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Diagnosis, Surgery & Discharged in 7 days. Now the Waiting ...

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

March 27, 2018 I felt fine - a little tired and had some unexplained night sweats but I wasn’t concerned - life was normal.  The next day while sitting in a meeting I developed a horrible pain in my abdomen.  When I stood up I almost fell over from the pain.  I went home, took some Tylenol and tried to sleep.  The next day the pain was still present so I made an appointment to see my doctor.  She did an examination and told me I probably had a kidney stone or diverticulitis which would be uncommon for my age. I had some blood work done and she suggested I get a CT scan. I couldn’t get in for a scan until the following Monday but I tried to get in on ”standby”.  While waiting my doctor called me and told me my blood tests were odd - my white cell count was high but my red blood count was very low.  She told me I needed to get a CT scan right away and I should go to the Emergecy Department.  I got admitted and they ran all kids of tests, did a check x-ray, and finally the CT scan.  About 5PM on 3/29 a new doctor came into my room and told me they found a large mass (13 cm) in my left kidney and that I had cancer.  He also also me the pain was caused by an internal bleed which had slowed but was still a significant concern.  

They admitted me to the hospital (I live in Rochester MN so I am lucky to call the Mayo Clinic my hospital) for observation and pain management.  The next day my care team pulled some strings to get me an MRI and chest CT.  The initial results were confirmed and they also found a thrombus that was growing into the renal vein. The afternoon of 3/30 (Good Friday) a new doctor come in - Urologist - and he told me that this tumor was aggressive and it needed to come out ASAP and recommended surgery on Monday, April 2nd.  After discussing this with my wife we came to a pretty quick decision to get this thing out of me and agreed to surgery on Monday.  I spent the weekend in the hospital as they were still monitoring my red blood count and managing my pain.  I spent Easter Sunday in the hospital with my family - trying to be strong while planning with my wife if something happened and I didn’t wake up from surgery - YIKES.  My surgery was scheduled first thing Monday morning - they took me from my room at 6AM and I was wheeled into the operating room around 9AM.  Surgery took about 6 hours and according to my doctor was a success.  They removed the tumor and the thrombus, they took out some lymph nodes which were clear, it did not invade the fatty layer, the margins were clear, the adrenal gland was clear - very positive results.  

I spent the next three days recovering - man did it feel good to shower that first time after surgery.  All went well - I was able to drink, eat, stand, walk, poop - so they discharged me on Thursday April 5.  It was a week from when I was told I had cancer.  I got my pathology report and that freaked me out.  Stage III rencal cell carcinoma unclassified.  The tumor was 13.4 cm.  It was grade 4 with sarcomatoid and rhabdoid features with necrosis present.  It was explained that this is very rare and typically doesn’t respond to most available treatment.  My urologist said that he got it all and that my MRI and chest CT did not show any signs of mets. However, he said that for the tumor to be that large it was most likely growing for 5 to 10 years so the likelihood that some cancer cells traveled are high - he said a 50% chance at least.

It has been 6 weeks since surgery.  Recovery went very well - no complications.  I went back to work after 3 weeks.  Stopped taking daily Tylenol after 4 weeks. I feel pretty darn good except my night sweats have come back - not every night but most. I don’t go back into the doctor until 3 months post op for scans and tests (July).  This waiting business sucks ... it is doing a number on my brain.  During the day I don’t think much about the cancer but at night when I should be sleeping my mind is racing.  My emotions are all over the place.  I feel like I don’t want to wait another 6 weeks - what if the cancer cells are growing right now and in 6 weeks it has spread to my lungs or liver or brain. I am trying to be patient and trust my doctor - he is amazing and is one of the best in the world - but it is going to be hard to wait 6 more weeks.  

Sorry for my long drawn out story.  It actuallly felt good to write it out.  Did anyone else have surgery and then not see a doctor for 3 months? I feel like I should see an oncologist for a PET scan and get treatment started if necessary. 

BeagleLover
Posts: 4
Joined: May 2018

I had my radical nephrectomy done on April 20th and was discharged from Mayo (Methodist Hospital) 3 days later. My pathology report was 5cm Stage 2/Grade 3 RCC (pT1b).   I have to meet with a nephrologist in the next 3 weeks (blood work and general advice on diet, etc.). My first official follow-up with my Mayo Clinic Urologist is in midJuly (3 months out) and then have repeat visits once every 6 months for the next 3 years.

