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Rough day today

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

I am about 2 months post op after a radical nephrectomy to remove my left kidney and the nearly 14cm tumor.  At the time there were no signs of metastasis, clear margins, lymph nodes clear, etc.  The pathology came back as an agressive type of uRCC but the surgeon and urology team was pretty confident they caught it in time.  Well ... not so lucky.  A mass started to form on the back of my thigh and grew pretty rapidly and I also started to have dry coughs with an odd sound when I fully inhaled.  I went to see my primary care doctor as I had not been referred to an oncologist.  She ordered a chest X-Ray and an MRI for my leg.  The chest X-ray showed some possible nodules so a chest CT was ordered.  I had the MRI yesterday and found out this morning that it was confirmed to be malignant and they needed to perform a biopsy to determine if it was RCC or another type of cancer.  I got the biopsy today and the results should be back by monday.  I had the CT scan and just got a call from my doctor to review the results - I have a new 2.9 cm mass in my right lung that was not on my previous scans from 3/31, the lymph nodes are enlarged and there are several smaller nodules.  HOLY CRAP that is a lot to process in one day.  My doctor has referred me to an oncologist and hopefully I will get in early next week.  Obviously this cancer is agressive so time is not on my side.  Please keep me in your thoughts and prayers.  Thank you all!

daisybud's picture
daisybud
Posts: 461
Joined: Jan 2016

Are definitely in my prayers today..

jazzgirl's picture
jazzgirl
Posts: 137
Joined: Nov 2017

Oh, Mark, what a lot to find out in such a short time - and now the wait for the biopsy results as well.  I hope you can get in with the oncologist as soon as possible and get guidance, treatment - something to deal with it all.  I hope you have supportive family and friends surrounding you.  and yes, thoughts and prayers from me.  

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

I just said a prayer for you.  

 

Check out a website called smart patients https://www.smartpatients.com/ There is a lot of great infomation there.  

 

jason

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Yikes, multi-whammy. Thoughts and prayers? You got 'em. 

So glad that you went to your physician and she followed up with tests and your referral.

Keep us posted --

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

That is a lot to process!  Best wishes for the best results possible...keep us informed.

 

Jim

LMCRJB13's picture
LMCRJB13
Posts: 82
Joined: Oct 2017

Man, that is a lot to process.  My stomach just sank for you.  Thinking of you and hoping that you get a good plan of care in place very soon.  

Prayers for quick treatment and good results.  Hang in there and lean on us and others in your life for support.

You got this!

Ryan

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

try to stay calm...I know easy for me to say

fear is a terrible thing

my prayers are indeed with you

you sound a special guy.. your writing is amazing

i pray you get a quick and fast response

Annie

 

 

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

That stinks.  Don't give up.

Donna~

stub1969's picture
stub1969
Posts: 797
Joined: Jul 2016

At the reaction of the doctor even after your surgery.  The size of you tumor alone would have to cause some concern with them.  

 

I know you are going to Mayo--so I hope they put you in the hands of an excellent oncologist.  Prayers being sent your way--Keep us in the loop.

Stub    

APny's picture
APny
Posts: 1948
Joined: Mar 2014

You're in my thoughts. I'm so sorry you're dealing with all this and keeping my fingers crossed that your oncologist will come up with a solid plan of action. I hate this disease!

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

I am thinking and praying for you! 

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

I just hate hearing this news. Was SO hoping that would be the end of it for you after the surgery. Well, now with a good Oncologist, maybe you can get on top of this and beat it. This aggressive kind is frightening, that is for sure. Hang tough, you're a fighter!!

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

It seems from your postings, and I hope, that you are still free from obvious symptoms. 

Radiology reports can seem scary and are definitely cause for concern, so I hope the biopsy results are at least definitive.  If it is mRCC, make sure you check out all options.  Immunotherapy has worked for many on this site including myself, but have a good discussion with your oncologist and get something started asap.

Best wishes,

Fred

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

You are in my thoughts and prayers

I am keeping my fingers crossed that your medical team comes up with a good decision how to fight with it.

Bryn1108's picture
Bryn1108
Posts: 83
Joined: Jul 2017

Praying hard for great results.  

Svenska1's picture
Svenska1
Posts: 3
Joined: May 2018

I need to find a support band for my tummy to use during the healing process.  8 days post op from rt kidney removal.  Any recommendations?   Tired today. I was kind of too upbeat after surgery but today I am crashing.  Think sleep is in order.  Thanks for your respoonses.

Jeffris1
Posts: 38
Joined: May 2018

Go to home depot, all their people where stomach belts to help prevent hernia. They sell them.

