Need Advice Please

Quite Simply that. I would get all the records and seek the best Comprehensive Cancer Hospital near you. Here's a list and ratings http://health.usnews.com/best-hospitals/rankings/cancer

I was uneasy about the local hospital and my expereince. I sought a 2nd opinion at Johns Hopkins in Baltimore and ended up being treated there. The treatment was dicided by an entire team of head and neck specialists and a cancer board. I was Tx N2B MO Stage IV. I'm here today 2.5 years later. 

Positive thoughts and prayers

"T"

I'm so sorry you find yourself in this situation. To be honest, it all sounds very strange to me. If his doctors were in disagreement and told you different things, that is definitely a red flag. The fact that they haven't returned his calls is also very concerning. Who diagnosed him? Did he see a local doctor first? Maybe try calling that doctor. 

There is obviously a communication breakdown somewhere. I would wonder if his doctors had even met regarding his case, which I believe is what they usually do at a university hospital. Personally, I've never had someone say, we'll get back to you to discuss it further. Usually an appointment is made or a plan is clearly laid out for the next steps.

Is there a nurse or a scheduler who could at least relay your questions and concerns to one of his doctors? Let them know you need an answer "today." Do you have online access to his records so you can read the notes? Maybe contact a social worker at the hospital?

My husband had stage 4, HPV+ tonsil cancer with nodal involvment. We met with an ENT surgeon who gave him the choice of either surgery + radiation and MAYBE chemo if margins are not clear, or surgery + radiation if margins are clear, or chemoradiation with no surgery unless the node wasn't completely gone, then neck dissection. That same day we met with his MO and his RO, all who explained the same exact scenarios and left the choice up to my husband. He opted for chemoradiation.

We are always informed of what is going to happen next. Appointments are setup for us before we leave. His nurses always return my calls the same day. We have a large card with his team's photos, names, and phone numbers. I bring in a list of questions to every appointment and they take time to answer every single one. 

I'm glad your husband's surgery was considered a success. It would be wonderful to be able to do without chemo or radiation if in fact that is what they are saying. I'm not a doctor, so I wouldn't want to even try to answer you on what is the gold standard. Honestly, I think I'd gather his records and get a second opinion - preferably at a major medical center that specializes in his cancer. 

Good luck and let us know what you find out!

i am sorry you are here and about your husband's diagnosis. My husband was diagnosed with stage 1 tongue cancer in October- no lymph node involvement. My husband is 41. He is being treated here in Houston where we live , and he had surgery that successfully removed the tumor with clean margins. We were given the option to watch and wait, but MD Anderson recommended that he do radiation on both sides of the neck (6 weeks) with 6 rounds of chemo to be extra safe. So that said, I can't imagine your husband just doing surgery with no rads, especially with the node involvement. That is why I say you need to get a second opinion. Good luck and my thoughts are with you.

Wow, that is all very strange that the Rad is not recomending, as they most always will. The sergon said he got it all and is recomending it. I am no doctor, but I would want a second opnion. With a 2cm tumor that went to lymph gland is often at least a 3 and could be a 4. I was 3cm x 2.5cm and T4;N1;M0 which is stage 4 because on the lymph galnd, but in surgery it was only T3, N0, M0 and they got it all and did a neck dissection on both sides and took 48 on left and 38 on right as just a precaution. Rad recomened radiation [that is what he does] surgen said I could but he did not think I needed it.

The reason for the second opnion is the confusion and that it was HPV+. Now HPV+ does respond to treatment much better than no HPV, but just lately they find it comes back much more often.  I would guess the second one will say no radition now and just check it every three months. That is what I did. My surgen who was the head of the department said I did not need it. IF he has said to do it I would have. Mine was just above the vocal cords Supraglottic SCC, and they took my larnyx out and the lymph glande on both sides was only a precaution. I have been clear 28 months.

Bill

Hi Jennifer, it's pretty easy for me to sit in my living room 6 years past my diagnosis and say it dosen't sound all that suspicious.  There are several dynamics going on here. Two days ago I attended a seminar given by the surgeon who treated me six years ago. There are many survivors who have been treated with chemo/radiation/surgery and I am one of them. There have also been subsequent studies that show that being treated by just one method in many instances results in the same outcome. There seems to be a trend to treat less and scan less and this seems to be indicated by survival rates. In a six year period we therefore see rapid and dramatic changes in treatment philosophy. Curent surgery has advanced rapidly and is less invasive and more accurate than when I was treated. I can empathize with your sense of urgency but perhaps slower might be better in this situation. Radiation brings a hosts of long term side effects including second cancers and increased incidence of stroke. Chemo carries it's own negative post possibilities. I would call the surgeons office and arrange a consultation meeting to discuss options. There are patient advocates in every hospital that can help you if needed. Part of the conversation should center around sending the case to a tumor board for a decision. You can while waiting start the quest for a second opinion. Much of this can be done over the internet by submitting lab and medical documentation. It is entirely possible that you are on the cusp of a new philosopy of treatment based on encouraging results from recent studies using only one treatment modality. The hospital buracracy issue is a whole different enchilada but it can be navigated with huge doses of patience and courteous but confident communication. With another scan scheduled in March the way forward will soon become clearer. Your concerns are real and may well be justified but don't rush into addtional treatment without a tumor board recommendation for said treatment. All the best to you both. 

tommyodavey said:

What Type?

Jennifer,

 

What type of cancer was he diagnosed with?  I ask because the only one I've read here where a doctor would not suggest chemo or radiation is if it is Mucoepidermoid Carcinoma.  Over 90% of oral cancer is SCC, or SCC with HPV positive.  Even with clear margins most doctors recommend radiation at the least.  The majority suggest chemo plus rads.  Unless it was because of the clear margins they are rolling the dice in hopes that it won't return.  Get a second opinion.

 

MEC is the cancer I had.  Base of tongue tumor removed surgically, followed by a radical right neck dissection.  On both I had clear margins.  Plus, MEC does not respond to chemo so that was out.  I did have low dose radiation just to make sure all the C was gone.  And of course nothing is guaranteed.   

 

I'm so sorry you two are dealt this hand.  We here have all been through it so please use this site of great members to help you get through it too.

 

Tom

It is like real estate, location, location. Mine was supraglottic just above vocal cords and pressing on the left true cord. I was surgery only and did not recomend radiation or chemo. They took my larynx so they got it all and no lymph glands, all clear.

Bill