Stage I - first 3mth scan showed liver lesion

RMolinaro414
RMolinaro414 Member Posts: 43

A bit of my background - had baby in July '14 returned to the hospital 10 days later to have my appendix removed when they found the tumor on my kindney. Skip to September '14 had my right kidney fully removed. My patholgy report came back and I was staged T1b. At my follow-up my doctor said "Everything is great. We caught it super early and the chances at this stage of recurrence is very, very low. Get back to being a Mommy"

 

Well, here I am less than a year later and can't get a straight answer. I went for a CT with contrast follow-up MRI (which was bad imaging) and now they want me to go for PET scan to rule out these "suspicious lesions" My urologist is trying to be very positive telling me it could just be a cyst or somethign along those lines, but I feel like they should be able to tell from all the scans I've received. Is it possible for it be liver mets so quickly? I thought this was a slow moving cancer? Maybe I'm just overy worrying myself. I am praying and hoping this lesion is totally unrealted, but I am sick with worry. 33 with two small children. To say I'm scared is an understatement. Anyone with any info or expeiernece is welcome. Thank you so much.

 

I'm going to attempt to put this behind me and enjoy my baby girls's First Easter

 

Ryan

Comments

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Hi Ryan,
    Welcome to this

    Hi Ryan,

    Welcome to this forum...sorry for the initiation you had to go through to join! What a rollercoaster year for you!

    From what I know, Stage T1b is very, very good. I don't think your liver lesions could be mets. What did the former scan show? Were they there then? I had what they thought was a lesion on my liver, but it was a gathering of blood vessels (the doctor best explained it as a birth mark). I know it isn't easy to not be too anxious about it....that is completely normal. Every ache, every twinge, your mind will immediately jump to conclusions now. But try not to worry. See what the results are, and go from there.

    Keep us posted, we will help you through this!

    Enjoy your Easter with your lovely family.

    Hugs,

    Jojo

     

  • RMolinaro414
    RMolinaro414 Member Posts: 43
    Jojo61 said:

    Hi Ryan,
    Welcome to this

    Hi Ryan,

    Welcome to this forum...sorry for the initiation you had to go through to join! What a rollercoaster year for you!

    From what I know, Stage T1b is very, very good. I don't think your liver lesions could be mets. What did the former scan show? Were they there then? I had what they thought was a lesion on my liver, but it was a gathering of blood vessels (the doctor best explained it as a birth mark). I know it isn't easy to not be too anxious about it....that is completely normal. Every ache, every twinge, your mind will immediately jump to conclusions now. But try not to worry. See what the results are, and go from there.

    Keep us posted, we will help you through this!

    Enjoy your Easter with your lovely family.

    Hugs,

    Jojo

     

    I cannot thank you enough for

    I cannot thank you enough for the reply. I just needed SOMEONE connected to the situation..ya know? My family is beyond supportive, but its not the same. I'm trying not to freak out and hoping for the best. I just have so much conflicting information because my MRI wasn't clear. The stupid tech rushed me through. My docs are not thrilled to say the least. There are also conflicting reports if they were there before b/c they are relatively small from what I've been told. However, I was told not to cancel my upcoming vacation and whatever it is they will deal with it. That's my plan. Taking my baby girl on her frist Disney trip as my Mother's Day present and it will be my lil guy's 4th time in 4 years. Can you tell I love Disney? =) Thanks again Jojo! I really needed it today. Hope all is well with you!!

  • sblairc
    sblairc Member Posts: 585

    I cannot thank you enough for

    I cannot thank you enough for the reply. I just needed SOMEONE connected to the situation..ya know? My family is beyond supportive, but its not the same. I'm trying not to freak out and hoping for the best. I just have so much conflicting information because my MRI wasn't clear. The stupid tech rushed me through. My docs are not thrilled to say the least. There are also conflicting reports if they were there before b/c they are relatively small from what I've been told. However, I was told not to cancel my upcoming vacation and whatever it is they will deal with it. That's my plan. Taking my baby girl on her frist Disney trip as my Mother's Day present and it will be my lil guy's 4th time in 4 years. Can you tell I love Disney? =) Thanks again Jojo! I really needed it today. Hope all is well with you!!

    Scans show up lots of stuff that aren't cancer

    Take a deep breath and enjoy that vacation. Lots of things show up on scans that are not always cancer. In most instances, a CT scan will reveal any liver tumors from what I have read but I am not a doctor (just a wife researching and supporting my husband who had a Stage 3 tumor). 

     

    Which Disney park? I just got back from three days at Disneyland with my daughter and husband and my entire body hurts!!!

