new to forum

brownie_nh

Good Morning, 

I am new to this forum and this specific type of cancer. Here's the story. My boyfriend of almost a year now has his first teleconference (because of covid-19) tomorrow with 2 doctors from mass. general. He has had CT scans of his kidneys, torso, and all the or scans to get to this point. They found a large tumor larger than 7 mm in one of his kidneys as well as the cancer spreading down the uretha and into the local lumph nodes. Other than this he will find out hopefully tomorrow where else it has spread, what it is actually called and what can be done about it. He is 57 years old and in good shape. Always upbeat. He has asked me not to be there tomorrow morning only becuase he doesn't know how he will react. Tonight I will be going over to set up the laptop for him. And go over some questions we have. 

I am scared however, this is not my first rodeo. 12 years ago I lost my mom. Her battle started with gall bladder cancer, then ovarian, then on from there over a 5 year span. It was difficult to see her suffer as she didn't take top her treatments well. We lost her at about 10 at night on a sunday in january. 

Its different for me this time becuase its not my mom, its my partner, we both have said this must be gods work because he couldnt think of anyone else he would want to travel down this road with. Hopefully the plans we both would like to fullfill in our future will be concoured by us in time. 

What can I expect tomorrow? I wasnt in the room with my mom- my dad was... My dad has just told me to be strong. Thank you for listening. Be safe and stay healthy. Sincerely Lisa 

stub1969

Welcome, Lisa

Glad to meet you, although it would have been much nicer under different circumstances.  First of all, I want to assure you (as you already know by going through this with your mom) all of these fears and feelings of anxiety are perfectly normal.  We have all been there, so we know what you are talking about and what you are feeling right now. 

I'm assuming the scans that you are referring are his baseline scans, correct?  If they are, then the doctor will review these with him and talk about treatment options.  I believe you meant to say that his tumor was bigger than 7 cm rather than 7 mm.  If it has spread and it isn't in the lymph nodes then surgery may take care of it.  If it is in his lymph nodes then they will possibly still talk about surgery, but also talk to him about 1st line treatment options.

I'm not sure how fast this will move along because of the epidemic.  Hopefully, it won't take too long.

Please know, you can count us as part of your support group.  We'll help you as much as you want us to. 

Blessings!

Stub  

eug91

welcome

Yes to everything that stub wrote above.

Sorry you had to join us, but this is a great group here. We know what you're going through, so feel free to ask us questions or vent if you're upset. But all of us have been through what your boyfriend is going through - click through our profile names and you can read our stories - so we know you have good reason to be optimistic and to be hopeful. 

We're with you. You've got this!

 

icemantoo

At 7 cm

My Rodeo fot Kidney Cancer was amost 18 years ago with a smallet tumor/ For over 17 years that was  my only Rodeo Since than I went ro the Prostate Rode last fall abd I went in the ER with a stoach acheb in 12/30. They told ne if I did not get my gallbladder out by the  end of the year I would  die. What a way to spend New Years Eve.       Your boyfriend and you will get thru this.

 

 

 

 

icemantoo

brownie_nh

Thank you so much! 

Thank you so much! 

brownie_nh

UPDATE*

Doctors found cancer on his liver and they are scheduling him for an MRI in mass tomorrow to get a better look at it. They also said it is 3 inches long and it hasn't been there long and is growing very fast and is aggresive. They are scheduling ER surgery for early next week to remove the kidney. They think they know what it is but he couldnt remember the name. So, he will get that info for me. No chemo right now because of covid. Im at a loss for words...... 

stub1969

Hold on

Are they comparing a scan with another scan to determine growth?  If not, then I'm not sure how they can tell how aggressive it is without a pathology report.  That will come once it is out and the lab can get a good look at it.  

A couple of suggestions:  Try to convince your boyfriend to have a second set of ears at the next appointment.  This will ensure you catch everything.  I'd also ask you to develop some questions prior to the next appointment and write them down.  Make sure you ask your doctor those questions, so you feel informed.  Knowledge is power at this point.  I'm not going to understate how scary this is.  The next week--or at least until the surgery--will seem like forever.  Stay busy and allow yourself time to grieve--this is a big hit, not only to him but to you, also.

