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What are the 'normal' or standard procedures during every 3 months or 6 months check up after the surgery?

Beingbless
Posts: 46
Joined: Mar 2012

Hello all, my 1st coming 3 months check up has scheduled in this coming Jun, it will be chest x ray and ultra sounds on the abdomen/bladder then follow up with Ctscan 6 month post surgery.

I've been reading some posts here, looks like some of you have 6months or 1 year check up. Try to get some understanding what kind of normal/standard procedures during the check up?

Is chest x ray so important? What are the risks to have it more than once chest x ray per year? I remember vividly, my GP strongly against to have chest x ray perform on me prior to my surgery, in fact, he insisted not to do it and called it off. He said if I have anything in my lung, then, I died, it's pretty harsh for me, I almost cry out loud in front of him, especially that was the time when I tried to prepare myself going through what I need to get It done for my surgery in Feb.

Just a quick background of me, if you have no idea who am I. I have my right kidney removed due to RCC stage 1 clear cell, grade 2 5cm. All cancer cells were contained in that kidney,, no treatment or medication after that, this is my 5th week post surgery.

Sorry for I am pretty new in this forum, not sure this topic has been discussed. Any information or help is highly appreciated.

Thanks.

icemantoo's picture
icemantoo
Posts: 1456
Joined: Jan 2010

Beingbless,

There is no one size fits all for post op tests. Both 3 and 6 month intervals for the first year or 2 are normal and than yearly thereafter.I would be surprised giving your diagnosis if you have anything to worry about. The purpose of the chest xray is to rule out any spreading of the RCC. The lungs are where it first shows up if it spreads. The Urologist or Surgeon rather than the GP should make that call.Best wishes for a full and complete recovery. Mine is already in its 10th year with NED (no evidence of disease).

Icemantoo

icemantoo's picture
icemantoo
Posts: 1456
Joined: Jan 2010

Beingbless,

There is no one size fits all for post op tests. Both 3 and 6 month intervals for the first year or 2 are normal and than yearly thereafter.I would be surprised giving your diagnosis if you have anything to worry about. The purpose of the chest xray is to rule out any spreading of the RCC. The lungs are where it first shows up if it spreads. The Urologist or Surgeon rather than the GP should make that call.Best wishes for a full and complete recovery. Mine is already in its 10th year with NED (no evidence of disease).

Icemantoo

icemantoo's picture
icemantoo
Posts: 1456
Joined: Jan 2010

Beingbless,

There is no one size fits all for post op tests. Both 3 and 6 month intervals for the first year or 2 are normal and than yearly thereafter.I would be surprised giving your diagnosis if you have anything to worry about. The purpose of the chest xray is to rule out any spreading of the RCC. The lungs are where it first shows up if it spreads. The Urologist or Surgeon rather than the GP should make that call.Best wishes for a full and complete recovery. Mine is already in its 10th year with NED (no evidence of disease).

Icemantoo

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi,
Everybody's follow-up is different, depending on their pathology report, i.e., stage and grade. As a stage 1/grade 2, I had my first follow-up 3 months after surgery then every six months for a year. My urologist then said I should now see him once a year until he feels it is no longer necessary. I get bloodwork and a chest x-ray on each visit. As Iceman said, the lungs is one of the first places that kidney cancer can spread to. I don't know why your doctor was so concerned about chest x-rays. There is not a lot of risk with x-rays. CT scans with contrast, possibly, but not X-rays. If there was a big health hazard I would be dead already after having had a LOT of x-rays and CT scans(without contrast) over the years. I also can't understand why he would tell you that if you had something show up in your lungs you would die. I would find myself another doctor if I were you.
Regards,
Mike

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

I had my surgery 10/11/2011 ,my path report is almost identical to yours 5cm grade 2 mine was in the upper pole.I have already had a chest xray and I am going in April for my first ct scan post surgery.I think what your doctor meant is that if your cancer had already spread before your surgery to your lungs that you were in a lot of trouble.I know doctors can be a little blunt at times but I think it is better sometimes to be a aware of the worst possibilities.I think the odds are in your favor in a big way but it is RCC so we can never let our guard down,so with that said try to relax I think you should be around for a long time to come and give your doctor another chance maybe you being so worried you misunderstood his intentions.Good luck and have a nice day!!!

