New With Questions

vickyd123

Hi Eveyone,

My husband was just diagnosed with SCC. He first noticed a lump on the side of his neck. They did a biopsy and it came back with SCC. He then had a PET scan which the doc said didn't really show much. He had a quadroscopy and was told that they didn't see anything visually except very small irregularities to the Base of his tongue. They graded him as a T-1 with lymph node on same side. The surgeon said no surgery, radiation and chemo should do it. Everything I have read here seems to indicate neck surgery. This doctor is suppose to be one of the best and he told my husband they don't do surgery anymore unless they absolutely have to because this cancer has such good response to treatment. I don't know why but that makes me nervous after reading how so many people had the surgery. I just want him to have the best chance for recovery. Also he has never smoked/drank, chewed tobacco or any other of the things that are suppose to cause this cancer. I know it happens anyway. He was negative for HPP.

 

He also has it in his head that he's going to work through the treatments which I'm not discouraging him about but I think he may be in for a bit of a shock. From everything I've read that doesn't seem likely. I'm scared to death for him and he just seems very matter of fact about it all. I wonder if it's denial or maybe he just doesn't want to show how scared he is.

 

Also, with the chemo, how long do you have to sit there with the IV? I guess it all depends on the chemo they give him? I've heard anywhere from an hour to 6 hours? And I have read that the actual radiation treatment from start to finish is only about 15 minutes? That seems so fast. Is that true? He goes for his first consultation this Monday.

 

Thank you for any advice.

 Vicky

CivilMatt

welcome

 

Vicky,

 

Welcome to the H&N forum, I am sorry you (and your husband) find yourself here.

 

It sounds like they caught it early and after investigation, opted  for no surgery.  If you have a good team, they most likely made the correct decision.  If you question that, then do not hesitate to get a second opinion.

 

He may want to make room for adjustments to his work timeline, but then again, some folks do manage.

 

In general, chemo takes a few hours to all afternoon or all day and even longer, ,depending on the chemo.  These are good questions for the doctor or nurse.

 

It is scary, but once you get started it is over before you know it.  Your husband will do fine.

 

Best,

 

Matt

 

Check out the superthread

 

wmc

WElcome to the H&N Group of the CSN

Welcome to the group, and sorry you need to be here. You can get this also from acid reflex and sometimes, you just do for no known reason. The why doesn't really matter, what does matter is how you deal with this, you fight. Everyone is differant and the treatment is set up for that person and all underlying conditions. With the PET/CT not showing much is a good thing. Being T1, is also a very good thing as well. You cought it early. I would agree that your husband doesn't want you to know he is scared. I was scared and I knew I was very sick for awhile. When you hear the word Cancer, your world just changed. You might want a second opion, but it might be the same treatment. I don't recomend just going to a local Dr, unless this is something he does all the time. I went to a major hospital that has a tumor board where all the doctors see you that day then they all decide how to treat this case. It's not always surgery. Mine was surgery only do to my other conditions I never had Chemo or Radiation, so i'll let the others answer your questions on that. 

Him wanting to continuing to work is good, but this is a very bumppy road he is going down and will knock the S*&t out of him most likely. Some have it worse than others. At the top of the form page there is a Superthread [read only] that is great and explaines many questions.  http://csn.cancer.org/node/261072  That is a link to it.

This can be very hard on the Caregiver/Loved ones. You feel there is something you should do but can't. You will even feel his pain worse then he will at times just because you care. He gets all the attention, but you have the worry. So you need to remember to take care of yourself as well. Your no good to anyone if you are sick and rundown, so take care of yourself too. Remember if you have a bad day just write it down, as it does help. You're not alone in this, you will get lots of support here and were open 24/7. Will add you both my prayer list.

Bill

Kritter

Advice

Vicky.... keep reading and listening to the people on here and they will help you as the have helped me and countless others. You will get great advice. I am still in treatment, but the thing I would like to add.. is if your hubby will be wearing a mask, find out of he will need meds to help keep him calm. Everyone is different, reacts different, and the caretaker is as important as the patient. So take care of yourself as well. 

My chemo was 180 minutes give or take, and my radiation is around 15 minutes. Takes me longer to get in mask than the treatment. Best of wishes and remember the people on this site are wonderful and full of info. 

Prayers and Hugs.. Kritter 

eulerphi

Hang in there!

