How to switch off your brain

Wehavenotimeatall
Wehavenotimeatall Member Posts: 488 Member

  Hi everyone

 I had my LPN in September 2017 

The operation went well and my pathology was very good as it was a 4.4 cm chromophobe  renal carnicoma stage 1b  with complete excision and a 5 mm positive margin

However the past two months I have suffered continually with headaches, dizziness, swelling in the hands and fingers and lower back pain

 Some days I feel very unsteady on my legs 

I have asked my surgeon for a brain and a bone scan but he feels that this is not necessary

Surgeon says the operation had gone well, the excision was complete and he does not want to put me through any further tests that me causing cancer if not necessary.

 He saus things take time and that they will beginnto settle in time 

He is very thorough and I trust him completely but this leaves my mind going in all directions

 I really really want those scans 

The pain has started to improve but can  I check

a)  if you were stage one did you get a brain and or a bone scan 

b)Over the past several weeks I have also been getting pain in my  left kidney   LPN was  in the right kidney.   I had a US last week and that was fine . Has  any one else had that feeling

c)my recovery Seems to be never-ending. I went back to work at five  weeks  and I have continued to work full time  and look after my son  all by myself as I lost

my husband to cancer,.. does this protaction seem unusual .  I am very busy but I am still exhausted at the end of every day. I got some iron tablets recently prescribed  and this seems to be helping  a little.

d)  how do you manage to switch off the voice is in your head  when you head is tellI got you your days are numbered. How the hell do you trust the voices in your head

 

I am seeing the consultant again next week I am going to tell him that I will get the tests done privately

 From the very unsound mind off 

Annie

 

 

 

Comments

  • Bay Area Guy
    Bay Area Guy Member Posts: 620 Member
    Mine was small enough (1.7cm)

    Mine was small enough (1.7cm) that I think they gave it a stage of -1 (just kidding.....mine was 1a).  I did not have bone or brain scans after the surgery, but prior to my surgery, I did have a bone scan performed.  One of the many CT scans I took between when I was diagnosed (December, 2013) and my operation (April, 2016) showed I had, at one time, had a broken tailbone.  The technical term was sacral insufficiency fracture.  My urologist noted it on the CT and out of an abundance of caution, I was given a nuclear radiation bone scan.  He just wanted to be sure that the RCC hadn't found its way into my bones, and it had not.  I recalled a week or so after the scan that about six months prior, I had been pulling weeds at my mother-in-laws house and when one weed was very stubborn, I pulled very hard and my hand slipped and I fell on my butt.  That was probably how it happened and then through repeated pounding from the running I do as exercise, what was likely a hairline fracture got bigger.

    I have also had a brain scan in my time, but it was ordered by an ENT because of persistent ringing in my ears.  That was an MRI and as I am scared to death of MRI's, he was able to get me set up and my insurance paid for an open MRI at a local facility.  That also turned out negative.  I mean, they did find that I had a brain ( a fact that amazed some people in the family), but there was nothing abnormal about it.

    In terms of your recovery, you're only five weeks out.  Your body is not only still in the process of healing, it's in the process of adjusting to its new configuration.  When I had my procedure, I was already semi-retired, so I was able to focus all my energy on my recovery.  Despite wanting to do things much faster, I took everything very slowly and even with that and even with a fairly small lesion that was removed, I found myself getting pretty tired, even at five weeks out, even without having a hectic job.  Given yourself some time Annie.

     

     



     

     

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    My guess

    Annie,

     

    My guess is that your doctor is probably right. For your own state of mind look into a second opinion as most doctors in this field have already been to the dance.

     

    Icemantoo

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member

    Mine was small enough (1.7cm)

    Mine was small enough (1.7cm) that I think they gave it a stage of -1 (just kidding.....mine was 1a).  I did not have bone or brain scans after the surgery, but prior to my surgery, I did have a bone scan performed.  One of the many CT scans I took between when I was diagnosed (December, 2013) and my operation (April, 2016) showed I had, at one time, had a broken tailbone.  The technical term was sacral insufficiency fracture.  My urologist noted it on the CT and out of an abundance of caution, I was given a nuclear radiation bone scan.  He just wanted to be sure that the RCC hadn't found its way into my bones, and it had not.  I recalled a week or so after the scan that about six months prior, I had been pulling weeds at my mother-in-laws house and when one weed was very stubborn, I pulled very hard and my hand slipped and I fell on my butt.  That was probably how it happened and then through repeated pounding from the running I do as exercise, what was likely a hairline fracture got bigger.

