1 year FU visit....is this normal?

[teacher49]

Well, I'm 1 year out from finishing all treatment. End of FOLFOX 6 11/12 rounds last year. Monday FU visit with ONC and labs were all good.....CEA was 0.4 and all liver enzymes were good. No abdominal pain or blockage. But I told the ONC that I had some concerns about sciatic nerve pain in my right leg. She wasn't at all concerned and referred me back to primary care doc.

Anyone have any experience with one-sided leg pain? I don't have it all the time......and it gets better once I'm up and walking.....but then if I sit for too long after exertion.......my right leg is really lame for a few minutes and I can't support myself until the pain goes away. I wondered if pelvic surgery and subsequent pelvic floor dysfunction could have organs pressing on sciatic nerve. ONC said that was not her area.....and probably just age related and should see GYN.

I'll start from step one again and go back to my NP.

[Mastan]

Hi,

I have some numbness on the inner thigh on the side from which the primary tumor was removed. I noticed this almost immediately after surgery. No sciatica howver. In my case the numbness is slight and has no practical consequence.

Mark

[Voxx66]

As someone with back related right leg neuropathy, I empathize. Where exactly on the leg is the pain?

[Badass]

After radiation and chemo for rectal cancer, I had buttock and leg pain which has finally subsided.

[weisssoccermom]

I've learned a lot about hip/sciatic pain along the way - things that weren't told to me ever. Last year (and just recently again) I went to PT for right sided hip/leg pain. Keep in mind that when we talk about our hip, it isn't the same thing as our pelvic bone that we too often refer to as our 'hip'. At any rate, both my GP and my PT inform me that yes, it is a known side effect of radiation to cause problems in the hip/upper leg/sciatic area. I inquired as to why only one side and it seems to be predominately on the right side. (This is based on information from 6+ years on this board and another devoted to anal/rectal cancer patients - similar treatments that include radiation). The explanation given to me is very simple. The vast majority of people are right handed with a dominant right side. For these people, we tend to put more pressure, more exertion, etc. on our RIGHT side. Radiation causes adhesions (females know this with vaginal stenosis) and those adhesions and 'tougher' tissue happen in the hip area as well. In my case, I guess I didn't realize it was happening. I was still able to walk fine but.....when I started to realize that I couldn't do the same things with my right hip/leg that I could do with my left leg - well, that's when all the explanations from the PT started to make sense. Now, I'm in a tough situation. It will be difficult at best to break up years of scar tissue/adhesions that have formed from the radiation treatments. There are exercises that I need to do (and try to remember) to hopefully make the situation a little better. As I said, it's difficult to remember to do them because for the most part, I don't realize that there are issues....and I guess after all these years of compensating....I just don't think about them anymore.

Just know that yes, this pain can come and go for YEARS afterwards and don't fall into the trap that I did and just think that certain everyday movements that I just couldn't do were just part of getting older. Dang I wish I had paid more attention.
Jaynee

[teacher49]

Thanks for all your replies:

The pain really isn't hip pain but it curls around my right buttock and right thigh, down to my knee and shin bone and aches like a toothache sometimes. That is why I think it is nerve pain. I don't doubt that I have adhesions from radiation and surgery. Yah, the docs really don't tell you the side effects of radiation upfront.

I can walk but just not too quick to straighten up and begin walking after sitting AND if I've been sitting too long.....I might just have to readjust all my leg muscles for 2 minutes before trying to start out on my right leg.

Like I said, ONC wasn't too concerned....so I guess I'll try joining the YMCA nearby and swim this winter.....and if it gets worse maybe they'll give me a steroid shot in my hip area.

[Voxx66]

It sounds like it could be an L4 (fourth Lumbar) problem. As I have discovered however everyone is different. The nerve pain charts that doctors hand out are the average patient. After surgery and tests for example my nerves map into a somewhat different pattern than what is the standard representation. It is entirely possible to have the lumbar spine be the source of leg pain and yet have no discernible pain in your back btw. But I certainly have both. If it is a disk problem (mine was a vertebrae problem but that is uncommon) then you'll have some options but from my own experience, I seriously caution people to keep surgery as a last resort. It could be something totally different of course but when I hear sciatic pain I immediately think of the spine. Steroids epidurals really help me so far as relief is concerned btw.

[weisssoccermom]

Please google piriformis syndrome. BTW - I don't know if you are like me but my idea of where 'hip' pain would be was NOT the same as the medical profession. I don't know...I guess I thought hip pain was more up by your pelvic bone....boy how stupid could I be!
My PT has been a wealth of information about piriformis syndrome, sciatic and how it all probably relates to radiation issues.

[Voxx66]

I think of the hip as being centered around the hip joint with the femur ball socket thingee but I thought when described it usually extended up to include the pelvic bone. Or maybe that is the pelvis which I suppose is a different thing. Anatomy was never my strong suit though as I have suffered the wear and tear of existence, I have been forced to learn more about it ha.

[weisssoccermom]

I guess I also thought of the hip as extending up to the pelvic bone but boy was I wrong....at least when they said I had hip bursitis and they talked about the IT band and where it joined the bones, etc....well, that wasn't the area that the medical professionals refer to as the hip. My PT told me that because we talk about the hip measurement as being up around the pelvic bone that most people tend to think of that as part of the hip joint (area). Again, was I wrong on that account.

[sbrainbolt]

I have had sciatica on and off for years due to sponsylolisthesis. I see a pain management Dr. for treatment when the pain is bad. I have had epidural steroid injections, facet nerve blocks and most recently a procedure where they put a probe to the nerve causing all the pain and heat it up basically burning the nerve ending. Oh. My. God! This was the most effective treatment for my pain and is like a miracle for me.

I would recommend seeing a pain management Doc. (You will need an MRI first though.) My point to all of this is you don't have to just "live with the pain." A good pain management Dr. can come up with a plan tailored for you.

Hope you get some relief!
Susan

[Voxx66]

A bit ot but I had spondylolisthesis as well - 5th lumbar. Mine was progressing so surgery was not optional. I do have a pain doc but atm this cancer matter is absorbing my full attention. I haven't had the nerve heating procedure you describe but will research it- assuming my cancer gets under control. (my fusion surgery did not go well btw)

[David Losh]

My neuropathy from FolFox has kind of settled onto my left side, both foot, and hand. My foot is especially sensitive, and now has a pain under the ball of my foot closer to my little toe.

I'm thinking of using Cymbalta, but don't like the side effects to much so I'm hoping it clears up on it's own, which I've been told it can do.