Diagnosed stage 4 just one week ago; very scared and alone.

I'm sorry you've joined us .  You are NOT alone.  I know you think so physically, but the people here at CSN are your angels.  Come talk to us anytime. 77

Regarding your surgery:  seek out a second/third/thirtieth opinion.  I know nothing about stage 4, but have they discussed removing the node first to be able to access the kidney?  If you're in pain, they need to do something.  Ask your GP to give you some pain meds pronto.  It's inexcusable that you're suffering needlessly.

I totally hear you about the bad news part.  I've been told 3 times I've had 3 cancers.  I'm coming to accept the fact I may not see 45 (42 now), so I'm living in the moment.  Crossing my "t's" so to speak.  It's good that you're healthy otherwise- that carries a LOT of weight when it comes to treatment options. Make sure to get all your vax upto date as you don't want to be stricken with pneumonia, shingles, flu etc while your little body is busy fighting the cancer.  Get lots of rest, eat well, and find something to occupy your mind.  I go to the casino a few times a week with $20 to play the slots as it's physically non-taxing, and fun for a bit.  Cheaper than fast food . (though it's good I know when to stop and don't blow my mortgage $)

Please message me anytime.  I truly feel for you, and sending healing vibes and best wishes.

Hi Thomas,

I am so sorry to hear your news, I know something of how it feels. I am stage 4, I have tumours back in my kidney from after the op, growths on my lungs and cancerous lymph in my chest. I spent a lot of time alone when I found out, but by choice, I feel sad that you have been dealing with this alone.

Well as the others have stated you won't need to be alone now, this site offers good support. I hope it doesn't take long before you hear something, and as the others have said, if you are not happy get a second opinion. There may be quite a few who can make recommendations to you, when it comes to Kidney Oncologists, that should help.

Take care, stay in touch:)

Djinnie x

Djinnie said:

Join The Family!!

Hi Thomas,

I am so sorry to hear your news, I know something of how it feels. I am stage 4, I have tumours back in my kidney from after the op, growths on my lungs and cancerous lymph in my chest. I spent a lot of time alone when I found out, but by choice, I feel sad that you have been dealing with this alone.

Well as the others have stated you won't need to be alone now, this site offers good support. I hope it doesn't take long before you hear something, and as the others have said, if you are not happy get a second opinion. There may be quite a few who can make recommendations to you, when it comes to Kidney Oncologists, that should help.

 

Take care, stay in touch:)

 

Djinnie x

Thomas, may I call you Tom? as we get to know each other pretty well here. First things first. You are not dieing from cancer. You are LIVING with cancer. To prove it, just spend some time reading past posts. It starts as a shot to the gut. But you pick yourself up and start punching back. There is a lot of good stuff happening. Get to know us and you will increase your confidence. No doubt about it though. Cancer sux big time. Cry about it for a bit. Then learn what you can. Then tell us all about it as the years go by.

ThomasR said:

I have actually had 3

I have actually had 3 opinions.

The first was a urologist who said he couldnt surgically remove it because of the lymph nodes that were wrapped around the artery supplying blood to the kidney.

The second was a surgeon/urologist who said he could, but the oncology dept associated with him really didnt have a lot of options and was anxious to enroll me in a research program that I'd be required to sign releases for stating I'd seak no other treatment outside their study for a vaccine.

The 3rd; Seattle Cancer Care Alliance also said that the nephrectomy (sp?) would be complicated for the same reasons as the first, but their oncologist at the Fred Hutchinson Cancer research center in seattle had so many more options for treatment to possibly reduce those lymph nodes to clear a path for surgery.

I'm seeing Dr Scott Tykodi on wednesday. Among some of his treatment are IL-2 which I am certainly open for as evil as it sounds.

I have good days right now and horrible days emotionally. Good and poor physically.

I honestly never thought I'd be in this position.

I've been seaking high and low for success stories and survovors. I refuse to believe I will die from this and I'm up for the fight of my life; the fight for my life.

