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Six weeks from surgery and it appears to be back

TomHop
Posts: 11
Joined: Mar 2019

Hi everyone. I am new to the group. On 2/7/19 I had my right kidney and tumor(6.2) removed. Additionally the cancer was in my renal vein and vena cava. The surgery went well and I was beginning to feel better about things until my scan results yesterday. There are a couple 4MM nodules in my lung and a 1 cm. in a lymph node in my chest. I am going crazy and can't believe that it appears to have come back so fast. Anyone with a similar experience?

a_oaklee
Posts: 436
Joined: Nov 2013

I'm sorry to hear that you have these areas of concern.  Are they just suspicious areas, or are they sure that it's mets?  You asked if anyone else had this happen.  My husband was diagnosed as stage 4 back in January 2012.  He also had the tumor growing up the vena cava, so we knew it had entered the blood supply.  He was also diagnosed with bone mets.  He was told that there were other really small spots in other places, like lung, thyroid, liver.  But he was also told being so small it could just be scar tissue in these organs.  It's been 7 years now and those spots have not changed, so we are all assuming they are just scar tissue.  I hope the same thing for you.  I certainly understand how scary it is to be told this.  

icemantoo's picture
icemantoo
Posts: 3210
Joined: Jan 2010

about that 1 cm lympth node in your chest. The 2 ,4mm nodes in your lung could be nothing and are very common and they will likely check them in 3 or 6 months.

 

 

 

 

icemantoo

TomHop
Posts: 11
Joined: Mar 2019

Thanks for your reply. I really appreciate the support.

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

Hi, Tom--Beyond being stage three at surgery, did your pathology give your doctor any clues about agressiveness of your RCC?

I'm sorry about these developments and added anxiety this is causing you.  I'm hopeful your doctor is on top of this and is working on a plan for your care. 

Blessings to you.

Stub 

TomHop
Posts: 11
Joined: Mar 2019

Yes. It was an aggressive grade 4 tumor. I suppose the small bit of good news is that it has been detected so quickly since surgery. Thank you for your note.

eug91's picture
eug91
Posts: 142
Joined: Jan 2019

Sorry you had to join us, but this is a great forum with great people. It's a great source of inspiration and support. Feel free to ask us anything. 

As for your issue, hopefully you're already talking to your doctor and asking them questions about this? Just speculating, but the nodules could have been there the whole time and just been missed in an earlier CT scan. Also, as the others have mentioned, they could be nothing - just old calcified scar tissue. Did your most recent CT scan come with any more detailed information with it? Anything the doctor could interpret for you? 

TomHop
Posts: 11
Joined: Mar 2019

I am scheduled for a bronchoscopy 4/3 to biopsy the suspicious nodules. I expect confirmation that it has spread, I suppose the small bit of good news is that they have seen it pretty quickly since my 2/7/19 surgery.

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

I had a very similar experience. Six weeks after my surgery the cancer came back with a vengence. Within 2 months of first hearing the words "you have cancer" I was Stage IV and began systemic treatment (immunotherapy).  This is certainy not the norm - for many it never comes back and for others when it does come back it comes back slowly.  Mine grew new 2+ cm tumors in multiple distant sites within 6 weeks.

Are you still under the care of urology or have you been referred to oncology? There are so many options with small & limited mets - local treatments and surgical options.  Your oncologist will be able to put together a plan to make the cancer regret it dared to come back.

Best of luck to you! Try to stay positive and just take it one day at a time.  You are in my thoughts and prayers.

TomHop
Posts: 11
Joined: Mar 2019

Thanks for the note Mark. Your situation sounds similar. I have a bronchoscopy scheduled next Wednesday. I do have an oncologist. This past Monday I had a six week scan completed for a potential study for Optivo/Yervoy (ipi/nivo). The scan showed things that weren't there on my 2/1/19 scans. I was very disappointed and was feeling very sorry for myself. Your comments in your profile were very helpful for me. I can't worry about things that I can't control. Whatever is coming is going to come one way or the other. How are you coming along almost a year later?

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

A year ago today I was in home in agony but too stubborn to go to the doctor.  A year ago tomorrow I was admitted and found out I had cancer.  It has been a LONG year full of ups and downs. But I am still kicking and I am fighting like hell to beat this thing.  I started with IPI/NIVO and had a great initial response but unfortunately it didn't stop disease progression so I switched to Cabo in December.  So far I have responded well - first scans showed a great response, next scans coming up in a couple of weeks.

 

The best advice I can give is to not let cancer define you in any way.  Continue to live your life and enjoy time with loved ones. It is OK to feel sorry for yourself and be sad - I mean seriously this really does suck - but I'm not going spend whatever time I have left feeling sorry. I am going to fight this thing for as long as I can.  

TomHop
Posts: 11
Joined: Mar 2019

Hi Mark. I replied a few minutes ago but somehow my message disappeared. What initially pushed me into the ER was that I suddenly began to be really short of breath and that my left leg swelled overnight to more than twice the size of my right leg. That was the morning of 1/27/19. With scans it was determined that I had DVT, several blood clots and a few P.E.'s in my lung, and a 6.2 cm. mass on my right kidney. It had also invaded my renal vein and vena cava. After radical nephrectomy (2/7) the pathology report came back as pt3b, with a grade 4 tumor. This past Monday 3/25/19 my follow up scan showed a few nodules in my lungs and a 1cm growth in a nearby lymph node which hadn't been seen on my original 2/1/19. scan. I have a bronchoscopy scheduled next week to biopsy theses newer areas. I don't intend to sound glum, but I think it is realistic to assume that it won't be good news. I mentioned earlier that I suppose that if anything can be viewed positively that it has been detected pretty quickly and that it will help my Oncologist determine how we proceed. I am happy to hear that you are plugging along a year later. Good for you, your spirit and determination. I am rooting for you and everyone else on this site.

