Anal Cancer and side effects from chemo and radiation

[Rhonda]

May 2017 I was diagnosed with anal cancer, because I was have cancer mapping done every 6 months they caught it quickly.  I commenced chemo and radiation in June 2017 for every day for 6 weeks (radiation) and two courses of chemo.  On completion of these courses I found 3 weks after I finished I started collasping.  My legs would not hold me up and the nerve pain I was experiencing was excruiating.   within a couple  of weeks I was unable to walk without crutches and then even then would fall over for no reason.  I had a spinal laminectomony in October which relieved some nerve pain but not all and I was and still am on a high dosage pills.  After the spinal op I came out with a dropped foot which has not remedied itself. I have had physio three times a week 2 hour sessions since last year and I am starting to take my first steps to date I have had over 30 falls.  If I knew I would not walk after the cancer treatment I may have looked at other treatments.   Has anyone else had this expereince I am feeling isolated and no one can give me a diagnosis on how long or if I will get better.  I was a very independent person before now I cannot drive and I have to rely on my husband or someone else to be taken to doctors appointments etc.  My GP diagnosed me straight away as he has seen a lot of cases like this but I have only heard of one other.  Has anyone else experienced this type of side effects from chemo and radiation?

[Maggiemoo]

Hi Rhonda

I am new on this site.. I hope your are feeling better these days. I want to share my experience with you cause it may help... I am 68 years old,  retired nurse. I had  chemo/ radiation treatment  post surgery for uterine cancer 2018.

I recently had sudden onset hip pain Nov. 2019.. CT scan revealed "insufficient fractures' caused by the Radiation that  I received in 2018.. The Orthopedic Specialist I am seeing described my pelvic bones as rotting, decaying from the effects of Radiation treatments. I cant walk any distance now  due to the pain in my pelvis.. The Specialist informed me it is going to get much worse and it has. I am now at risk of falling and need to use a walking stick..  I am waiting for surgery to stabilize my pelvis. They are making titanium rods to fix int my pelvic bone.   I am anxious about the surgery as comes with more risks..  I guess your pain and discomfort is caused by the same.. I am interested how you are doing now, and has the pain settled..

[Rhonda]

Hi Maggie, It has taken a lot of work but I am upright I can't really say walking because I don't classify it as walking.  I wear a brace on my left leg for my dropped foot my right foot has improved but I still have falls. Last one broken wrist, cracked rib and torn tendon in shoulder.  I have realised now I will never be normal again.  I have pushed my body to its limits with physio and we also put a swimming pool in which was a terrific help  with physio.  But I have learned you can push and wish but your body does not re cover from the beating of cancer. I was very fit and watch what I ate this disease is heritary in our family. I also has melanoma about 7 years ago again heritary in our family. I am still on Palexia, endep etc for nerve pain. I have tried going off my meds and have halved the dosage but can't do without them too painful. I wish you luck with your journey.

[Iyana271]

Hi, I'm sorry to hear about your situation! It must be really hard for you after knowing that your condition may get worse. 

Well, there are some risks of surgery but I think it is better to go through the surgery as there are more chances that you can get back to normal. If your doctors are suggesting surgery to deal with the current situation then you must go for it. But if you're still worried about surgery risks then before getting surgery you should discuss with your doctor and make sure that he is expert in this type of surgery and the success rate of surgery done by him is more. 

Take care & best of luck!

[Maggiemoo]

Hi Rhonda

Sorry to hear you are still battling with your mobility and pain control. 

I do feel your nerve pain is possible related to what I am experiencing now "insufficient fractures" of your pelvis from the radiation you received..  I  received 28 sessions of radiation to whole of my pelvis over period of 6 weeks.  It was 4 sessions per week. The Oncologist said I received the maximum dose..  This plan was in place to to treat lymph glands in my leg groins as well as the pelvic area cause I had no lymph glands removed during my total  hysterectomy surgery. 

It is good your cancer has not come back.  Do you still need regular checks?  I do.  

[Maggiemoo]

Hi Lyana

Thank you for your message of hope and encouragement.. I am on the waiting list for elective surgery but I guess now that will be delayed due to our World pandemic which does take first preference.. I have done little research on this surgery  as can't find anyone who has had this procedure to stabilize the pelvis.   

