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JCLIF JCLIF

post radical nephrectomy

I had Robotic assisted radical nephrectomy on Nov 1st, 2017. Clear cell carcinoma. Recovery has been a challenge. By Nov 8th, I had a complete physical and mental break down. Not something I have ever dealt with. After 3 days of sobbing, and processing, I came out the other side, well, much better. Guess I had to deal with all the emotions I chose not to deal with prior to surgery. Recovery went much better after this. I went back to work on Dec 15th, which, by the way, was too early. I should have waited until the 1st of the year. I am sure you know us A types. Anyway, Starting around the 3rd week of November, I started to get bouts of nausea that came on sooo fast. Lasted about 15 min. Sometimes I vomited, other times, it went away. Now I have bouts of severe fatigue that come on just as fast, but stay for an hour or so. Then gone. When this happens, I feel so fatigued, I could collapse. Not faint, just collapse. Getting a bit worried, but seems so general that the Doctors will probably dismiss. Any ideas?

20 Replies

  • lynda20916 lynda20916 JCLIF

    Please go to your doctor and get it checked out.  Your doctor should absolutely not dismiss your concerns.  Instead, your doctor should consider what might be going on. Don't delay, my dear! xx

    • lynda20916 lynda20916 JCLIF

      I am wondering which doctor you returned to...the surgeon, the urologist or the oncologist? Nausea and fatigue could be caused by dehydration, among other things...it hasn't been too long since your surgery, so that may be why the doctor was not concerned.  But I would suggest that you go see either your oncologist or your urologist--your concerns do need to be addressed, and press until they are. 

    • JCLIF JCLIF lynda20916

      Since I am with an HMO, Kaiser Permanente, after 5 days post op, the surgeon will not see the patient. So, I went to my GP. Because the cancer was contained to the kidney, and they removed it, no oncologist. I will have to seek out a Dr. that will actually listen/look at me, instead of the computer screen. Thank you for your input. I will make an apt on Tuesday.

    • lynda20916 lynda20916 JCLIF

      I am also in the USA.  Are you receiving follow up care at all?  Usually, whether or not the surgeon believes that all the cancer was contained in the kidney and removed, a patient receives follow up care, to make sure that there's not a reoccurrence whether one is statistically likely or not.  Please let me know what happens.  

    • lynda20916 lynda20916 JCLIF

      That's good news!  One thing my oncologist told me is that CT scans are capable of picking up cancer growths once they reach the size of an old fashioned pencil eraser and that can take about 6 months.  I would suggest that (if you're not already doing so) you make sure to stay hydrated and look into taking B vitamins and a good probiotic.    

      It takes some people as much as 6 months to recover from surgery.  And, because your body was essentially gestating the cancer, it robs you of essential nutrients.  I'm in treatment for a reocurrence of endometrial cancer.  In my case, they didn't get it all with my hysterectomy. My uterus was punctured on removal by a tool (I also had a robotic procedure) and microscopic cancer cells "migrated" elsewhere in my body and grew over a year till I found a tumor.  I was staged at 1a, no further treatment, too.

      Best of luck to you!  Please let me know how you're doing.  

    • lynda20916 lynda20916 JoyKF53

      Hi Joy.  I didn't mean to confuse.  I was staged at 1a after the hysterectomy, so no further treatment. That was before the reoccurrence. I have just completed chemo (6 rounds).  Next I get a CT scan to see whether we proceed with radiation only to completely kill what's left and no surgery, or have surgery with radiation to follow.  The chemo was tough.  I had my last round the first week of January and am still recovering.  If I'm to have surgery, I'm told that I'll need to recover about 6 weeks before hand.

        

    • JoyKF53 JoyKF53 lynda20916

      That's really tough. I found chemo ok to be honest. Losing my hair didn't particularly bother me and side effects were kept under control with medication. Radiotherapy was a pain, I had to travel to London from Kent every day for about 17 days, had to wear a tight fitting mask during treatment, sore throat, dry mouth, complete loss of taste. Also lot of dental treatment in the following months. But, looking on the bright side, I'm still here to moan about it! Lol.