Beingbless
Posts: 46
Joined: Mar 2012

As usual, you guys have provided and 'educated'me in such a way. Thank you.

Those are very valid points, I will take into consideration to change my GP, but I will give him one more chance. :-) If coming months he refused my chest x ray which ordered by my surgeon, I will walk out the room right away,

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

What you are intending sounds perfect to me. I'm sure lime life is spot on - your doc probably explained himself badly and so you misunderstood him. However, if he"s not bothered to make sure you understand, then you probably should go to someone else.

foxhd's picture
foxhd
Posts: 1858
Joined: Oct 2011

Just to go to the other extreme, I get scans every 3 weeks! Here is a piece of advice. It was not your primary who may have saved your life, it was your surgeon. And if your surgeon wants an x-ray, then who does your primary think he(her) is? Sounds like the two Docs have a personality conflict.

Fishknees
Posts: 73
Joined: Mar 2012

I don;t know much about this either. But if I want follow ups sooner I am sure they will be glad to take my money. If I think it is too long and I am worried. I am going to tell them I want them more often. I didn't even have a primary and from all my reading they like to wait. I am going with the surgeons advice and if I want more I will say so. You can do what you want. Don't let those doctors intimidate you. They don't have the cancer.
Sorry for all the spelling erros but it is late and I can't type or spell.

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Hey I checked your last posting found zero spelling errors ,by the way when I first started I was a little apprehensive due to lack of grammar skills but decided what was more important was being able to talk to people I could relate to,hence I don't care anymore ,so please post away and don't worry about the spelling

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

And you don"t need to worry either, limelife - there's not much wrong with your writing and you"re a good communicator.

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

And you don"t need to worry either, limelife - there's not much wrong with your writing and you"re a good communicator.

foxhd's picture
foxhd
Posts: 1858
Joined: Oct 2011

Your grammer is great. Although you will see that many of us have a stuttering problem.

rae_rae's picture
rae_rae
Posts: 264
Joined: Oct 2010

My surgeon only wanted me to have an xray every six months-no CT scans whatsover. I wasn't comfortable with this and went to my GP and talked to her about what I thought was appropriate-she agreed and scheduled my first CT scan last year. Bottom line is you have to do what you makes you feel comfortable. I did a lot of reading online as to what was recommended and what made me feel comfortable and went from there.

Rae

Beingbless
Posts: 46
Joined: Mar 2012

Read the posts, thank you all. I can not be more agree to do what is right for me, I still very regret I did not have any chest x ray prior to my op in feb, because my GP thought i had one last year, so, it was not necessary at all, therefore, he insisted to do it and called it off.

I will be going back for chest x ray sometime end of May. I will make sure I do it, in fact, after the op, my chest is still not very comfortable from time to time, and a bit shorten of breath. I was not sure whether it is due to low potassium or something else...might have to go back sooner than this....

I have put on potassium pills right after the op, because it dropped till 2.6 ( normal person should have at least 3.5).

Talking about grammar or spelling, I probably the worst....haha... I am originally from Malaysia, and I am a Malaysian Chinese. Due to i speak five different languages, English was the last one I learn here in the States during my college years,,,, so, go and figure it out the level of English I have among this group here.

Again, I appropriate any help I can get from this forum. I wish I discovered this forum prior to my op.

Thank you.

