New to Forum with a question

KayH

Hi, My husband (50)was diagnosed 6 weeks ago with a BOT cancer spreading to nearby lymph node.  It all happened so very quickly with a slight flu feeling and a lump in the neck, after a biopsy of the lump with a cancer diagnosis the tumour was located on the base of his tongue, within a week he was in surgery having the tumour removed with a robotic arm, also the lymph node was removed with a neck disection.  He is in alot of pain, on a liquid diet and very grumpy.  We met with the radiation encologist yesturday who gave us alot of infomation, he has recommended 30 radiation treatments and as the lymph node had the cancer - excuse my wording - on the outside of the node he would also recommend chemotherapy as its possible the cancer cells could spread elsewhere thus giving him a better prognosis, my husband was quite insistent he does not want chemo, so my questions are - 

Has anyone just had radiation only after surgery?  Any feedback on recovery rate?  

Do i push him to have both, even if it causes greif between us?  He is very stubborn.

 

stevenpepe

Take the chemo. I was

Take the chemo. I was diagnosed with tongue cancer, left lateral. Had surgery and left neck dissection with one affected node. Had 33 rad treatments in my mouth and both sides of my neck. No chemo since cancer was small in lymph node. However, a tumor grew over 2cm during rads on right side of my neck

I had another neck dissection, and now getting another 35 rad treatments with chemo. Much better to have it done the first time. I may have avoided round 2 which has taken its toll on me. Not to mention a lot more time off from work. Chemo sucks but it is less debilitating than rads for me. Good luck.

Ladylacy

Your husband

Sorry to hear about your husband.  But as much as many people will disagree, it is your husband's choice as to his treatment.  Mine went thru 72 rounds of radiation and 13 rounds of chemo plus surgery and when the third round of chemo was offered he said no.  As much as I hated it, I went along with him because he was the one going thru the treatment which is brutual with long lasting side effects.  He knew, as well as I, what the outcome would be and still it was his choice and something that none of his doctors tried to talk him out of. 

I have always thought that if he had had surgery first, he would still be alive because there was no spread according to all the PET/CT scans he had done before treatment started.  But all this is hindsight.  Radiation and chemo are both rough with horrible side effects that last and even cause side effects  years down the road and after watching what my husband went thru for 5 years, I have always said I couldn't/wouldn't do it.  His was laryngeal cancer and then a secondary cancer developed a year after surgery in what is considered a rare spot.    We were told upfront that head and neck treatment is the roughest there is and there are many won't complete it. 

As hard as it, don't try and push your husband into something he doesn't want as long as he understands the consequences.   It is his choice not yours, doctors, family or friends.

Wishing you peace and comfort.

armana

My journey

I was diagnosed with stage 3 tonsil cancer positive for the HPV virus that had spread to one lymp node in Aug 2014. I had surgery to remove the tonsil and was advised against neck disection and chemo since the cancer was positive for the HPV virus and had only spread to one node. I finished 6 1/2 weeks of radiation Nov 21, 2014 and been cancer free since. If his cancer is not caused by the HPV virus, he must take both chemo and radiation, however, if positive for the virus, he could get by with radiation alone. Taking chemo has much severe side effects but will improve prognosis. It is a hard decison to make. 

You and your hubby will be in my prayers.

Arman

KB56

your hubby

Kay, my recommendation would be to take both chemo and radiation to give yourself the best shot of knocking this out the first time through.   It's hard enough to go through once, much less have to go back at it a second time.   Honestly my chemo was relatively easy compared to the radiation.  I had Erbitux, like many on the site, which has many less side effects than some other options.  As one of people said, whether or not it's HPV based or not could make a decision in his treatment.   At this point you want it to be HPV based as the cure rate is so high.

Good luck as you guys move down the path of treatment.  It's a rough road but light at the end of the tunnel.

