Hi. I'm new here, I'm scared and I need support.

WhatIsLife
WhatIsLife Member Posts: 38
edited December 2016 in Kidney Cancer #1

Hello. The past few months have been one hell of a roller coaster for me. I'm ready to get off the ride but it doesn't seem to ever end!

In the begining of September of this year, I was diagnosed with Kidney Cancer. The Urologist told me I had a large tumor on my right kidney, and that it, and the kidney, would have to be removed. The good news, he said, was there was no indication that the cancer had spread.

So a few weeks later, on September 29th, I had the kidney and the cancer removed, and again, the doctor told me we got it in time, before it had spread. I was feeling good, felt I had dodged a bullet.

Then, a little over a month later, I had an MRI done on my lower back because I have a back injury that dates back years, and my back doctor does routine MRI's and X-rays every few years to see how it is progressing, and what they see is "lesions...concerning for possible metastatic disease."

So I tell my doctor and in December they do a Bone Scan and a MRI Thoracic Spine Scan and find a bunch of lesions "consistent with metastatic disease." Now it seems the only thing left is a Needle Biopsy, which they will be doing on the 27th. And during all this I got myself an Oncologist.

Now my doctors are waiting on the Needle Biopsy before confirming it really is cancer....right now they are just calling it "suspicious." butm it's been my experience it it walks like a duck, it's a duck. And it's obvious they are just trying to give me a little hope.

But what I can't seem to grasp is how, in just 3 months, I went from having treatable cancer to having no cancer to now suddenly having terminal cancer? This has happened so fast that it all seems like some colossal joke.

Has anyone else ever gone through something this crazy and how did you handle it? My emotions are raw right now. It's like I'm waiting for the next shoe to drop. I guess once they get the results of the Needle Biopsy they can give me more information on life expectancy, at least I hope, but since they were so wrong about the cancer in the first place, I just don't know what to think.

Thank you for listening to me, and any advice would be greatly appreciated. This is all so new to me and I am trying to figure a way to put this all in some sort of perspective. Again, thanks for listening!

Kevin

 

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Comments

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Hi Kevin

    Welcome to the club nobody wants to enjoy - and it is one heck of an initiation! I am glad you finally got yourself an oncologist. Could you tell us what state you live in (I assume you are in US). I think others here could recommend the best oncologist for you. What stage/grade was your tumor? Was it RCC? Chromophobe?

    I had a 13 cm tumor and right nephrectomy in December 2013. It was stage 3 RCC and grade 2, with lymphovascular invasion. No other treatment done, and  so far I have been blessed with no recurrence. But everyone's story is so different. Kidney cancer works differently on each person. However, there are others here who have gone through similar stories as you. There has been lots of great treatments developed lately, so please don't lose hope. We have many who have been stage 4 and doing well for years! I am sure they will chime in soon and share their experiences and advice for you.

    I know it must feel like you have been punched in the gut. But hang in there! We will help you through this!

    Hugs

    Jojo

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    edited December 2016 #3
    Don't lose hope

    Kevin,,

    There are many on this board, some doing extremely well with mets after RCC surgery (they were probably there before the surgery). There are a number of new meds  available to the onc. and hopefully if this walks like a duck they will get to the bottom of this. Heres to  good results and if not treatable results. 

    When I started my journey 14 plus years ago little was available where it had matastizied. Now there are many options which will follow my comment

     

    Icemantoo

  • WhatIsLife
    WhatIsLife Member Posts: 38
    edited December 2016 #4
    icemantoo said:

    Don't lose hope

    Kevin,,

    There are many on this board, some doing extremely well with mets after RCC surgery (they were probably there before the surgery). There are a number of new meds  available to the onc. and hopefully if this walks like a duck they will get to the bottom of this. Heres to  good results and if not treatable results. 

    When I started my journey 14 plus years ago little was available where it had matastizied. Now there are many options which will follow my comment

     

    Icemantoo

    Thank you!

