.  You and Tim are in my prayers,

Nancy

On 11/1/2008 Gary-California wrote:

Rebba:

I'm really shocked to hear how long it's taking for your boyfriend to have his surgery.  I'm just curious to know if you're in the United States?  I have stage IV RCC and they took my left kidney and the 11cm tumor out the same week it was discovered.  I have lung and liver mets, but after 2 cycles of 50mg Sutent, 2 of the 3 liver tumors were gone and the third was barely visible.  All the lung tumors showed significant shrinkage.  I start my 4th cycle of Sutent Tuesday and then when that's done, they will do more CT scans to check the tumors again.   Everyone reacts different, but so far we're very happy with the results of Sutent.  I have a few of the side effects, such as the foot/hand syndrome, the inside of my nose and mouth feel like they've been burned and my blood pressure is high, but being treated.  When I go on the 2 week break, the side effects seem to disappear in 3 or 4 days.  Good luck to both of you.

Gary

I was diagnosed in Feb.  My oncologist wanted me to have chemo

and radiation first to shrink the tumor.  Surgery was done in July

and was very successfull.  Chemo and radiatiation at the same time

was not easy on me, but I feel it was worth it.

June

Hi Gary,

yes we live in the US, can you beleive that living in the US and something like this can happens ?? I have gone over all the medical reports from doctors, labs and and scans which i always get copies of to stay on top of this...Last Friday i got some reports that i had been expecting and i saw that my fiance tumor had grown 3 cm's and that scan was on Sept 16th, so we are in some trouble here, he is having another scan tomorrow and the oncologist we see here ordered that for us... I have written all of it down and the doctors office is getting a call from me, i am very angry at this point, ther doctor will call me back tomorrow on my angry insistance...After what i have learned and all the repeated phone calls to his office he will now listen to what i have to say...I WIll get Tim's his surgery very soon and i am insisting that they do it on the 10th or even sooner than that..Something had happened that Tim's name was on a Oct 23rd surgery date in the hospital computer and the doctor has alot of explaining to do right now..Early yesterday morning i went to the hospital site i made an app with the chairman of the dept that this surgeon works under and they always ask the reason for it, i wrote everything in there that has happened to us and dates and how they have  put us off this long,... I am very determined to get this all straightened out and get what Tim needs and thats the surgery and he will also be going on sutent himself as soon as they get the cell type,  mostly it's clear cell, but they have to be sure....I want to thank you for your kindness and writing to me,  in this tough road that we are on... Tomorrow will be a better day, i think after what i have to say to the surgeon then he will  work Tim in really fast...There is no excuse for this and i will not accept anything other than what Tim and i want  and not wait any longer that we have  to...I am very pleased to hear how you are doing, your story gives me alot of hope that sutent will help Timto shrink his lung tumors, hope that you keep doing as well as you have, we all have to have the willingness to fight whatever barriers that are in our way to stay positive...

Warmest regard to you and your family,

Rebba

Rebba - one of the things I've learnt on this vast emotional roller coaste and the steepest learning curve I've ever been on (from knowing ZILCH about RCC to 'a lot' in five months)(husband DX stage IV in May), is that each doc only tends to think in terms of their own speciality. eg, a surgeon will always think 'let's do surgery', an onc will always think 'lets put him on drugs', a radiologist will think 'lets try radiation'. I know it sounds silly to put it like that, but I do think it's true! So I think your husband's surgeon is 'only thinking surgery'.

BUT, I can't believe your oncologist isn't discussing immediate drug therapy, as Nancy/Twiddles says, UNLESS he is unaware of the shambles of the appointments system operating in the surgery department!

I do think, if you cannot get a VERY prompt date for surgery, over the next couple of weeks or so, that some sort of drug therapy should be started without delay. The onc/surgeon may, with good reason, say your fiance should not have surgery while he's on Sutent etc, as that will lead to complications during and after the op, BUT, as everyone here is saying, there is just no point hanging around watching tumours grow!

I hope you have success banging heads together in the surgery department, and get a promt, reliable date for surgery.

All the very best to you, Julie