  • Footstomper
    Footstomper Member Posts: 1,237

    I cannot thank you enough for

    I cannot thank you enough for the reply. I just needed SOMEONE connected to the situation..ya know? My family is beyond supportive, but its not the same. I'm trying not to freak out and hoping for the best. I just have so much conflicting information because my MRI wasn't clear. The stupid tech rushed me through. My docs are not thrilled to say the least. There are also conflicting reports if they were there before b/c they are relatively small from what I've been told. However, I was told not to cancel my upcoming vacation and whatever it is they will deal with it. That's my plan. Taking my baby girl on her frist Disney trip as my Mother's Day present and it will be my lil guy's 4th time in 4 years. Can you tell I love Disney? =) Thanks again Jojo! I really needed it today. Hope all is well with you!!

    Stage 1 is really good - not

    Stage 1 is really good - not a good as not having cancer but pretty good all the same. Oncoloists are notorious for playing their cards close to their chests. Enjoy your holiday.

  • cancerat46
    cancerat46 Member Posts: 52
    I can understand your worry

    I'm a worrier be nature.  Fight the urge!  Enjoy your family and a great trip and come back refreshed and revitalized from good family vibes.  Then use those vibes to get through any more tests and approach whatever the results are with positive action. If there is something they found it sooner rather than later and that's a good thing!  Sending my good vibes your way!

     

     

     

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Scans show everything

    Ryan,

    Have to mimic the sentiments I've already seen... scans are very good at showing that no two people are exactly alike, and we all have warts inside our bodies...  It's pretty rare to see fully formed metastases after only 6 months, especially with T1b.  Sounds the radiology department needs an overhaul... I would be pretty frustrated as well after so many tests.    

    I totally get how you're feeling, however... 35 with my first child on the way.  This wasn't in the long-term plan.  

    Hopefully they will be ruled out as something trivial.  If it were me, I'd be pressing for an answer ASAP so if treatment were needed, it can be done.  Always earlier the better.

    - Jay 

  • Indiamad
    Indiamad Member Posts: 2
    Haemangioma?

    I wonder if the lesion is a haemangioma (a benign mass)?  I have one on my liver and have been assured it is nothing to worry about.  I was diagnosed almost 3 years ago at stage 1 as well when my son was only 3 years old.  I understand your fear when you have a young family but try not to think the worst.  I have spent so much time worrying these past 3 years post sugery and I know it does me and my body no good.  Let us know how things go and wishing you the best news.

  • RMolinaro414
    RMolinaro414 Member Posts: 43
    Thanks everyone. This board is a lifesaver

    I am so happy I posted. For the first time in nearly a week I've been able to calm down. Simply talking to others that have experience with this disease has been incredibly helpful. I am hoping for the best and truly believe in my heart or hearts that this is unrelated. However, with this disease one can never be too careful. I don't understand how they aren't able to make a clear diagnosis based on all the tests I have had done. I'm a native New Yorker so my husband called Sloan this morning in hopes of getting a second opinion. If this does turn into something at least we know we'll have some of the best working on me. Wishing you all good luck!

  • nsb748
    nsb748 Member Posts: 89
    Indiamad said:

    Haemangioma?

    I wonder if the lesion is a haemangioma (a benign mass)?  I have one on my liver and have been assured it is nothing to worry about.  I was diagnosed almost 3 years ago at stage 1 as well when my son was only 3 years old.  I understand your fear when you have a young family but try not to think the worst.  I have spent so much time worrying these past 3 years post sugery and I know it does me and my body no good.  Let us know how things go and wishing you the best news.

    Disclaimer:  Everyone is

    Disclaimer:  Everyone is different, I am not a doctor, I only speak from my personal experiences, and what was said to me regarding my own rcc experience.

     

    I have a cyst on my liver as well.  multiple doctors told me that it is no big deal, and fairly common.  (My surgeon said that he sees one on roughly a quarter of his patients) 

    I was stage 1 as well (partial neph for my 2.2cm clear cell)

    That's not to say that cysts are good. There is a potential for them to grow and cause problems (small chance I think). Since we get scanned regularly anyway, we can keep an eye on it.

    Get as many opinions as you need to put yourself at ease, but know that your chances of liver mets, (or any mets for that matter) are pretty low. 

     

     

  • Allochka
    Allochka Member Posts: 993 Member

    Thanks everyone. This board is a lifesaver

    I am so happy I posted. For the first time in nearly a week I've been able to calm down. Simply talking to others that have experience with this disease has been incredibly helpful. I am hoping for the best and truly believe in my heart or hearts that this is unrelated. However, with this disease one can never be too careful. I don't understand how they aren't able to make a clear diagnosis based on all the tests I have had done. I'm a native New Yorker so my husband called Sloan this morning in hopes of getting a second opinion. If this does turn into something at least we know we'll have some of the best working on me. Wishing you all good luck!

