Adenocarcinoma late diagnosis
Comments
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I only had a CT beforegrace_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.
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Pre-surgical CT is standardgrace_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.
Pre-surgical CT is standard for some grades of cancer. They knew mine was a grade 3 going in, so I had the CT scan. Since yours is a grade 2, perhaps that the justification for not doing one...but I still think it should be done for anything above a grade 1. Glad your doc is a big cheese and glad you're comfortable with him but, honestly, those were reasonable questions for you to ask. Best wishes, B
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CT after diagnosis
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.
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CT before surgery
I was scheduled to have robotic surgery and was asked to get a CT scan before surgery, which I had at a different hospital, the one where I worked. My GYN/onc., a very busy man, didn't look at it until the day of surgery. He came into the room where I was being prepped and told me that he couldn't do robotic surgery because my cancer had spread too far. I had it in both ovaries, the omentum, and the small intestine. I had printed out a copy of my report at work and had noticed that it also said I had gallstones. My sister, an LPN, came with me to the hospital and suggested to my GYN/onc that my gallbladder should also be removed during surgery so that I didn't have to have a second surgery for that. My GYN/onc. agreed. He said he'd try to get a general surgeon to help out, and if he couldn't get help, he'd do it himself. Fortunately, a general surgeon worked on the same floor as he did and was able to come and do that. He also removed my appendix, for good measure. If I hadn't had the CT scan, God knows how much of my cancer would have been found, and I probably would have had to have the gallbladder surgery at another time. I think your doctor should order one.
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Maybe a 2nd opinion?
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.
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No CT scan prior to surgery
No CT scan prior to surgery for me either. My surgeon also did not remove any lymph nodes because he said they all looked good - nothing suspicious. After surgery, I was diagnosed with Stage II, Grade 3 UPSC. I did have a CT scan after surgery along with a chest x-ray. Last fall, he also "fired" me as a patient since I am no longer in active treatment, two years had gone by without a recurrence and he was confident that he got it all. He told me I should have my follow-ups every six months with my GP. If my GP didn't feel competent to do it, then find a gynecologist who did. I only made it through three chemos too.
Who knows what the future will bring? I sure don't!
Love,
Eldri
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Wow Eldri
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.
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No CTMAbound said:Maybe a 2nd opinion?
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.
Thanks for your response MA. I'd like to know why they have this routine and am going to ask! I am too late for scheduling a second onpinion at this point as surgery is coming up in less than a week now. And my surgery was already delayed once when I was cancelled a few weeks ago on 4/26. I'm pretty uncomfortable... lot of pain that comes and goes so I'm anxious to go asap. I'm also an MH patient and have been having a hard time holding on mentally since this last delay. Plus it's supposedly the best guy in the area and it is at the hospital I prefer (about an hour away) which all seemed like a miracle coming together. So I can't see not going ahead now! I feel as if I am kind of waving a flag of surrender to let go and let God at this point. Yikes! Kind of like jumping off a high diving board.
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"fired!"EZLiving66 said:No CT scan prior to surgery
No CT scan prior to surgery for me either. My surgeon also did not remove any lymph nodes because he said they all looked good - nothing suspicious. After surgery, I was diagnosed with Stage II, Grade 3 UPSC. I did have a CT scan after surgery along with a chest x-ray. Last fall, he also "fired" me as a patient since I am no longer in active treatment, two years had gone by without a recurrence and he was confident that he got it all. He told me I should have my follow-ups every six months with my GP. If my GP didn't feel competent to do it, then find a gynecologist who did. I only made it through three chemos too.
Who knows what the future will bring? I sure don't!
Love,
Eldri
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?
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Good Place to begrace_of_god said:No CT
Thanks for your response MA. I'd like to know why they have this routine and am going to ask! I am too late for scheduling a second onpinion at this point as surgery is coming up in less than a week now. And my surgery was already delayed once when I was cancelled a few weeks ago on 4/26. I'm pretty uncomfortable... lot of pain that comes and goes so I'm anxious to go asap. I'm also an MH patient and have been having a hard time holding on mentally since this last delay. Plus it's supposedly the best guy in the area and it is at the hospital I prefer (about an hour away) which all seemed like a miracle coming together. So I can't see not going ahead now! I feel as if I am kind of waving a flag of surrender to let go and let God at this point. Yikes! Kind of like jumping off a high diving board.
In God's hands with a doctor you feel comfortable with is a good place to be CT or no CT. I understand your need to get this surgery behind you to get some pain relief!
As you can see from other's comments: doctors seem to differ in practice and philosophy from each other. Though we share a common fight, I don't think any two of us have had the exact same experience with what we go through battling the beast.
The other thing to remember is that there is no such thing as a doctor who knows everything, so its important to learn as much as you can as you go through this so that you can know what questions to ask and advocate for yourself as you go along. There's been so many changes in treating this particular cancer in recent years that you shouldn't assume that your doctor has had the time to keep up with it all.
It's a lot to deal with, but you've come to a great place to get a lot of information and moral support from others in the same boat. You can pick and choose what works best for your circumstances and ignore the rest as you see fit. It's all meant with the best of intentions. It's amazing how much one comes to care for people we haven't and may never meet.
Best of luck with your coming surgery; it's always such a relief to get definitive answers to type and staging and get that plan of action for dealing with it!
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scanLisaPizza said:I only had a CT before
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.
I don't get it Lisa! Seems like such a helpful tool that it's hard to understand why they wouldn't want to use it. I'm going to ask while I'm there on thursday why my doc skips it. Was your weight loss from being ill or were you trying? I see it's pretty common to lose weight from cancer. Hope that cyst is nothing bad.
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II hear you about the CT, forgrace_of_god said:scan
I don't get it Lisa! Seems like such a helpful tool that it's hard to understand why they wouldn't want to use it. I'm going to ask while I'm there on thursday why my doc skips it. Was your weight loss from being ill or were you trying? I see it's pretty common to lose weight from cancer. Hope that cyst is nothing bad.
II hear you about the CT, for sure.
My weight loss was because I was having gallbladder attacks and could hardly eat without triggering them. Fortunately I got my gallbladder removed at the same time, and it fixed the problem!
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What I have learned
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! 0 -
Hi, good luck on your surgery
Hi, good luck on your surgery. Even if believed it is stage 1, if you have grade 2, I would think they definitely would take lymph nodes. I had 17 out and 3 were positive. It was a bad surprise since docs told me ahead of time that CT scan was clear, that I was stage 1 and all likely would be fine, no big deal. Only after the pathology report came did they find the cancer in the lymph nodes - and that boosted me to stage IIIC, grade 2, with chemo/radiation. So hopefully the doc will take a look at the lymph nodes. It could save your life.
All the best, and everyone on this board is on your side.
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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!
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grace_of_god, be kind to
grace_of_god, be kind to yourself. You just had major surgery and need to take it easy. Remember, rest is restorative so take as many naps as you need.
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Very Glad Everything Went Wellgrace_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!
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Surgery recovery
Great to hear you have gotten through surgery. In addition to lots of rest it helps to drink plenty of water to clear the body of anasthesia. Take care. Peace to you...
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I really had a hard time withgrace_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
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Very dark urine.
Had another concern but have read enough now to feel OK... my urine since surgery was very dark and had me worried that there was blood in it, but I see that anesthetics and other meds coming out of your system can cause this. I no longer have pain on urination now so that's a relief!
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