Allochka's picture
Allochka
Posts: 870
Joined: Nov 2014

Hugs... Please don't give up!

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

Cancer won this round but I am going to win the fight. FU cancer!! My amazing doctor fast tracked me to THE oncologist for kidney cancer. I meet with him on Tuesday. I am so thankful for the prayers and support. These last few days have been very hard but no one ever said this was going to be easy. One day at a time. 

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

I love your attitude. You are going through a lot right now. Sending you strength and perseverance.

Cin

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

I have been thinking about you since your post, and you're definitely in my thoughts today. I hope you get some good news for a plan of action. I'm not sure we have the same exact kind of cancer, but mine is pRCC, non clear cell, type 2, grade 3. For what it's worth, they put me on Cabometyx a month after surgery. Will soon be starting the 3rd month of it and in 2 weeks a new scan. I see some people having results with this med. Whatever they decide, you are in good hands, and hope they help you to kick this, and fast. Please keep us posted.

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

That's the spirit. You can kick this. Hang tough, and we're all pulling for you. Please keep us posted. Yes, one day at a time and you can do it.

APny's picture
APny
Posts: 1948
Joined: Mar 2014

So glad your doctor found you the perfect specialist. Hang in there; cancer didn't win anything. Not even this round.

msjax
Posts: 20
Joined: Dec 2017

Hope the appointment with the new doctor provides some better answers for you ~ much support and will be thinking of you on Tuesday.

lobbyist0724's picture
lobbyist0724
Posts: 388
Joined: Sep 2016

My pray is with you Mark, it is just too much to digest in a day (not easy to read it as well). I wish you the best outcome from your treatment!

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

You'll also be in my thoughts.

Steve.

Angiebby75's picture
Angiebby75
Posts: 190
Joined: Aug 2017

Prayers for you.

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Our stories sound very similar. I was diagnosed after an ER visit. Then March 8 I had my left kidney removed. My cancer had reached my renal vein. My surgeon was sure he removed all cancer and my pathology was clear. My pathology showed an agressive cancer. Two months later I ended up in the ER with severe back pain. My scans showed my cancer had spread to my lungs liver spine and groin. My cancer on my spine caused a compression fractue of my lumbar spine. I had an ablation and kyphoplasty of my lumbar spine. I had my first immunotherapy treatment almost 3 weeks ago. No maytma what stay positive and fight. My prayers are with you. 

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

Our stories are way too similar ... I am so sorry that you have gone through all of that. Cancer really sucks. I’m hoping for the best news possible tomorrow but I know I am going to have to fight hard to beat this thing. Best of luck to you on your continued fight. I am praying for you and everyone with this horrible disease. 

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

Met with the Head of GU Oncology at Mayo Clinic yesterday.  This cancer is a real ***** - aggressive and rare (unclassified with sarcomatoid features - grade 4).  They want to get me started on a dual immunotherapy of yervoy and opdivo but had to have a brain scan, blood work and another CT of my pelvis for staging/markers.  MRI was this morning and got good news - no signs of cancer in my brain!!!  I believe I will be getting my first infusion next week.  The doctors did share that this is not a curative approach but more a palliative approach to try to extend my life and improve quality of life.  This is a new first line approach to treatment and they really didn't have a lot of concrete information to give me.  I did get the very sobering news that people with this type of cancer typically live about a year.  I have decided that I have many more years to my life and I am going to fight like hell.  Keep the prayers, good thoughts and words of encouragement coming.  

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I was given the same information agressive grade 4. I was given my first infusion of yervoy and opdivo almost 3 weeks ago. The biggest side effects for me were decreased appetite and fatigue. Today I have been feeling really good I've managed to keep up with my little ones and had a good appetite. My oncologist gave the grim info however she said everyone's body responds differently and even though we know there's no cure the growth can be stopped or it could shrink tumors. I have my second treatment Monday I'm hoping my side effects do not increase. I just reached out for a second opinion. I was very impressed with her. She also recommended genetic testing which my previous oncologist never mentioned. She spent almost an hour with me and my husband we felt more informed with her. Stay strong and prepare for battle my friend. I will pray for strength and healing for you. Like the others have said no mortal knows my expiration date. That's between me and God and so far he's put faith and hope in my heart. I hope your treatment goes well. I also had a port placed so my care team can complete infusions and pull blood for labs which has spared me needle sticks. 

stub1969's picture
stub1969
Posts: 797
Joined: Jul 2016

Life is full of averages.  That one year is an average.  As you will notice on this board there are a lot of stage 4 RCC fighters that have lived well beyound the "average" and are plugging along just fine.  I believe you will be one of those folks too.

All the best--Stub

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

Thank you Stub. 

