Paying for cancer treatment

Id wait till your next set of scans and see where you are at, it may never come back, he wants you to take meds for something that you dont have and may never have. They tried to get me to take Sutent 7-8 years ago and I refused, went over 5 years before I had a recurance, and then was able to handle it both times with surgery instead of meds. If it ever does come back on you then take the meds if surgery isnt possible, in the mean time just have your scheduled scans and live your life. Good luck

Sutent was available to me after the first surgery, but the Oncology specialist who worked with my surgeons at Oregon Health Sciences University did not recommend it.  As there was not way to monitor the effectiveness unless there was an active site, I received no drug therapy.

But there were lymph nodes that had receive errant cells; within a year, a single node in the region the kidney was found to be enlarging on a CT scan and surgically reomoved.  The following year, the same situation; only it was in the low pelvis-also surgically removed.  The last one came out in 2008, and since that time, CT's have found other problems, but no evidence of Kidney cancer recurrence.

It's been 12 years since first Dx and 10 years NED.  Guess I'm lucky.

Only you and your Doc can make the decisions.

Good Luck and hugs,

donna_lee

My understanding was that taking sutent as preventative post nephrectomy can delay the chance of metastasis (but only by about 8-10%) but once there was mets it did not change overall survival rates. It comes with lots of side effects. Personally (and my onc agreed) I thought it was a pretty crappy option and I have very aggressive grade 4 cancer. I would say to do watch and wait but be vigilant about scans.

Adjuvant therapy after surgery has never been a big thing with mRCC as it did not always show benefits (8% is difficult to accept or substantiate), and it is usually better to wait to see what actually happens. 

Sutent is Sunitinib, which was the "other arm" of the Checkmate 214 trial I was part of.  When the Suni stopped working, people on it were moved onto the immunotherapy which has now been shown to have a much better success rate.  Check my profile for details.  Sutent is neither new nor optimum.

If the cost of the treatment is an issue I would advise you to seek a better option for a better cost/benefit result.  Those of us who live in countries with a more helpful universal health system don't have to make these decisions on economic grounds, just medical outcomes.

Best Wishes,

Fred

sedonaman said:

Thank you for that article,

Thank you for that article, it was very interesting and definately something to take into account. I have been wanting to see something factual in writing. Thanks for passing this on to me.

 

You are welcome. Hope you find a decision that helps you beat this. My experience (my father is the patient) is that he first underwent a radical nephrectomy some years ago. After 5 years it appeared again on the other kidney. In a few months, again on the remaining part. So last year he underwent two partials and three months after the last one two small nodules appeared again (ther is no space left!). Now he has passed the revision and the nodules have not grown so they have decided to remain observant for the next year. From what I read, RCC is a hard-to-treat cancer because it can re-appear many years later as my father's did. Co-adjuvant therapy was not present at that time and sunitinib seems to help to some degree. It is clear to me that I would personally try it but my concern is the question:

a) Is it really preventing it to re-appear

b) os it it just delaying it and people with reccurrences are those that would recurr later?

In the latter case, are they loosing the opportunity to be treated using sunitinib when this happens or there is no resistance created? If there is no resistance, I would definitely go for it. If it does affect my quality of life, I would be able to stop it anyway...

That is what I would do.

the thing with cancer treatments is that we are always 'late' related to what is known in the sense that, in this case, it was approved based on a study perfomed years ago. Not there will be new studies comparing that one with real lfe events and those esults will probably be much more precise. But, again, it will be affected by new meds effects, surgery techniques (look at the CARMENA study), etc... So I would go for doctors opinions (two or three) and take my decission based on that info and my gut.

Best whises

Can you see an oncologist who has RCC-specific experience?

I had Stage 3 Grade 3. I tried a trial for this but it used everolimus. 2 years after my kidney was removed I had a metastasis to my adrenal gland and had to have removed. They unblinded me from the study and found out I had had a placebo. They offered me another trial for adjuvant therapy (where you take a medicine even though you don't have any visible cancer to keep it from coming back) using votrient but I refused.

These drugs have a lot of side effects. They are hard on your body. Sutent. Votrient. Look at the side effects. It's quite a few. They can mess up your liver, cause high blood pressure, turn your hair white, give you diarrhea, make you naseous, etc.

I don't think the drug was that affective to keep the cancer from coming back. If it were me and mine came back again and they removed it again, I wouldn't take these drugs when I was otherwise healthy. That's my opinion. I don't think the effectiveness warrants the side effects and the expense. If the insurance company won't pay for it as this mode of treatment, I think that's another indication that it may not be a very worthwhile option.

Stage 3 Grade 3 you need close followups. If it does come back, you want to catch it early. For me this is very important. After surgery I had a baseline MRI of my brain with contrast, a bone scan, and a CT of chest abdomen pelvis (with contrast if you can) all as a baseline and to make sure there no mets at the beginning. Then I got CT scan of chest/abdomen/pelvis every 4 months the first year and every 6 months the second year. I would have gone to yearly after 2-3 years. However, I had that met to my adrenal. So for the last 3 years I've been getting followups every 3 months (CT of chest/abdomen/pelvis) and some blood tests. You want to catch it early so it might be operable. The longer it goes undetectable, the more likely it will not be operable.

Wishing you the best. Talk to your doctor about the tradeoffs. If it's somebody that you can't talk to, find somebody else/get another opinion. Try and find a medical oncologist who specializes in RCC. These are usually researchers at universities and cancer hospitals.

Best to you,

Todd

a_oaklee said:

Agree with Todd

Wow.  Everything Todd said!  He's been around for awhile reading alot and so have I (for my husband).  I agree with his opinion.  I would not take these drugs as adjuvant therapy.  I think your body needs to be as healthy as it can be, for as long as it can be.  Sutent is a tough drug to take.  But it does work wonders for a number of people.  I'm glad it's part of the arsenal.  Another factor that you might want to think about is that clinical trials frequently want patients who have not had any previous medications.  If you take sutent, you could make yourself ineligible for some.  Please also join smart patients.

If you take Sutent and it does come back, you'll have used up Sutent already as one of the drugs you could use to fight the cancer. They most likely would assume any mets that develop while taking Sutent are resistant to Sutent.

I don't think they know enough about the adjuvant therapy usage of these drugs to know what they will do if your cancer comes back while taking them, but I would assume they would need to move to another drug.

Did you look at the effectiveness of the drug as an adjuvant therapy? I don't think it stopped the cancer from coming back. I think they only showed it delayed the cancer coming back. I also don't think it delayed it that much. I really might be wrong on this. Please ask your doctor. You need to weigh all of this to make a good decision. Cost. Side effects. Effectiveness. What will happen if it comes back while taking the drug (including eligibility for trials as pointed out above). This should be decided by you with advice from a doctor that really understands RCC risks and treatment options.

I know I've had my Stage 3 Grade 3 turn into Stage 4 and my medical oncologist (an RCC expert at City of Hope) has not been suggesting I start taking Sutent as a prophylactic.

BTW, my clear cell RCC Stage 3 Grade 3, the prognosis according to 2 different RCC medical oncologists the risk was about 25-30% chance of it coming back. Then it came back after 2 years. After it was removed on the second go around, my oncologist gave me a 35-50% chance it would come back and another put it more like 25-30% again. It's been over 3 years now. As time goes on the risk goes down. Whether you do the adjuvant therapy or not, you need close followups and I would never stop the followups even after the magic "5 year" mark. That 5 year mark has nothing to do with RCC. The risk of RCC returning does not go to 0 after 5 years. I have several friends that have had RCC and have had it come back 10 years or even 20 years later.

Best to you!

Todd