Hi Vicky,

 

My husband was diagnosed with MEC in October this year. He also never smoked/drank, ate healthy foods and was very fit. He is, in fact, continuing to train for his marathon during his radiation treatments now. We were all so shocked to learn that he has cancer, given that he used to hardly ever fall sick. But I guess that is the nature of the beast and it could affect anybody.

 

Regarding your treatment plan, from what I've read, SCC is considered more responsive to Radiation and chemotherapy. However, I would also recommend getting a second opinion from a hospital with tumor board. It may be that the doctor thought clear margins from surgery would not be possible in your husband's case and rad/chemo would be needed anyway.

 

I would recommend planning (or keeping that option open) for time off from work. My husband just completed 3 weeks of radiation treatment and so far he is doing reasonably okay. He is taking time off, but could be working if he really wanted to. It is just that it is very inconvenient with daily treatments - commute time, wait time, treatment time all add up. Treatment time for him is 30 minutes ( he has 4 different positions they target).

 

Take care!

vickyd123

Thank You

 

 

 

Thanks for the replies everyone, I really appreciate it. My husband was referred to this doctor because he is one of the best head and neck cancer surgeons in this area. Cancer of the head and neck is all he deals. My husband has now been handed over to three oncologists. Medical, radiation and chemo. I "think" that's how it was explained. It's still all very confusing. We will definitely find out more on Monday. All I know for sure is the surgeon told my husband that he has two options at this point. Surgery, which he pretty much scared my husband out of, followed by radiation and chemo, or just the radiation and chemo. He told my husband that the surgery was a "morbid" surgery and that it was up to him but we got the feeling that he didn't recommend it. He then said that my husband was lucky that he got a choice because the next person he had to call didn't have the option to not have the surgery. He repeated several times that the treatment success rate would be the same with or without the surgery. It seemed like a no brainer.

I do know that the Cross cancer hospital in Edmonton Alberta is considered one of the best in Canada. That's where we will be going on Monday. We will be dealing with oncologists there so we may get a better explanation.....I hope.

 

Thank you all VERY much for all the words of wisdom.

 Vicky

 

Duggie88

What Matt said

I agree with Matt. Also, keep in mind that they develop new theories all the time and your husbands case isn't the first treated without surgery, there are others on here that didn't have it. Hoefully they will chime in.

We all react differently but coming from a person who gets scared going to the dentist, my cancer treatment didn't scare me near as much. I just wanted it gone, and gone like yesterday. That being said you will become the caregiver and his cheif support groupy. Just keep a watchfull eye on his day to day activities. I worked at home quite a bit because the radiation kicked my butt quite a bit but we all need some type of normalcy to get through treatment which totally disrupts your life.

As you will see there are many fine folks on this site who will share their stories and experiences to help your husband's run a bit more smoothly. I won't sugarcoat it, the road can be bumpy, very bumpy at times, but if I can do it anybody can.

      Jeff

MrsBD

Surgery or Not

I was diagnosed with Stage 4 base of tongue cancer. Like your husband, I had none of the risk factors.No surgery was even suggested for me. The oncologists said chemo and radiation would give me a 90% chance of a cure. Chemos vary, but mine was given once a week for 8 weeks. The first session took about three hours, the rest about two. Sometimes blood testing needs to be done before the chemo can be given which can increase the time. Radiation was done daily during this time. The first session took about two hours because they take measurements and make a  mesh mask to hold the head in place during treatment. The other sessions took 15 minutes under the machine, plus changing and waiting time. Your husband will get very tired as treatment goes on and will have a sore mouth and other side effects. Everything can be managed with help from your cancer team. Nutrition is really important, so start (or continue) eating healthy now. It will get harder to eat as time goes on. I did not have a feeding tube, but many others have. Best wishes to you. Just think, three months from now, you'll be finished with treatment!

phrannie51

First....welcome to this forum....

the people here held my hand and led through treatment a little less than 3 years ago.....they are super stars!!

