Road block

[Racing for life]

I need some help. We have hit a road block with our insurance company. It seems they only pay for one PET scan a year. (has anyone else ran into this?)We had a PET scan in August to determine where all the cancer had spread to so we would know what type of chemo treatment we would follow. Now, as of yesterday, my husbands last chemo treatment was given (yeah!) and our oncologist wants to do another PET scan in December to see if we got it all. Now, if we can't have a PET scan from our insurance company (and they cost thousands of dollars) does anyone know what we can do next??? Are there places that you can get funding from when you have to pay for a costly test out of pocket? Is there a foundation that will help you change an insurance companies mind? I won't rest at ease until I see a test result that says YOUR CANCER IS GONE! Any advice would be apperciated!

[Margaret]

Hi Racing for life.

Couple of things come to mind, and please remember I am not in insurance or an expert.

If they would like to do the PET scan in December, could you wait until Jan and then it would be covered since that is the start of a new year?

Can they do a CT scan instead, is that covered?? I have heard many people say that the CT scan can be just as good if not better than the PET scan. Our doctors have gone back and forth on the issue...some have done CT scans on my husband, some have done PET and we have also had both done for a visit.

If none of these options work, I wonder if there are some places that assist with people that do not have insurance or have a limited plan?? Our cancer center has an angel fund and it holds money for people like your husband who need treatment that is not covered. Could you ask your center/hospital if they have a plan like this? Maybe LiveStrong could help you find support in your area too.

I hope these ideas help...I wish I knew all the answers but I will do some looking for you and see if I can come up with anything.

Hugs.

[TCLEFT]

RFL,
It looks like given your Husband's history (IIIb Seminoma & Melanoma?), the Onc wants both scans to work in conjunction with each other. The CT will pick up any masses present. Size of the masses are compared from Scan to Scan to determine growth or reduction, and ultimately just scarring left behind. The PET determines increased metabolic activity. Such as in the case of Cancer. A scenario might be a residual mass which is reduced but still present on CT. If the PET doesn't pick up any increased activity it can be presumed it's scarring resolving itself. Since Seminoma doesn't always show tumor markers, I think they use this method to get a more complete picture. (This right Fed?). That being said, the Oncologist's office will need to state (fight) your case for approval. A good strategy we used was "So you'd rather deny paying a ~$3000 bill now and risk paying ~$100,000 and up if there is a relapse?" That actually worked for us. Don't know if it will work, but it may be worth a try.
Muck Love,
Mark

[Fed]

Mark's assessment is right on the money. PET scans are very useful in the case of seminoma (not so for non-seminoma). If a CT catches a mass on a seminoma patient previously treated with chemo, it can only be one of two things: fibrosis (scar tissue or dead tumor) or active tumor (live stuff). The PET can distinguish between the two.

[Racing for life]

Fed- That is my thought as well with the active versus the dead of the tumor. I believe that the only way to make sure it is dead is the PET. I have a call into our Oncologist to call our insurance providers Oncologist and state our case.

If that does not work I will then start alternative routes with Livestrong and other foundations that will help with our fight.

[Scott]

I'll bet your oncologist can get it worked out with your insurance provider. Keep us posted.

[Russell's Mom]

When you talk with your insurance company, be sure to ask the person their name and then be sure to tell them that you are writing their name now on your notes that carry your name and your information. Over the years I have found that the people working in the areas that are removed from direct patient care (and some people even at the bedside) have become emotionally removed. There is something that sort of wakes them up when they think of their name near the patients name. It is as if the person becomes alive instead of asleep to the real reason they are there and working. Not to say that you will get your scan, but I believe that the conversation will be more careful and appropriate. (Have used this frequently at work!! and for Russell.) Good luck, Sharon

[Racing for life]

We got approval! I used your advice (plus I made it more personable to our case worker that over views our inurance claims) and they came back with a yes! We have a PET scan on 12/3 and meet with the oncologist on 12/6. If we have good news then we get the splint in his kidney removed and he can start back on the road to recovery!

I do have one question that I hope you all have encountered (and which would make this normal). Matt, my husband, is experiencing swelling in his legs and hands. We have been at the hospital all weekend with his grandmother, 2x suvivor of breast cancer ( I married into some great fighters!), and Matt was walking funny and said his lower legs hurt. When we were setting in the waiting room I looked at them and I could not even make out his leg bones. This man is maybe 155 on a good day so he should be all but skin and bones! Is this swelling normal? He has had neupogen shots for 4 days in a row both last week and the week before. Could it be from that? Any helpfulness on this would ease my worried mind until we can get information from our docs!

