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Update

LMD828
Posts: 26
Joined: Dec 2016

I reached out to you guys on Friday and I have new information.  My husband's details are as follows:

Tumor is 9.4 cm 

Mets to lungs (too numerous to count

 

Is there hope?

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Because when I was diagnozed on May 1st 2013, I had a 10cm tumour and mets to the lungs. I'm still here 3 1/2 years later happily annoying my neighbours with my terrible, but enthusiastic mandolin and banjo playing.

LMD828
Posts: 26
Joined: Dec 2016

You are officially my hero.  Thank you, Footstomper!!  

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

You're going to find a lot of heroes here. Foots is definitely up there on the list! Lots of GOOD folks here, definitely. 

Do continue to keep us posted. You remain in my/our thoughts and prayers.

Hugs,

Jerzy

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

LMD,

Although mine was 4.2 cm, there are many on this board who are 10 cm and above and doing quite well. As for the mets on the chest they could be harmless nodules, but you will need to discuss that with a pulmonologist. Those under 8mm are often harmless unless they grow and a follow up CT of the chest will be scheduled down the road. Tumors over 7 cm are at least Stage 2. Because of the size of your Tumor and possable mets to the chest I would look into an evaluation at the Urology Department of one of the Medical schools in the Boston area where you live. That way at the least your team will also include an Oncologist and Pulmonologist. Usually the first thing they do is remove your Kidney and Tumor (a Nepherectomy), but I have seen cases on this board where they addrress the mets first if thats what they turn out to be. If they opt to remove the kidney first they will do it relatively soon. None of us including myself has fond memories of being nephed, but we have all been through that.

 

Icemantoo

gregslovey
Posts: 33
Joined: Oct 2016

I know that's trite, but it's true, especially here......lots of folks here have Stage IV RCC and are living a full life.

My husband's tumor was 10cm and he had a nephrectomy.  that was five years ago.  At his five year check up they discovered the mets to his lungs.  there were five nodules, and one in his pancreas, one on his thyroid and enlarged lymph nodes.  We are six months into Votrient, the scans show three of the five in his lungs are gone, the pancreas nodule is so small they can't measure it, the thyroid is the same and the lymph nodes are normal in size now. 

Keep the faith...there are really good treatments out there. 

I know your fear...I love my hubs more than anything.  I cried for months after we found the mets.  we are married for 34 years.  Hugs to you. 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

There may be a battle that lies ahead but there are great things on the horizon.  Hang in there and pay close attention to Footstomper and others like him.  Such an inspiration to all of us.

I'll keep you in my prayers,

Donna~

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

My met count was 20ish and I was told I'd be dead within 6 mos. Found a better facility and march 2017 will be 6 years from date of nephrectomy. It's not always easy. But kidney cancer specialists can offer much more than many cancer institutions that don't have a specialist. It's not always easy but the outlook can be so bright you're gonna need sunglasses.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Yes, there is hope~ but depends on which MD tells ya. Once you get to the proper specialist you'll probably here a totally different plan than the doom and gloom ones form MDs who don't know about treatments.

Again, your Primary should be referring you to a Urologist who specialized in Renal cancer surgeries. Honestly, I would skip meeting with Primary, but thats me.

Keep us informed. Now on to the "game plan."

Hugs, Jan

 

LMD828
Posts: 26
Joined: Dec 2016

Yes - we are off to the Genitourinary Cancer Treatment Center @ Dana Farber in Boston tomorrow.   He has been given a "gloom and doom" report, but I will fight to make sure someone finds a plan to beat this.  Thank you!

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

LMD,

 

It appears you will be seeing the best of the best. Keep us posted.

 

Icemantoo

mrou50
Posts: 389
Joined: Mar 2013

There is always hope, no one can take that away from you and your family.  We are living with cancer and our medical teams are going to do everything to keep us living.  Dont give up or think for one minute that you are going to lose your husband soon in fact make sure you keep his chore list full, my wife makes sure I am still working around the house especially since I am no longer able to work and when I do play the cancer card she laughs at me and tells me it isn't gong to work and nice try.  

Mark

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Yes, don't give up!! Forget the doom and gloomers! There are many success stories here, and if you get the best medical care - a kidney cancer specialist - your husband will be in good hands.

Hugs

Jojo

 

JoanneNH
Posts: 115
Joined: Sep 2013

LMD828:  Any updates?  I know husband should have already been seen at Dana Farber.

LMD828
Posts: 26
Joined: Dec 2016

Yes - Thanks for being in touch.  We have met with a genitourinary oncologist team and are moving forward.  Surgery is being scheduled and treatment on the lungs will begin shortly thereafter.   We are both happy with the care he is receiving so far.  He is having a radical nephrectomy and should be in the hospital 3-6 days.  Any advice is welcome..............  

