CSN Login
Members Online: 1

You are here

Coronavirus/COVID-19

What cancer patients, their families, and caregivers need to know about COVID-19.

New, neurotic and terrified.

Siobhan20
Posts: 7
Joined: Feb 2020

Hi everyone

Habe been lurking for a few days and noticed how lovely and supportive you all are. I suppose I’m looking for some of your expertise and reassuranc. 

 

My story - I am 50 year old female, went for ultrasound 3 weeks ago for suspected kidney stones. A solid mass found on right kidney and fast forward to CT which I had a week ago. Results 2 days later - likely RCC, size 3.7 cm in mid pole of right kidney. Chest CT clear and no evidence of lymph node swelling etc or bony lesions in chest  

Bad news is that there is a wait to see Consultant, with surgery still potentially 2months away. I was able to speak to him briefly and he seemed to think I was relatively ‘low risk’ based on report alone, as he hasn’t seen scans. He doesnt seem to think it should grow/spread in meantime - these are my biggest fears. 

Not only this, but just today I noticed a bony lump on top of my foot just below my big toe, which seems to just have appeared. Is it possible this could be a spread to my bones already? 

Sorry, just feeling so scared and alone right now. 

 

Siobhan xx

Lynn_65's picture
Lynn_65
Posts: 3
Joined: Feb 2020

Hi, Siobhan 20, 

Sorry you have had to join here. I'm a newbie too.  I'm a 54 yoa female, thought I was having a gall bladder issue, so CT with contrast was ordered and a 3.1 mass was found on my left kidney.  Then a CT guided biopsy was done on January 28 and 2 days later, was diagnosed with renal cell carcinoma, clear cell.  I'm scheduled for surgery on February 20 but was told I was not at risk and could wait til May, as my son is getting married in April.

I have times when I'm scared and anxious, but am thankful it was found early, and praying surgery will get rid of it! Will be praying for you! Know you are not alone! 

Lynn

Siobhan20
Posts: 7
Joined: Feb 2020

Thank you Lynn! So comforting to know I’m not the only one feeling this way. But I wish you weren’t either. Sending you lots of hugs xx

eug91's picture
eug91
Posts: 200
Joined: Jan 2019

Sorry you had to join us, but this is a great forum. Good luck with your surgery! Many of us have been through it, so we know you're going to get through it and do great. 

And maybe more importantly, CONGRATULATIONS on your son's wedding! 

Good luck! 

Lynn_65's picture
Lynn_65
Posts: 3
Joined: Feb 2020

Thank you for the welcome and the congrats on wedding! He just turned 30 in January so it's time! Lol! 
Will definitely let you all know how the surgery goes! 

Justinb40y
Posts: 22
Joined: Jan 2018

Hello 

 

You  are safe .Do not worry.Lump on foot is unrelated 

 

Thanks 

Justin

Siobhan20
Posts: 7
Joined: Feb 2020

Thank you Justin xx

a_oaklee
Posts: 500
Joined: Nov 2013

The doctors give you their educated guess based on all their experience.   If they are telling you its okay to wait, then you have to decide if that is right for you.

In general, most tumors on average grow 1/2 cm a year.  Some faster, some slower.  Location is very important too.  Family history.  I think you just have to make the best decisions you can, at the time.  This was one of the hardest things for my husband and I to grasp.  We were given many choices, differing opinions, and it was all up to us.  We wanted it to be more straightforward, but it isnt.  It is worth it to find an experienced doctor, and to save as much kidney as possible.  

The mental torture you are feeling will get better in time, especially when you get the surgery done.  For that reason alone, I hope you both have your surgeries soon.

Re the bump on your foot.  Probably nothing.  Ask your doctor.  They can xray your foot for a quick look.  

Siobhan20
Posts: 7
Joined: Feb 2020

Thank you so much for your reply. There are only 2 surgeons where I live that deal with this, so I’m just having to put my trust in them. Thank you again xx

AliceB1950's picture
AliceB1950
Posts: 51
Joined: Jun 2019

Mine was found in early July of 2018 and I didn't have surgery until September 18th.  It was 7 cm, considerably larger than yours, and still (barely!) stage 1.  I've never heard of anyone with ANY kind of cancer getting bone mets on or in their feet.  Cancer does not give you an exemption from other run-of-the-mill ailments and aches.

