Adenocarcinoma late diagnosis

grace_of_god said:

No CT Scan for me!

So I called my doc's office with 2 questions and got a no go on having a CT scan prior to surgery.  Simply stated "they don't do them".   My other question was about lymph nodes and they said they won't know about that till they get in there.  My surgeon is a big cheese, head of stuff so I'm trusting his judgement and taking this to mean that he doesn't find it necessary.  I'm very comfortable with him and rhe hospital plus his experience so I'm going to accept their game plan.  I admit I'm not feeling like insisting on them changing their routine for me.  I admit to feeling beat down and depressed.  I do have support though and I'm booked with a counselor for 1 week post surgery.

 

I only had a CT before surgery because i had lost 30 pounds. I don't think a pre-op CT is in the guidelines unless there are special reasons to get one. On the other hand, as the patient it's hard to understand how it's not standard. If it helps, CT is likely to pick up some random abnormality and generate some worry and testing that maybe wasn't really necessary. For example, mine picked up a renal cyst that I now have to get a special follow up CT on this fall.

Apparently, depending on where you live depends on whether you get a pre-op CT scan or not.  When I was diagnosed, I asked my ob/gyn if there were any tests we could do in my hometown before I headed 45 minutes away to the gyn onc at the University of Iowa.  They said that  Uof I would want a CT scan.  So, that's what I did, the local ob/gyn ordered a CT scan and it was sent up to my gyn onc before my initial visit with him.  Interesting to see how different doctors do different things in different orders.

I'm concerned about you being told "they don't do them" when it comes to pre-op CT's and they won't know about removing lymph nodes  for testing until they're in there. I had both an MRI and PET scan pre-op so that my surgeon would have an idea going in how far he needed to go taking things out for pathology. It just seems odd that they'd have a blanket policy of not doing some testing to have the information they need to do the surgery and it seems really important in your circumstances since you've had symptoms of something brewing for as long as you've had. I really think a second opinion would be a good idea before you proceed.

My gyn onc met with me initially, then he did my surgery, then he met with me for the results and the "plan".  I went to the University of Iowa Gyn Oncologists.  After that, I would see him in the halls, they pass the patients to ARNP's who do the exam's from that point on unless something happens.  The ARNP's told me that the plan is: from the end of chemo, that I would be seen every 3 months for 2 years, then I would graduate to every 6 months for 3 years. I would have a pap test once a year and a chest x-ray once a year. If I had symptoms at any point, they wouldn't hesitate to do a CT scan at any time.  I did have a couple of those because of a cough that had no reason and some shortness of breath and pelvic pain unexplained.  Everything came out fine each time the CT scan was done.   At 5 years, the UofI considers me cured.  At that point, I can go back to my regular gyn or stay with the onc. ARNP.  I am sticking with my ARNP as we have a very good relationship and she is very caring and concscious about my concerns and situations.  It still amazes me what different doctors or establishments and their protocols entail.  We have to be our own advocates for sure.

One thing I have learned from this site is that the protocol is different in many places. I have had so many CT scans that I am on a first name basis with the entire staff there  The one I had after my last chemo saved my life as I had 3 blood clots in my lungs and many more in legs!!! Scared the staff so bad they walked me to oncology and started Lovenox shots right then!!  Like someone said, get a doctor you feel comfotable with and ask all the questions you need to ask. My onc/gyn learned that I was one who wanted to know everything and once she knew that we got on great. I also was very clear that we needed to move fast. Thankfully I have sons and inlaws in medicine and they also advocated for me. Now am feeling really good after my second round for a recurrence.  Hang in there! 

grace_of_god said:

