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

bluesilence

Hi,

My mother is currently a patient at Santa Clara Valley Medical Center. She was diagnosed as Tongue cancer on Sep 17 through biopsy. After MRI and PET/CT Scan, it was said to be in stage I/II so she was scheduled for a removal of tongue and lymph nodes surgery on Oct 16. However, after the surgery, the doctor said it was worse than whatever showed in the test result. Now it became a Metastasis to cervical lymph node and was considered as stage IV. She will be refered for Radiation afterwards.

It is a real shocking news to us, my sister and I cried a lot however didn't let my mom know about her current stage. She is 57, never smokes or drinks but used to be a 2nd exposure until Aug this year. My concern is: Standford hospital is one of the best cancer center in the US and is not far from where I live, but I chose Santa Clara Valley Medical Center because it was more affordable since my Mom doesn't have insurance. I'm just afraid if I made a poor decision and put my mom in this life threatening condition. Is there anyone who has experience with this hospital and can share the feedback? Should we sell everything we have to get her treated at Standford instead? I really don't mind selling as long as we can afford the treatment till the end of the road. But it's so difficult to get an estimated total cost because they always said it'd depend on a lot of factors which are not known until she really gets seen at that specific hospital.

Thank you for your attention!

wmc

Call Stanford

I don't have any knowledge with Santa Clara. I went to Stanford, My work insurance coverer it and yes it is expencive.

It can change for the better or get worse once they do get in during surgery. Mine got better and went from T4; N2; M0 which means it has gone to my lymph glands,[which happens] mine changed to T3; N0;M0. They did take out my glands as a precaution, 86 glands. I just had my one year NED. [No evedance of disease]

Call and see if you can qualify for a medical hardship, they can reduce the Bill by a lot. If you do have insurance they will take that as full payment if you qualify.  This is for uninsured and insured.

SHC Patient Financial Assistance
Patient Financial Services
2465 Faber Place
Palo Alto, CA 94303

Customer Service

Phone: 800-549-3720

I wish you the best

Bill

aemnoca

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

wmc

Santa Clara Valley Medical Center

Stanford is affiliated with them in the heart department, and may be other departments. You have many options. You might just get a second opion from Stanford and hav the Rad at Santa Clara Valley Medical Center. I did not need radiation, but if I did they said I could have it done local and they would let them know what they wanted to do.

It is very scarry, so do not start second guesing what you have done. It went to stage 4 because it went to the lymph glands, but it is still very beatable. It is a rough road she will be going down but she will make it like so many here have befor her. Just believe in her and suport her, it wil be rough at times. If you need to just come here and vent, or just say you're scared we will understand. This is the best place to come, we have gone, or going through it and do really understand.

Bill

KTeacher

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.

donfoo

KTeacher said:

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.

ditto

The first step is to get a second opinion from Standford. If the diagnosis and treatment plans are consistent than being treated elsewhere would be more acceptable. If you have any way to get it all transfered to Stanford that would be an unquestioned decision.

Steven.Ericsson-Zenith

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.

Sailor123

Hi Bluesilence:
It is very

Hi Bluesilence:

It is very scarey receiving this news about your mom.  She is still very young.

My friends husband had the same diagnosis as myself and your mom and he was treated at Stanford.  I was treated in Southern Oregon and we compared notes every step of the way. I too wondered if I should go to a more well known hospital for treatment.  In the long run, my care was superior to that of my friends husband.  We were all in agreement about that.  I can give you specific details if you would like them at some point.  Moral to the story is that it isn't necessarily black and white.  I agree with those who said to seek a second opinion at Stanford.  The more information you can gather, the better.

You have a difficult road ahead as a caregiver.  There are many people here who can answer your questions and make things a little easier for you along the way.

Best of luck.  She can get through this and her life will get back to normal, but its a very slow process.  I have been finished with treatment for nine months and things are once again, pretty normal.

Shirley

MrsBD

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.