Someone has to be in the percentage that survives, or otherwise it would be 0% probability right? Why not me?

Hi Thomas, Believe me we can all identify with how you are feeling right now, it's not easy and your head must be still reeling. I first got kidney cancer in 2003 then it returned again early last year. Fortunately, there are more treatments available now than back in 2003, it is a case of finding the right fit.

Reducing the growths prior to operating sounds a promising option. There have been a few members in the past whose treatment has run along that format. We also have members who have been successfully treated with IL-2 particularily Fox. I am glad you have options on the table, you will have a workable plan in place before you know it. Don't despair and don't give up you will work through this. 

Hope all goes well next Wednesday, let us know how you get on:)

Djinnie x

The first year, I had 8 Kidney stone  treatments, (lipatripsy). Lost my job due too the down time. (Maint for Sr. Mobil Park), I take care of people! even now, though as of lately I've been near useless.  It took a sweet little Philipino nurse with a suggestion of Radio active imaging to find the problem in this God forsaken hell hole town. I work for a living! and self esteem! thats what I do.  Or did, now I starve and for whatever reason, keep fighting.  Weaker, slower, and more and more lonely. I get $200 a month fr: SS, and $25 a month food stamps, let me add to try and supress the anger that I am a combat veteren of the United States Navy!  Honorably discharged! Or was Honorable. I believe they have me flagged to die so they dont have to pay me. And they dont.  It took them this long to beat me down to second guessing myself, my worth, and any hope of a tomorrow. Should have myseriously disappeared into the desert. 

mjl66 said:

Husband diagnosed

Hi, I'm new also.  My husband (age 56) was diagnosed about 9 weeks ago.  Up until that time he has always been very healthy.  He never got a cold, or the flu or anything, not even when I had them.  He had a cough that wouldn't go away so the doctor sent him for a chest xray.  The xray caught a small portion of his kidney and the doctor saw something that shouldn't be there.  Needless to say they took a CT scan and found a softball size tumor in his right kidney and 6 small nodules in his lungs, two of which were the size of a quarter, the rest are very small.  They sent us to a very respected cancer hospital in Buffalo NY about and hour away from us.   He saw the kidney specialist and the first thing he told my husband was that it was very bad and he needed to come back for another CT scan and a biopsy.  We had to wait for 2 weeks for the biopsy because he (the doctor) wanted a specific surgeon to do it, who was according to him "the best."  So we went for the CT and then went back for the biopsy.  They biopsied his lung because they said that it would show if the cancer was in fact comming from the kidney.  We argued with him and said biopsy the kidney, or do both! Nope. 2 more weeks went by and we went back for the results.  Well, the doctor made us wait over 45 minutes in the exam room because he was running behind, then proceeded to tell us that from the CT, he "thinks" the cancer is also in his liver but can't say for sure because the tumor is large and pressing against the liver.  They couldn't tell us what type of cancer it was because the results came back inconcusive.  Oh, and the wrong doctor performed the biopsy, so they needed to do another one, so the one that they originally wanted would do it, and he would make sure that he got a good sample. He did tell us that my husband had only about a year to live. So, we went for a second biopsy.  Now mind you, my husband was awake for the entire proceedure, he heard the technician on both occasions say, "I have a sufficient sample, we have cells present."  My husband ends up with a chest tube after that biopsy because his lung collapsed.  Not more than and hour later they have to reinsert the tube because it wasn't put in correctly (by the best doctor).  Now he has to stay over night. Well, one night turned into five, with yet another surgery to repair his lung and that doctor actually taking one of the tumors right out because she had the for thought to ask if they had a sufficient sample...the answer was again, no.  So, back for the results, we are told again that they are inclusive but the cancer in his lungs has spindle cell characteristics and that he has a very aggressive killer cancer and get your affairs in order.  Enjoy what little time you have left with your family, take a trip.  REALLY, take a trip? Ok, sorry, but that is what the doctor said.  So at this point, six weeks later we finally see an onchologist for the first time in this mess. He says that he has some treatment that has worked for another patient, but he wanted my husband to have the kidney taken out and the liver resectioned.  The two doctors disagreed about the surgery. Then sent us home to think about what we wanted to do.  We called Cleveland Clinic.  They got us in in less than a week.  In one day they did more for us than the previous hospital did in 6 weeks.  The very first doctor that we met with was an onchologist who specialized in kidney cancer.  When we asked him how long my husband had, he said, I can give you statistics, but I don't know how he will respond to treatments, so I really can't give a definite answer. He could have a year or he he could have 5 or 10 or more.  That same day without an appointment, we had a CT, blood work and met with a kidney surgeon and then back to see the onchologist.  The surgeon spoke with us and said that he talked with the onchologist and they both agreed that the surgery would be extensive and recovery would be long. Valuable tiime would be lost to try to control the cancer and stop it from spreading.  They also had a clinical trial that was about to close in 2 weeks that showed promise.  The doctor discussed it with us and told us that he will be agressive in treatment, and if we are willing to fight he will do what he can. WE went back for more tests to qualify for the trial, bone and brain scans all came back good as with everything else.  Everything is functioning normally, Kidney, liver, everything.  He's HEALTHY!   So my husband had his first treatment last week.  He is in a clinical trial with a new imune therapy drug call mpdl3280a.  The trial has 3 drugs that are being looked at, mpdl3280a, avastin, and stutin (spelling?) my husband was randomly chosen to receive the mpdl3280a along with the avastin.  Honestly I felt like we hit the lottery.  So far so good, he gets tired but feels good. His next treatment is December 2.  I just wish I could get the words out of my mind that the first hospital told us. Those words changed our life.  It's difficult to live, to be normal, to be happy.  We don't do the things that we use to.  I don't want to see people and answer questions or see their concerned faces.  My husband and I are very social people but our personal life is private.  Unfortunately we live in a very small town where gossip is a way of life, and word travels fast.  The RN that is our "tour guide" through this said that we have to learn to be normal.  The cancer shouldn't be in control of our life, we should be in control of the cancer.  It's just so hard after you have been given an expiration date.  So that's my (our) story.