Siobhan20
Posts: 7
Joined: Feb 2020

Thank you Alice. I‘m hoping you are now fully recovered? xx

AliceB1950's picture
AliceB1950
Posts: 51
Joined: Jun 2019

Recovery from the surgery wasn't bad - in spite of what my body thought the first two or three days!  Walking is the best thing to help you heal.  Now it's just scans two or three times a year, and bloodwork about every three months to keep an eye on the solo kidney function.  I had my first visit with a nephrologist yesterday, and she said I'm doing everything right so far, and when my blood numbers deviate from normal, so far they're still in the right range for someone with one kidney.  She'll electronically monitor my blood test results done by my oncologist and primary care physician, and let me know if any problems pop up.  So that's how normal is now - you'll get used to it!

eug91's picture
eug91
Posts: 200
Joined: Jan 2019

Sorry you had to join us, but this is a great forum. We've been through what you're going through, so we know that you're going to do great. We're here for you.

The good news is that your tumor is still on the smaller side. If it's under 4cm, there's little/no chance of it having spread. So yes, you are lower risk right now. But that's not the most comforting thing if they're going to make you wait. The mental side of fighting RCC can be just as taxing as the physical side, so don't be afraid to advocate for yourself and ask for them to move you up - or possibly find another doctor for a consult. 

As for the bump on the foot, it can't be related to your RCC, but it's not going to stop your mind from going to worst-case-scenarios. Since my diagnosis, every ache I get makes me think that it's a cancer recurrence - pain in my leg (turned out to be a sore muscle), pain in my jaw (turned out to be a cavity), pain in my back (turned out I'm a decrepit old man). 

Good luck. We're with you - you've got this! 

APny's picture
APny
Posts: 1976
Joined: Mar 2014

Hi Siobhan, so sorry you had to join us but hopefully we can answer your questions and give you the support you need. Mine was a little bit smaller (3.5) when found January 1st and did not have surgery until March 17. The chance of it spreading at that small size is extremely slim so I would not worry about your foot. Unfortunately that's what this diagnosis does: turns every single thing into the dreaded M word. I'm six years out and still every time I have aches or pains the first thought is "did it come back; did it spread." Hopefully the surgery will be behind you soon and you can focus on recovering. The anticipation and anxiety was the worst part of my experience. Way worse than the surgery itself. All the best to you! 

donna_lee's picture
donna_lee
Posts: 931
Joined: Feb 2009

'cause Cancer is a scary word.  Click on my user name and you'll see where I started almost 14 years ago.  Yes, you want a Dr. to see you; but you want one who is busy enough to have experience.  Not one who only does nephrectomies or partials once in a while.  And he/she will want to see results of any tests you've had and maybe request some others.

As most have said, the stess of the wait can be emotionally devastating.  We cannot relieve that for you, but can be a sounding board.  Porbably any person who joins the ACS discussion groups can relate to stress---but those of us on the Kidney group are PRO's at kidney cancer.  Hah!

Take care of yourself, eat a healthy diet, exercise, share your thoughts with us, and get some sleep.  Take surrport from your family and friends.  As surgery approaches, let them know what they can do to help.  Then Relax and let the surgeon do his thing.  You'll get through-we all did.

Hugs and best wishes,

donna_lee

Siobhan20
Posts: 7
Joined: Feb 2020

Thank you so much everyone - I already feel a bit better from all of your replies. It’s just such a bolt from the blue, isn’t it? I have a meeting with my Consultant on 4th March, so will let you all know how it goes. 

 

A little less new, neurotic and terrified this evening. Thanks again. 

 

Siobhan xx

jazzgirl's picture
jazzgirl
Posts: 152
Joined: Nov 2017

I will echo everything donn lee said in her post. I am envious of those of you who found this discussion board before surgery. It was a year after mine before I stumbled upon it - and lurked for a while, as you say. The waiting is hard, hard. And "the bolt out of the blue" is impossible to believe - I always said it's like a 2x4 whacked me in the head. Keep physically healthy and active before and after surgery. Walk as much as you can, as early as you can afterwards. Remember we are all here and keeping you in thoughts, prayers - wherever people keep people whom they are supporting. Take care -

Siobhan20
Posts: 7
Joined: Feb 2020

Thank you Jazzgirl xx

HydrangeaBlue
Posts: 2
Joined: Feb 2020

Hello and sorry for your angst.  I am a 68 year old woman, dx with breast cancer last March.  Had a Right Mastectomy in June of last year to be followed by chemo.  When they did the PET scan and the abdomen scan they found a small mass on outside of my kidney.  I saw a Urologist who said it was small, kidney cx tends to be slow growing, to complete chemo and radiation and after that they would remove the mass and biopsy it then.  

So 10 days ago, months after it was first discoverd, I had the mass biopsied via needle and then the area ablated.  The odds were high it would be cx, however, the biopsy showed it was likely an oncocytic neoplasm, perhaps a pre-cancer.  They will continue to monitor me.

I was freaked out when I first learned of what seemed to be a second probable cancer and the delays involved, but the approach suggested by the specialists was indeed the right course to take.  So I hope a similar outcome for you and will say a special prayer for you tonight.

Subscribe to Comments for "New, neurotic and terrified. "