Husband just diagnosed with SCC - Base of tongue

candersblue
candersblue Member Posts: 1
in Head and Neck Cancer #1
Wow, my head is spinning! My husband (55) had a lump on the left side of his throat for about two months. General MD thought it was a sinus infection and put him on antibiotics for several weeks. Finally, we got into an ENT. He suggested a biopsy which we did last Thursday. We met with the ENT doctor today and he has confirmed it as SCC - base of the tongue. I've spent the day reading and am overwhelmed. Tomorrow, we have our first meeting with a radiologist. We are also scheduled for a PT scan and chest x-ray to see if there is any other cancer anywhere else. Then, those findings will go to a board of doctors that will review it and meet with us to propose treatment. We have no 'stage' classification as of yet. I guess the big question for us is whether to have treatment with the local hospital and doctors or bite the big one and go to Stanford - about 30 minutes away. Anyone have any thoughts? Plus, I'm now reading about having teeth pulled, feeding tubes, etc. We own our own business - has anyone worked while all of this was going on?

Comments

  • JUDYV5
    JUDYV5 Member Posts: 392
    #2
    Some have
    Some have worked through the treatment. I suggest you find a hospital that has dealt with this type of cancer before. You want access to the lastest treatments and technologies.
  • adventurebob
    adventurebob Member Posts: 691
    #3
    Welcome
    Hi Candersblue,
    I'm sorry to read about your husband's cancer. I'm always saddened to welcome a new person to this board yet you being here is going to be a good thing.
    Your head is spinning because you are in the whirlwind of cancer diagnosis and the ensuing rush by the docs to get treatment started. It sounds like more is going to be revealed and then you'll probably have more questions that can be answered here.
    Not sure where you live but it's close to where I live in Marin. I got a second opinion at Stanford from Dr. Pinto. Stanford is a great cancer treatment center. Dr. Pinto is an emotionless, insensitive well qualified oncologist. After he told me I had 1-3 years to live regardless of treatment I elected to have my treatment at the Marin Cancer Institute. They were a bit more optimistic and have been wonderful for both chemo and radiation. I also got a 3rd opinion from UCSF. Good docs there also. You'll figure out which doc you can work with and where you want to receive treatment as you go along. Just make sure it's a doc you can work with for a year+ and that you trust. The experiences you have at the center during this stage are indicative of the experiences you will have during treatment. A doc that's always late for your appointments and doesn't have time for questions or seems irritated by them is not going to be fun to work with in the heat of treatment.
    As for work; I've taken the time off because I could. I could have worked some but it would have been horrible. If you can, do take the time off. This is a true 911. Call in all the favors you can and surround yourselves with family and friends. Tap the savings and retirement if need be. Getting through treatment and getting rid of cancer is now the only priority. Nothing else will matter if that isn't done.
    Know this; you will get through this. You won't do it alone. When it's over the pain and horror of it will fade and you will realize how strong you are.
    Come here as often as you need to. Someone is always listening. My best to you and your husband,

    Bob
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Very Similar Discovery
    First, welcome to the forum...sorry about the situation.

    I also went through a similar scenario with discovering I had throat cancer. That was almost 2 1/2 years ago.....

    You have found a great resource here, the people are awesome also.

    If you read my BIO, it tells of my diagnosis and treatment regime. The very short scenario;

    STG III Tonsil cancer,STG III, HPV+ and a tumor for a secondary site.

    Nine weeks of Chemo in three weeks cycles (Cisplatin, Taxotere and 5FU via a pump through the implanted power port.

    Seven weeks of concurrent weekly chemo (Carboplatin) and 35 daily rads.

    All PET/CT have been clean since treatment ended in Jun 2009 (diagnosed in Jan 2009)....

    Treatment is rough, but doable....

    Stay positive, take your lumps, ask questions, get a lot of rest, and stay hydrated....

    I worked from home during most of the time, returned full time Sep 2009.