Hi Mj, That was quite a story, I am so glad that treatment wise it ended promisingly. You have had to deal with the most slip shod terrible treatment and lack of care. I was horrified that a Doctor would treat a patient with so little empathy, to real off such horrific information and then suggest a Holiday omg! what the heck! I have never had a doctor yet who gave me a date of departure, they should never offer a guesstimate, it may be different if I asked but I never would. 

I just wonder what did the first doctor have that impressed you so much that the second was lacking, what made you pay greater credence to the first doctors prognosis (from probably outdated statistics) than the second one who is now in charge of the life saving treatment. We all do the same sort of thing I know, but it really doesn't make sense does it?

Your RN is right we shouldn't let Cancer control us but to be honest I don't think we do, otherwise we wouldn't fight on 24/7, no matter how exhausting and painful. In my experience fighting is inherent to us all. I understand trying to live your life in 'normal' mode but what's normal now. We probably are living life as normal as we can get it, but within a different framework.

I hope you experience the best of treatments now and that the trials show positive results. I also hope you can recover the enjoyment of your lives, lost through mindless comments. By the way there is a member here called Fox who will tell you how to handle inquisitive locals, he has it down to a T. He shuts them down by telling them he feels just great and then flummoxes them by immediately asking how they are doing. He probably says it through a big grin too!

All the best:)

Djinnie x

Djinnie said:

Diagnosis!

Hi Mj, That was quite a story, I am so glad that treatment wise it ended promisingly. You have had to deal with the most slip shod terrible treatment and lack of care. I was horrified that a Doctor would treat a patient with so little empathy, to real off such horrific information and then suggest a Holiday omg! what the heck! I have never had a doctor yet who gave me a date of departure, they should never offer a guesstimate, it may be different if I asked but I never would. 

