Please need advice, help, questions about tonsil cancer...feel very alone and scared

susieg1023

I really need advice and guidance from anyone who has or had tonsil cancer. I am 38 year female, never smoked, not HPV positive, and rarely drink...and I am currently 5 months pregnant.

I had my left tonsil removed last week after being inflammed and non responsive to antibiotics. Bioposy indicaticated Squamous Cell Carcinoma. Luckily enough it seems as though I caught it very early...stage 1.

I meet with the radiologist tomorrow and would like to know what I can expect, what questions I should ask? Are feeding tubes always necessary? Is it possible to work through radiation?

I feel so scared and alone...any help would be greatly appreciated

Kimba1505

Lots of help here.
Susie g.
Read my post entitled "newly diagnosed...need advice". It is about my partner (53) who was diagnosed on April 13th with left tonsil squamous cell carcinoma, stage 4. It is full of good informaiton...and remember you are Stage 1...so you are in a far far better place treatment wise. You will read what these people, with more a more advanced disease do and can do. YOur pregnancy presents a different dimension. If there is one thing that I think can make all the difference in the world is get to a good hospital with good doctors and current treatments. Even if it means traveling further.
My best to you,
Kim

Scambuster

Stage 1
Hi Susie,

I was diagnosed with Stage 1 SCC Cancer of the left Tonsil early August last year (2009). I had a PET CT Scan, which is used to trace and locate the cancer, determine where the primary cancer is, and see if it has spread at all. With SCC of the tonsil, if it does spread, it will usually go to the lymph nodes closest to the tonsil, and radiate out from there in the lymphatic system.

As you are pregnant, you probably could not have the Scan as they use radioactive Glucose, which is attracted by the cancer and so it 'lights up' the image in the scan.

I have no idea if you are OK to get the Radiation while pregnant and would assume Chemo would be out of the question. If that is the case, try not to worry too much because my research shows the Radiation to have the most effect, and apparently much more so than most Chemo treatments. Also, there is a good chance they removed the SCC already - though without a scan that would be hard to be 100%, hence they would be considering RT to ensure it is all gone.

So onto Radiotherapy. You need to ask if you can have IMRT (Intensity Modulated Radiotherapy) which is less invasive and more selective as to where it hits you, thus reducing collateral damage to the healthy cells in and around where the tumor was. IMRT is a preferred treatment if available.

Before you start RT, you will be fitted with a special mask which is moulded to be very snug over your face and head, so they can 'line you up' and shoot the RT beams at the target area without you moving. I imagine they will do some type of scan in order to determine exactly where they will irradiate. This data is also used when fitting the mask. Your RO (Radiation Oncologist) will know all the ins and outs of that. You can search this site for good info on 'The Mask', as there are something helpful in going through the sessions. your cancer centre will have 'Techies' who help you get fitted and look after you each session. Bring them cookies !

Once you have your mask, you are ready to go. Treatments vary but assume each session to be from 20-30 minutes. With IMRT, you usually have 2 sessions per day, 5 days a week for between 5-7 weeks. They usually say 5 weeks but then give you 7.

The treatments themselves are painless. The nasty effects usually do not start till about week three. From then, you start to get the bad sore throat, sore mouth, mouth ulcers, heavy build up of mucus, loss of taste and sometimes nausea (though nausea is more likely when done with Chemo).

Some of us could not eat due to the throat pain so we got a PEG (Feeding tube) which is usually inserted just above your belly button. I doubt you would get one, but they can give you one down through the nose if you need one. This is to get a liquid food supplement into you for the duration, and after the RT is finished till you can resume eating. We have all had trouble eating throughout treatment, some got through without the tube, others tried and had to get one in midway through so its a bit hard to say how you will cope. You may also get a much lighter dosage being pregnant.

Overall it is pretty horrible but you can and will get through it. Some have worked right through treatment but I gather most of us not. I was knocked down nearly 6 months. We all react differently but best to prepare for some time off.