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

I love Mayo!! I was at Saint Mary’s.  The whole experience was amazing.  I mean I wish none of it happened but I was so lucky to be at Mayo.  This waiting business is so hard ... how are you dealing with it?  

Maybe we will run into each other on Gonda 7.  Good luck to you.

BeagleLover
Posts: 4
Joined: May 2018

And the same to you. My first week of recovery was the absolute worst!  I wasn't eating, had some issues with my pancreas/gall bladder that caused hiccups/burping and difficulty in breathing and hence -  abdomenal pain.  But after that it has been pretty good...I did not take any of the oxycodine and stopped the Tylenol after the first week.  Back to work now and so far so good.  Take care of yourself and I wish you all the best with your follow-ups - stay cancer free my friend!

icemantoo's picture
icemantoo
Posts: 3217
Joined: Jan 2010

Mark,

 

You certainly had a lot of baggage. The quick diagnosis and surgery probably saved your life. That being said I would get on the powers at Mayo to get you an Oncologist referral right away and not wait 3 months to see a doctor.

 

icemantoo

stub1969's picture
stub1969
Posts: 796
Joined: Jul 2016

Welcome, Mark.  I echo your sentiments about Mayo in Rochester.  They made this terrible experience one of the few bright spots out of the ordeal.  My surgeon was Dr. Chow and I've had several conversations with Dr. Blackburn.  Meetings after my follow-up scans have been done with several other doctors.  I believe we are in good hands there.  You can read more about my journey by clicking on my "name".  

As far as follow-up scans for you, I have to agree with Iceman about trying to meet with an oncologist sooner rather than later.  

Wishing you only the best.

Stub

STC55's picture
STC55
Posts: 2
Joined: May 2018

Hi Mark,

First off, feel good that you had a symptom and took proactive measures quickly.  I was on an RV trip with my wife when I had my literal "wake up call" from my abdomen with a sharp pain.  Never been to ER (in my 55 years of life so far).  Went to the local ER presenting with signs of kidney stones - most likely prognosis, then bam!...ER doc says "you don't have kidney stones, but you do have a large mass on your left kidney (based on CT scan results) that has started to bleed (e.g. the pain)". "Recommend you get it addressed by your local doctor asap to investigate and sort it out". 

That turn of events was on March 9th 2018, immediate consults with City of Hope docs here in the Los Angeles area, follow up tests (MRI, Bone Scan, Blood work) and ultimately surgery completed on April 16th, home on April 17th (amazing), back to work on May 7th.  My issue was a darn 10cm RCC-Clear cell mass (pT3A, N0, M0 grade 2) that has been removed via skilled surgeon using the da Vinci robotic system to complete a radical nephrectomy (saved adrenal gland as it had no tumor migration). 

Now the surveillance begins.  I have had my initial post-op visit, one new blood test, and scheduled for next visit in June.  Doc will have CT scans every 3 months for the next year.  The other thing is having CT, MRI (with and without contrast, and Bone Scan) all help with establishing a baseline from which to measure.  Initially, they supported figuring out more details in making the determination, but since I was lucky with no Lymphatic, Lung, or Bone metastisis ( at least detectable by those means), now they serve as an A-B comparison going forward.  Hopefully you had similar tests done that can help with surveillance as well.

As my initial 40 year experienced urologist asserted, "you must be a good person who has done good things in life because you have been presented with a red flag warning with a typically a symptomatic cancer".  We now clearly need to be diligent with our surveillance to stay ahead of the game.  In our cases, we are faced with a good news/bad news situation.

Stay positive in your mind and heart.  Life is for the living and we must continue along our journey to the fullest extent possible.  We must play the cards we are delt and move to the next hand.  Stay strong and examine your life and make any changes necessary to ensure you are happy (whatever that means to you) for as long as you live.  If you already do that, keep doing it.  If you don't consider a change.  Stephen Covey said is well in his book "7 habits of highly effective people". Imagine your self at your funeral...who is there and what are they saying about you?  Who would you want to be there and what would you want them to be saying about you.  If these two answers match...you are doing great, if not, you need to examine things and make some changes. 

I'm certainly not suggesting you need to make any changes, only trying to help keep life in context of what matters.  You faced the music and had the courage to take it on.  Good luck and happy living!  