    Hi Icemantoo,

    Thank you for you encouraging words. My Oncologist did tell me something similar, such as new meds being made available and that they're always coming up with new treatments, but I feel better hearing it from someone not being paid to say that, if that makes sense. Congradulations on fourteen years! I am happy for you, but to completely honest, in a selfish way, that really gives me hope!

    Kevin  

  • WhatIsLife
    WhatIsLife Member Posts: 38
    Jojo61 said:

    Hi Kevin

    Welcome to the club nobody wants to enjoy - and it is one heck of an initiation! I am glad you finally got yourself an oncologist. Could you tell us what state you live in (I assume you are in US). I think others here could recommend the best oncologist for you. What stage/grade was your tumor? Was it RCC? Chromophobe?

    I had a 13 cm tumor and right nephrectomy in December 2013. It was stage 3 RCC and grade 2, with lymphovascular invasion. No other treatment done, and  so far I have been blessed with no recurrence. But everyone's story is so different. Kidney cancer works differently on each person. However, there are others here who have gone through similar stories as you. There has been lots of great treatments developed lately, so please don't lose hope. We have many who have been stage 4 and doing well for years! I am sure they will chime in soon and share their experiences and advice for you.

    I know it must feel like you have been punched in the gut. But hang in there! We will help you through this!

    Hugs

    Jojo

    Punched in the gut is right!

    Hi Jojo,

    Thank you for welcoming me in the club, although it is a club I would skip is given a choice, but I'm sure that goes for everybody. I live in Florida, in Tampa. I currently see an oncologist from the Florida Cancer Specialists & Research Institute. When I found all this out, I chose this oncologist, Dr Matthew Fink, because I saw him a few years ago after my GP sent me to him when my red blood cells were high, and my GP thought I should have that check out, especially since at the time I was a heavy smoker. Turned out the high red blood cell count wasn't anything to be concerned about, at least I don't think there was any connection to that and my current dilemma as that was over three years ago - but when I got this diagnosis, I remembered that oncologist so I made an appointment with him. But I'm open to suggestions.

    My tumor was renal cell carcinoma, and my urologist orignally said it was stage 3, but once it was removed and he could see it with his own eyes, he said it was actually smaller than he orignally thought, more like a stage 2. He gave it a grade but I don't remember what it was because at the time what was important to me was his diagnosis that I was cancer free, and that I could get back to normal after I had healed from the surgery. As for it being Chromophobe, I don't think so, but I could be wrong. I had to look that up on Google because I didn't even know what that was, and it's possible the doctor mentioned it, but if he did, it went right over my head.

    In fact, if I had not had the MRI done on my back because of my back injury, I wouldn't know today that the cancer had metastasized. Sometimes I wish I didn't have that MRI but I know that's foolish thinking.

    I'm very happy to hear you haven't had any recurrence with you cancer and I hope it stays that way, although I don't know what lymphovascular invasion is, but it seems you have a good handle on it, and I admire that. I hope to gain as much knowledge on my condition as I can because I realize that equals power, but I'm finding a lot of hope from reading stories from people like you! I really appreciate it!

    Kevin

  • rhominator
    rhominator Member Posts: 233
    3 Years and Counting

    Hi Kevin. As icemantoo said, don't lose hope.  Like many others here, I'm stage 4 (via a bone met).  My wife reminded me that I just had my 3 year anniversary of my neph.  When I got my diagnosis, I was semi-retired and we thought the worst--social security diability, final plans, etc.  But things took a different turn: this year I happlily accecpted a full-time job working for NASA. Quite the opposite direction than where I thought I was heading.  So, again, don't lose hope.

  • Footstomper
    Footstomper Member Posts: 1,237
    Who said terminal?

    I bet it wasnt your oncologist. In fact I'd be fairly willing to bet s/he said incurable and you heard terminal - at least thats what I did. I'm another 3year survivor - lets say 3 1/2. I was diagnosed in May2013 had my kidney removed along with a 10cm tumour leaving only the mets in my lungs. Diagnosed Stage 4 (Big and spreading) and Grade 4 (spreading aggressively). I was doomed. Still, I looked at where I'd been, what I'd done, who I'd met and it hadnt been such a bad life.