    • lynda20916 lynda20916 JoyKF53

      I'm glad you're still here!  smile. I had meds for nausea and Neulasta the last 2 chemos to build up my white blood cell count.  But, I had terrible fatigue.  Was in bed 10 days after my 5th treatment.  After my 4th, I had pain around the tumor.  Was on a narcotic for that for about 3 days. I tried to take it a day at a time, an hour at a time, a minute at a time. When I really felt awful, I wasn't hopeful at all.  I didn't care.  

      My Mom died in November.  One of our beloved dogs died in December. I am glad to see the back of 2017.  

      If I have radiation after surgery, it will be low dose and daily for 6 weeks.  I've got my CT scan scheduled for next week, but the surgeon my oncologist wanted to assist (if I have it) will be out of town starting a couple of days after the CT scan till March, so he can't do it. 

      So enough moaning for me.  How are you and your husband doing?  I was glad to see your post! xx

    • JoyKF53 JoyKF53 lynda20916

      I'm fine. After they sorted the lymphoma out, during a routine cat scan, they found a meningioma (tumour of the meninges which is the covering of the brain). So I was lucky enough to get Gamma Knife Surgery a couple of months ago, having check up next week. While all this was going on my husband had emergency life saving surgery for a perforated bowel and now has a colostomy bag and a massive surgical hernia! He's due to have more surgery in the autumn when everything has healed up and calmed down. But he's not in pain now and do everything he wants to do so it's not all bad.

    • lynda20916 lynda20916 JoyKF53

      I'm glad that you're both doing well.  You are truly a "joy," Joy.  You're honest and compassionate and brave. When your husband has his second surgery, are they going to get rid of the colostomy bag, or will he still need it?  Just asking, because an acquaintance's husband had surgery to place one so his intestines could heal from diverticulitis.  After a year, they went in and reconnected his intestines to his colon.  

    • JoyKF53 JoyKF53 lynda20916

      They won't know til they open him up. If there's a lot of scar tissue they won't be able to find the floating end of the intestine to rejoin it. In that case he will have the bag for good, and they won't be able to do the second surgery to fix the massive hernia because of the risk of infection from faecal matter, so he will have to stay as he is. This happens to ten percent of patients. On the other hand they might find there is minimal scar tissue so all will be well. Our current pain is that he still has one open wound 8 months on from the first surgery! But we'll both get there in the end lol.

    • lynda20916 lynda20916 JoyKF53

      I wish both of you well, and will pray for the best outcome for both of you!  

      I am on the fence about my proposed surgery.  They may need to use mesh on my abdominal muscle, which tends to fuse to intestines if it gets irradiated.  But low dose radiation is the final part of the treatment after the surgery.  Part of me wants not to have the surgery, which will be open surgery.  Given the choice, I wouldn't have robotic surgery again. But I am fearful that radiation only won't kill the cancer.  You know how it is.

    • JoyKF53 JoyKF53 lynda20916

      Indeed I do, Hobson's choice. Getting rid of the cancer must be a priority. They will have to use mesh on my husband as well, his abdominal muscles have completely fallen apart. Would it be possible for you to have the radiotherapy before you have the op using the mesh?

    • lynda20916 lynda20916 JoyKF53

      I've thought of that.  But the doc says that the radiation needs to happen after the surgery, if I have it, in order to kill any microscopic cancer cells that are left behind.  I've got a fully-encapsulated tumor, in my muscle wall on the left hand side of my abdomen and three lymph nodes lighting up in my right groin--at least they were still lighting up after 3 rounds of chemo, when I had my last CT.

      My doc's collaborating with the radiologist, and needs to find another general surgeon, assuming the radiologist says he doesn't think the cancer can be killed by radiation alone.  If the lymph nodes aren't lighting up, my doc may still want the tumor removed. Having a fluid, versatile plan that can be changed because of previous outcomes sometimes feels like not having a plan at all 

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