    I have also had a brain scan in my time, but it was ordered by an ENT because of persistent ringing in my ears.  That was an MRI and as I am scared to death of MRI's, he was able to get me set up and my insurance paid for an open MRI at a local facility.  That also turned out negative.  I mean, they did find that I had a brain ( a fact that amazed some people in the family), but there was nothing abnormal about it.

    In terms of your recovery, you're only five weeks out.  Your body is not only still in the process of healing, it's in the process of adjusting to its new configuration.  When I had my procedure, I was already semi-retired, so I was able to focus all my energy on my recovery.  Despite wanting to do things much faster, I took everything very slowly and even with that and even with a fairly small lesion that was removed, I found myself getting pretty tired, even at five weeks out, even without having a hectic job.  Given yourself some time Annie.

     

     



     

     

    Thank you so much

    i am actually four months out.. went back to work at five weeks

    how odd you and your broken tailbone but pleased you passed everything

     

    thank you again

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    icemantoo said:

    My guess

    Annie,

     

    My guess is that your doctor is probably right. For your own state of mind look into a second opinion as most doctors in this field have already been to the dance.

     

    Icemantoo

    Thank you Iceman

    Cool

    i will probably endlessly find something to check... but yes. I will go 

    thank you

  • MelBlessed
    MelBlessed Member Posts: 71 Member
    Get the Scan

    it will put your mind at ease. I had bone scan and MRI of brain before surgery. I was fortunate to have worked with my doctor for fourteen years, he is a GI doctor and very thorough. He found the RCC and ordered all my scans and MRI. Then referred me to surgeon.

  • APny
    APny Member Posts: 1,995 Member
    I was also stage 1 with

    I was also stage 1 with negative margins. I did not have a brain and bone scan. I think the reason why doctors don't think they're necessary is because stage 1 is unlikely to have metastasized elsewhere. However, if it would put your mind at ease then perhaps you should insist on it. Personally, I don't want more tests that could incidentally find other things to worry about, and not necessarily cancer. Perhaps I like to stick my head in the sand but it works for me. Everyone is different and you should do what would make you feel better.

    Working full time and taking care of a child by yourself will make anyone exhausted, never mind someone still in recovery from surgery. So that's understandable. Iron tablets will help. I had to (and still am) take 2 Slo Fe tablets every day because I was iron deficient. Check with your doctor what dose you should take.

    As for the voices, time will lessen them but unfortunately, speaking only for myself, they never shut up. This was truly mind changing for me. It's much better now, after almost four years, but those niggling voices are still there in the background.

     

  • klj15
    klj15 Member Posts: 38
    edited February 2018 #8
    I'm a fellow chromie, but I

    I'm a fellow chromie, but I was stage 3. The only scans I have gotten in the past 11 months are CT with and without contrast of my lungs, abdomen, and pelvis. I have asked several doctors about possibly needing a PET scan or other scans to make sure that the cancer didn't sneak off somewhere else that we aren't scanning, but was told no. I get headaches frequently too, but I had those prior to surgery. I did not have any mets, and did not receive any other treatment other than surgery, and iron/Vitamin D for anemia. I feel like my brain is in a fog sometimes though, and that can be scary (especially since I didn't have chemo or radiation). I ended up talking to my doctor about getting on anxiety medication. That has worked for me, but may not be the right answer for you. I still have times when I can't get my mind off of minor aches, pains, abnormalities, but I'm much better now that I am not obsessing over it all the time.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    Thank you lovely people

    you Are all so kind

    Fear is terrible for everyone

    KLj. hi fellow chromie... I am glad I get to share the Journey it’s someone as strong as you

     

    Mel and Apny. Bless you ladies... strength to us all

    Annie

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    edited February 2018 #10
    Hi Annie. Sorry you are

    Hi Annie. Sorry you are feeling this way. It must be overwhelming being so busy and trying to heal at the same time. I can tell you for sure that I get super wobbly legs and for me it all has to do with water intake. Once I drink water and rest for a few minutes that feeling goes away. As for the thoughts, I wish I could send you the link to my Instagram page. I JUST posted a video about this. Take care.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    Annissa

    Cry

    ahhh I can’t see it then

     

    tried the water didn’t work

    spoke to surgeon... will review in 2 weeks... if no improvement will do scan... he doesn’t think it is anything to worry about... but will do the scan if it gives me peace of mind... yeahhhhh

     

     

    Annie