All the best,

Keith

swopoe

My husband was diagnosed with

My husband was diagnosed with stage 1 tongue cancer in the fall of 2015. The cancer had not spread to any nodes.  He was 40 at time of diagnosis. He did surgery first to remove the tumor. That could have been the end of treatment. But he did radiation and chemo (cisplatin) anyway. His doctors wanted him to hit this as hard as possible now, and being young and otherwise in perfect health, they knew he could handle it. We didn't want to take any chances and wonder if we didn't do all that we could do. So we went for it. He had 6 weeks of rads and 6 chemo treatments. The chemo actually didn't add any additional side effects. And my husband was lucky in that he worked through all of his treatment. Bottom line is that he has had 4 clean scans since the end of treatment (and he doesn't have to be scanned again until the summer), and he is doing great. No regrets. Hit it hard now. Don't be wishing you had later on. That is my advice now.

JC F

Agree..

Should definitely go with the chemo to weaken the cancer cells and make them more susceptible to the radiation treatments. There are more long-term side-effects associated with the rads then the chemo to begin with. My BOT tumor was at stage 4 and too large to operate and the metastasis to three lymph nodes were also too large so went with the max chemo and rads. Chemo side effects are more immediate than the rad side effects with the nausea. Neuropathy which usually resolves itself in time to either nothing or some lesser residual effects and some hearing variance or loss with the platinum based chemos, mainly cisplatin and carboplatin to a lesser degree. Really should go all out off the bat, recurrence is no bueno...

tommyodavey

Doctors Advice

You didn't specify what type of BOT cancer your husband has so I'm going to assume it is Squamous Cell Carcinoma.  Or SCC as we call it here.  That particular type of oral cancer is approx 90% of all cases diagnosed.  My opinion is to take the advice of the professionals.  Considering they used TORS (transoral robotic system) on him, it tells me you found a very competent team of cancer doctors for your husband.

I too had a BOT tumor with an infected right lymph node that was easily seen on my neck.  Same as your husband, I had surgery via TORS and a month later they did the radical right neck dissection.  The difference was that my cancer was a rare one called Mucoepidermoid Carcinoma.  That type of cancer doesn't respond to chemo so I didn't have it.  Just surgery and radiation.  But if I had SCC like most all the BOT members here I'd get the chemo too.  It comes down to throwing as much as possible at the cancer to get rid of it.  You don't want it coming back so hit it with all the tools they are offering.

I'm sorry to hear of his cancer.  My pain was indescribable and I too lost a lot of weight because I just couldn't swallow anything for weeks.  Please make sure he's hydrated.  That put me back in the hospital after my first week.  It was just so painful to even try.

Welcome to the club no one wants to belong to.  Everyone here helped me keep my spirits up when my pain was at its worst.  See if you can get him to log in and chat.

Tom

Noellesmom

For what it is worth

Chemo is bad enough but not what it used to be. Radiation was much rougher on Jim.

Bonedigger66

New to group. REMISSION?

Hi everyone. I am new to the group and happy to have found it. I was diagnosed with laryngeal cancer December 16 2011. I had 35 radiation treatments and 5 weeeks of chemotherapy. I really felt that radiation was a lot worse than chemo ( almost all of my side effects were treated with the chemo, the only thing that helped with the radiation was Miles mixture ( this still one of my best friends). I will be considered in complete remission in Febuary. 

     I have so many fears about it coming back, I don"t think I have ever felt like it would not come back. I am a woman and I was 45 when I was diagnosed, these are not the normal things. I was really shocked when I got the when the ENT told me, he was almost 100% sure during the scope. I still remember the look on his face in the recovery room. It really was a trauma and 5 years later I am still shell shocked. That is why I am so glad to have found this group. It seems like it haunts me all of the time. I started to loose a lot of weight again, I have lost around 30 lbs sinice October. The same thing happened when I got cancer. I have some questions I hope you guys can help with. I am sorry I am talking so long.