    And then I didnt die. Incurable is not the same as terminal.

    I've been on a number of different treatments over the years, some have worked, some havent. Some had horrible side effects (buy soft moist flushable toilet paper) some didnt.And here I am chugging along towards my 3rd christmas.

    There are a whole new raft of new treatments coming on line and I truely believe that this disease is going to take the same journey as HIV/AIDS. In the 80's and 90's it was a death sentence now it is a treatable (if incurable) chronic disease. We are heading in the same direction.

    So dont worry Kevin. Some things in life are bad, they can really make you sad

    Otherthings can make you cry and curse

    Youre chewing on lifes gristle, but I reckon the diagnosis was the worst.

    Good luck

    Stomper

  • foroughsh
    foroughsh Member Posts: 779
    edited December 2016 #8
    It's not a terminal desease

    It's not a terminal desease anymore, many drugs and treatments are available now. So do your best to remain positive and don't lose your hope. I know it's easier said than done but many stage four members with stable or shrinked Mets and long term survivors prove you should remain hopeful and vigilant.

    Forough

  • WhatIsLife
    WhatIsLife Member Posts: 38

    3 Years and Counting

    Hi Kevin. As icemantoo said, don't lose hope.  Like many others here, I'm stage 4 (via a bone met).  My wife reminded me that I just had my 3 year anniversary of my neph.  When I got my diagnosis, I was semi-retired and we thought the worst--social security diability, final plans, etc.  But things took a different turn: this year I happlily accecpted a full-time job working for NASA. Quite the opposite direction than where I thought I was heading.  So, again, don't lose hope.

    Thank you rhominator!

    Stories like yours really are making me feel better. This is all so new to me I don't know what to think, but I'm hearing all these different perspectives and I think slowly I'm coming out of my fog and realize that it's not the immediate death sentence that I guess I imagine it would be, and by that I mean death of way of life - look at you - you've actually started a new job! Good for you. I guess in the back of my head I was thinking tomorrow I would end up in a hospital gown, laying in bed all day looking out the window, but it's good to know there is life after the diagnoses! Thank you.

    Kevin

  • WhatIsLife
    WhatIsLife Member Posts: 38

    Who said terminal?

    I bet it wasnt your oncologist. In fact I'd be fairly willing to bet s/he said incurable and you heard terminal - at least thats what I did. I'm another 3year survivor - lets say 3 1/2. I was diagnosed in May2013 had my kidney removed along with a 10cm tumour leaving only the mets in my lungs. Diagnosed Stage 4 (Big and spreading) and Grade 4 (spreading aggressively). I was doomed. Still, I looked at where I'd been, what I'd done, who I'd met and it hadnt been such a bad life.

    And then I didnt die. Incurable is not the same as terminal.

    I've been on a number of different treatments over the years, some have worked, some havent. Some had horrible side effects (buy soft moist flushable toilet paper) some didnt.And here I am chugging along towards my 3rd christmas.

    There are a whole new raft of new treatments coming on line and I truely believe that this disease is going to take the same journey as HIV/AIDS. In the 80's and 90's it was a death sentence now it is a treatable (if incurable) chronic disease. We are heading in the same direction.

    So dont worry Kevin. Some things in life are bad, they can really make you sad

    Otherthings can make you cry and curse

    Youre chewing on lifes gristle, but I reckon the diagnosis was the worst.

    Good luck

    Stomper

    Thank you Stomper

    Now that I think about it, I don't think anyone said "terminal" but me. I haven't even got a full diagnoses yet as I'm waiting to have a needle biopsy done, but when the oncologist told me the scans had found all these lesions on my bones and that they were all consistent with metastasizing cancer, and that really was the only explanation for them, a lot of what he said after that probably went over my head. From what I'm hearing, I guess that's fairly common.

    I do remember him telling me about there being all sorts of medications available, and how he's had patients who have survived years on one medication and when that one stopped working they tried another, and how there are clinical trials, but still, like you said, all I was thinking is I am doomed!

