Doc giving me treatment option - which would you choose?

Hello - I was diagnosed with squamous cell carcinoma on Aug 10th.  My PET scan shows one lymph node which MIGHT have cancer, but might not.  I've had second opinions, multiple radiologists look at it, no one can be sure.  My doctor is giving me the option to choose between these two options:

Radiation and Chemo

Pro: IF the cancer has spread to a lymph node, I'm saving myself unnecessary surgery

Cons: I'm in my early 40's, so in 10-20 years I'm going to be facing some unpleasant side effects in bladder/bowel damage as the radiation will continue to cause damage over the years.

Lapraoscopic surgery, where lymph nodes are checked first and if clear of cancer, proceed with radical hysterectomy (if not clear they stop and proceed to radiation/chemo)

Pro: If the cancer hasn't spread to a lymph node, I just saved myself radiation

Cons: 5-10% of the time their pathology of the lymph node during surgery is wrong.  So they could say it's all clear, do the surgery, and a week later I find out it's not and have to go through chemo and radiation anyway, which doesn't improve my chance of survival and does more damage than was necessary to my body.

I'd really like to hear from those who have gone through one or the other treatment, to see what they would choose if this was their choice.  Thank you for your help!

Hi slicknic,

I'm not one to give advice as you're the only one who can decide what's right for you.

I didn't have the option of hysterectomy so have no experience to share regarding that.

I did have alot of chemo and radiation though. Treatment was a breeze for me and am now 2 years out with no major concerns. I had a stent put in my ureter due to scar tissue and that has been the worst of it.

Good luck with your decision and treatment ❤

Thanks Boundie - I really appreciate you sharing your experience.  My doc tends to like to describe worst case scenarios for everything, so he made it all sound really scary, and I am having a hard time choosing.  I'm leaning towards surgery, because then I'd know for sure if the cancer has spread or not.  But I can't imagine how I'd feel if I went through that tough surgery, then a week later learned it was all for nothing, and now I need to start chemo/radiation.

I would definitely go for second option. I had surgery first and the lymph nodes were affected so I went on to have chemo radiation..However I then went on to develop a second cancer  caused by the radiation itself. If there is a chance you can avoid radiation, even if there is no guarantee then ,I would go for it. The symptoms from radiation can be drastic. I am actually quite relieved that I have a colostomy now from the second cancer.

Good luck and it is your decision, I'm just adding another thought.

Thank you for sharing your experience Petesdragon.  I was leaning towards going with the surgery, but I've now learned that there's a 50-60% chance I'll still need chemo/radiation afterwards.  It would just be so devastating and so terrible for my body to have to do the radical hysterectomy and then go stright to chemo and radiation - I don't know if I could make it through all that.  I'm pretty thin, have a sensitive stomach and lose weight really easily.  I'm worried it will be too much for me.  It's such a hard choice because if I gamble on surgery I win big if I do win, but the loss is drastic if I lose.

Such difficult middling odds. I feel for you. Only you can make the decision but the hysterectomy is a pretty straightforward recovery and so is the chemo actually. However the radiotherapy can have effects that last forever. I found the gastrointestinal effects worsened considerably over time. The diarrhoea can be very troublesome for some. How old are you? 

If it's of any help, I was diagnosed in April and know I am totally unfit. First of all they thought I had 2b adenocarcinoma and just thought I'd never make it through the treatment. I was mentally a wreck. Later it was re staged to 1b so they recommended a Laproscopic radical hysterectomy, my initial thoughts were I wouldn't make it through anesthetic. I told my consultant I was unfit and my fears, I also had a heart murmur. He arranged lots of other tests and I was deemed fit for surgery. I was so scared, but came through it not much worse than anyone fit person would do. I was told if no lymph involvement I wouldn't need radiotherapy. Luckily there wasn't. 

Personally, I'd have the op first and radio later if needed, that's just me though.

All I can say is, it's your choice and tell you from a fellow worrier about treatments. I wish you the very best whatever you choose xx

I'm 42, which is why my doc wanted to give me a shot at avoiding radiation, because he said I'm young enough that the side effects would hit me while I still should be feeling good and enjoying life.

That is great to hear Helen7!  I think I've decided to take a gamble and go with surgery.  They're going to check my lymph nodes first, and not proceed if they're not clear.  But at least I'm giving myself a chance to avoid radiation.  I'm very happy to hear you feel the surgery recovery hasn't been too terrible.  

If you are worried about the surgery, I'd be more than happy to tell you about me, how scared I was and how I came through it okay. Please feel free to message me xx

I am glad you are taking the gamble slicnick. My sister and I both had cervical cancer at the same time and she got away without the radiotherapy and made a very straight forward recovery without all the awful symptoms I had. She is alive and well. It's worth a shot! It may not work out but you will have tried. Good luck!

Hi slicknic :-)

Just jumping on the bandwagon here. I was given no choice in the matter, at age 50 I was given a rad hyst and then just a few months later had 5 chemo, 25 radio and 2 brachy. There was never a lymph node involved but my team wanted the whole belt and braces. I've been lucky, I've had no side effects and no recurrence. For a while I was bitter about unnecessary surgery since I went on to have all the other treatments anyway. Now I think I'm simply grateful to be shot of it.

Be lucky! :-)