I just wonder what did the first doctor have that impressed you so much that the second was lacking, what made you pay greater credence to the first doctors prognosis (from probably outdated statistics) than the second one who is now in charge of the life saving treatment. We all do the same sort of thing I know, but it really doesn't make sense does it?

Your RN is right we shouldn't let Cancer control us but to be honest I don't think we do, otherwise we wouldn't fight on 24/7, no matter how exhausting and painful. In my experience fighting is inherent to us all. I understand trying to live your life in 'normal' mode but what's normal now. We probably are living life as normal as we can get it, but within a different framework.

I hope you experience the best of treatments now and that the trials show positive results. I also hope you can recover the enjoyment of your lives, lost through mindless comments. By the way there is a member here called Fox who will tell you how to handle inquisitive locals, he has it down to a T. He shuts them down by telling them he feels just great and then flummoxes them by immediately asking how they are doing. He probably says it through a big grin too!

All the best:)

Djinnie x

Thank you for the very wise words, I never thought of it that way.  You know I didn't want my husband to go to the first hospital from the start. Although it's considered to be one of the leading cancer institutes in Western NY, I had friends that had gone there and received the same treatment that are still surviving many years later.  I also had a friends father pass away from lack of treatment for bladder cancer that spread while waiting for them to make a decision on treatment.  I had this feeling that it wasn't' the right place, from the day we were sent there by his GP.  To add to that, after my husbands first botched biopsy he said that he felt like nothing more than an experiment to them.  I didn't lke the doctor from the start.  I think it was just that we were in such a tail spin from one day being happy and living, to being told that our life is going to change drastically, and that was that. Every time we saw that doctor he had this sad look on his face and didn't offer any hope.  I started researching right after the first appointment there.  I keep really believe that God lead us to the right place with the right medications.  Cleveland has been wonderful.  You are right, I need to put those words from and incompetent, unfeeling doctor out of my mind. 

I'm so happy that I joined this site, it really helps.  I'm hoping my husband will join us, I think it will help, but I don't know if he will.  He's not as open as I am. 

I'm taking him out grocery shopping with me  today. We have to get back to "normal." Thank you for that! This cancer has to stop telling us what to do. 

I'm looking forward to hearing from Fox, he sounds like my kinda guy!  Maybe he can get my husband to take advantage of the kind people here, and become part of the family.

By the way I heard about Smart Patients on this site and joined.  I met several people that are in the same trial as my husband.

Thanks again! 

MJ

Dirty Red said:

23 Months of humiliation

The first year, I had 8 Kidney stone  treatments, (lipatripsy). Lost my job due too the down time. (Maint for Sr. Mobil Park), I take care of people! even now, though as of lately I've been near useless.  It took a sweet little Philipino nurse with a suggestion of Radio active imaging to find the problem in this God forsaken hell hole town. I work for a living! and self esteem! thats what I do.  Or did, now I starve and for whatever reason, keep fighting.  Weaker, slower, and more and more lonely. I get $200 a month fr: SS, and $25 a month food stamps, let me add to try and supress the anger that I am a combat veteren of the United States Navy!  Honorably discharged! Or was Honorable. I believe they have me flagged to die so they dont have to pay me. And they dont.  It took them this long to beat me down to second guessing myself, my worth, and any hope of a tomorrow. Should have myseriously disappeared into the desert. 

Hello Red,

I know that nothing I can say can in any way ease your situation, and I am sorry for that! I wish it were different! Is there no veteran aid and assistance centres in the US to help you? You haven't actually identified your health issue apart from kidney stones, I am guessing there is a tumour there too then as you have come to this site. If that is the case what treatment are they providing under your service insurance coverage? I see on your CSN Space you have used black salve,  if you don't mind me asking, do you have skin cancer as well, or was it in liquid form?

