Frustrating!

I am new to all of this.

  Two and a half weeks ago, my whole life changed in a hurry. My husband of 22 years was dignosed with RCC that is also in his pelvis and femur as well as a quarter sized lump on the back of his neck. He had a bowel resection 18 years ago that left him with chronic diarhea, a spine injury at work earlier this summer lead to the diagnosis.

  Kidney (football size) was surgically removed on 8/30 and radiation on the hip tumor began yesterday as he is having a rough time walking due to the pain.

  The doctors are either giving me vague answers or conflicting information, and it is making me crazy! The Renal surgeon mentioned liver involvement, although the CT scan a week earlier showed none. In my relief at the news that the surgery had gone well, I did not question the liver comment, thinking that this would come up again later. It never did.

 Our GP, who seems to be very competent and caring, said something about aortic involvement. Again, my mind was on other things, I cannot get anyone to tell me now where this came from.

 The radiation oncologist is focused on the current pelvic/hip issue and bows to the head oncologist.

 We met with the lead oncologist once, he is waiting for final pathology reports before telling us much of anything, hopefully we will have them on Monday when we go in for our appt. We have also been told, by the radiation oncologist, that due to the nephrectomy last week it will be a month or so before treatment (other than targeted radiation) will begin.

 I guess I understand that the doctors don't want to give me partial or false information, but I am frustrated with the non answers that I get to burning questions like, "What stage is his cancer?" (I think I know, but I want it confirmed). I want to know how much time we are likely to have together! Should our daughter be moving her wedding date up? Should I plan Christmas? Will we see our 23rd anniversary together?

  We are people who like to know what things may lie ahead so that we can educate ourselves and be ready for what comes. How long does it take to get a doctor to give us some answers? I am saturated with information on different drugs, so that when we go in on Monday and he mentions names I will know what questions to ask. This is just not how I thought things would be in my life...

 I am interested in knowing how the rest of you have handled this?

Sorry that you are going through the frustration on top of dealing with his diagnosis. My first piece of advice is to seek out your nearest major cancer treatment center. For example, I live 3 hours from Boston and travel to Dana Farber Cancer Institute. At a center like this you will find doctors that specialize in this type of cancer. RCC requires special traetment by someone with experience.

Second ... stop looking for a time line. When I was first diagnosed with Stage IV RCC in Feb. 07, that was what I wanted to know too. Somewhere I read that no doctor can really tell you that because we are all different, modern medicines and treatments are advancing fast and none of us is born with an expiration date stamped on us!

 I was also treated with high dose radiation to my right pelvic bone and other areas. The radiation oncologist said they could really hammer on the bone. knock on wood, but it seems to have worked. Had radiation in March and then started Sutent. Tomorrow is my last day of cycle 4. In June I was still hobbling around with a lot of hip pain. Next weekend I'm walking in a 5 mile fund raiser for cancer research. I haven't gone that far in training, but almost daild get in 2-3 miles now.

I know it's scary and you want answers, but they may not be available. Try to find peace in the knowledge that a couple of years ago it was a much grimmer prognosis. My doctor said his goal is to keep me stable and treat it like a chronic disease. Its called living with cancer. He said that we all need to hang in there and that current research might bring major changes in the next few years.

For the record ...I'm a male, early 50s with 3 kids and married 30 years. I have bi-lateral tumors so no surgery, mets to the lung, spine, pelvic and lymph nodes. My fifth rib was consumed by the cancer before the found it. I was being treated for bursitis of the hip for several months before my wife insisted I switch to another doctor who found this on my first visit. I believe a positive attitude is critical.

Let me know if you have more questions.

Thank you Shaun for your calming words. I am on a roller coaster of emotions right now, trying to be there for my husband and still take care of me. He is eerily complacent through all of his treatment so far, perfectly content to sit back and let things just happen. This is not the way that he has ever handled a challenge before, and it does worry me. I guess that I compensate by trying to be wonder woman, taking care of the farm, the lawn, the garbage detail and now all of the health care stuff. I am on the computer every spare minute, researching and memorizing so that when the oncologist says that we are going to try xxx, I will be prepared with appropriate questions.

  This board has been a wealth of information for me, and I am sure that you will see me here often!

  Thanks again!

Jean,

I'm so sorry that you're having to go through this. It is very frustrating, but I  totally agree with Shaun.  I couldn't have said it better myself.

The only thing I would add is to spend as much time as you can enjoying your family and friends. Go ahead with your Christmas plans or anything else your husband is able to do and enjoys. The best medicine is being with those you love, lots of laughter and a positive attitude.

Donna  

I am so sorry about all that you both have been through I know how frustrating it is when you have multiple doctors involved and they all have something different planned.  I would speak to the lead oncologist and ask him to please get the results as soon as possible and that you want to have a sit down appt and discuss all of your concerns.  My mother's oncologist orders constant MRI's and gets the results next day so there is no reason for them to call you next week when they can get them soon.  The one thing I have learned through my mothers whole ordeal is that you need to educate yourself about this disease and stay on top of these doctors, that is one mistake I wish I hadn't made is to be shy and feel that I don't want to step on anyone's toes.   Make plans, go out, see things and enjoy every day you have together.  Don't stop living because of this disease. 

Dear Jean,

I agree with how frustrating all of this can be.  My husband was first diagnosed one year ago - and we have had quite a year.  It sounds like your husband has a good attitude.  Although it is difficult - you need to be knowledgeable about RCC, but not overly worrisome.  Every day I learn something new about this disease.  Your doctors should all take the time to be sure your questions are answered (when they have answers).  Prayers help big time.  Shaun - I learned something reading your response to Jean.  My husband just had a hip MRI because they think he has bursitis - yikes, could that be mets to the hip?  How did your new doctor discover that on your first visit, and kudos to your wife for pushing for a new doctor.  Jean - you and your husband will be on my prayer list.  Everyone on the board is included daily. 

Dolly

Hi Dolly,

Sorry for the delay ... several months after the first symptom, which was the hip pain, I started having upper chest pain after eating. They thought it might be gall bladder, so I went for an ultrasound. Got called back to the office later that afternoon and all they knew was that I had lots of masses. The doc thought it was cancer, but not sure of the primary source. Then I cot on the MRI, CT, PET, Bone Scan, Biopsy merry go-round. Knew it was RCC in about a week. I've been learning ever since.

Dear Shaun,

Thanks for info.   When we went to doctor last week with hip MRI results - he declared it is bursitis, which scares me after your diagnosis.  We have to keep the faith and go one day at a time.  Best to you and you are in my prayers

Dolly