odd pain

Hello,

I am a new poster, so this will probably run a bit long, in order to give some background. At the beginning of April, I started noticing blood and some clots in my urine, went to the primary, they found no infection, was sent to a urologist who did the ultrasound, cytoscopy (I think that is what it was called) and finally a ct scan. The ct scan found a 4 cm tumor which was probable renal cell carcinoma. At the end of April I started to pass lots of clots, had horrible pain and vomiting and ended up the the hospital for four days getting fluid and blood transfusions. My urologist, who does not specialize in cancer, tried to get me into the local cancer hospital for surgery, but, unfortunately, the cancer hospital was not in my insurance network and after a week of appealing to them to make an exception, I was denied and given the name of another doctor to see. That was fine, although it has taken several weeks to get an appt with the doctor and get my nephrectomy scheduled, but it is finally set for 6/22. In the meantime, I have developed pain in areas like my left side (the tumor is on the right) and my right breast. My left side actually hurts worse than the right one now. I told the doctor, who didn't think these pains were related to the tumor, so he ordered a bone scan which came back normal. I wonder if this rings a bell with anyone? I know the tumor is not that big, but the ct scan said there was a deformity in the renal collecting system and the cystoscopy showed that the muscle in my bladder had thickened because of it pushing against the tumor. I also have some peripheral neuropathy from way back, so my nerves are more sensitive to stimulation that normal. I have taken meds for this for years. I guess my question is whether I should be be more proactive about finding the source of the pain or not. I have also developed night sweats and find that when I am lying down, the pain goes away. Since I still have to work to preserve my sick time for when I am recuperating, I am usually pretty uncomfortable by the time work is over, then I go home and lie down, and I feel much better. Has anyone had a similar experiece with these types of pain? Thank you for reading this massive post!

 

 

 

 

 

You need to go to an Oncologist, preferably a Urologic Oncologist, who specializes in Kidney Cancer and he/she can order a PET Fusion Scan which will reveal any tumors that may/may not be in other areas. The bone scan only shows if tumors have spread to the bones. The urologist couldn't order the PET Scan but the Oncologist was able to.

In the 4 weeks it took to schedule my husband's surgery to remove his right kidney, the primary tumor grew from a 6 inch mass to a 10 pound tumor. He was so anemic he had to be given 11 units of blood (apparently to feed the growing needs of this tumor), 13 units of iron and 6 units of Plasma. This thing was literally sucking the life out of him.

It is critical to get the primary tumor out ASAP to avoid spreading of tumors to other body parts...and it spreads fast! Do not delay in getting qualified help.

Thanks for your reply. When I was in the hospital the first time, an oncologist came to see me, but the urologist who will be doing my surgery has not mentioned seeing an oncologist yet. He did say once the tumor is gone, I should not need anything else, but I will certainly press him about the pet scan. It seems like that should be standard procedure in any cancer cases, but I guess nothing can be taken for granted. I hope your husband is doing ok.

We have been tremendously blessed to have a great team of doctors helping us through this. My husband had none of the typical symptoms of RCC. He had gotten the flu in mid-January that lasted for 2 weeks which resulted in a little cough (nothing major) that wouldn't go away.

From September of 2008 to December, our Primary Doctor had been monitoring a couple of things (an elevated blood sugar count and a worsening anemia discovered at his annual checkup, things my husband had never had). Anyway, he told him to shed some weight and increase his exercise. We were scheduled for a follow-up on April 6. When my hubby got sick in January the weight began falling off of him and it was clear he was severely anemic.

We were scheduled for a couple of vacations and our children insisted we go to the doctor before we left so we did. He ordered a chest x-ray because of the lingering cough and obvious weight loss (about 20 years ago, my husband had unknowingly been exposed to asbestos in his work environment and that went on for several years).

The Chest X-ray revealed 2 small tumors in the upper portion of his left lung. The PCP ordered a CT Scan which revealed tumors in the Right Lung and also the top of the tumor on the kidney...when they saw this they went ahead and scanned down further to reveal the entire pelvic region.

Our PCP called us in and was able to get us into a Urologist immediately. He ordered the Bone Scan and scheduled us to meet with an Oncologist. The Oncologist is the one who ordered the PET Scan and and MRI. It's all about what insurance deems as necessary!

These tests are very costly and you have to have the orders from the right doctors so that your insurance will pay the largest portion of the cost.

I don't know how big the tumor on your kidney is however, from our experience, you would be wise to get an Oncologist (again, preferably an Urologic Oncologist) ASAP.  As long as that primary tumor is in your body it can, and will, spread.

If your insurance requires you to have a referral, get one, but do your research and make sure you get a Doctor in your area that has some experience with RCC.

Here's another site that I first found which help us understand the importance of getting things moving:

http://www.myhusbandskidneycancer.com/