Up until last Monday, I was recovering well, except for the intense burning pain near my right groin when I coughed, laughed, sneezed, or moved in the wrong direction. The pain was from where they removed one of the sentinel nodes and for some reason it hadn't improved - even after three weeks post-surgery. Anyway, I was walking quite well, and eating better. I felt I had turned a corner.
Unfortunately, last Monday, I started to feel constant pain from that area. The burning sensation never subsided and I couldn't find any pain-free position sitting, standing or lying down. I should have been improving, not regressing. So, on Tuesday, I called my surgeon's office in Victoria and he indicated that he couldn't assess my condition remotely so he directed me to go to my family physician right away. He was concerned that it might be a blood clot so I needed to be examined right away. My doctor didn't have any availability until the next morning, so I tried to manage the pain by taking Tramacet, which did nothing to ease my pain. Apparently opioids do nothing for nerve pain. I also tried taking a Tylenol 3, which didn't take the pain away, but allowed me to fall asleep for a while.
My doctor did an examination the next day, but she said she wasn't equipped to scan the area, so she called ahead to the hospital emergency department and informed them that I would be on my way. She provided me with all my medical documentation to take to the ER doctor. It was helpful to be able to read all about my surgery and the complications they encountered. I took photos of all the documentation for my own records. There was definitely an issue with one of the lymph nodes, as the report stated "a lymph node was detected quite deep mid iliac artery". I'm assuming this is why my pain is so intense.
I spent 6 hours in the emergency room. I was taken in to speak to the nurse, who reviewed all my information, took my blood pressure, temperature, and blood oxygen levels. Then a while later, I was brought in to get blood work done. Eventually I saw the ER doctor (who was amazing), and she examined me. Her assessment was that it was either a hernia or nerve pain. I wasn't convinced it was a hernia, since this pain had been there since day 1 post-surgery. I discounted a blood clot for the same reason. I told her I agreed that it felt like nerve damage and it wasn't healing. She sent me for another CT scan. So I waited for quite some time before they got me in for the scan. It was the same guy who did my first CT scan back in March, and he remembered. He is also great at his job. I was in significant pain, and he was very helpful. They wheeled me around the hospital between the ER and Medical Imaging because I was struggling to walk.
When I got back to the ER, I waited a while longer, then the nurse came to give me an injection of Dilaudid and 2 Tylenols and 2 Advils to help with my pain. By the time I went back in to see the ER doctor I was completely out of it. My mom was with me and she said I was very chatty. I asked her to come into the exam room with me because I didn't think my brain could sort out what the doctor was saying. The CT didn't show anything, and so she said there was still a slight chance it was a hernia, but that could only be detected with an ultrasound, and I would have to actively cough for the ultrasound to see it. I didn't like that idea. So she prescribed me Gabapentin which is supposed to help with nerve pain. So now I take 2 Gabapentin pill, 2 Tylenols, and 2 Ibuprofens every 6 hours. On Thursday, I slept for most of the day. I think I was only awake for 6 hours total - most likely because I still had the Dilaudid in my system and I was finally able to sleep.
I didn't notice much change in the pain until Saturday, when I was finally able to walk again and I got some reprieve from the pain ... at least in the few hours after I took the medication. Saturday was actually quite a great day. I spent time with some out of town relatives who came to visit, and I managed to sing and play guitar. I was feeling so much better than I had for almost a week.
Then on Sunday night I took a bad turn again. I had a late dinner with my sister, so we threw in some appetizers to eat, and unfortunately I used a small spoonful of mayonnaise to mix with the sauce and apparently the mayonnaise was stale dated. I ended up vomiting and had diarrhea which inflamed the pain in my groin. I had a rough night, but at least it wasn't related to my surgery. I almost asked my sister to drive me to the hospital thinking that it was something related to my condition, rather than food poisoning. That was a close call.
Anyway, my follow-up appointment with my surgeon at BC Cancer Agency is tomorrow. I am hoping he will be able to tell me why the pain isn't subsiding. I just want to know that eventually this will heal. I still can't drive, and until this pain goes away, I won't be able to get back behind the wheel. I also have an appointment with the radiation oncologist, who will likely be pressuring me into getting radiation treatment. She will have to be pretty convincing to change my mind, but I will hear what she says and assess what is best for me. I found this study related to radiation after stage 1B1 cervical cancer, which makes me lean towards refusing radiation therapy:
https://www.ncbi.nlm.nih.gov/pubmed/20373935
This other study (https://www.ncbi.nlm.nih.gov/pubmed/11504285) suggests that there is only a 10% increased risk for those that don't receive further therapy after a hysterectomy and lymphadenectomy.
My rationale is that these studies don't consider other factors such as lifestyle, environment, diet, weight, etc. I don't drink, smoke, eat sugar, or red meat, and I am a healthy weight and active. I think when you incorporate all risk factors, I would fall into a low risk category. "In one study that did not use chemotherapy, the recurrence-free interval was about 10% better for stage IB patients receiving postoperative irradiation after radical hysterectomy and pelvic lymphadenectomy compared with those who received no further therapy."
Finally, if you have radiation treatment in one area of the body, there is no option to do radiation for a second time in the same area. Therefore, I feel I would be better served to take my chances, and if I get a recurrence, then at least radiation treatment is still an option. I would be interested to know what others think.
Maybe I am just attempting to find information to support my position, and discounting the real evidence. This is not an easy decision for me... I'll let you know how the consult goes tomorrow, and what my final decision will be.
My dog, Echo, has been very sad and stressed out because I've been sick. I think she's traumatized.