    I really hope that you'll be

    I really hope that you'll be able to arrive at conclusive diagnosis soon. I must admit your post freaked me out a bit :-) 

    but most probably we both are worrying about nothing, taking into account Stage 1 diagnosis :-)

  • APny
    APny Member Posts: 1,995 Member
    Allochka said:

    I really hope that you'll be

    I really hope that you'll be able to arrive at conclusive diagnosis soon. I must admit your post freaked me out a bit :-) 

    but most probably we both are worrying about nothing, taking into account Stage 1 diagnosis :-)

    Getting a second opinion is

    Getting a second opinion is very smart. Hope they can put your mind at ease.

  • donna_lee
    donna_lee Member Posts: 1,023 Member
    APny said:

    Getting a second opinion is

    Getting a second opinion is very smart. Hope they can put your mind at ease.

    Hope and believe in good things

    Yes, I already had mets to the liver at the time of surgery in 2006, and had the left lobe removed.  They also located a number of questionable "cysts" during x-rays on the OR table, for which they took slices and did biopsies.  None of them was cancerous.  Over the years, my CT's have shown other cysts or lesions, but they have remained stable.  They even found an hamartoma, confirmed with US.  That's what we call a strawberry birthmark on the skin-highly vascular glob of tissue.  No cause to worry....except when they find one in you.

    CT's and PET's are not cheap. And with a PET, you need to avoid "little people" for a couple of days until the radiation 1/2 life is reduced.  2nd opinion and/or a better CT would be my choice.  It also helps if the same radiologist is reading your results.

    Have Hope.

    Donna

     

  • RMolinaro414
    RMolinaro414 Member Posts: 43
    Feeling better

    Thank you Donna. Your words are very encouraging. I wasn't aware about the PET scan. I'm giong to talk this over with my doc in the morning. He's been away for a few days due to the holiday. I'm not 100% comfortable with the referring surgeon and the lack of answers as I mentioned. I'm going to see if he can get me a second opinion within the hospital and perhaps a less invasive test such as sonogram or liver specific CT instead of the PET scan for the time being. I would like to meet with an oncologist as well just to be as informed as possible. Thank you again. This board really is so helpful! I hadn't slept a full night until I decided to share.

  • AndyE
    AndyE Member Posts: 51
    Similarly to you, I was

    Similarly to you, I was diagnosed with a T1b kidney tumor last November, and had it removed December 15 via open partial neph.  My doctor told me the exact same thing...very low chance of it having spread...actually about 6 doctors told me that, and once the pathology came back indicating negative margins and that the thing hadn't broken the capsule, the chances of it having spread went down even further according to my surgeon.  As a natural worrier myself, every ache and pain became cancer in my brain, and I have been to the doctor several times to have things checked.  One such pain was so intense that I was convinced it was bone mets.  To appease me (I think) they oredered a bone scan...it came back fine.  I brought up the fact that most bone mets are lytic, and don't register on bone scans, so he also ordered xrays of the area which would show lytic mets....still nothing.  Then my surgeon sent me for an abdominal ct scan with and without contrast at 4 months just to check things out, and once again, all clear....NED.  After all this--after I calmed down and stopped worrying a bit--the urologist explained to me that at the time of my diagnosis they scanned my chest and abdomen and all (but the kidney) was clear.  The chances of another tumor forming in 4 months time and growing large enough to be detected or in my case large enough to cause pain are about zero.  This is why my surgeon didn't suggest a scan until 1 year, but he did one at 4 months because of some suspected adheasions and possible complications like that.  I would think you are in the clear if your original scans at the time of diagnosis came back clear, but again, I am not a doctor.  You and I are lucky believe it or not...T1b is very treatable....it isn't easy, and recovery stink....a lot....but odds are that you will survive to be with your beautiful family.  And you are right, this board is a wonderful thing...the folks here helped me through those very difficult months, and I am handling my "new normal" much better now than I would have otherwise because of them.  Blessings to you.

  • Allochka
    Allochka Member Posts: 993 Member

    Feeling better

    Thank you Donna. Your words are very encouraging. I wasn't aware about the PET scan. I'm giong to talk this over with my doc in the morning. He's been away for a few days due to the holiday. I'm not 100% comfortable with the referring surgeon and the lack of answers as I mentioned. I'm going to see if he can get me a second opinion within the hospital and perhaps a less invasive test such as sonogram or liver specific CT instead of the PET scan for the time being. I would like to meet with an oncologist as well just to be as informed as possible. Thank you again. This board really is so helpful! I hadn't slept a full night until I decided to share.

    Hi, as I mentioned on my

    Hi, as I mentioned on my other thread, we've had investigated my fiance's liver lesion with second opinion of his CT scan. It appeared to be a cyst, it was visible on scan all the time . The second-opinion radiologist explained that when there is something of zero clinical importance on the scan - it is officially allowed not to describe it. As your doctors mentioned that your lesions were also present on old scans - then it most probably means that at that time radiologists simply didn't bother to mention them. but these are not new lesions at all.

    And we were also told that mets for Stage 1 are extremely rare :-)

    Good luck to you, enjoy vacation with your kids!