[Russell's Mom]

Great news on the approvals!!! Gives me faith in people being there for people...as it should be. It is curious to me why we fall asleep to another human being in need. Working as a nurse, I would rather have someone sort say...ah..hmmmm to me, if my attention is wandering away from them. I feel much better driving home knowing I have helped instead of hindered. Regarding the swelling. I have not heard of swelling with Neupogen. If it was me I would call the doctor right away ...even if it is an odd hour. Someone will be on call and you can get suggestions from an expert. I am not bashfull at all about calling with questions. People who love to help don't mind the calls and feel good about helping ease your mind. You deserve peace of mind if nothing else. Take care, Sharon

[Fed]

I am very glad you got the PET scan issue settled with the insurance company. This is one of the cases in which a PET/CT will actually be useful. I am hoping that nothing lights up!

As far as the swelling, I will venture a guess here (and it's only a guess; I'm not an M.D.). Do you think it could be related to fluid accumulation related to the kidney stent he received? I saw you noted that in your signature, so I thought I'd ask. Of course, this is likely a question for the urologist.

[Margaret]

We got approval! I used your advice (plus I made it more personable to our case worker that over views our inurance claims) and they came back with a yes! We have a PET scan on 12/3 and meet with the oncologist on 12/6. If we have good news then we get the splint in his kidney removed and he can start back on the road to recovery!

I do have one question that I hope you all have encountered (and which would make this normal). Matt, my husband, is experiencing swelling in his legs and hands. We have been at the hospital all weekend with his grandmother, 2x suvivor of breast cancer ( I married into some great fighters!), and Matt was walking funny and said his lower legs hurt. When we were setting in the waiting room I looked at them and I could not even make out his leg bones. This man is maybe 155 on a good day so he should be all but skin and bones! Is this swelling normal? He has had neupogen shots for 4 days in a row both last week and the week before. Could it be from that? Any helpfulness on this would ease my worried mind until we can get information from our docs!

This concerns me!!!

Boyce has this same exact thing and they found out it was blood clots. I am not a doctor of course, but eveything you are describing sounds like the issues he was having before they found out what it was. The funny thing about your post is that Boyce too was having neupogen shots before the swelling and thought they were related. He would say "Gosh margaret, these shots are killing me, that needle must go really deep"....it was not until we could not see his elbow anymore that it occurred to us that it may be something else.

One other thing that Boyce noticed was all of his veins looked like they were closer to the skin and they were very blue and pronounced. If he does not have this, it could be fluid. Again, I am not a doc.

I hope it is nothing but call the doctor please.

[boyce]

Please don't wait on getting the swelling checked. My pain was severe enough that I did not sleep and my right arm swelled to where my elbow no longer existed. They did an ultrasound and I had DVT (Deep Veinal Thrombosis) caused by the port-o-cath and chemo. I ended up on blood thinners and it was very manageabe.

Even though my juggular vein was clogged, they were not nearly as concerned as if the clotting was in the legs. Please getthis checked out at once and make sure that it is Not clot.

Chemo is miserable enough without added complications, so he'll feel better once whatever is causing thsi symptom is diagnosed, OK?

And let us know what you find out!

[Racing for life]

Well. I called the Doctor this morning and his nurse called me back. She told us to get water pills from the Rx and try them. My concern is that he is already on blood thinners from some clots they found in his abdomen from where the tumor was located. My husband says that his legs ache. I think when the nurse calls back with his pro-time (blood thickness??) that I wll tell her how concerned I am about the swelling and such.

Break in news. Call from Dr. We are heading to the hospital pronto! I will update later.
bye

[Margaret]

Well. I called the Doctor this morning and his nurse called me back. She told us to get water pills from the Rx and try them. My concern is that he is already on blood thinners from some clots they found in his abdomen from where the tumor was located. My husband says that his legs ache. I think when the nurse calls back with his pro-time (blood thickness??) that I wll tell her how concerned I am about the swelling and such.

Break in news. Call from Dr. We are heading to the hospital pronto! I will update later.
bye

I am thinking of you....saying prayers all is well..

[Russell's Mom]

Glad you are getting the attention that you deserve!! Hope all is going well, Sharon