I don't as yet have a good gauge on my husband's cancer. The ENT said very little and seemed a little surly when I asked about the stage. I'd already irritated him by asking to read the chest/abdo CT. We've only seen the rad onc once. He has an appointment with the med oncologist in 10 days.

My husband doesn't really want to know all the details about his tumor so I have been a little restrained with my questions up to this point. I am hoping once we are immersed in the cancer care system that I can ask all my questions privately. He won't mind that.

I want to know things like is it the tumor that is making it hard for him to open his mouth or is it all the dental work. Is the tumor extending into his tongue and causing it to deviate when he sticks it out or is that a nerve problem. Is the tumor the reason they couldn't do the rigid scope panendoscopy / bronchoscopy? And just where exactly does the tumor extend? Is it resectable or not?

How many positive nodes is considered a lot? I have read postings related to neck dissections and people mention x nodes removed and y nodes positive but I'm wondering how many would be considered a lot.

I forced the ENT to name it as Stage IV, I read the intraoperative biopsy report to know it is "large" and know enough to understand it is extremely serious. I'm not all that invested in the idea of getting a prognosis because it all hangs on response to treatment and there is no way to know that yet. I guess I'm just trying to figure out what would be considered a bad sign and what comes part and parcel with this type of cancer. I don't need to be carrying around any extra fears, you know?

We are not qualified to make these calls for you but I would say that with nodes affected on both sides it's worse than just one side. Seven is also a lot compared to most that catch this cancer at this stage. Most important thing is to begin the Tx that has proven to be the only way to stop this cancer. I would still press to have his cancer cells tested for HPV. Note this is a separate test and is not routinely done.

Hi yes I have to agree with david - 7 nodes bilaterally makes it more precarious - however his HPV status is very important - since the HPV responds much better to chemo and rads- if he is HPV+ this can make a difference in the type of chemo (recent studies have shown Erbitux is not as affective against HPV + cancers) and the number of nodes involved may have less weight then. It's very hard when the person with cancer doesn't wasn't to know - the dr may not be legally able to discuss with you the details privately as there is a patient confidentiality issue at play - you husband needs to make it clear to the dr. That he is to share all details with you - and then maybe you can have a private sit down. Also a warning flag always pops up when I hear the words surly (especially when a patient is asking questions) you have an absolute right to know and get the answers that are answerable!!! Drs who don't like to be questioned, or get upset when a patient wants a second opinion, or seem dismissive or threatened when a patient has done their homework - in my eyes - are insecure - most good drs - who know their stuff, welcome both questions, and a second opinion. Good luck... This is a sucky thing to happen before Christmas - I had my diagnosis the same time last year... Do push to get things moving ASAP ! And take care!

Yes, David, you are not qualified to make these calls and I am not qualified to evaluate answers from you or anyone else. But as a gauge, I wondered about the sheer numbers because the numbers I am reading from neck dissection people have been fewer. Granted many have had rado and chemo prior to the surgery. And I get it that bilateral nodes bumps up the seriousness.

As for the surly ENT, he seems to be the one we will have to deal with the least. I have had minor dealings with him in the past and the nurse in me liked him - he was nice to me and the patients. Maybe he'd rather be taking out (non cancerous) tonsils or drilling sinuses.

Cheryl, things are moving along as quickly as possible, I am confident. We haven't waited more than two days for any appointment or test. Even the PET was done before biopsy reports were back. All of this sets my alarm bells ringing. the hold up has been the dental work and required healing time. Makes me crazy that the beast is growing away while we wait. I swear his symptoms are getting worse, too. More ear pain and swelling on the jawline that I don't think is related to dental extractions. I admit to paranoia, though.

Side question -- does it annoy those of you who have cancer when us caregivers use words like "we" have appointments? I feel like this is all happening to me, too.

Okay...........HPV status. Would have assumed this was routine. Will add it to the list which includes THS, baseline hearing, CBC (done). Where's that notebook for writing things down?

Laura
You asked:
[quote]Side question -- does it annoy those of you who have cancer when us caregivers use words like "we" have appointments? I feel like this is all happening to me, too.[/quote]

My answer is NO, of course not. My wife came with me to all my appointments and my cancer affected her too. I can't speak for all cancer patients, and perhaps there are some patients whose better self is temporarily overwhelmed by cancer and who would take umbrage at a caregiver using inclusive language, but I don't think you will find any here at OCF.

Charm

Laura, it certainly doesn't annoy me. My husband went with me to all of the treatments, etc., and even now goes with me to my appointments whenever I need to get the results of a scan. I agree with Charm that this rotten disease affects both of us.

The "we" definitely didn't bother me. This happened to me and my husband and we fought it together.

I rather think that when you say "we" that it includes all of us on this site!

As a patient, it would be wonderful to hear the words "we have appointments". Having the caregiver actively involved with appointments makes things easier on the patient. Sounds to me like you are on the ball and doing a very good job for advocating for your husband. Great job so far!

[quote=davidcpa]I rather think that when you say "we" that it includes all of us on this site! [/quote]


David - great answer! I certainly second it.

Man, I only wish I'd had a "we" when I was going through all that stuff. For me the we was basically my docs and me. But man were they great.