I will sign out now as have dumped a fair bit on your here already. Others will contribute their stories and help you along. Get on here anytime Susie as they are great bunch of survivors here who will give you a lot of valuable information, much of which the Doctors may not. Remember the Doctors will be your main people during treatment, but remember us as you can arm yourself with information from here and take it with you to ask your Doctors. Carry a note book and write down all the questions to want to ask your doctors.

You are lucky that you caught your early so things should be fine Susie. you will get through it.

Stay with the fight and let us know how you are doing.
Scambuster

Skiffin16

Susie
First off welcome here, a lot of have gone through what you are going through.

Also, out of curiousity, did the test the biopsy tissue for HPV? You mentioned that you aren't HPV+, but that they just removed your tonsils. Reason I ask is that you listed all of the very exact symtoms that I had and my biopsy did show it being HPV derived, but it took several weeks to get those results back. They identified the cancer as SCC at the time the tonsils were removed, but the confirmation on HPV took several weeks at an outside lab.

One thing you'll here is that everyone is differrent, different bodies, attitudes, states of health, pain thresholds, treatments, recovery, etc....

Scam has some excellent and very good info in his postings. Also like he said being pregnant will more than likely rule out or minimalize a lot of the drugs.

More than likely you'll be in the mix of how most of our cancer similar to yours was treated. They range from having or not having or a combination of any of these treatements; neck dissections, heavy cycles of chemo, concurrent chemo/radiation, radiation, PEG tubes, and ports.

Some of us have a lead medical professional such as an ENT in my case that oversees and manages my treatment, and doctors all of mine being at the same Cancer Center. Others have a different group of facitilities/professionals on their team.

As you mentioned radiation, I presume that is possible in your future. One thing to consider is what tyoe of radiation will it be, how strong of a dose, IMRT (a newer type of more precise radiation).

Your taste buds and salivary glands will more than likely be damaged. Sometimes it's minimal, usually it's something that is lasting, but may improve over a long period, several months to a year or longer.

You might want to ask about Amifostine. It's a drug that I had injected into my abdomen everyday (35 days) just prior to the radiation. It's believed to help with reliefing you from the mucous or thick phlegm that you might get from the radiation. It's also thought to help in saving a portion of your salivary glands over the course of your treatment.

There's also tons of experience on the chemo side of treatments here and everything inbetween.

Just a brief on my treatment, you can read my bio for all of my specifics....

I had SCC STG III HPV derived tonsil cancer with one lymphnode involved. I was treated for nine weeks (three cycle) with Cisplaten, Taxotere and 5FU, then seven weeks with weekly Carboplaten and daily radiation and the Amifostine injections.

That all started three days after I was diagnosed last January 5th 2009, ending around the middle of June 2009.

To date, no signs of the cancer remaining and everything is going good....

Stay on here and you are not alone, you have all of us here to help you in your journey.

Good Luck, God Bless,
John

stevenl

Very Early
Hi Susie,

Welcome here. There are a lot of good people and good advice here. Hopefully they caught it early enough where things aren't too far along. But if you are going to have chemo and radiation a feeding tube would most likely be your friend. It has saved my life. But, talk to your oncologist about it and make your decision based on what the doc tells you. I did not want one, and was scared of it, but I made up my mind to use it.

If it has not spread this is a blessing. Some can work through rads depending on what they do, but mostly it is just not feasible. I was able to drive myself to treatment, but the fatigue from treatment kept me from working. Hang in there Susie, I am only 3 weeks out of treatment and I feel pretty good. I was stage 4,right tonsil primary, with lymph nodes involved.

Best,
Steve

delnative

stevenl said:

Very Early
Hi Susie,

Welcome here. There are a lot of good people and good advice here. Hopefully they caught it early enough where things aren't too far along. But if you are going to have chemo and radiation a feeding tube would most likely be your friend. It has saved my life. But, talk to your oncologist about it and make your decision based on what the doc tells you. I did not want one, and was scared of it, but I made up my mind to use it.