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Just a comment about your shortness of it could 3 other things here first off you had a kidney removed that is a huge shock to the body also don't forget you had surgery and were given anastegia ( I know I just spelled that last word wrong)also don't take this wrong but you are also stressed out which does not help ones breathing normally ,I had issues with my breathing almost 2 months post surgery it is one reason why doctors will sometimes not operate on older patients since the surgery will kill them before the cancer will.Trust me on this one because I have been thru this ,every time I got a headache or a pain somewhere after my surgery I would think the cancer had come back to finish the job so I have learned to relax more over time,so relax and good luck

angec's picture
angec
Posts: 616
Joined: Mar 2012

My mom 79 also has shortness of breath, even more after her surgery. She had chest xrays last week and all was ok (or they didnt' tell us any different). If the cancer reached her lungs would it show on an xray? I am not sure. She does have water retention which her surgeon didn't put her on any lasix or anything. She takes homeopathy and her legs do go down but then next day they swell again. I am hope it is not anything in the lungs but just the water. We will see her primary next week. In the meantime it is manageable but she is afraid to sleep. It is so scary.. all of it!

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

Angela, my Mother-in-law has some of the same problems, but is on Lasix (and a dozen other drugs). She is very much older than your Mom but bearing up well - it's all a matter of attitude. Your Mom is receiving suitable medical care but she might benefit greatly from a bit of help from a clinical psychologist to deal with her overwhelming anxiety which is doing her no end of harm. Just a thought. Sorry you're both suffering so much.

Beingbless
Posts: 46
Joined: Mar 2012

Thank you for the Information and feedback, they are very helpful. I'm In my earlier 40's. Didn't overweight and active prior to surgery. This is not the first time I experienced shortness of breath. I had it twice last year, went to doctor, ran EKG and one time chest X-ray in the early Feb 2011. He found nothing, put me on steroid medication. When it happened the second time, my GP put me on asthma in-haler. but it went away after couple days. I didn't use the in haler at all.

Lately, it was the day after my kidney surgery in feb, the doctor in the hospital found out my potassium level was dropped till 2.6. He then put me on potassium pills for couple weeks. Even though I went back for post visit, the blood test showed it's Up to 3.6 ( normally range : above 3.5) but no medication I need to take, except take more potassium food in my daily diet. And, I had it couple days ago. But, I'm not sure due to stress...I've back to work this week, the work is almost kill me. I still have 700 emails to read through, and with all the analysis projects on top of my list, the list just like a railroad long...not sure my stress will kill me first before my cancer?! But I feel I'm not able to perform well after the surgery. My brain is not working most of the time.

Overall, i still not sure what is the main cause for the shortness of breath, the chest x-ray was a year old prior to my surgery. It csn be from low potassium? Or something else,,,So, I was a bit worry...

My 3 month post op check up is coming up in May. Hope I can find out more.

angec's picture
angec
Posts: 616
Joined: Mar 2012

It's funny, they had her on lasix after the surgery but the doctor tells her he doesn't want to give it to her now because she only has one kidney. During the surgery her sugar went sky high and she had troule breathing on her own so they intubated her for three days. Now she constantly says she can't breath ut looking at her she looks like she breaths fine. So I think you are right about the anxiety. She is so afraid to shut her eyes she won't even sleep. I am going to ask the doctor about that, maybe she can see someone who can calm her down. Otherwise I am trying now some chamomile tea tomorrow and see what else can help like some meditation. The poor thing, i feel so bad for all the anxiety you all must have. But i did get good news from the doctor who administers the homeopathy. He says his patients live much longer lives without side affects and less pain and most are not symptomatic. So that made me feel good. Thanks TW.. i am sorry for you as well, but not giving up hope. I know you will be fine just with your positive attitude alone.. :)

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

Angela,

Another option, especially if your mom doesn't think she needs a shrink, would be a cancer support group. As we have learned here, connecting with others that have been or are on the same journey can be very beneficial and face to face probably even more so. Also, is there any chance she would be willing to come here just to read the stories of others and help her understand that she is not alone?

Hang in there,

Gary

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

I don't disagree with your suggestion Gary but, for the sake of good order (as we lawyers are wont to say) the last thing I was suggesting was seeing a shrink. I was advocating seeing a clinical psychologist - a psychiatrist is a different sort of animal entirely and would not be appropriate.