My Specialist is a Professor and informs me I wont find any research as he is the only one who is performing this surgery, he has done a few ..  They have been a success, recovery with less pain and good mobility..

[Rhonda]

I have checks and a biopsy taken every 6 months. I had radiation 5 Days a weeks for 6 weeks.  My body was terribly burnt after 2 weeks and it also caused gastro.  Even now I can't be far from a toilet.  I tried to find other cases contacted my oncologist etc no-one wanted to know.  No record of this ever happening in their view but I found 3 women who had the same problem about the same time I did. My GP diagnosed me and my neurologist did the same.  I have sensory neuropathy no feeling below the waist. If I had my time again I would not take their w oird but get a second opinion and seek all info I can.  But at this stage you are so scared and you don't know what to do accept the doctors d i agnosis that this is the way to go or not. I can never have chemo or radiation again because of the damage it did to my body.  So if I get cancer again and they can't operate They can do n o thing for me.  

[Iyana271]

Well, that's good news if the surgeries done by your doctor were successful. It is actually a plus point for you, so don't worry too much and think positively. I hope that your surgery will be a great success and hope this current situation of world pandemic will be over soon so that you can go further for your treatment.

Good luck!

[Maggiemoo]

Hi Rhonda

Gee you have had a doing with Radiotherapy , burns after 2 weeks, and than continued for 6 weeks must have been horrendous for you..  the sensory neuropathy of your legs must have been frightening as well as very painful , and than battling ongoing bowel issues.. You certainly have a lot to deal with..

the damage to your nerves is shocking  and I hope will improve in time.  I was screened for peripheral neuropathy , tingling to my hands and feet during treatment , it did appear at one stage and they reduced the dose .  My  bone weakness didn't show until 15 months after treatment but now is ongoing pain.  Radiation is very ruthless in its targeting of  cancer cells and in the process destroys good cells, I guess we are the minority whom have gross adverse effects..  Yah, I agree I too would not  have Radiotherapy again if my cancer comes back.. It has debilitated me enough.. take care. may I say give cannabis oil a go as it is proven to reduce nerve pain. It did work for me during my chemotherapy treatment when I had ongoing nerve pain, once I started on the oils the pain settled down and I could sleep.  Hope you can get some relief soon.   

[Yorkiemomof3]

@Rhonda 

I've just been dx with stage II SCC anal CA in July 2021. I'm told it was caught early and is about the size of a walnut. (Surgeon said that's small)

The course of treatment they have laid out for me is 5 weeks of chemo via a port.

My two chemo drugs will be delivered as follows; 5fu- dosed 5 days a week & 2 doses of mitomycin (1 @ the beginning & 1 @ the end). I will also be receiving targeted radiation 5 days a week during the same time frame, Mon-Fri, for 5-6 weeks. 

Would you mind sharing what stage, type & regime you received for your CA? I've done a lot of research and seen a specialized colorectal surgeon, oncologist, and radiologist. All of these people have come highly recommended from other people in healthcare and former patients. After hearing your story, I'm extremely interested in discovering more and doing due diligence to make the best decision. 

I'm so sorry for your struggles, and my heart and best wishes & prayers go out to you sincerely. 

I'm scheduled to have my radiation mold made on Tuesday and have a port placed very soon. Although the surgery date has not been set yet, they are supposed to call Tuesday with that date & want to begin my chemo ASAP. I would love to hear back from you asap as I would not hesitate to halt everything and get a 2nd opinion elsewhere. 

I've also been told by all 3 of these Dr's that this chemo with anal CA typically does not cause hair loss.

I know this should be the last thing on my mind, but I don't want to wait until I'm losing clumps of hair to order a nice wig. I don't know if these Dr's are trying to keep patient confidence and spirits up or if this is true that with this particular regime, you truly don't lose your hair?? If you have any insight on that, please let me know to make some informed decisions. 

I don't want to be stupid and go against a great Dr's advice, but then again, I think we have all learned that we, the patients, MUST now be our own advocates. (Gone are the days people should follow Dr's advice like sheep!!)

Thank you for any info, wisdom, & advice you may be able to share.

Kind Regards,

Melissa