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Prognosis is good, why don't I feel better?

Boolea
Posts: 28
Joined: Oct 2012

Hello all,

I had my surgery on November 16, a partial nephrectomy, done laparascopically and robotically-assisted. I am recovering well, though I did try and go back to work part-time this week and I may have pushed it a bit.

I have yet to speak with my doctor in person, but we discussed the path lab report over the phone. The doc said the surgery was a "success" and he was able to save the kidney, and he feels my prognosis is very good. The path lab apparently had some concern over the margin of excision. I will talk to him more about that on Friday.

I've been reading some posts on here and it seems there are quite a few people who have had partial or full nephrectomies who have their cancer come back (or maybe it never left?). I'm feeling some anxiety about this. I'm also at risk for breast cancer and now am reading about a link between kidney and esophageal cancer? I think I'm just feeling vulnerable and stressed. I want this to be the last of it, but can't help worrying that it might not be in the long term.

Boolea

icemantoo's picture
icemantoo
Posts: 1479
Joined: Jan 2010

Boolea,

You just had major surgery 3 weeks ago. You are still feeling pains from the surgery. Please do not associate these normal pains with the Cancer coming back. In the absence of complications from the surgery you still have a month or 2 until you are feeling good and there will be some residual pain for months after that.

Icemantoo

angec's picture
angec
Posts: 621
Joined: Mar 2012

Glad your surgery went well. i don't remember the details of your issue but back to work so soon? I think maybe you should have given yourself more time to rest. Any surgery is not easy but add the anxiety of a cancer diagnoses and the stress builds. But the doc thinks he has it all and saved the kidney which is great news. As long as you keep a watch on it things should be fine. Even with the worse case scenario, if it returned, the chances are you will catch it in time and still have a great outcome. Don't worry yourself too much. It seems like it is under control. You won't feel yourself for at least a few months down the road. Try to relax a bit more. Once you get all of the details from the doctor you will feel better. Praying for you!

Boolea
Posts: 28
Joined: Oct 2012

I'm seeing the doc for the first time since my surgery today. I have a list of questions to ask him.

Thanks to all who replied here, I do feel better. This is a great website.
I am going to be seeing a counselor from our cancer center soon and I'm sure that will be helpful for my mental health. My friends are well-meaning, but they don't understand fully and sometimes they end up saying the wrong things. I need to reach out to the people who can actually help me.

It's hard when that anxiety rears its head, sometimes seemingly out of the blue.

I do recall a few years back feeling a similar way post-surgery. Depressed, frustrated and impatient. I had a full-incision hysterectomy and was not back at work for about 5 weeks. Since this surgery was laparascopic, the healing process has gone faster and I think I jumped the gun going back to work this week. I do need more time, and I've been home since Wednesday.

I will post later after my doc's appointment....

Boolea
Posts: 28
Joined: Oct 2012

hi Angec,

Turns out it was too soon to go back to work, I've been home and will go to work next week part-time, maybe start Thursday. I underestimated how exhausting it was just getting to work, parking, walking into the building. Then having to be "on" mentally - and picking up on stress and feeling some pressure. I wasn't ready after all.

To add to the mix, I am having menopausal symptoms, (I'm 51) and also have fibromyalgia. With this added in, I'm probably moodier and feeling more anxiety than I normally would. The fibromyalgia pain has kicked in over this past week. Interestingly, it had subsided in the two weeks since surgery.

Thanks for your prayers :-)
Boo Lea

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Boo,

The fear and anxiety you are experiencing is completely normal and part of the healing process. Your mind has been entangled in a whirlwind since "You have cancer and need surgery." became part of your life. Your body is going about healing itself nicely, it takes a bit longer for the mind sometimes, but this too shall pass. Its best to stay busy and give your brain something else to think about, before you know it all of this will take a back seat to life as normal. Of course by then it will be time for follow-up tests and the scanxiety that comes with them, but we'll be here to help you through that too.

Hang in there,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It's a bit soon to be worried Boolea. If path are concerned about the margins, there may be cause for concern but you'll know about that tomorrow. If they're not justified then you probably have next to nothing to worry about until next scan time, when it's natural to be concerned, as Gary says, whatever your situation.