Take care of yourself--Stub

AliceB1950

He might not be allowed to

He might not be allowed to have that "second pair of ears" under the current circumstances.  He should ask the doctor if he can record the appointment, then go over it at home.  If there's anything he doesn't understand, he can get things clarified over the phone or through the online portal.

 

stub1969

Advice

Excellent advice, Alice!!

Stub

donna_lee

2nd ears

Yes record it.  I had my husband with me, but he didn't remember a thing-kinda shut down in shock.

There is lots of hope going on here.  I lost a kidney, the left lobe of my liver, set on nodes with 2 positive in the first surgery; and for good measure, I had thought I had gall bladder problems.  They checked it, too and removed a congenitally defective gall bladder and tube from it to the stomach.  The surgery was long, recovery slower, but I'm here today.  That long ago surgery was in 2006,

What you are going thru is not pleasant.  Hang in there and we're here to hopefully answer questions and lend an ear.

Hugs,  donna_lee

 

eug91

Lisa-

We forgot to mention the big rule - don't trust google. You've probably already googled and gotten all sorts of old and outdated information about survival rates and such. It's outdated. Kidney cancer treatment has seen incredible advances in the past few years. You can read what Donna went through. So while it all comes as a shock, pick yourself up and remember you've got reason to be hopeful and optimistic. 

Also, echoing what everyone else said - if you can't be there, please try to record or write down exactly what the doctor says so that you're not playing telephone with the important information. Stub pointed out that to know how aggressive and fast growing a cancer is, you usually have to either compare it to a previous scan - or you have to get some of the cells out and have a pathologist biopsy it. Also your note about no chemo because of COVID-19. Kidney cancer is rarely treated with chemotherapy - it's almost always some combination of surgery and immunotherapies or drugs. 

Good luck with the scan. We know it's overwhelming, but we know you can do this - you've got this!

brownie_nh

update 2

Hi- I just wanted to reach out and say for one- thank you and two- what a week! BF's entire left kidney was taken out including the uretha and some lymphnodes on tuesday in massachusetts. Becuase of COVID- he had to leave yesterday. So, I drove down 2 hours to get him, only to get caught in a roll over accident on the other side of the highway. Dead stop traffic for 1/2 (within 20 mins. of the hospital). Anyway- tumor was a little large than what they thought and his kidney was flattened and very distorted so, the surgery took a LOT longer then they thought. prelim. info came back that he may also have a low grade lymphoma as well as kidney cancer. He was quite out of it when they told him so, we will know better on the follow up. I couldn't be with him becuase of COVID or I would know better on what they said. He has a catheter and right now - good lord the recovery his tough......... Stay safe Lisa 

donna_lee

Stay Safe, to both of you

Glad the surgery is behind you.  He will take a while to recover, just take it slow and easy.

Hugs to both,  donna_lee

stub1969

catheter--ugh!

Talk about an uncomfortable feeling when they take out the catheter.  Thank God it only takes a second or two.  What a relief it is having it out, though! 

Glad he's in recovery--he'll need your support and help, but he'll (and you will) get through it. 

Wishing you the best!

Stub 

a_oaklee

postop wishes for fast recovery

Glad to hear your BF already had his surgery and is recovering.  You both must be relieved to get that part behind you.  Wishing you the best.

Allochka

Hello Brownie,

Hello Brownie,

what a crazy journey! Do you have any news? Pathology report? What about suspected lymphoma?

Pleas stay strong, good luck to you and your beloved one!

brownie_nh

update 3

WOW what a journey... BF is recovering. He had an oncologist appointment the other day and well we found out that the kidney cancer was actually the large b cell lymphoma and that they got a LOT of it when they removed the kidney. Now we battle the lymphoma itself and move on from there. He is still recovering from the removal of the kidney, but doing well! He and I have been fishing- social distancing 101 lol. Thank you all for the kinda words and an ear for this chapter in life! Be safe! 

Allochka

I don;t know much about

I don;t know much about lymphoma, but I've heard it is rather treatable. Great that they got the biggest part of it out.

Good luck and speedy recovery to your beloved one!