I am confused after the meeting with the radiation oncologist the first week of treatment. She showed us the scans where they would be targeting radiation and kept referring to the tumor. After my husband left the room I questioned why she was saying tumor when the biopsies showed they got all the cancer after surgery in November. She proceeded to look up his records but had trouble accesssing them and acted like she and the resident in the room must of both been mistaken. NOW, I am wondering if a tumor would show up on a CT scan which I didn't think was possible. I had pushed for any type of test so we would know if the cancer had spread so they would have a baseline to know how effective the radiation and chemo is down the road and of coarse they said no that his cancer would be detected only visuallly on a monthy basis. When my husband had his neck dissection I had to push for that monthly check which was overdue and it looked like the cancer was back. They did take a biopsy during his neck dissection which came back negative, being scar tissue. I wanted to cry when I found out they just did one bioposy. The other doctor had said they would biopsy all around the vocal cords. I just want some re-assurance it has not been going wild since Nov. Now I am wondering if there is a tumor which could of changed our decision for radiation and chemo. Even if it meant removing the vocal box to keep from spreading. Sorry for so long but I just need to know if they could of found anything when planning for radiation.

Yes, CTs show tumors. So do MRIs. PETs detect areas of high metabolism, something cancers have. PETs are often done in combination with CTs. But all that is neither here nor there and does not address what seems to be troubling you -- if there is some base that hasn't been covered or some information that hasn't been given to you.

I strongly encourage you to pin them down until they answer all your questions to the point that you are satisfied. Approach them with respect but from a position of strength. Every code of practice, every guideline and ethical standard specifically calls for doctors to do this, especially for patients with critical and complex needs. I would hazard a guess that people have put things in your hands, including a Patient Bill of Rights or something similar with a different title. Have a look.

Given confidentiality issues, is your husband willing to press them or be present and let you do the questioning? Does he WANT to know everything there is to know? My husband doesn't but is fine about me knowing and telling him what he needs to know when he needs to know it.

Don't be brushed off, rushed along or made to feel like you are being a bother. Seek second opinions, especially if something doesn't set right with you.

And keep your eye on them (the medical team). I am a nurse and understand the healthcare environment. No matter how good the staff are, stuff can happen. I'm not meaning to cast things as "Us" and "Them". I mean the opposite. We are all working toward the same goal. The more people around who are paying attention, the better. I think it makes our loved ones feel a little more at ease, too.

Here's my experience..........Rick was to have weekly chemo and 7 wks of rads. Because it all happened around the holidays, the chemo clicked along once a week but the rads stretched into the 8th week because of days missed for public holidays. He had the first two chemos as an inpatient. For whatever reason, I was the only one counting chemos accurately. He was put down for an 8th cycle before I questioned it. And it was a mistake, he didn't need to have it. They had forgotten to write down one of the inpatient sessions.

Best of luck in the coming days and weeks.

One thing I have done since the begining was to get a copy of my Medical Records. After every CT Scan, after surgery etc... I have no clue what they said,( Big Long Words) but I did look the words up online and figured it out myself. I felt much better knowing.

You might want to get your Medical Records it might help.

Take care,
Connie

Hi there Iam007 is correct most tumors show up on a scan unless the are super small (read micro scopic), in which case I would also wonder if they are visible to the naked eye at that point. Do get clarification - It is of the utmost importance that you are confident in the drs and treatment, and I too used to be a nurse and know that with so many fingers in the pot it's possible to miss something, so you need to advocate. Also a radiation oncologist needs a ct to work from to know where to focus the beam and design the radiation plan - so it is imperative that they know what they are talking about and what they're looking at.. your drs mistake is a little scary!

Good luck! And I'll say my prayers for your and your hubby.

Thanks for the info. I am anxious for Wed. to get an answer in our meeting. Either way the oncologist should know what she is treating and if they did see a tumor we should of been told!! A I am good at sitting down with the doctors without my husband. He has a no need to know attitude and leaves things up to me which has been working so far. I am trying to keep an eye on everything and already notice he a 7 chemo's schedule when we were told just 6. It is actually 5 days after his last radiation. I will be clarifing this.

Definitely - I was told when I asked to have my final chemo (it would have been 5 days post rads as they started a week late and my WBC were low one week so they put me off another week, that there was no point since cisplatin highlights the radiation. And at that point I would be finished. I thought this flawed as radiation is cumulative and continues to work for up to two weeks after but I didn't argue since I doubt they would have given it to me regardless. if its not cisplatin then perhaps it's ok. Good luck wed.

HI Terrib

Continuing to question the doctors until you understand is important for you and your husband. Doctors never know if they are facing people like your husband ("just tell me what time I have to be there") or yourself ("yes but why and what are the options?")so may well err on the side of caution and answer only when asked until they get your measure. They may also be pulling their punches while your husband is within earshot (although Alex's doctors never did ).

Alex and I also had a complete response to the first part of treatment, although in our case it was chemo rather than surgery. So radiation was targeting a "tumourless" area. Our doctors told us that there may be residual cells in the area that were too small to be picked up on scan or examination and previous experience had taught them proceed with the radiation to blast any residual cells and hopefully avoid recurrence.

Regarding the extra radiation: Alex and I were also scheduled for chemo dose after radiation was complete. I questioned this as illogical and the chemotherapy oncologist agreed. Consequently, the last day of Alex's treatment was the last dose of radiation.

Karen

Just as an informational note for others reading this forum, at lleast one of the Erbitux (Cetuximab) protocols in clinical trials tested specify sessions following the end of radiation.

Kevin had his last Erbitux the day after the last rad.tx.

I was in a cetuximab trial and started infusions the week before radiation then continued infusions weekly until three weeks after I completed radiation. I'm glad you'll be clarifying with the oncologist. Maybe there's a reason for the extra chemo but, like others stated, it could be an error. Don't stop asking questions until you feel confident that you have all the pertinent information.