Thanks again for your concern.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Baggy shirts, baggy pants, comfy slippers, for when he comes home. I also found cookie dough Ice cream great to eat when I came home. Try and get the Dr/surgeon to prescribe some physical therapy. A nice jejune humerous (not too humerous - a titter not a laugh)book. I took a lap top to hospital so I could listen to the radio.

JoanneNH
Posts: 115
Joined: Sep 2013

He won't be able to bend over for a while, so sleeping lying down won't be comfortable.  Many people sleep in a comfortable recliner.  I did not have one but instead slept on the couch (a very comfortable one) propped up with pillows.   Loose pants like sweat pants with an elastic waist in at least one size larger than usual.  Make sure he has a small pillow to hug in the hospital if they don't give him one.   Use that to hold against the surgical incision for coughing, sneezing, walking.  Don't make him laugh.  Get him to walk as much as possible as soon as possible.  It will help recovery.   I used a small towel between me and a seatbelt whenever I rode in the car.   Constipation is guaranteed with the pain medication.  I took a bit of Metamucil several times a day at home.  People use different things, but the Metamucil worked very nicely after a few days, without cramps or pain.    It's okay to take the pain medication!  Don't let him tough it out.

That cookie dough ice cream that Footstomper recommended sounds like a wonderful postoperative meal.  He probably won't have much of an appetite.

Can't think of anything more right now.   It's scary.  I was terrified, but the doctors and nurses took great care of me and your husband's team will too.  Dana Farber has a stellar reputation.

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

It depends upon a lot of things. 

I was fortunate at the hospital, because the nurses pointed out to me that I was to use my LEGS to move myself around in the bed, not my midsection.  Cool.  That in and of itself made the difference between pain that was 12.5 vs 5 (both on a scale of 10). Whew! 

I have a memory foam bed, so all I did was to get bed risers (Which were in a box that promised me I could now store twice as much stuff under the bed... Who knew?) and after the third night post-surgery, I was able to fairly comfortably sleep on my side, with a thin bolster between my knees to keep me from twisting my middle.  Ah! I knew I was 100% going to make it at that point. 

Sleeping on a sofa or in a recliner doesn't work for me on a good day. Besides, having to go to the bedroom to sleep, trips to the bathroom, walking for five minutes, then get up to go eat in the kitchen, then go to the family room / living room to watch TV, walking for five more minutes, then back to bed for a nap, etc was good.  Being waited on by well-intentioned family or friends means you can blow off some of your recovery because you can park your butt and have somebody else do your walking. In reality, walking is your best friend, because first it works out the nasty old carbon dioxide gas that was in your abdomen during the surgery, then it works the gas through your system as your bowels start to wake up, then it starts helping you get some strength back. That being said, ain't nobody or nothing that was my best friend the first day back from the hospital and I drifted off to sleep thinking some rather unkind thoughts about my surgeon. 

Speaking of whom, I was fortunate that (1) My surgeon doesn't believe in narcotic pain medication unless it's an absolute necessity and (2) I didn't need it. No narcotics (Even if you start with narcotic-based pain medication -- it's good to replace with non-narcotic pain meds) helps your innards get back to their regularity, which is a good thing. I begged off the stool softener with a milk of magnesia chaser after the first round at the hospital because it wasn't a matter of my bowels not moving.  I couldn't move fast enough to get to the bathroom (nor could the nurses move fast enough to get me a bedpan).  At home, I had a low stepstool for in front of the toilet so my feet were up a little when I needed to go.  That definitely helped things out!

Laughing is OK -- chuckling and smiling are to be encouraged and get some additional endorphins to work, further kicking pain's butt and optimizing healing. Definitely approach gut-busting belly laughs with caution. They take a while to work up to, or done too soon they will feel like they really are busting your gut. I caught up with most of the Golden Girls episodes and watched the first three seasons of Third Rock from the Sun and the Big Bang Theory. Yes, I even survived some genuine laughing out loud. 

I found that dressing up in Real Clothes to go to the doctor made me feel pretty decent.  Of course they were baggy Real Clothes, but they did the job and in fact looked like business casual (for East Coast folks) or business dressy (for West Coast folks).  I also had silly socks to wear. 

My friend who drove me home and to my follow-up appointment had a new car and fortunately the seatbelt was no problem at all. By the time I got the OK to drive (3 weeks), my midsection was healed enough that my seatbelt wasn't a problem, either.  Of course, where exactly you get those incisions and how long they are can make a difference. 

mrou50
Posts: 389
Joined: Mar 2013

I don't have much but the loose pants or sweats are a good idea.  As for the hospital I had my music available to me through my smart phone and a wireless speaker.  Make sure that the support staff hear you sometimes I had some that got into a big rush.  I had a blow up bed that automatically blew up when it lost air.  I kept telling the nurse that my bed was constantly deflated and she and some of the others said it was the drugs.  My surgeon came in and checked on me and sat on the bed and it was flat I told him what happened and he went off on the staff and I had a new comfortable bed in 15 minutes.  It is important to be your own advocate for you and your husband.

Mark

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