You don't appear to have had much support recently, I don't pretend to understand what 'having you flagged to die' means, coming from the UK this is going over my head a bit. I just wanted to say if you need support through your experience and treatment of kidney cancer we would be here for you.

Djinnie 

Hi Thomas & MJ,

  I am so sorry you two have joined our ranks. But I want to tell you that life goes on and you will get to "normal" again, tho it will be a new normal. Your cancer reality will bubble just below the surface of your consciousness, but there can be days and days and even weeks and weeks that go by without it breaking the surface. The trick is to keep yourself busy. Get out. Make yourself get up and get going - it can be the smallest thing that you do that day, like a walk outside, a trip to the grocery store, out to the movies, make yourself call up that friend and make a social date. If you don't want to talk about your cancer, don't. Just smile and say you feel great and friends will get the message. If you do want to talk about it, talk about it.

I've gone through periods when I didn't tell anyone, or just one or two people, to telling everybody. I'm at the point now where it's no secret. Most people don't want to hear too many details - it makes them feel awkward and vulnerable themselves. They dont know how to respond. Your lucky if you have one or two friends who can "take it," if you know what I mean. It's helpful to have a place to dowload.

I suggest scheduling activities in advance so you always have something fun to look forward to. Pepper your calendar with outings. Being actively engaged in the world keeps you focused on living in the moment. That's important.

I was diagnosed and had my nephrectomy 10 years ago, first metastasis appeared 6 years ago, have had surgery, radiation, been in a clinical trial, developed borderline heart failure and Lymphemema from the drugs, have been off all meds for 6 months and feel great, tho two lymph nodes are growing again. We wait & watch. My sensitivity to the treatment drugs makes going on any other drug problematic. "At the moment I don't have a good solution for you," is what my onc has said. Im awaiting results from a genetic profiling of my tumor to see if that might point the way to a new treatment. Worrisome? You bet! But I feel pretty wonderful right now. Great energy. No pain. This cancer is so peculiar. Long ago I learned not to ruin perfectly fine days by worrying about what might happen next. You just don't know - and neither do the docs. You can make yourself hysterical and dysfunctional by fear. But then you will have ruined a potentially wonderful day. Everything that "happened next" with my cancer so far has been a surpRise. All of us here have learned to live with monumental uncertainty. It comes with the territory. But it is doable. Look around you, though, all life is riddled with uncertainty. In the 10 years I have had kidney cancer, at least six people I know and have loved have died unexpectedly. None of them had kidney cancer.Only one had another form of cancer.  I know you will find your footing with all this, and you will be able to carry on and be happy and excited again, and look forward with joy. It'll just take some time. And determination.

mjl66 said:

Thank you

Thank you so much. I know you are right, the difficult part for me is feeling helpless watching my husband go through all this.  When we first found out he kind of went into high gear and was getting ready to leave this life because of what the first doctor told him.  He sold his quad, and started fixing things around the house so I wouldn't have to worry about them.  It broke my heart, especially when he sold his quad, he loved that stupid thing. 

As for things getting better you are right. Since we found out in September, little by little the waters have calmed and I feel more positive.  We are very lucky to have such a kind doctor and to have gotten into this drug trial. 

As for normal, it hasn't come along yet for a stay, but every once in awhile I feel it.  Today I made my husband go for groceries with me and it was a good feeling.  Actually, he's doing much better than I am!

I pretty much stopped doing things like going to the gym after work.  I feel guilty for lack of better words.  I feel like I shouldn't be going on with my normal life when my husband is going through this.  I haven't told that to any one.

Thank you again for the kind and helpful words.  I wish you the best.

MJ

I relate to your story on many levels. The guillt, oh the guilt!!! It gets better. I remember about 2 months after his surgery, we got into an arguement about something stupid and I started to cry because I was JUST SO HAPPY we were getting back to normal. Doing normal things in a routine you are familiar with may help. I will keep you in my thoughts.