If, however, the margins aren't perfect, you could need further surgery but in that scenario you have the comfort of the reasoning Ange has supplied.

Let us know the news tomorrow and we're keeping our fingers crossed that it's all good.

I am alive
Posts: 218
Joined: Jul 2012

Boo,
Don't delve too deep into Cancerland unless you have to. It will color your days and encourage more worry. Seems like you've done your due diligence thus far. You are aware of what's out there, and that's good. If you get the green light tomorrow, run with it. Try not to muddy your cancer-free years with a paralyzingly fear of what might be. Easier said than done, of course. And if cancer does rear it's ugly head again, you know what? You'll deal with it. We are all stronger than we think we are. At some point, we stop living in dread from scan to scan, and just live. We decide to be happy. Good luck tomorrow!

Boolea
Posts: 28
Joined: Oct 2012

Thanks, Gary! I think part of the problem is being home alone every day. My sister is coming to visit tomorrow and to help me with some errands, that should be good for me. I have too much time to sit here and think and think and think and worry. That is probably the number one reason for going back to work prematurely. Thank god my boss is understanding and told me not to worry, take my time, and come back when I'm able. I work at the hospital I had my surgery at, by the way.

Your words are encouraging, I appreciate it!

Boo

Boolea
Posts: 28
Joined: Oct 2012

I met with the doc today and saw my surgery report and path lab findings. The report confirmed stage 1 renal cell carcinoma, confined to the left kidney. He estimated that I have 75% of my kidney, but will know more after my 6 month CT scan. Prognosis is 90% chance of being "cured" with surgery alone, no further treatments are needed, just the interval CT scans. I'm guessing these will be part of my life now, at least for the near future.
The path lab did indicate concern with the margin of excision, but the doc didn't seem to think it was an issue. The tumor was 3.9 cm, larger than the the initial CT scan size of 3 cm.
So this confirms what the told me right after surgery. My prognosis is quite good, and I am relieved to have this confirmed.
I am exhausted from my trip to the appointment, waiting, and grocery shopping after. My limit seems to be 3 hours. If I stand for too long my tummy gets very distended and sore. That is been a very consistent symptom for the past few weeks, distended tummy, and of course, aches and pains here and there at the incision sites.
So for now I am relieved and grateful, and ready to hit the sack!

Boolea

Boolea
Posts: 28
Joined: Oct 2012

I met with the doc today and saw my surgery report and path lab findings. The report confirmed stage 1 renal cell carcinoma, confined to the left kidney. He estimated that I have 75% of my kidney, but will know more after my 6 month CT scan. Prognosis is 90% chance of being "cured" with surgery alone, no further treatments are needed, just the interval CT scans. I'm guessing these will be part of my life now, at least for the near future.
The path lab did indicate concern with the margin of excision, but the doc didn't seem to think it was an issue. The tumor was 3.9 cm, larger than the the initial CT scan size of 3 cm.
So this confirms what the told me right after surgery. My prognosis is quite good, and I am relieved to have this confirmed.
I am exhausted from my trip to the appointment, waiting, and grocery shopping after. My limit seems to be 3 hours. If I stand for too long my tummy gets very distended and sore. That is been a very consistent symptom for the past few weeks, distended tummy, and of course, aches and pains here and there at the incision sites.
So for now I am relieved and grateful, and ready to hit the sack!

Boolea

Boolea
Posts: 28
Joined: Oct 2012

I met with the doc today and saw my surgery report and path lab findings. The report confirmed stage 1 renal cell carcinoma, confined to the left kidney. He estimated that I have 75% of my kidney, but will know more after my 6 month CT scan. Prognosis is 90% chance of being "cured" with surgery alone, no further treatments are needed, just the interval CT scans. I'm guessing these will be part of my life now, at least for the near future.
The path lab did indicate concern with the margin of excision, but the doc didn't seem to think it was an issue. The tumor was 3.9 cm, larger than the the initial CT scan size of 3 cm.
So this confirms what the doc told me right after surgery. My prognosis is quite good, and I am relieved to have this confirmed.
I am exhausted from my trip to the appointment, waiting, and grocery shopping after. My limit seems to be 3 hours. If I stand for too long my tummy gets very distended and sore. That is been a very consistent symptom for the past few weeks, distended tummy, and of course, aches and pains here and there at the incision sites.
So for now I am relieved and grateful, and ready to hit the sack!