    Well, I am glad I joined this support group because I am finding out my thinking was way off the mark, but apparently pretty common. I guess it's only human nature to think the worse.

    I'm glad you are doing well. I hope I am able to adopt your type of attitude towards this whole cancer thing, because it's looking to me if one doesn't want to go crazy, that's what one has to do. Thank you again for your encouraging words.

    Kevin

  • WhatIsLife
    WhatIsLife Member Posts: 38
    edited December 2016 #11
    foroughsh said:

    It's not a terminal desease

    It's not a terminal desease anymore, many drugs and treatments are available now. So do your best to remain positive and don't lose your hope. I know it's easier said than done but many stage four members with stable or shrinked Mets and long term survivors prove you should remain hopeful and vigilant.

    Forough

    Thank you Forough

    I am learning a lot here, and that it is a manageable disease is probably the most important. I guess when you don't have cancer, you don't really think much about it, at least I didn't, which is crazy because cancer runs in my family. My father died from liver cancer, and I had a brother die from non hodgkin's lymphoma, and another brother who had non hodgkin's lymphoma but survived it. Yet despite all this, I think I was in denial and figured cancer would somehow just pass me by. But you are right, meeting long term survivors does give me hope to remain strong.

    (Now that I think about it: My brother that died from non hodgkin's lymphoma died from it in the late 1970s when I was just a kid, and my other brother that survived it had it about 8 years ago, and I guess that shows how far they have come in means of treatment over the years.)

    Kevin

  • hardo718
    hardo718 Member Posts: 853
    It's really hard....

    .....to keep things in perspective when you're trying to adjust to the initial gut punch, and then you've got the family history to refer back to.  But as many have said, the progress being made is truly incredible lately.  I've had kidney cancer and have 5 friends that have cancer of different types; prostate, 2 with breast, thymus, bladder and all are doing fairly well on various different treatments.  I guess my message is not to lose hope, even though you find yourself on this crazy wild roller coaster.

    Celebrate life,

    Donna~

  • WhatIsLife
    WhatIsLife Member Posts: 38
    edited December 2016 #13
    In a case like this, perspective goes out the window...

    ...at least it did for me, but I think I am getting it back, thanks to all the common sense and feedback I've been getting here on this support network. There is a lot of common sense here, something you won't get from any doctor. I'm not putting down doctors, but people living with cancer 24/7 know the score. Thanks Donna for your encouraging words, and I do think this roller coaster I've been on might finally be slowing down a bit!

    Kevin

  • foroughsh
    foroughsh Member Posts: 779
    edited December 2016 #14

    Thank you Forough

    I am learning a lot here, and that it is a manageable disease is probably the most important. I guess when you don't have cancer, you don't really think much about it, at least I didn't, which is crazy because cancer runs in my family. My father died from liver cancer, and I had a brother die from non hodgkin's lymphoma, and another brother who had non hodgkin's lymphoma but survived it. Yet despite all this, I think I was in denial and figured cancer would somehow just pass me by. But you are right, meeting long term survivors does give me hope to remain strong.

    (Now that I think about it: My brother that died from non hodgkin's lymphoma died from it in the late 1970s when I was just a kid, and my other brother that survived it had it about 8 years ago, and I guess that shows how far they have come in means of treatment over the years.)

    Kevin

    Yes, you're right. About

    Yes, you're right. About kidney cancer's treatment s it's clear that im last five, six years they have done a huge progress, as rcc doesn't respond to chemotherapy so those with advanced cancer used to have low chance of surviving but oncologists have come up with targeted therapy, immunotherapy, radiotherapy,... And these are Promising. So the survival rate that you see on the internet is so very oit of dated.

    Forough

  • foxhd
    foxhd Member Posts: 3,181
    just remember

    We are living with cancer, not dieing from cancer.

  • jtobeck
    jtobeck Member Posts: 1
    I am in a similar sitution

    You and I are in the same age group.  Found a tumor on my right kidney while doing an ultrasound for something else.  Had a right radical nephrectomy on 21 November.  Stage T3A Fuhrman grade of 3.  Tumor was 10-15 lbs.  I am in that wait and see stage, and go in for a baseline CT in January.

