Cervical Cancer, Just had a RH to remove all reproductive organs & lymph nodes

norfolkjan

I'm new here.  I think this is the club nobody wants to join. (but I'm still glad to be here.)

 

I was diagnosed with invasive cervical cancer very suddenly.  They thought I had too thick of an endometrial lining, but it turned out that I had no lining -- just layer upon layer of squamous cell carncinoma, through out my cervix and uterus.  We did a pelvic MRI and a PETscan, but you see, I have had hip replacements since I was in my 20s, and have lots of leftover surgeical metal from childhood pelvic and femural osteotomies, so all the metal caused wave-disruptions in both the MRI and the PETscan.  The MRI said I had a 2.5cm tumor, and the PETscan said a 3.5cm tumor.   My oncologist felt having a radical hysterectomy, along with taking many of the pelvic lymph  nodes near the disruption (to use to check for cancer that wasn't showing up on either imaging scan) as well as part of the abdominal wall and pelvic wall was the best plan.  Because of the positioning of the surgical metal and my uterus, she also bypassed my bladder, and pinned it over to one side, to get a region that we also couldn't see clearly.  Ten days after the surgery, she removed the bypass, and praise be, my bladder is working now.

 

I went for my follow-up visit, and felt things were going fine, when the other shoe dropped.  They got all the cervical and uterine cancer, but the tumor was much larger than anticipated. It was well over 4cm.  She said if she had known, she wouldn't have done the surgery at all, but there is no other way she could have known.   She said the tumor was deep in my tissues, toward the back.  She said that my lymph nodes were clear, but that she could see cancer in the little tubes that link lymph nodes to lymph nodes, especially close to my bladder.   Now, she is recommending radiation and simultaneous chemo.  Nine weeks radiation (45 sessions) and 6 weeks of chemo.  

 

Here is my dilemma.  Having that much radiation after a RH usually leads to softened bones, especially in the pelvic region.  There is a huge chance that if my bones soften, my hip replacements, which have helped me walk for the past 25 years, will loosen and become unusable.  I have fought since I was a child to remain upright, to walk, and I lead a very independent life.  (I've had 19 reconstructive surgeries on my hips so far.) 

 

I've outlived my family, and had just moved when all this happened, so I don't have many friends here yet.  If I do chemo and radiation, I'll be on my own.  Is that even possible?  After the RH, I spent a week in the hospital and a week and a half in a nursing home, and it was just as horrible as you would imagine.  My roommate at the hospital had a stroke, was not coherant and spent most of her time smearing feces on herself and then trying to climb into bed with me!   

 

My roommate at the nursing home was "difficult" -- when I checked-out I found out she has been moved 6 times already due to complaints in that nursing home, and that was her 11th nursing home!  I won't go into details because she obviously had mental health issues, but I'm sure you can imagine.  Twice she almost caused me to fall, and I was terrified -- so I checked out weeks early.   When I checked-in at 5pm the first evening, I was told they didn't get my drug orders "in time" and couldn't provide me with any pain meds!  I went 18 hours after a RH with no pain meds (I was supposed to have them every 4 hours), and it took 2 1/2 days for them to get my blood pressure meds, which caused my blood pressure to go a bit bonkers.  I will never forget how bad that felt.  Recovering in a skilled nursing center is not an option I see as viable at this point.

 

So now, I'm really having second thoughts about doing radiation and chemo.  I need more information.  What percentage of people who have pre-existing, established bilateral replacements suffer from bone softening, and if so, what percentage go on to lose that replacement?   No one can tell me.  What will life be like for me as  a single, independent woman if I can no longer stand or walk on my own?  I don't have the upper body strength to transfer myself (I have arthritis.)  Would life being dependent on strangers as caregivers be a life worth living?

 

I need to know how to find details and statistics that could give me an idea of what I'm facing.  Maybe it would be better to just let things happen, and enjoy a couple of good, mobile years, than to do radiation and chemo and risk so much.  

 

If anyone has any suggestions on how to make such a decisions, I'd appreciate hearing them.   Thanks.  -Norfolkjan

NoTimeForCancer

nofolkjan, this site has been

nofolkjan, this site has been quite lately as you can see.  I am checking in from the Uterine chat because I think all the gyn women should watch out for eachother.  And while I will welcome you to visit the Uterine chat, if you are looking for Cervical cancer there are a few other sites that are more active as well.  

The decision you are asking about is difficult.  Definitly you have contributing factors that make your decision even more of a challenge.  

One of the members on the Uterine board has pinned some of the most popular threads on chemo and radiation at the top of the board - please stop over and check them out.