Hi ladies!  Well here I am 2

Hi ladies!  Well here I am 2 days post op and while it was pretty tough the first night (really messed that up not getting scripts ahead of time)  so I was extremely uncomforable.  Plus even if I'd had them I was not even able to keep water down,  so don't think I'd have kept a pill down.  I started throwing up a few hours after finishing the prep and never stopped till 24 hours post surgery in spite of an ear patch and meds in the IV.  The robotic assisted surgery took about 4 hours and they did take lymph nodes (not sure how many) and my recovery room was rough.  I have fibromyalgia and am bipolar type 2.  My pain register is way up high and I was very wimpy.  The nurses were really yelling at me and I'm sound sensitive so that was freaking me out.   If I'd known how hard of a time I was going to have the first night I would have stayed till next day... they did offer me the choice.  I have had really bad pain while peeing but that is a little easier today.  I took advice from post on here to get a belly band and am glad to have it!  It makes turning over or getting up and down a lot easier.  Post op report to family was that he thought he had gotten everything and we'll see what the reports say at the follow up visit.  I'm glad to have found this support system here with others on similar trips...  it was a gold mine of info while I waited for surgery (that wait was an emotional rollercoaster) and I read and reread a lot of posts.  So all in all I'm glad I did not have to have the big incision of regular surgery.  Only other thing I just remembered is I had a really bad headache up till this morning and I'm guessing that was from the head down position they put you in for this robitic surgery.  I was told my face and eyes could be very puffy.  I didn't puff up but I figure the headache was from that pressure.  Better today! 

Rest and take care of yourself.  The meds after surgery do help.  I wasn't going to take them and only take tylenol - that didn't last long.  It probably would have been o.k. with tylenol but Percoset was like a miracle drug.  My face was really really puffy after surgery too.  I also gained 14 lbs between the time I left home and returned home.  It was a little disheartening.  However, it came off fast and at my 3 week checkup I had lost 13 lbs from my first visit to the GYN/ONC.  I was also a little depressed which was disturbing to me because I normally have a sunny disposition but that has passed too!  

Give yourself time to heal and I will be praying for you!!!

Good luck!

grace_of_god said:

"fired!"

Hey EZ!  I got a good laugh at your being fired after two years!  So you say you only made it through 3 chemos... can you explain?

I really had a hard time with the chemo.  I think it was because I was overdosed.  Chemo is based on weight but I am super sensitive to medication (a quarter of a Percoset knocked me out). After the second one, they couldn't control the side effects. I was so week I could barely walk and the nausea was horrible. After the third one, my liver started to fail, I lost control of my bladder and bowels, my eyesight was effected, my finger and toenails fell off, my skin, especially on my left side, started to peal and I could only walk a few steps without falling. 

My GP thought I had a small stroke with some bleeding in my brain when my blood pressure went to 220/140.  The day before my fourth scheduled chemo, we stopped it.  My GP and I both believed another chemo could be fatal.  She pointed out to me that this chemo was preventative; not curative and it was HER job to keep me alive while my oncologist/gynecologist's job was to kill the cancer. I agreed with her 100%. 

That was two and a half years ago.  So far, knock on wood, the UPSC (Stage II, Grade 3) has not returned.  I still have severe neuropathy in my feet which is especially painful at night, my left foot still drops and I have trouble walking on uneven surfaces, my eyesight constantly changes (I've had to change glasses six times in the last couple of years) and my finger and toenails are only partially attached. On a lighter note, my left eyebrow never grew back while my right eyelashes keep growing and I have to trim them.  I had Carboplatin and Taxotere. The Taxotere is now known to affect hair regrowth.

But, I'm still alive!  I went through physical and occupational therapy.  I can read again and although I still have memory problems, it has gotten much better as time has gone by.  The other night, I walked almost half a mile without a walker or cane. I see an acupressurist every other week which has helped the neuropathy.  The feeling has come back in both my hands except for the index finger and thumb on my right hand but at least I can write and type again.  Prior to cancer, I took one pill a day - levothyroxine for my thyroid that I had taken since I was seven.  Now I take 14 (which is down from 18) every day.  

We sold our business last August and retired to Florida.  Just being able to relax and enjoy this beautiful weather has made life so much better.

Love,

Eldri