    Thoughts and Prayers,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    I would go to which ever
    I would go to which ever hospital is best and has the most experience treating your cancer in your area. My closest hospital is 30 miles away. Takes me like 45 minutes to get there. So, I'm not sure how 30 minutes is biting the bullet. :) I am out in the boonies so even the closest store is 10 miles away. Lol

    Some people have worked while during treatment. Depends on the job. I couldn't. They wanted me to still work a minimum of 48 hrs a week, close 3 nights a week, and work every Friday, Saturday, and Monday for at least 8 hrs. That was impossible for me to do, and I was way too sick and my job was way too physical.

    I took my FMLA leave. Then when I was still out, my disability insurance kicked in. IMO I would focus on my health and devote all my energy to getting thru treatment and getting my health back. At first I felt inappropriate guilt about not working, but I got over it. My health, and trying to keep myself nourished became my new job.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #6
    SCC Base of Tongue Also
    Hi and welcome. Yeah, it will probably take a while for your head to stop spinning.

    No surgery for me, but 7 weeks of rads and 3 concurrent chemo(cistplatin) treatments.

    I would opt for the hospital that is best equipped and experienced in dealing with your particular cancer. Also you need to feel comfortable with and have confidence in your med team.

    I didn't work during treatment, mainly because of the distance between where I worked and the hospital I was treated at. I kept on top of things by internet, but that's not the same as physically going in to work every day. Looking back, I probably would have been ok working until about the half-way point in treatment. There are a few here that did manage to work all the way through treatment, some because they really had no choice.

    Stay positive and stay strong. My best to you and your husband. Cheers

    Jimbo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Hi Candersblue

    If I was you I would get away from any small town doc and hospitals go to Stanford or to one of any of the Major Cancer institutions that really know what they are doing. I did my treatment at a small town place thinking that all of these are the same anyway and I was big time wrong. I was the first case of NPC they ever seen but they did not tell me that, they just radiated the hell out of me and my Cancer came back 11 months later. They did radiation on me again the second time and again it came back a year later. I now go to MD Anderson 325mile away but I am still alive and wish I would have done MD Anderson the first time.