Glad to talk about anything if you ever feel the need.

Cheers - STC55

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

You are a breath of fresh air.. we could do with some more of you here not that I want you here

how are coping and doing lately

Annie

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

Mark, so glad to hear that you are doing ok. We have similar stories. 

After my surgery 3/8, I have regularly been seeing both the nephrologist and an oncologist. They are my aftercare team since surgery was in another state. I can't imagine waiting 3 months!! You really need an oncologist for this aggressive type cancer. You will rest easier if you get a good oncologist on your case.

Again, glad you are doing well!!

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Best of luck to you, City of Hope will take great care of you. 

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

Mark,

Cancer is no fun but your story so far sound like you will have a good outcome - well managed over the short period by you and yours, and your health professionals.

Yes, now you wait. There is a very real chance that metastasis has already occurred, and if so may not show for another year or two (that was my experience, anyway).  You obviously need regular follow up scans.  If it does show up as mets eventually, there are options and some chance of continuing to live a normal life, so stay positive. 

I think that any mets will show on CT scans well before you have any real symptoms or pain, so don't jump at shadows.  We all have little aches and pains and normally ignore them, if not for having had a cancer scare.

Best of luck,

Fred

 

 

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

Hi Mark, My story is pretty similar to yours. I went to ER with abdominal pain in early March 2018 and had an ultrasound. They found my mass on my Rt kidney (10cm). I had my radical nephrectomy 3 weeks later (and turned 50 in the meantime). I had been having some unexplained fatigue, less endurance and, for a few months, low grade fevers every few days. My cancer was also sarcomatoid and rhabdoid features. They had to scape a bit off my liver (1%) but got negative margins and there is no evidence of met (so far). 

I'm still recovering from surgery. I used to be so fit and strong! The week my tumor was found I did my advanced weight training class and played tennis for 2 hours in the same day! Now I keep trying to be active but end up tired for days after. I finally decided I need to stick to walking/hiking and pick up yoga (and a little tennis). I have some dizzy spells if I go out in the heat so I was encouraged by hearing that other people have that problem and that it will be better. 

The waiting game is there. I am trying to get into a drug trial at UCHealth (Denver). Its an immunotherapy drug for RCC and sarcomatoid after nephrectomy with no met. Its nation wide, so you might look into it. I would assume that Mayo is taking part in it. My first CT scan showed a few tiny nodules on my lung that look like infection. I have to now repeat the scan in two weeks. That was not the news we wanted to hear. It is most likely infection (there is a groundglass area around the nodule that is consistent with infection) but they can't exlude cancer. UGH! So more tests and more waiting. 

I have 2 kids (11 & 13) and husband and this is really hard on everyone. I am an art therapist. I've been painting for my own therapy. I work on being mindful. It helps to stay in the present since I can't control anything. I find when I'm mindful I forget things though. I forget mundane things I have to do but at least my anxiety is less. Its constant work all day. I am also taking a class called Valued Living. Its a paid psych study through Univ of CO. Its really good. We work on our values and how to live our lives to be most inline with our values. Also, we learn strategies to help with our thoughts. 

I'd love to hear how you are doing. Ann

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

I am so sorry you are going through this... things like this should not happen to you

the valued living sounds very interesting..are you able to expand

i dont want to burden you but just to let you know that we are always here for you

your kids are at a difficult age  so I know hOw truamatic all this must be to you

 

any News on the drug trial

Annie

icemantoo's picture
icemantoo
Posts: 3217
Joined: Jan 2010

paintergirl,

 

---to the club nobody in their right mind would volunteer to join. Two months out you are still recovering. Do what you can when you can. Small nodules in the lung are common, both in and outside of the club.  Hopefully yours are nothing like mine were.

 

 

icemantoo

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

Thanks! I definitely don't want to be in this club but here I am. I'm glad I found this forum. 

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

Sorry to see you here, but welcome.

Ground glass in lungs does not sound tumourish (at least not to me), more like infection.  I had a lot of that when I managed to get pneumonia last year.

Stay strong and healthy and don't worry too much about losing fitness after a major operation. It took me a few years to get back to my usual swimming routine.  Just staying alive is a good start.