If it has not spread this is a blessing. Some can work through rads depending on what they do, but mostly it is just not feasible. I was able to drive myself to treatment, but the fatigue from treatment kept me from working. Hang in there Susie, I am only 3 weeks out of treatment and I feel pretty good. I was stage 4,right tonsil primary, with lymph nodes involved.

Best,
Steve

What a bad break
Having cancer is bad enough, but to have it when you're pregnant can't be good. You've got two lives to consider, not just one.
I would think and hope that it being Stage I would mean that surgery and rads would be sufficient. I had Stage III tonsil cancer, and I was told chemo was an option that would increase my chances by about 20 percent. I chose to have it.
Please keep us informed.

--Jim in Delaware

staceya

delnative said:

What a bad break
Having cancer is bad enough, but to have it when you're pregnant can't be good. You've got two lives to consider, not just one.
I would think and hope that it being Stage I would mean that surgery and rads would be sufficient. I had Stage III tonsil cancer, and I was told chemo was an option that would increase my chances by about 20 percent. I chose to have it.
Please keep us informed.

--Jim in Delaware

You are in my thoughts and
You are in my thoughts and prayers!!
This has got to be really hard when you are pregnant.
Do you have any support?
I would especially think that you will need a peg tube as you are feeding 2.
stacey

Skiffin16

delnative said:

What a bad break
Having cancer is bad enough, but to have it when you're pregnant can't be good. You've got two lives to consider, not just one.
I would think and hope that it being Stage I would mean that surgery and rads would be sufficient. I had Stage III tonsil cancer, and I was told chemo was an option that would increase my chances by about 20 percent. I chose to have it.
Please keep us informed.

--Jim in Delaware

Alternatives
Jim has an excellent point, maybe being in the early stages they can opt to treat you with radiation and or surgery at least for now and possibly save any chemo if needed for after you have your child....

sweetblood22

Skiffin16 said:

Alternatives
Jim has an excellent point, maybe being in the early stages they can opt to treat you with radiation and or surgery at least for now and possibly save any chemo if needed for after you have your child....

I just wanted to take a
I just wanted to take a moment to let you know that you have found a great source of info and support here. I am sorry that you have to be dealing with this, let alone having to worry about being pregnant on top of that. I have to idea how they will treat you, but I do know that finding it at stage one has to be a blessing. I survived SCC HNC with unknown primary stage 4. I am also a Fanconis Anemia patient, and I cannot have chemo. I was treated with radiation only.

I had a peg tube put in which I would have died without. I was diagnosed 12-08 had a modified radical neck disection 1-09. Teeth pulled 2-09. Peg placed 3-09. Then started radiation 4-06-09 and finished 5-15-09. I got two other opinions between disection and start of radiation. It has been a very hard road, I won't lie to you. I still have major problems eating and swallowing due to radiation damage. I have had two dialations since radiation ended. I still can barely swallow. I am not telling you this to scare you, but show you the worst case senario. I am still kicking and still fighting.

My very best to you.

Hondo

Hi Susieg


I too welcome you here to CSN, I am sorry to hear you have this stuff but you are on a site with friends who all understand what you are going through. I guess my first question to the doctor is, how is all of this going to affect the baby and can you make it to the baby full term before starting treatment. I would also get your babies doctor involve with any treatment suggested by your ENT or Oncal doctors.

You are going to have some very hard decisions to make and I pray that God will give you the strength you need in making the right ones.

D Lewis

Ditto
Ditto to everything everyone has alread said here. I would also add that some of these cancers are fairly slow growing. It may be possible that, given that you are only Stage I, and already five months pregnant, there may be no great harm in delaying treatment until after the birth of your child. Ask your doctors. ALL of your doctors.

Best of luck to you.

Deb