    Take care and welcome to the family here on CSN
    Hondo
  • Slowlane
    Slowlane Member Posts: 4
    #8
    About pulling the lower teeth
    I had all mine pulled about 4 weeks prior to treatment. They weren't the best in the world so it was not a hard decision. After all I have read it was a great decision. If hubby has great teeth then you might want to seek further opinions. SCC BOT Stage 4 - finished treatment Nov 2010. Hang in there = you can beat this!!!!!!
  • NW DINO
    NW DINO Member Posts: 31
    #9
    SCC - Base Of Tongue
    So sorry to hear of your husband's recent dx. Stay positive as you both can get through the next couple tough months of treatment after which the healing process starts. I would highly reccomend Stanford for treatment. My personal history is remarkably similar! I too had a lump on the right side of my throat for a couple months. My personal MD ordered a CT scan which had negative results. I too was told it was a possible sinus infection & given antibotics and sinus spray for treatment. My dermatologist (four months later)actually reccomended that I see an ENT who immediately did a biopsy of the lump. The results were "inconclusive" so he removed the lump the following week. That biopsy confirmed SCC on September 7, 2010. My primary source was unknown until I had a PET done that fortunately found the "primary" as BOT. Your husband should visit the dentist for an intesive cleaning & checkup. I am 58 years old with a mouthful of cavities from eating to many Milky Ways as a kid. I have taken care of my teeth with regular cleanings & using a Waterpik (I strongly reccomend the waterpik). I did get a crown at that time on a questionable tooth. My last radiation treatment was December 15th & I recieved the great news of a clear PET scan on March 24, 2011! Everyone reacts to treatment differently. I did have a peg feeding tube & it turned out to be the right decision. Initially I told my doctor I would be fine & would be able to eat & drink without one. I needed it after 5 weeks of treatment. They are very easy to use & actually quite convienent - using gravity with a stand feeder as opposed to the syringe. My diet was three cans of Ensure a day with 5 bottles of Arrowhead water throughout the day. I actually was able to start eating solid foods the day after Xmas - then got the peg tube removed only three weeks after that. I have improved tremendously in just three months & feeling better every week! I did take off a month from work in December. The radiation really can knock out your energy level & stamina. Do not worry though - it will come back. Along with the taste buds that will go away during treatment. I am fortunate that my health keeps improving in the battle! One more piece of advice is that SCC BOT has a high incidence of HPV 16+ - there have been numerous recent studies done regarding this & is worth discussing with your Oncologist. My thoughts & prayers are with you as I know first hand your husband can beat this!
  • Lena Rose
    Lena Rose Member Posts: 73
    #10
    Hi Candersblue,
    I was where you are a year ago. My 54 year old husband had a lump on his neck and the doctor thought it was nothing. It wasn't until a few months later he was was diagnosed with stage 3 BOT SCC HPV+. Our heads were spinning-I was waking up in the middle of the night in a panic, thinking this could not be happening! This site was very helpful-there is so much information on here that we didn't get from doctors. My husband did not get a neck dissection. He had 35 rads and 7 weeks of chemo. He didn't need any teeth pulled. He did get a feeding tube, which sounds a lot scarier than it actually is. After the 2nd week of rads it was very difficult for him to swallow. My advice to you is to definitely get another opinion-30 minutes is not far away at all. Go to a hospital that has dealt with this before. We went 4 hours away to Dana Farber for a second opinion and the doctor there was truly a lifesaver. My husband stopped working about 2 weeks after treatment started and didn't go back to work for about 5 months. If your husband is HPV+ the odds are in his favor that he will respond very well to treatment. I think it's important for you to know that my husband finished treatment in June and is doing well. He had his feeding tube removed in February and is slowing gaining weight, his energy is good, and his eating is slow but getting better all the time. The next few months will be difficult, but you will get through them. There is light on the other side. There are so many helpful people here who will answer whatever questions you have. Stay strong.
  • greg from pa
    greg from pa Member Posts: 86
    #11
    Hi my name is Greg. I was
    Hi my name is Greg. I was diagnosed with scc on the base of tounge with lymph node mets last april. my symptoms were the same. lump on the side of the neck.I have been cancer free since november of 2010.This can be beat!I had 35 rad sessions with concurrent chemo. I personally did not work during treatment.(I have a physically demanding job). The radiation can have some uncomfortable side effects but it sure is worth the results. The chemo took the neck lump away almost right away.good luck and my prayers are with you ! Greg
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #12
    Base of tongue here... Sierra Foothills of CA... Stanford fan!
    I'm roughly four hours away from Stanford, but wanted to consult with the best of the best... that would be Dr. Michael J. Kaplan, Chief, Division of Head & Neck Surgery-Oncology, Department of Otolaryngology-Head & Neck Surgery, Stanford Cancer Center. I took my PET-CT results to Dr. Kaplan at Stanford, and let him take it forward to the Stanford Cancer Center Tumor Board. I was diagnosed as Stage 4, with local mets to lymph nodes on both sides of my neck. No distal mets to lungs or anywhere else. My largest lymph node was 3 cm in diameter, and the tumor on my tongue was roughly 2 cm.

    The good news was... Dr. Kaplan told me that the treatment for what I had was NOT rocket science, and he was comfortable that the Sonora Regional Medical Center's new Cancer Center could adequately treat me.

    I've known others from up here in the foothills that Dr. Kaplan recommended be treated at Stanford, so I really trust the man's judgement. I am now one year out from treatment, and Dr. Kaplan is doing all of my follow up work. I trust him with my life.

    Best wishes in the many decisions you have ahead of you. If nothing else, take your results to Dr. Kaplan, for a second opinion. He's done this for others on this message board.

    Deb

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