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

I only meant that her mom might see it that way as I'm sure that's how mine would react.

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

Oh dear! I suppose that would depend on how it was put to her. A doctor should be able to explain the difference between a clinical psychologist and a shrink. The last thing she probably needs is another drug(s).

It's horses for courses. I would run a mile from being involved in any sort of group, but then I'm not a social type (even my own company is a bit much at times!) but I think you may be right that it could be just the ticket for Angela's Mom who seems past wanting to make any sort of effort and would probably find reading the threads here not to her taste. To be among sympathetic folk with whom she could identify could be a very gentle way of getting some relief from the perpetual worry.

My Wife and I have just been out for a walk - just over a mile and a half around the golf course and she's now enjoying a smoothie and searching the academic literature on sarcomatoid chromophobe rcc! I had a pleasant chat with some golfing buddies who wondered why I wasn't playing (little do they know why!)

Our local hero Paul Lawrie, who's a great guy, did well yesterday, didn't he? It's good to see Lee producing what he's capable of and Luke not getting DQd by mistake! I still think Rory will be in the mix and I want to see Lefty there too.

foxhd's picture
foxhd
Posts: 1858
Joined: Oct 2011

Don't leave out Freddy. He's not one to panic easily.

angec's picture
angec
Posts: 616
Joined: Mar 2012

Hello all, thank all of you very caring and loving people for all of the suggestions. I think my mom just doesn't want to even think that she still has the cancer after her sugery. She is hoping they got it all but i doubt it as the surgeon wasn't very aggressive in his surgery. He had the attitude that if it was in one lymph node it was in all of them, he took out two, one was positive the other negative; so there goes his non-sense theory. So he did leave a positive lymph node in there (it came up as a hit on the scan at least) because it was close to the vein. He also left in her gland and part of the tubes so i am guessing she still has it somewhere.

I suggest a support group, then even reading online and she went pale so there went that. We are trying to keep her positive and renew her hope. Going to try to take her for a wee little walk today. Not the big walk like Tex and his wife took (go Tex and wifey!)but just a small start.

Her breathing and leg swelling went down (thank you for your homeopathy Dr. Banerji) and she is glad she didn't need the lasix for now. I hope it continues. Her pain is a wee bit less also yesterday. Today is a new day, hope it stays the same or gets better.

TW.. did your path report specifically name tge Sar and the Chrom type rcc or did it just say grade 4? My moms report said she had granular tissue on the path but her grade was 4 didn't say what that meant.

Have a positive day everyone and put the energy into meditation and fighting..

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

Glad to hear her breathing and oedema are improving and I think a little walk is an excellent idea. Maybe it's best to try to keep her spirits up by narrowing focus to the aspects that are most favourable, concentrating her attention on just the most positive aspects of her situation (but I guess you're probably already doing that?).

[I don't suppose my path report can help your Mom much, unless you think it could show her that we don't have to give up hope, no matter how bad it looks. So - at diagnosis I was told my tumour was Bosniak grade 4. After my first op, in December, the path showed
"Chromophobe carcinoma with extensive sarcomatoid change, Fuhrman grade 4, pT4, pNx pMx"
Anything with a 4 in it isn't good, so stage 4 grade 4 is definitely undesirable. Unfortunately it didn't get any better with the extremely rapid development of a new tumour which precipitated the op I had on Friday of last week.

However, I'm a great deal more positive than your Mom but then I have some advantages that you don't need to point out to her (I'm only 69, have maintained an ideal bodyweight all my life, have always eaten a good diet and also been a bit of an exercise and sports freak all my life. I'm hoping that an optimistic disposition coupled with being physically fit and strong will see me through, but I'm also taking all the steps I can to improve my odds. Nonetheless, there are no guarantees in this game. That said, looking on the bright side certainly does no harm - your closing exhortation is spot on: "Have a positive day everyone and put the energy into meditation and fighting."]

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