    Take heart.  There are many treatments available.  You don't mention what part of the country you are in, but get to a place that has a good GU oncology department. I went to MD Anderson (Houston) and can highly recommend it.

    My faith has helped me to worry about the things I can change and let the rest go.

     

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    edited December 2016 #17

    In a case like this, perspective goes out the window...

    ...at least it did for me, but I think I am getting it back, thanks to all the common sense and feedback I've been getting here on this support network. There is a lot of common sense here, something you won't get from any doctor. I'm not putting down doctors, but people living with cancer 24/7 know the score. Thanks Donna for your encouraging words, and I do think this roller coaster I've been on might finally be slowing down a bit!

    Kevin

    Kevin, don't be hard on

    Kevin, don't be hard on yourself....we have all been there! We all jump to the worst conclusion when you hear that "C" word....and given the history in your family, it would be a bit panicky. This of course still needs to be taken seriously. And I want to reinforce my concern - see a highly recommended RCC oncologist. Please! Even though there are many great treatments out there, this is still all fairly new, and kidney cancer is unique. I am from Canada so I cannot recommend anyone for your area. Can I please suggest that you join another cancer forum called Smartpatients. A lot of us here belong to that one too. There is another wealth of information there. Please inquire about recommended RCC oncologists (in Canada we call them uro-oncologist). Let me know how that goes!

    Hugs

    Jojo

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Welcome jtobeck

    It sounds like you already have a great handle on this! Good for you! I hope your baseline CT goes very well, and keep up with your follow up scans!

    Hugs

    Jojo

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited December 2016 #19
    Hi there Kevin! Glad you

    Hi there Kevin! Glad you found this site with the most wonderful people who truly want to inform and support you!

    It is okay to feel any way you are, because are feelings are not right nor wrong..they are simply our emotions.

    But as you gain more information and a follow a treatment plan you'll already have built up this support group! We'll be here for you on your journey if you want us to, I mean.

    Besides you don't even know yet what these "lesions" are, right? No matter what, WE'll be here for you, why? Because you deserve it!

    Sending you calming thoughts, peace of mind with a huge dose of serenity my dear!

    Hugs, Jan

  • WhatIsLife
    WhatIsLife Member Posts: 38
    Jojo61 said:

    Kevin, don't be hard on

    Kevin, don't be hard on yourself....we have all been there! We all jump to the worst conclusion when you hear that "C" word....and given the history in your family, it would be a bit panicky. This of course still needs to be taken seriously. And I want to reinforce my concern - see a highly recommended RCC oncologist. Please! Even though there are many great treatments out there, this is still all fairly new, and kidney cancer is unique. I am from Canada so I cannot recommend anyone for your area. Can I please suggest that you join another cancer forum called Smartpatients. A lot of us here belong to that one too. There is another wealth of information there. Please inquire about recommended RCC oncologists (in Canada we call them uro-oncologist). Let me know how that goes!

    Hugs

    Jojo

    Thanks Jojo!

    I had not heard of Smart Patients, so I looked it up and it looks promising. I'm always interested in any site, be it online or in person, that offers help and/or information. Tampa is the home to the Moffitt Cancer Center, which I understand to be rated #6 in the United States for cancer treatment, at least by U.S. News & World Report. In fact, I just found out Moffitt has support groups for cancer patients every Tuesdays between 1-2pm, and I am going to try to go to some of these support group meetings which will give me a good chance to check out the place.

    I think it's part of the University of South Florida campus, which is huge - I had to go there for one of my bone scans, although I'm not sure if it's part of USF or not. So much to learn! Thanks for the suggestions and thanks for your concerns, it really helps a lot!

    Kevin

  • WhatIsLife
    WhatIsLife Member Posts: 38
    edited December 2016 #21
    foxhd said:

    just remember

    We are living with cancer, not dieing from cancer.

    I will remember that

    Those are words to live by! Thanks for reminding me, foxhd. I appreciate it.