Unfortunately, last Monday, I started to feel constant pain from that area. The burning sensation never subsided and I couldn't find any pain-free position sitting, standing or lying down. I should have been improving, not regressing. So, on Tuesday, I called my surgeon's office in Victoria and he indicated that he couldn't assess my condition remotely so he directed me to go to my family physician right away. He was concerned that it might be a blood clot so I needed to be examined right away. My doctor didn't have any availability until the next morning, so I tried to manage the pain by taking Tramacet, which did nothing to ease my pain. Apparently opioids do nothing for nerve pain. I also tried taking a Tylenol 3, which didn't take the pain away, but allowed me to fall asleep for a while.
My doctor did an examination the next day, but she said she wasn't equipped to scan the area, so she called ahead to the hospital emergency department and informed them that I would be on my way. She provided me with all my medical documentation to take to the ER doctor. It was helpful to be able to read all about my surgery and the complications they encountered. I took photos of all the documentation for my own records. There was definitely an issue with one of the lymph nodes, as the report stated "a lymph node was detected quite deep mid iliac artery". I'm assuming this is why my pain is so intense.
I spent 6 hours in the emergency room. I was taken in to speak to the nurse, who reviewed all my information, took my blood pressure, temperature, and blood oxygen levels. Then a while later, I was brought in to get blood work done. Eventually I saw the ER doctor (who was amazing), and she examined me. Her assessment was that it was either a hernia or nerve pain. I wasn't convinced it was a hernia, since this pain had been there since day 1 post-surgery. I discounted a blood clot for the same reason. I told her I agreed that it felt like nerve damage and it wasn't healing. She sent me for another CT scan. So I waited for quite some time before they got me in for the scan. It was the same guy who did my first CT scan back in March, and he remembered. He is also great at his job. I was in significant pain, and he was very helpful. They wheeled me around the hospital between the ER and Medical Imaging because I was struggling to walk.
When I got back to the ER, I waited a while longer, then the nurse came to give me an injection of Dilaudid and 2 Tylenols and 2 Advils to help with my pain. By the time I went back in to see the ER doctor I was completely out of it. My mom was with me and she said I was very chatty. I asked her to come into the exam room with me because I didn't think my brain could sort out what the doctor was saying. The CT didn't show anything, and so she said there was still a slight chance it was a hernia, but that could only be detected with an ultrasound, and I would have to actively cough for the ultrasound to see it. I didn't like that idea. So she prescribed me Gabapentin which is supposed to help with nerve pain. So now I take 2 Gabapentin pill, 2 Tylenols, and 2 Ibuprofens every 6 hours. On Thursday, I slept for most of the day. I think I was only awake for 6 hours total - most likely because I still had the Dilaudid in my system and I was finally able to sleep.
I didn't notice much change in the pain until Saturday, when I was finally able to walk again and I got some reprieve from the pain ... at least in the few hours after I took the medication. Saturday was actually quite a great day. I spent time with some out of town relatives who came to visit, and I managed to sing and play guitar. I was feeling so much better than I had for almost a week.
Then on Sunday night I took a bad turn again. I had a late dinner with my sister, so we threw in some appetizers to eat, and unfortunately I used a small spoonful of mayonnaise to mix with the sauce and apparently the mayonnaise was stale dated. I ended up vomiting and had diarrhea which inflamed the pain in my groin. I had a rough night, but at least it wasn't related to my surgery. I almost asked my sister to drive me to the hospital thinking that it was something related to my condition, rather than food poisoning. That was a close call.
Anyway, my follow-up appointment with my surgeon at BC Cancer Agency is tomorrow. I am hoping he will be able to tell me why the pain isn't subsiding. I just want to know that eventually this will heal. I still can't drive, and until this pain goes away, I won't be able to get back behind the wheel. I also have an appointment with the radiation oncologist, who will likely be pressuring me into getting radiation treatment. She will have to be pretty convincing to change my mind, but I will hear what she says and assess what is best for me. I found this study related to radiation after stage 1B1 cervical cancer, which makes me lean towards refusing radiation therapy:
https://www.ncbi.nlm.nih.gov/pubmed/20373935
This other study (https://www.ncbi.nlm.nih.gov/pubmed/11504285) suggests that there is only a 10% increased risk for those that don't receive further therapy after a hysterectomy and lymphadenectomy.
My rationale is that these studies don't consider other factors such as lifestyle, environment, diet, weight, etc. I don't drink, smoke, eat sugar, or red meat, and I am a healthy weight and active. I think when you incorporate all risk factors, I would fall into a low risk category. "In one study that did not use chemotherapy, the recurrence-free interval was about 10% better for stage IB patients receiving postoperative irradiation after radical hysterectomy and pelvic lymphadenectomy compared with those who received no further therapy."
Finally, if you have radiation treatment in one area of the body, there is no option to do radiation for a second time in the same area. Therefore, I feel I would be better served to take my chances, and if I get a recurrence, then at least radiation treatment is still an option. I would be interested to know what others think.
Maybe I am just attempting to find information to support my position, and discounting the real evidence. This is not an easy decision for me... I'll let you know how the consult goes tomorrow, and what my final decision will be.
My dog, Echo, has been very sad and stressed out because I've been sick. I think she's traumatized.
Poor puppy! I would go armed with your research to your appointment. I have a good story about Gabapentin. :-)
ReplyDeleteThat reply was from Charlene. ...incase you want to know who has a Gabapentin story.
DeleteGabapentin is very helpful post surgery, most all post ortho surgery patients are prescribed it. I like to think of it as a big slap down on the nerves!
ReplyDelete