Need Advice Please

Jennifer Rekart

Hello. I'm hoping someone out there has been in a similar situation as ours and can lend some advice: My husband, 48, was diagnosed with cancer in late November. On December 15, he underwent a 7 hour surgery to remove the tumor from his left tonsil/base of his tongue. The tumor was approximately 2cm in diameter. He also had a neck dissection done that removed 29 lymph nodes. One node was found to be cancerous; the cancer was entirely encapsulated and hadn't begun to spread elsewhere. They staged the cancer at a II-III and it is HPV positive. We met with a surgical resident (he's being treated at a teaching hospital) for a post-op visit and he explained that the margins were clean; the cancer had been eradicated via the surgery. We met with a medical oncologist who stated that my husband does not require chemotherapy, and he'd see us in 5 months. And then we met with a radiation oncologist who went over the pathology report in depth with us and stated that he didn't believe that radiation is indicated at this time. He suggested a plan that includes scans every 3 months for 2 years, and if need be, J. would be able to opt for radiation later down the road should it be indicated. And then the radiation oncologist consulted with the surgeon to make sure they were on the same page. They were not. The surgeon is recommending radiation for 6 weeks, on BOTH sides of his neck (as a preventative measure, from what we gather). This surgeon was the same person who was adament pre-op that J.'s course of treatment could be either surgery OR radiation/chemotherapy. He was confident that the tumor could and would be removed entirely with the operation. And it was. The radiation oncologist who initially recommended no radiation then stated that the decision was J's, but now J. could opt for either radiation for the left (formerly cancerous side), or for both sides of his neck, or do the scans on the area frequently for 3 years. After doing even more research over the course of several days, J. called the radiation oncologist and spoke to his nurse; he told her that he'd decided to hold off on radiation until it was more clearly indicated. She said she understood, and that someone would be calling J. to discuss the matter further. No one ever called. It's been over a week. J. has left voicemails with the surgeon's "team" and with the radiation oncologist. We frankly have no idea who to speak with, or even who to call. If the surgeon recommended radiation, but the radiation oncologist didn't, does this mean that J. opting to not have it removes his surgeon from his care from here forward? And if he's not doing the radiation, what part is the radiation oncologist playing now? But most of all, I need to know if anyone else was ever given this choice and if they decided on surgery over radiation, etc.? I'm terrified that he's making the wrong decision. And yet, I sat there and listened to all the radiation oncologist said as he covered the results of the pathology findings. And he didn't hesitate to say that radiation wasn't indicated right now for J. Even as he was relaying the surgeon's recommendation, he made several statements that were clearly meant to convey that J. still had a choice in the matter. But if he has a choice, why is no one calling him back? Why have they seemingly written him off? I'm a special education teacher, not a rabid patient advocate, but I feel as if I need to be moving some mountains here in order to get someone to speak to us. Is radiation the gold standard of treatment? Is it possible that the radiation oncologist was wrong in stating that J. didn't require radiation right now? Can patients live normal, healthy lives after successful cancer surgery if they don't add radiation to the recovery plan? And does anyone know who J's "primary" cancer doctor is right now? Is it the surgeon, the radiation oncologist, the medical oncologist? Who is it we need to be speaking with regarding scheduling the scans that need to be done in March? And is it always so damned difficult dealing with hospital staff?? It seems to me as if it shouldn't be a struggle just finding someone to speak with.

Thank you for your patience reading this and thanks in advance for any advice you can give! 

fishmanpa

2nd Opinion

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"

 

 

rcaulder

Pray

I want to quote a sentence from your post, "This surgeon was the same person who was adament pre-op that J.'s course of treatment could be either surgery OR radiation/chemotherapy". You place a emphasis on "OR". Possibly after seeing your husbands tissue DURING surgery he may have changed his mind about radiation and wants it to be safe. The cancer has been cut out for now. I wouldn't rush into a hasty decision. I would get a second opinion for sure. Having delt with radiation for 7 weeks, it definitely was no picnic. It leaves pretty bad late affects. It seems uncommon though to see metastatic H&N cancer without radiation. Your husband would be a lucky man if he got away without it. You do have time at this point to rest and let both your thoughts clear. Surgery was a big milestone. Nevertheless, if you are a believer, pray for guidence. It will come. God will direct your path.   <><

the_wife

I'm so sorry you find

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!

 

MarineE5

Similar

Jennifer, 

Your husband's cancer sounds somewhat like mine but I was SCC on Base of Tongue. I too had a Lymphnode involved and had 30 some nodes removed. I found a bump under my jaw one day, it ended up that I had 2 nodes involved after the neck disection. 

I was given choices also, prior to anything being done by the Surgeon. I was sent to him by a local ENT. He discussed my options. Surgery with a follow up of Radiation and maybe Chemo. Or, Radiation and Chemo to beat it. I chose the Surgery followed by 30 Radiation treatments, mainly because I wanted the tumor out of me. The Radiation is as you stated the standard after surgery. I didn't want to do this twice so I decided to hit it hard. 

I asked my Surgeon and Radiation Oncologist why I wasn't getting Chemo also. They stated that they wanted to keep it as a back-up in the event the cancer came back which it hasn't. That was 11 years ago. As "T" and rcaulder mentioned, a 2nd opinion wouldn't hurt at this time as the tumor has been removed. I wanted the Radiation to kill any stray cells, but as mentioned, there are side effects with that also.

Each person handles this differently, some have a really rough time of it and others get thru it easier. No one really escapes the discomfort of the build up of each treatment on top of the other. Again, this is what I did and it worked for me, one size does not fit all here. The decision is your Husband's and yours, as the Caregiver it will be rough on you too.

My Best to Both of You and Everyone Here

swopoe

2nd opinion

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.

 

CivilMatt

welcome

 

Jennifer Rekart,

 

Welcome to H&N forum, sorry you are here.

 

They confirmed cancer in the tonsils, base of the tongue and  a lymph node.

 

I would seek a (highly qualified) second opinion, now!  You want to get this as right as you can.

 

Good luck,

 

Matt

 

wmc

Welcome to the H&N Group

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

Barbaraek

I second getting a second opinion

We had instances when the med onc and the radiologist were not on the same page (mostly due to different interpretation of the literature and standard of care, not due to poor communication). Surgery was never an option for us due to the location of the tumor so we didn't have a third voice chiming in.

A second opinion will help clarify the different pathways for you. I agree that having a comprehensive cancer center with a tumor board look at your case is a good avenue to try. The tumor boards reach a consensus about what is best for each individual case.

While it often feels like you have to do something immediately, it's better to take the time to figure out the best thing for your particular circumstance. Wishing you all the best and a clear path to follow...

Barbara

ratface

It dosen't seem all that suspicious

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

ratface said:

It dosen't seem all that suspicious

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. 

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

wmc

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

I'm SCC no HPV and just surgery.

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

Kent Cass

swopoe said:

2nd opinion

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.