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I am nervous

nbenabe
Posts: 8
Joined: Sep 2017

Hi everyone i hope you are all enjoying life. I am having a check up in 2 weeks and this is my first one since the surgery back in June. I had a partial  nephrectomy on my left kidney. i am 22 so I think that is why I recovered quickly. I wasn't nervous or scared for surgery just confused as to how I had cancer... I felt healthy ate healthy &  exercise regularly...no symptoms at all. 

 

So I am nervous now and I don't understand why. I keep thinking that the cancer came back so my question is have you ever had cancer come back? Sorry for my ignorance I don't know much about cancer but I have been experiencing slight discomfort around my  incision this week & idk if that might be a symptom of some sort. 

 

This is also my first post. I find it comforting to be here & write out my thoughts 

 

N

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Hi N!  It's totally normal to be nervous!  I just had my neph 3 weeks ago so it's too early for me to answer about recurrence.  But the statistics for smaller tumors  pretty good. Do you know the type and stage/grade for your RCC?  Were you tested to see if it is genetic in your case? I have a friend who's daughter is 24. She had a 2.2 tumor. No symptoms but her tumor started to change so she had a partial in march. Last week she got her first scans back and she was 6 months cancer free!!  She was tested for genetics based on her age But hers was not genetic. Try not to let worry or over thinking take over your mind. I know it is very hard but worry will do nothing good for you!  I feel certain you will have a great first recheck!

nbenabe
Posts: 8
Joined: Sep 2017

Hi Angie thank you for your response my doctor told me it was genetic and my tumor was 12 cm not sure if that is big or not. He was expecting to remove my whole kidney and even my spleen and then treat me afterwards but everything was better than he expected when he cut me open. How are you recovering? 

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

nbe,

 

 The good newa is that your operation was a partial which suggests that your tumor was small and they ueually don't spread. As for your specific case, ask the doctor. Slight discomfort does't mean in and of otself that the Cancer is returning.

 

 

Icemantoo

nbenabe
Posts: 8
Joined: Sep 2017

Thank you! I feel a bit relieved. My tumor was 12 cm not sure if that plays a role or not. 

stub1969's picture
stub1969
Posts: 923
Joined: Jul 2016

Welcome nbenabe.  Question for you--did your doctor talk to you about genetic testing?  22 years old with a 12 cm tumor or pretty rare.  Was your cancer clear cell or one of the other types of kidney cancer?  To answer your question, yes, the size of a tumor does play a role in metastases.  Review your pathology report and see what grade your cancer was also.  Grade 1 or 2 is more idolent with a 3 and 4 more aggressive.

Good luck and keep us updated.

Stub

nbenabe
Posts: 8
Joined: Sep 2017

Hi Stub

 

thanks for your response. I have no idea I did not want to know much during that time I guess i figured the less I knew about it the better and I can't find my pathology report ugh. i wasnt concerned at all now i am because the last two weeks i have been in discomfort and sometimes pain in my lower left side. i want to know what I am dealing with. I have a follow up in two weeks I guess I wont know much until then. 

stub1969's picture
stub1969
Posts: 923
Joined: Jul 2016

I'd check about an electronic portal at the hospital you had your surgery.  It's really easy to set up and you can access all your reports.  I'd encourage you to do this sooner rather than later.  Then you can read through your pathology report and develop questoins to ask your doctor.  If you run into some things on the report that are not real clear, go ahead and ask us.  We're here to help.  At this point "Knowledge is Power".  You'll want to be equiped with knowledge as you move forward in your journey.

Stub

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Who is following you? The urologist that did your surgery? I'd want to know if it's a urologist or a urologic oncologist. For myself, I wanted to be followed by medical oncologist who has RCC experience. They are the ones that actually treat metastatic kidney cancer. I felt more comfortable with the person who was going to take care of it doing the follow up. I thought they'd be more tied in to the outcome than someone who is probably going to hand me off if it comes back.

Before you can know if you're being followed properly, we would really need to know the type of cancer, stage and grade. At 12 cm it could be stage 2 or stage 3. Different type, stage and grade have different risk and would demand closer monitoring.

A tumor that large at your age isn't very common. I'd wonder if they investigated the possibility of you having one of the genetic conditions that predisposes people to kidney cancer? You can get that type of testing and even out of pocket it's not terribly expensive. It can have a huge impace on your prognosis, treatment and follow-up if you have that type of kidney cancer. Might be worth looking into.

It's completely normal to be worried about recurrence. The thing to do is get your followups and educate yourself so you are following it. The earlier they catch a metastasis, the better. Because if they catch it early, you might be able to just remove it with another surgery instead of having to go on any of the drugs or use radiation (it depends on where it is, but certainly small, single tumors in certain locations is a much better position to be in than having multiple tumors). My first tumor was Stage 3 clear cell RCC Grade 3. I had a metastasis 2 years after my first tumor to the adrenal gland which was caught early and they removed my adrenal gland. I've been cancer free for 2 1/2 years now. However, I get CT scans every three months now because my RCC oncologist says studies show I have a high chance of recurrence and he wants to catch it early.

Best to you,

Todd

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