Is anyone a patient at Santa Clara Valley Medical Center/ Sobrato Cancer Center?

Cost of treatment

I'm Barbara, AEMNOCA's wife - sorry to hear about your mothers diagnosis.  You've come to a wonderful supportive group here that can provide a lot of information.

Mike was diagnosed with T2N2 stage IV HPV16+ base of tongue/lymph node cancer end of February this year - we are in northern Oregon and he has Kaiser Permanente insurance - lot of people are skeptical of Kaiser but I have to say he got top notch care at their Portland cancer center.  He had 3 cysplatin treatments and 35 radiation treatments - just had his post-treatment PET scan where everything was clear - no cancer and is in remission.  Fortunately he did not have to have surgery!

His treatment team consisted of his PCP, ENT Dr, ENT surgeon, chemo ONC, radiation ONC, GI Dr, speech pathologist, dietitian/nutritionist, dedicated oncology pharmacist, dentist, and home health nurse - they were all essential to his treatment.

We just recently got the final EOB from when he was diagnosed to final PET scan - THE TOTAL WAS JUST OVER $102,000 - there will continue to be numerous follow-up visits/tests at least for the next 5 years.  Fortunately with Kaiser each treatment cost only $25 - our out of pocket costs were only around $2,500 for everything.

Dont't know anything about SCVMC cancer center - we lived in the bay area for many years but always had Kaiser - he stayed with them when we moved up here four years ago.

I think WMS goes to Stanford for treatment and could give you more advice about that.  You might want to check with the hospital financial office - sometimes they can provide some assistance.  It was a 130 mile round-trip for us M-F for seven weeks - Kaiser would have put us up in an extended-stay hotel for 4 nights a week or send a taxi for him every day (130 miles). We decided to move our motorhome up to an RV park about 18 miles from the ONC/ENT office so he would have his own bed/bath/kitchen/SAT TV, etc - home away from home - and they paid for 5 of 7 days a week for us to stay in the RV park.  Don't know if anyone else has had that kind of experience or other hospitals offer that kind of service, but it doesn't hurt to ask.

Whatever decision you ALL make about her treatment she will need a very strong support group to help her get thru this.  Come here whenever you have questions or need support.  Positive thoughts and prayers to your mother.

Barbara

Stanford

I am also a Stanford patient.  I live in Merced, 2 1/2 hours away.  I have surgery and follow-up at Stanford and have radiation and chemo close to home.  You might see Stanford for a second opinion and continue treatment in Santa Clara.  You might also want to check out the Superthread to be prepared for what is to come in treatment and post treatment.  Stay in contact and we will help you through this.

Sobrato Cancer Center one of the best

 

I am a 59, male, and was diagnosed with stage IV tongue cancer in April 2014, and underwent radiation and chemotherapy during the summer. I have been very well looked after. I am an active patient. I get a second opinion from Dr. Harlan Pinto at Stanford, my Radiology doctor was a very competent Stanford University student and is now a medical professional at Sobrato, and everyone else I have worked with at Sobrato is world class.  Many share appointments at Stanford. I also had brain surgey in April last year for a brain bleed, a superficial stroke, that so far is entirely unrelated to my cancer and I was in the ICU for almost 2 weeks. I was under the care of Dr. Marco Lee, who holds an appointment at Stanford Medical school. Everyone works together very well and there are real benefits to working with the team at VMC. I could not get better care, anywhere.

My only qualification is to suggest you always drive the extra distance to go to emergency at Stanford, the emergency room at VMC is always overcrowded. But otherwise I find VMC and the Specialty Center less busy and more relaxed, the people are very nice and very competent. I suggest that you send me email if you want more details or have specific questions to ask.

Finally, it is immoral to withhold the facts from your mother. It is way too early for you to panic and her prognosis may well be very good. So, I suggest you be entirely honest with your mother. The odds are anyway that the doctors will prefer it that way. The last thing she needs is the secretive nonsense that you portray here. Your mother should see Kim, the social worker who has an office at the center, she will likely to get free coverage from medi-cal.

Don't be afraid

Don't be afraid. Many, many base of tongue cancers are diagnosed as a Stage 4 because it is an area that cannot be easily seen. I was told a Stage 4 tongue cancer is not the same as a Stage 4 lung cancer. It is not a death sentence. In July, I was diagnosed with Stage 4 which had spread to a lymph node on both sides of my neck. I'm 61, never smoked or drank, and it was HPV negative. My oncologist said they were absolutely going for a cure and my chances were greater than 90%. The treatments are rough, and the healing phase afterward is even rougher, but keep in touch with the people in this group. You will get lots of ideas on how to manage any side effects. You'll be added to many prayer lists too. By the way, I am cancer free now and, other than some minor effects, I am feeling better than I have for three years.