I found out I had cancer via a lump in the neck also.  I did not have surgery, either....just chemo and rads.  The ENT told me they would do surgery on the nodes if they still showed cancerous after the other treatments were done, and THEN they'd do surgery if they had to.  The nodes have been fine since....I finished treatment 2 1/2 years ago.  I had the 3 big chemo's (once every 3 weeks) instead of the weekly, smaller doses.....I don't think it makes much difference in the outcome....tho the smaller doses are easier on the body.  With the large dose, chemo days were a full 8 hours long.  Rads were just about 15 minutes long....

p

PS....as Kritter mentioned about the mask.....I did take an Ativan everyday before rads....and that helped keep me calm.  Some folks don't need anything, and the only draw back to taking medicine is I had to get a ride to and from Rads.

donfoo

Lots to be scared about and thankful for

Welcome to CSN. Learning of having cancer knocks everyone for a loop, so every emotion possible is fair play until things become a bit more clear, the waiting games are over, a specific treatment plan is decided, and the treatment gets underway. Meanwhile, it is early days and I encourage you getting as educated as quickly as possible to make the decisions on more than just emotion and hunches. OCF is totally science based and all material is vetted by a board of medical experts. There is the superthread here but it is much less organized and not vetted by any medical professionals.

Be very thankful for an early diagnosis on an early stage cancer. This generally means more treatment options, less severe side effects, and better outcomes. After being here for two years, I feel surgery is something to consider if it is an option. Radiation and chemo are very toxic treatments and are usually the cause of most long term side effects. Surgery is quicker to recover from and has less side effects long term. Be open to all options and make as informed a decision as you can. Good luck, Don

 

 

Sailor123

vickyd123 said:

Thank You

 

 

 

Thanks for the replies everyone, I really appreciate it. My husband was referred to this doctor because he is one of the best head and neck cancer surgeons in this area. Cancer of the head and neck is all he deals. My husband has now been handed over to three oncologists. Medical, radiation and chemo. I "think" that's how it was explained. It's still all very confusing. We will definitely find out more on Monday. All I know for sure is the surgeon told my husband that he has two options at this point. Surgery, which he pretty much scared my husband out of, followed by radiation and chemo, or just the radiation and chemo. He told my husband that the surgery was a "morbid" surgery and that it was up to him but we got the feeling that he didn't recommend it. He then said that my husband was lucky that he got a choice because the next person he had to call didn't have the option to not have the surgery. He repeated several times that the treatment success rate would be the same with or without the surgery. It seemed like a no brainer.

I do know that the Cross cancer hospital in Edmonton Alberta is considered one of the best in Canada. That's where we will be going on Monday. We will be dealing with oncologists there so we may get a better explanation.....I hope.

 

Thank you all VERY much for all the words of wisdom.

 Vicky

 

Hi Vicky:
I read your

Hi Vicky:

I read your concerns and they are all the same questions I had.  You will get all of your answers on Monday.

I had chemo and radiation but no surgery.  Thank god for that.  I felt very fortunate not to need surgery.  My chemo was only given twice.  High dose cisplatin.  I had two overnight stays in the hospital for chemo.  They spent six hours putting fluids in an IV and then the chemo itself was about an hour long, I think.  Then another few hours of fluids to flush it out.  The chemo wasn't a really big deal for me, and in large part I think it was all the fluids before and after along with some low dose steroids to keep me from feeling too sick.  I feel I got very good care.

You have a lot to take in right now but I will add a couple of things.  I really wish I hadn't taken all 32 radiation treatments.  I think they overdose us all to make good and sure they get it and radiation has unpleasant side effects.  Just something to think about.  I wish i'd stopped at about 25.  Remember i'm not a doctor this is just what I would have done differently if I could go back.

Secondly, herbs can be very helpful in keeping the healthy cells healthy during treatment.  Something to read about.  I got a feeding tube and it was a lifesaver for me.  The whole time I went through treatment I lost only nine pounds and no lean muscle mass.  I think you said your husband was a runner.  I am too.  I put many HEALTHY things in my feeding tube which made a lot of difference in my wellness along with my comeback.  The doctors would have had me living on Ensure for months, but formula made in a lab somewhere just didn't seem like a wise food substitute when my body was especially needy.  I've only finished treatment seven months ago but looking forward to getting my fitness back.  First I have to find my motivation again.

Anyway, bless you both.  Feel free to message me if I can be of service.

KB56

No surgery

Vicky, mine started in might right tonsil but moved to the lymph nodes before we caught it and it was stage 4 but still all in the right side of my neck.  I only had chemo and radiation as well, no surgery other than a tonsillectomy and that was during the biopsy.  the doctor's thought it would be very responsive to the radiation and chemo.  18 months post treatment and so far so good. 

Matt and I had the same chemo (Erbitux) and it took me a couple of hours every Friday for 7 weeks.   The first one seemed to be the longest and it was about 3 hours.  

 

Good luck,

keith