Best Wishes,

Fred

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

Thanks for the encouragement, Fred!

stub1969's picture
stub1969
Posts: 796
Joined: Jul 2016

Hi, Painter.  Welcome to our community.  I'm sure you feel like you got hit with a one-two punch.  I had surgery in August '16.  I had been training for another half marathon when my tumor was found.  Running 4-5 days a week and weight training 3-4 days helped me feel pretty healthy.  I was 47 at the time.  Surgery went well and I tried to get out and jog a little a couple weeks later.  That first attempt at jogging went well, so I tried it again the next day..then the next.  (Please understand this "jog" was at a 10 minute mile pace far slower than my 7-7:30 pace I had been doing prior to surgery).  The outcome: terrible pains throughout my surgery site.  I thought for sure I had ripped open something inside OR I was dealing with mets.  I posted about my concerns here on this forum.  Our wise members reminded me that I had just been through major surgery.  My insides were poked, cut, moved, and stitched back up.  Just because my outside looked healed didn't mean the inside was.  They were right.  So, let me pass on that same message to you.  Try to relax and listen to your body.  Your strength will come back.....slowly.  Just give it time.

I'm hopeful you will have positive results at your next scans.  Keep us posted.

Stub   

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

It has been hard to wrap my head around but I am finally coming to terms with the fact that I can't just jump back into where I was before surgery. (We are talking physically but really mentally too.) I feel like I lost part of my identity of being an athlete and I was holding onto that. Its not that its lost forever but I didn't want to admit that I really need to take a break and do different things (and rest). I was all ready to start some yoga and tai chi this week and then I pulled an abdominal muscle gardening on Friday. Gardening was my "light" activity for the day. That turned into a Drs appt and a possible ER visit. Lucikly the Dr thought it was muscular and I didn't have to go to the ER! More signs to take it easy, I guess. Thanks for your words of support!!

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

You've been through a lot! Some of your story is quite similar to mine. I had the pain and for me I was also bleeding, but it showed up in my urine. My urine looked like cherry koolaid. Pretty scary. I also found out in the ER that I had a tumor. It was just before Thanksgiving in 2012. They diagnosed mine as Stage 1. It was large but just below the threshold for Stage 2, which is 7cm.

I found out after the pathology came back I was Stage 3 Grade 3. I was hoping for Stage 1, which has a better than 90% cure rate by surgery alone. Stage 3 (my Stage 3), I found out, was more like a 30-35% chance of it coming back. I'm lucky I found 2 RCC oncologists nearby and picked one for followup. He followed me closely (bone scan, brain MRI and CT scans for baseline after my nephrectomy, then CT scans of chest/abdomen/pelvis every 3 months for first year every 6 months for second year. I had a metastasis to the adrenal gland that was attached to the kidney that had been removed after 2 years. Then I had surgery #2. They told me my chances were somewhere between 30-50% it would come back again. Now I'm 3 years out and have been getting CT scans every 3 months for the past 3 years (and blood work). Thank goodness no new tumors.

If I were you, I'd want to be followed by a medical oncologist with RCC expertise. In my opinion you need very close followups. The goal is to find anything early while it's still operable so it can be cut out or zapped out with radiation. If it's inoperable (because of the location, or number of mets, or how widespread it is), then the only choice is drugs. The drugs are helpful in slowing it down, and sometimes even stopping it, but there's still no cure. One of the big problems right now is that there are so many new drugs, they don't know what drugs to give in what order.

I'm hoping you never have it come back.

Best to you!

Todd

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

so sorry .you have had a terrible time

how are coping now

the fear is something folk here can understand

wishing you strengtht and we are here any time

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

Well things have been interesting.  I had some tightness in my left thigh since surgery which I thought was nothing.  It didn't improve and I noticed I started to feel something hard inside my thigh.  That was about a week ago.  I called to see my Dr and got in to see her today.  During the week the mass "grew" and is now visible and measures about 7cm.  My doctor ordered an MRI which I got lucky and got in today.  Tomorrow I will have the results.  I also noticed an odd sound in my lungs when I inhaled and I have been having some dry cough attacks.  Dr ordered an X-ray and she thinks there might be a new nodule in my right lung measuring 6mm.  I did have some small nodules they discovered pre-surgery but they thought they were more likely due to infection.  CT Scan tomorrow for a better look and to compare my pre-surgery scans.  Remaining positive ...

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

Prayers for you. Yes try to stay positive. I am in a similar limbo status best wishes.

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