Tom

a_oaklee
Posts: 436
Joined: Nov 2013

I think the other growths were there all along, but just not seen on the scans.  A physicist on smart patients can explain this in detail.  It can be so small it isnt seen, plus whether or not you have contrast.  She also talked about the quality of the machines themselves, not to mention who is reading the scan.

My husband and I travel a couple hours to have his scans done at the same facility each time.  It's a major medical center.  

Wish I could be more eloquent.  I dont think those additional spots just came out of nowhere, fast.  I think they were too small to be seen.  I hope that is a comfort in some small way.  I know my husband felt better knowing this.

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

 

Scans can be misread and things can be missed.  There are so many variables and I agree that it is very possible that these things were there on that scan on 2/1 - just missed.  My story is a little extreme.  The tumors which appeared in my scans on 5/31/18 showed several new small sub CM nodules as well as a couple of new growths over 2cm.  I know that there are some over at Smart Patients who will tell you that just isn't possible - these tumors grow slowly - and they are usually correct - but not always. The largest tumor in my lung was not present on the CT with contrast nor was it on the MRI taken on 3/31/18.  In 2 months it was 2.4 cm.  On 11/29 it was 5.4 cm.  I had a tumor in my leg that wasn't there in March 2018 but grew to the size of a baseball from May 2018 to July 2018 before it started to shrink (IPI/NIVO did the trick there).  I had a tumor appear in my abdomen in May, grew to 3 cm by September and 7 cm in November.  All of my scans have been done at Mayo Clinic.  I have no doubt in my mind that these tumors grew that fast.  

 

I am not writing this to scare anyone - I just think it is important to understand that while not common it is possible for new growths to appear and grow rapidly. It all depends on the type and features of the cancer.  My doctors have told me the accelerated growth is due to the sarcomatoid features in the cancer.  I can't stress enough how important it is to seek immediate medical attention and start treatment as fast as possible.  Had I delayed going in another month I might not be here today. Again my case is extreme.  

 

a_oaklee
Posts: 436
Joined: Nov 2013

I'm sorry Mark that you have had this experience of fast growth.  It's good that you share with others what can be more rare, but does indeed happen.   Do you mind sharing what your cancer type was, grade etc.?   My husband was diagnosed as a stage 4. Clear cell, grade 3.

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

The pathology report after my surgery was Stage III unclassified RCC. The tumor was Grade 4 with sarcomatoid and rhabdoid features with necrosis present. I am now Stage IV. 

a_oaklee
Posts: 436
Joined: Nov 2013

Thankyou for answering.  I've heard great results with Cabo, and I hope it works well for you.  

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

TomHop,  Obviously a bit of a shock to have found out you have mets so soon after your op.  Are they still considering you for the Ipi/Nivo treatment?  It did work very well for me (see my profile) but then every one and every cancer is different.

Best of Luck and stay on top of this thing.

Fred 

TomHop
Posts: 11
Joined: Mar 2019

 Hi Fred, thanks for the note. I had a radical right kidney nephrectomy on 2/7/19. This past Monday I went in for bloodwork and a scan for the purpose of entering a clinical trial Ipi/Nivo for patients out of surgery (12 weeks or less), with a high risk for recurrence. My pathology was stage 3, grade 4 tumor. While it was extensive-my right kidney, renal vein and vena cava, it hadn't spread anywhere else based upon my scans. Additionally margins were clear and nearby lymph nodes were also clear My scans this past Monday showed a few small nodules 4-5 mm in my lung and another 1 cm in a nearby lymph node. So the trial is on hold until I have a bronchoscopy and biopsy this coming Wednesday. I won't have solid confirmation until after Wednesday but I am not optimistic. By the way, did you experience any side effects?

Tom

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

 Tom,

I was lucky with only minimal SE's.  My thyroid was destroyed by the Ipi so I now take thyroxine tablets daily (no big deal).  I also experienced a skin rash that is quite common with Nivo, and again no real trouble to me.  Just a few red spots here and there every now and then - treated with a steroidal cream.

I hope they do try Ipi/Nivo on you.  Yours seems to me the perfect situation for immunotherapy to mop up what was left after the Op.

Hope it work out well for you,

Fred

a_oaklee
Posts: 436
Joined: Nov 2013

Thinking about you Tom.  How are you feeling?  Did you get the bronchoscopy done?  

TomHop
Posts: 11
Joined: Mar 2019

Hi. Yes I did. I don't have biopsy results yet but will in a few days. I expect not good news confirmation, and just want to move on to a treatment plan as soon as possible. Thanks for asking.

Deanie0916
Posts: 241
Joined: Nov 2016

Hope you can get on the best treatment soon.My follow up scans have showed small nodules in my lung and one in my remaining kidney but they are super small and haven't changed. Good thoughts and prayers are with you.

Deanie0916
Posts: 241
Joined: Nov 2016

Hope you can get on the best treatment soon.My follow up scans have showed small nodules in my lung and one in my remaining kidney but they are super small and haven't changed. Good thoughts and prayers are with you.

Sunono's picture
Sunono
Posts: 27
Joined: Mar 2019

My prayers and good prognosis!

a_oaklee
Posts: 436
Joined: Nov 2013

Waiting for results is difficult.  I certainly pray that your results will be good.  Whatever happens, make sure that the doctor presents all of your choices re any treatments or follow ups.  Our experience has been that we were initially only told what that doctor could do, and what the facility had available.  We had to seek out other specialists at other facilities.  My husband saw an interventional radiologist, and also saw a pain specialist.  I just think it's important that you are given all your options.  

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