Hi Lam

Alex and I are nearly 18 months out of treatment after undergoing induction chemo and then chemoradiation. Like you, I had a steep learning curve and a patient who "didn't want to know".

Regarding your comment regarding restraint: Alex's standard response to the medics was "tell Karen, she understands these things" which was code for "don't tell me anything that I might not be able to cope with, Karen will filter what I need to know". Just in case, we also produced a note granting permission for the healthcare professionals to disclose information necessary for me to make decisions on his behalf. I don't think they even took a copy - they just accepted the verbal assurance that I was to be told everything and I would pass information on to Alex as he needed it. I struggled with the concept of sharing the information with Alex because he is a grown up and has the right to know his future. However I also didn't want to scare the crap out of him for no good reason. I attended a few appointments on my own in order to have the hard conversations that were too overwhelming for Alex who was busy putting one foot in front of the other.

Regarding your questions re mouth opening and tongue deviation: We didn't realise it at the time, but Alex had trismus and hypoglossal nerve palsy which caused his tongue to veer right at diagnosis. This means it could have only been the cancer or the pain killers. I think it was the cancer and nothing to do with any pain meds. The palsy became more pronounced after radiation but the trismus improved. So I would take a guess based on Alex's situation that yours might be cancer caused as well.

I can't answer your other questions, although you seem to have plenty with the nodal question.

Alex and I are in Sydney and very happy to take this offline if you need to.

Best of luck and keep asking

Karen
PS I too, asked a lot of questions and had some docs get very defensive and at times, personal in attempts to intimidate me into being quiet (silly buggers - like THAT was going to work). My attitude was that we only had one shot to get this right and if my questioning made them uncomfortable, then so be it - I did not have the capacity to be overly concerned with their feelings on top of everything (although I regularly put disclaimers in my emails that what was following might be interpreted as harsh in my attempt to be unambiguous and was not intended that way).

Hi Lam,
Kris too had tongue deviation to the right. This was/is caused by Hypoglossal nerve palsy. In Kris's case case this was due to an enlarged lymph node pressing on the hypoglossal nerve. Does your husband have slurred speech as well?
You may see on the pathology a statement regarding P16 positivity - weakly or strongly.In this part of the world this is what they test for and is synonymous for HPV 16 .
We didn't ask about prognosis. We were told that the aim of treatment was curative. I held on strongly to that. Don't look at statistics, they do not apply to individuals.
Kris was more than happy for me to take control of his care, I am an ICU nurse so understood and could ask the questions that we/I needed to know the answers to. Kris trusted me to be his advocate and although he sometimes got annoyed when the Drs spoke directly to me he knew I was fighting for him. So , you do what ever you feel you need to do. This is your Husband - and the feelings of the teams don't really matter, I'm sure they understand where you are coming from.
Continue to ask questions, we are all here to help.
Tammy

Hi Tammy. No, speech isn't slurred but it has changed some with the extractions and a less mobile jaw.

We, too, were told the aim of treatment is cure. As for prognosis, well...............I DO want to know the TNM classification. I do want to know why some symptoms occur. I do want to know when to ramp up my worry and when not to. And all gut feeling, intuition, medical knowledge (not great in this arena, I admit) is suspended until we find out how he responds to treatment. I'm not all that interested in stats.

Rick seems appreciative of my advocacy efforts so far. Making a few people uncomfortable along the way will probably be entertaining to him, so long as they deserve it. He'll put a lid on me if I am being unfair though. The only one who has seemed ruffled so far is the ENT and he's probably less important at this stage than the GP, dentist, radiation oncologist and medical oncologist (will meet him on 14 Dec.). The ENT is in my bad books already for talking to my husband without me when he was drugged up and coming out from under anaesthetic after the biopsy. "Please explain why the procedure you said would only take 30 minutes took 1 hr 15 min." I can make sense of op notes, you know. I learned then and there that Rick has to say upfront and often that I am to be included, informed, etc.

Oh yeah.....Thanks to each and every one of you. Hoping in the coming weeks and months that I can give back what you are giving me. Forgive me for now though for my focus on self and family.

Your thoughts should be family first ! Especially at this time - it's funny I never told my surgical oncologist I was a nurse (he's a super big wig at the top CCC here) I told the radiation guy - because he was trying to dumb down his explanation to me so I said to him and my surgeons' fellow - I used to b a nurse so I'm familiar with the medical jargon... Just give it to me. Twice my surgeon asked me what I did for a living - and both times I told him I was a tech for the school board and an actor (part time) - and he'd just look at me funny... sometimes they find it unnerving or threatening (i had a total arse of a nurse when my mom was dying - the minute his colleagues told him I used to be a nurse his hackles went up - ! And I wasn't even the one who told him - my step dad did as he was very upset they weren't listening to him about the drugs they were giving her. (he was right about the drugs) Or sometimes they think that you think you now it all - when you tell them you are or were a nurse. so even when I was in the hospital post op, none of them knew!

Good luck!

From a caregiver's view--

I felt included in my husband's experience when HE referred to the visits, procedures, and appointments using "WE". To this day, he continues to approach this whole thing as something we have dealt with as a team. I feel so appreciated as a result. He really gets that while he had the surgeries and treatments, we traveled this treacherous path together. I can't imagine it would have happened any other way.