Boolea

icemantoo's picture
icemantoo
Posts: 1479
Joined: Jan 2010

Boolea,

Things should get better day by day. All of your feelings and anxiety is normal for 3 weeks after surgery. In a year you wont even remamber that there was some pain ivolved. OK a little bit.

Icemantoo

I am alive
Posts: 218
Joined: Jul 2012

Wow! You are so lucky! 90 percent chance of NO recurrence - I'm trying hard not to be jealous. I know you're still feeling lousy from the surgery but that cloud will lift. Now go celebrate - every...single...day. Cheers!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Boolea, you're one of the lucky ones and we're all delighted for you. Listen to your body and don't push it too hard too soon, but drink plenty of water and other fluids and do a bit of walking every day. You're going to be fine.

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Almost all here would trade reports and prognosis with you. Count your blessings and share the Karma.

Boolea
Posts: 28
Joined: Oct 2012

Hi foxhd,

Thanks for your perspective. I work in health care and I see so much worse all the time. But I also am glad I do work in a hospital, it has helped me with my situation.

I felt kind of guilty for even posting, but of course this is the only experience that has affected me, so it's the only experience I know.

May I ask what was your situation? I would like to hear what others on here have gone through. You and the others who responded here are remarkably positive and supportive.

Cheers,
Boo

Boolea
Posts: 28
Joined: Oct 2012

Thank you!

My physician loves his percentages.

May I ask what your experience was, as I'm new on here?

Boo

Boolea
Posts: 28
Joined: Oct 2012

Thank you!

My physician loves his percentages.

May I ask what your experience was, as I'm new on here?

Boo

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Boolea, It would be best to go back several pages to catch up on my experience. I first started posting in Oct. 2011. There has been alot going on and too much to repeat. But, it's a quick read. Suffice it to say that I was lucky to be admitted to a clinical trial and as a result, I have an excellent future. BTW, your percentages are great!

Boolea
Posts: 28
Joined: Oct 2012

Good Sunday morning everyone,

I'm not sure why my posts are doubling up, but I have had some trouble with delays and getting hung up. It's not my internet connection.

I will check back and look at older posts, fox, thanks. I'm glad you are doing well and thanks for your positivity and encouragement!

Yes, my percentages are great, and I was laying in bed this morning thinking: why don't I feel happy/relieved/ecstatic/encouraged? Maybe it's emotional overload, I don't know. Right now I am still healing from surgery and finding that it's not just the body that needs to heal, it's the mind and emotions as well. I do recall that when the doctor came in and spoke with me right after surgery, and told me he had saved the kidney, I felt very happy and was laughing and joking with the nurses.

I'm also finding out things about the people in my life. Every bad experience in life teaches us things, doesn't it? I am also growing more aware of how many people are touched by cancer.

I would like to do some reading and research now on why we get this type of cancer and what we can do as far as diet, lifestyle, to prevent it coming back.

Have a good day, all.
Courtney

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Courtney, you have just experienced a potential brush with your own mortality. One doesn't just quickly get over it. Life will become appreciated differently. For better or for worse is a decision you have to make. During my first year since nephrectomy, I found I had a much shorter tolerance for nonsense when dealing with people. (not that that has gone away).Life is too short. I'll tell you that most of us think about our diagnosis over and over again. Day in and day out. We are changed forever. It is the line about when life gives you lemons.......,.things can still be good. Your value system will undoubtably change. That is OK. Just make it so.

Boolea
Posts: 28
Joined: Oct 2012

I read your reply several times over. I could not have stated it otherwise...it's perfect. I already feel better knowing that what I'm going through, despite my positive prognosis, is entirely normal. I'm already experiencing that feeling of intolerance you are speaking of.

I told a friend that things would never be the same in my life...and she tried to talk me out of that thinking, probably concluding that I was becoming depressed. I tried to tell her, no...it doesn't mean I will be miserable, I can live with it and look for happiness. She doesn't understand. Nobody does, until they get the big C diagnosis.

Thank you for your insightful words and encouragement!
Boolea

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