Does anyone know a pathologist who will look at biopsy slides and give a diagnosis without a bias regarding prior diagnoses? When we received the 2nd opinion, the pathologist was going to refer us for a 3rd opinion but couldn't think of any colleagues who would reverse a cancer diagnosis. Given that my partner already had treatment (2 visits for radiology and two weeks of chemotherapy) it will be nearly impossible to get any pathologist to go near the slides.

My partner was never able to go to the second opinion consult--he had to cancel because of oral surgery and then the RO had to cancel the next appointment. The next available date was longer than the doctors wanted to wait to start treatment.

The second opinion was from an NCI recognized CCC. They assured me that they would not call me to say he didn't have cancer unless they were absolutely certain. Four pathologists looked at the slides and all agreed it wasn't cancer. The director of pathology for the CCC was one of them.

We have major trust issues with the regional hospital where he's receiving treatment. Among some of the red flags that caught my eye was that they sent the pathology to Stanford. They told me that Stanford's pathologists were the best, that the slides were going to their head and neck center, and that they were the leading authorities on SCC HN. I checked the qualifications of the pathologists on the report. The paths were not associated with the Stanford Cancer Center, they were not listed among the doctors in the head and neck group (notice--group, not center) and their areas of research listed nothing to do with diseases of the head and neck let alone SCC HN. The doctor who signed the path report specializes in cardiologic pathology with an emphasis in transplantation pathology. In addition, the RO has behaved very oddly. I should have known that when he got upset that we were getting a second opinion, there was something very wrong with the situation.

I can't bear for my partner (postponed divorce)to endure treatment that will adversely impact him for the rest of his life and will possibly expose him to an unnecessary cancer risk. This whole thing has caused such turmoil with him, our children and myself. We just need an honest answer we can trust--either cancer or no cancer.

The pathology doctor at the CCC said that, unfortunately, once a cancer diagnosis is made, other doctors will rarely reverse the diagnosis and state that someone is cancer-free. I'm hoping someone out there knows of a pathologist who will take on this situation. I feel like Diogenes with his lantern. And, my ex-husband must feel like a man wrongly accused of a crime given a life sentence.

The work around is to get a second biopsy done and specify where you want it sent, picking the institution that you want. I forget the history here, did he have his tonsils removed for the biopsy, or did they take a sample of them? If he had a positive node for SCC, then he needs to go through the treatments even with an occult oral environment. HPV+ oral cancers are frequently occult and can be as small a primary as 2-3mm inside a tonsil or base of tongue tissue. At that size it could easily be missed in a CT scan. At that size they spin off SCC daughter cells which move into the neck through the normal lymph drainage passageways, rather quickly before the primary has had a chance to grow to a significant size. There would be nothing on the surface to see. This is a very common presentation of HPV+ oral cancers.

I told the oncologists and the ENT that I didn't want them going to Stanford. I wasn't going to trust any choice made by the hospital's pathology department. They sent it there anyway. The tonsil BX was negative--no surprise given the situation you mentioned. We had accepted an occult primary after the 2nd biopsies (tonsil/oral cavity) came back negative. The diagnosis is being based on a p16 positive stain. The CCC diagnosed a branchial cleft cyst with no evidence of carcinoma. I have found studies that confirm that cells will show up positive using the p16 stain in both Branchial Cleft Cysts and SCC HN. It is a difficult diagnosis for even highly qualified pathologists. Branchial Cleft Cysts often look like SCC and SCC often looks like Branchial Cleft Cysts.

His MO has ordered another PET scan (the first one was done after the first biopsy, which seems backwards, and also after he had thrush following a throat infection and allergic reaction to antibiotics that caused his lymph nodes to swell.) The scan may reveal a completely different situation which could alter the treatment plan. Also, he will opt for microsurgery to try to locate the primary. We know it may yield nothing, but it is worth a try. We want to minimize the field of radiation.

It has been a protracted process while holding a ticking time bomb. I appreciate any assistance or guidance you can offer.

Sandy, I should figure out how to quote folks here in the little box the old timers use, but the term "life sentence" doesn't apply the survivors here. The truth is that doctors, nurses, Np's, Ro's, Mo's Rn's, and my parents (God love them)have caused me way more stress than HAVING CANCER. This is cureable. Find a team you like and trust, but make no mistake... you might still second guess their judgement from time to time. After all they will be the lesser of two evils in order to save his life. ie...side effects and the like. I sense you have done much homework. Keep it up. And stay with the folks here. Together we can get through this. He'll be fine and you can get on with your life. Much love. Will Zinn

Sandy, I wish I was able to assist you and Joel with this situation. I feel just awful at what a run around has happened to him. As always, hoping and praying for his good health. If he is sick then I hope and pray that he gets the best possible medical care.

Sandy, it's a brutal decision. But I'm having them radiate my right side too for a 3mm node that may or may not be cancerous. I just want it dealt with. If you decide on radiation, then go with the place you are at since they have his plan already in place. I find that after the treatment has started the ROs are only there to answer any questions you have about side effects and offer up scripts. Mine is not good at answering much else I have learned so I've decided to go with it. and be dine with this.I know the side effects suck, but hopefully being cancer free at the end will be the optimum payoff for however many weeks of discomfort. Not knowing for sure it's cancer is the worst, but whatever it is... I would personally want it out.

Best of luck, I wish I could help with regards to the pathologist, unbiased is sometimes hard... Maybe there is an independent group that can look, but then you have to see about their credentials and whether to risk his life, on their decision.

Bottom line..
I hope you get some peace in this matter soon. Many prayers and hugs to you!

[quote=MaineWill]Sandy, I should figure out how to quote folks here in the little box the old timers use, [/quote]
Just click on "quote" next to reply.
Delete the parts you don't want like I just did

Then select "submit"

Why not try UCSFCCC, Mount Zion in SF. They cured me (although my pathology report was done at Kaiser Permanente is Walnut Creek). I also had a choice between UCSF and Stanford and, geographically am equidistant between the 2. Stanford is a CCC and a fine institution but IMHO UCSF has more H&N experience. They are also higher ranked than Stanford for what that's worth (and the only public institution on the list).

I have also worked with pathology companies on a consulting basis. As far as I know SCC is relatively easy to Dx, as long as they have a good sample, and a snip ot punch biopsy is the gold standard - FNA, not so much.

sandy...i dono what happened on fb, but if i offended you when i was teasing brian about stealing my friend, i am sorry. It was meant to be a joke towards him, and not saying anything about u stealing him. Hope everything is ok with you and joel, and sorry if that came off any other way then me just teasing him. Couldn't find u on there anymore, so I think i upset you. Either way, sorry and hope you and joel are well!

Oh Bethy!!!!! No!!!!! I thought what you wrote to Brian was really funny!!!! I've just been going through a rough patch with Joel--relationship stuff. I needed some down time. I'll send you a PM either here or on FB to tell you more. You are an absolute doll! And I am so sorry if you felt bad in any way. Believe me, you didn't do anything to offend me. No one can find me on FB--I've deactivated my account--I needed to disappear for awhile.

Love you, my Bethy!

Sandy
xoxoxox