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

oh Mark..  I can’t tell you how shocked I am

i was praying you would get better news

However as Stub says.. there are folk here for  many years

its very hard to absorb.. 

but strength and determination takes you a long way

prayers for you

Annie

Trucker1's picture
Trucker1
Posts: 82
Joined: Sep 2017

I wish you the best of luck and hope that your treatment helps kick this cancer ***! You have the right attitude! ! We will be thinking of you and praying for you!!!

msjax
Posts: 20
Joined: Dec 2017

Mark,

There is another cancer support site you might want to check out called Smart Patients -- excellent advice from many others who are currently going through treatment.  Very good information about your type of RCC -- https://www.smartpatients.com/conversations

You may also want to create an account with Practice Update (free) -- they just released this interview about rare kidney cancers with Ramaprasad Srinivasan MD, PhD 

https://www.practiceupdate.com/content/an-overview-of-rarer-subtypes-of-kidney-cancer/64185/11/10/3

Also in the future you may want to contact NIH about possible clinical trials -- https://www.cc.nih.gov/recruit/protocols/18_kidney.html --they cover much of the cost when someone participates and also do genetic profiling.

You are in my thoughts -- take care.

 

lobbyist0724's picture
lobbyist0724
Posts: 388
Joined: Sep 2016

Totally agree that you should contact NIH about your case, they might be interested to your case as you are having a rare subtype and very young age.

Also, there are cases of long term complete responders with immunotherapy, and questions like CR = Cure are being asked lately. There will always be new therapy becoming available, so stay strong.

Also, if you use twitter, this group also provide alot of updates than Google does :)

https://twitter.com/IKCCorg

Texegon
Posts: 2
Joined: Jun 2018

You are in my thoughts! 

Allochka's picture
Allochka
Posts: 870
Joined: Nov 2014

Mark, here we have Fox, and Donna, and lots of others who were given kind of expiry date long ago. But they are here and living life!

Fight like hell, yes! Cancer shall not pass!

All

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

i love the LOTR reference (intentional or not). i Am going to help raise the averages. 

marosa's picture
marosa
Posts: 332
Joined: Feb 2015

are with you.  Wishing you the best results in your treatment and may you always keep your positive attitude. 

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

I feel very optimistic about treatment. 

Jeffris1
Posts: 38
Joined: May 2018

We just went thru pretty much the same thing. My husband renal cancer showed because of a racing heart, then ct scan showed a tumor on his rib, which brought us to his kidney, which was removed the other day. Have no idea where we are headed next, but you and my husband are on the same path. So the fight begins. Positive  energy and good drugs.

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

My heart sinks every time I read about a new person joining this awful club. This journey is just beginning and I know exactly how you feel. Try to stay positive and do your best to trust the healthcare providers. Of course do your own research and advocate for your husband when needed. I pray for strength, comfort and healing. 

Canadian Sandy's picture
Canadian Sandy
Posts: 512
Joined: Jul 2016

Sending prayers your way. Keep on being positive.

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

one day at a time 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Mark, keep fighting the fight.  In the words of Jimmy Valvano--Don't give up, don't ever give up.  Hoping for the best for you.

jazzgirl's picture
jazzgirl
Posts: 137
Joined: Nov 2017

- as you head into whatever this week brings.  I take heart from your positive attitude and optimism.  Take care -

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

So glad to hear they are taking good care of you. We are here with you!! Stay up and positive. All the best to you xoxo

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Hi Mark,

Where are you being treated.  In your circumstances, it is critical that you see an RCC expert.

I also have unclassified RCC, but not sarcomotoid.  I highly recommend that you contact NIH because they are experts in hereditary RCC.  RCC in patients your age often is hereditary and NIH would perform genetic testing.  They would also perform a pathology to confirm that it is unclassified.  It can be important to be sure of the correct subtype because it can influence treatment decisions.  I have had my pathology done at 3 institutions.  One disagreed with the other two, but I’m inclined to trust the NIH report because they are about as expert as you can get.

Unfortunately with yours being so aggressive you really need to start treatment ASAP rather than waiting for second opinions.

Unclassified RCC normally does not respond to the older drugs and I was given a poor prognosis 4 years ago but I’m still here.  The sarcomotoid feature does make yours even more aggressive, but do not lose hope.  Because clinical trials rarely include unclassified RCC patients, there really is no way of predicting how you may respond to any drug.

If you decide to contact NIH, you can contact Debbie Nielsen at 301-451-4093.

I’ll be praying for you.  Keep us posted and ask any questions or just come here to vent.

I also recommend that you join SmartPatients.com.  CSN is great for support, but SP is almost all Stage IV patients and there is a wealth of information there.

Kathy

 

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