Is it normal to wonder if you should have had the treatment? I have a real problem with it because of my depression. My Dad died from small cell lung cancer in August 2011 and my Mom really lost it.She started to hate me after this time and 16 months ago said some really horrible things to me. We have not talked since then . I really believe my whole relationship with her was a lie. This hurts so much, I know I am supposed to be grateful I am still alive but I am not. I am living my life waiting to die. I don't seem to get a long with anyone anymore.

Has anyone else had these feelings? I feel so ungrateful and I am sorry to the rest of you for feeling this way.

I feel like I have lost so much and I almost hope the cancer does come back, then I can concentrate on that pain and not the pain I feel right now.

I am so sorry for the pity party, but if anyone can tell me how long it takes for life to get better I would feel so much better.

Thank you.

Duggie88

Radiation/Chemo

I had stage 4 at the BOT and a few lymph nodes. I had a full neck disection because my surgeon didn't think he could get it all with robotic. Afterwards he said I didn't need chemo but recommended 6 weeks of radiation. He was fairly sure he got it all but stated with radiation the chances were 98% the radiation will take care of anything he didn't get. I took the radiation without hesitation.

Life will get worse before it gets better (no sense in sugar coating it) You got to remember you are both in this battle to win and anything that I was told would up my chances I jumped on. I would go in with both guns a blazing and take the chemo. Last thing he wants to say a year down the road is I shoulda did the chemo.

 

Good Luck

      Jeff

CivilMatt

welcome

KayH,

Welcome to the H&N forum, where most of us had the chance to look behind the 3 doors       9surgery, chemo & rads) and each of us had to decide which one’s?

There are some H&N members who just had rads and are fine, others who went that way had a different outcome.

If you are looking for odds, I would go with full assault on the cancer.  I did not want to barely kill it, I wanted to stomp it out of existence.

Do whatever feels right, if your doctor(s) are good they won’t let you make a mistake, but watch for eye rolls.

Matt

phrannie51

His node was "extracapsulated"....

that means the cancer cells are free to go where they want.  Myself?  I'f hit it with everything they've got...the whole arsenal.... this first time around!  This cancer can be sneaky....who knows where's it's set up camp already.  If the Drs. want to do the chemo....trust them!!  They know more than hubby....he may not "want" to do the chemo, but I'll bet he's done a number of things in 50 years that he didn't want to do, but was damn glad he did them once it was over. 

Good sense trumps stubborness.  You can tell him I said so... ....My husband is much like yours...cranky, grumpy....and oh so stubborn!!!

p

PS....The cisplatin chemo did not make me horribly ill....I didn't feel good for 3 or 4 days, then I had 2 weeks of being pretty much ok until the next treatment. 

danc1962

I would do what your doctor

I would do what your doctor has said is best. I did everything my surgeon, radiation oncology and chemotherapy oncologist told me to do. My biopsy was September 1, 2016. I was diagnosed with SCC laryngeal a week later. One week later I had as peg tube installed and my dental work done. One more week and I was doing my first chemo (of six @ one per week) on Friday. The following Monday I began the first of 35 radiation treatments ( I had already been fitted for the mask and done the PET scan). Last treatment was November 16, 2016. On December 15, my surgeon said the tumor was gone. He went in with the camera. No residual tumor. I did a CT scan January 3 with due to verify. I am eating, talking, and went back to work on November 30. I feel like my doctors were the best and smartest ever! Do what they say. It is a very hectic two months but you have to go to war. You will win. They know what they are doing if you have a good one and chemo definitely did not hurt my treatment plan. It isn't that bad anyway. I didn't lose my hair. My emotions were kind of off and there was a metallic taste in my mouth. Mine cleared up quickly after the last chemo therapy. I was stage three. My tumor was a T3. I was fortunate that the radiation was done with a Toma Thermal machine. It is state of the art and has minimal collateral damage to the tissues etc around the targeted area. It rotates around you continuously and the beam is shaped to the target as it is moving. Oh it still gets rough, but I healed very fast after the treatments were completed. Again, listen to your radiologist too. Good luck. Get this fixed. God Bless you!  Dan