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1st CT scheduled in about a year... am apprehensive

rchalmer's picture
rchalmer
Posts: 15
Joined: Jan 2014

Hey everybody,

diagnosis- Stage 2 RCC- 10/01/2011

partial neprhectomy - 11/09/2011

Pathology - Malignant Non invasive, Not metastised 11/30/2011

 

I know I'm brand new to these boards, but I wanted to post that I'm going in for a check-up CT /with contrast of Pelvic,Abdomen, and Chest on Thursday 01.09.2014. at Virginia Hospital Center. 

 

My last CT was in Feb 2013 and came out clean. 

 

I'll let people know the results once I have the follow up appointment with my Oncologist. 

 

Anyone in the DC Metro area know of any good support groups??

 

-Ross

todd121
Posts: 515
Joined: Dec 2012

Hope it turns out well. I'm on the west coast, so can't advise on the groups. However, I'd check with any of the major cancer center hospitals or just google for "cancer survivors support" plus your city of interest. I've been attending one that is not kidney cancer specific, and I've found it helpful (and at the same time challenging). I also go to one at Cedars Sinai that is a combination informational (there's a lecture first on some issue that is related by a health professional) followed by an open discussion where we sit in a circle and discuss what's going on with us. I like both groups.

Todd

Ladylacy
Posts: 462
Joined: Apr 2012

I think everyone gets very nervous when it is time for a CT, PET, MRI, etc.  But it is hard not to be.  Our youngest son at the age of 41 had one of his kidneys remvoed due to cancer.  He will be 5 years out this April since his kidney was removed and he is doing good.  No problems but every time he gets a pain in his lower back he gets scared -- normal reaction.  I know that they told him his cancer was aggressive but because there was no spread anywhere, he should do fine.  He does not attend any support groups.  To me, it would have been a great ideal right after surgery but he didn't want to.  Now my DIL's father just had a kidney removed due to cancer.  Weird isn't it?  Once again no spread but his health overall is not good in fact he wasn't given a good chance to even survive the surgery, but he did without any problems.

 

Wishing you the best -- Sharon

dhs1963's picture
dhs1963
Posts: 366
Joined: May 2012

I know of nothing in the DC area.  I have looked.  I am also in Northern Virginia.  There are several reasons why RCC is different from most cancers from a patient perspective.  Mostly, things happen slowly.  And, because there is no chemo, we often don't look like we have cancer.

 

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

Yep we all know how that feels but the veterans in the group say it gets easier with time.  My next scan is coming up too and I get very, very nervous.  Ross look at it as prevention is better than cure if that makes sense!!  

 

Eims x

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Good luck with your scan Ross. Wishing you the best.

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

I hope all goes well with your scan, we will be thinking of you tomorrow!

 

Djinnie x

 

sbaron
Posts: 4
Joined: Aug 2013

Hi Ross,

Most of us feel the exact same way you feel every time it's "scan-time."  A suggestion would be to plan something fun after your scan, so you can think about your plans while in that noisy, annoying machine.  Go out with a buddy, get tickets to a sporting event, or get a massage. Remember to breathe and think happy thoughts.

Best,

Sophie

Darron's picture
Darron
Posts: 218
Joined: Jun 2013

I know of nothing i nthe area, sorry.

Best of luck with the scan, keep us posted.

Billy's Wife's picture
Billy's Wife
Posts: 19
Joined: Jan 2014

 Ron.

 

You might want to google ACKC its a group called Action Cure for Kidney Cancer.  They may know of a support group for you.  I met some of them in NY but not in a support group, but I am sure they would be willing to share if they know of one.

 

I hope your CT scan shows good results.  Can I offer one suggestion?  It is something that my husband learned the hard way so I am hoping to spare you that road.  After his nephrectomy he went for scans every 6 months for two years.  Because they were good his doctor recommended that he wait and go to 12 months.  Of course he was glad to hear that and did so.  Unfortunately that is when the cancer metastisized and we wished he had gone at the six month time frame because they would have found it sooner.  Consider asking your doctor if you can go every six months for safety sake and peace of mind.  I hope you don't consider this an intrusion.  Good luck to you!

rchalmer's picture
rchalmer
Posts: 15
Joined: Jan 2014

Hey Y'all...

So I went in for the CT on thursday of last week. I checked in at the CT department of Virginia Hospital center. They told me my order for my pelvis,abdomen/chest CT wasn't on file. I told them the lady at the Oncology office had faxed in it on wednesday. They called the Oncology office (which just happens to be located upstairs in the hospital) and the lady she spoke with was rude and told her I had to go in for a check-up type visit BEFORE getting the CT. That info was in direct contradiction to my doctor's orders to me the last time I saw her. I told her this and she got rude and nasty with me and told me that was the policy and that I had to follow procedure. I asked to speak with my Oncologist and she told me she wasn't in the office. I told her I'll call her cell and she got quiet... then said I'll see if she's here... she came back and said she's out of the office today and tomorrow (thursday and Friday) but that she would pass along my request. I hung up on her. 

I called my Oncologist's cell # and asked her if she would please fax in the order to the CT department. She said sure no problem and that it would be there within 3 hrs. I had to cancel my CT appt for that day and reschedule. the first available appointment I could get was today at 4pm. at this point I've already missed 4 hours of work and I'll have to miss 3 more today, all due to the inability for the staff to do their jobs. I will be talking with my Oncologist about this at my followup for the CT results and filing a formal complaint. 

When you add ALL that stress to the fact that I'm getting this CT to check and see if anything has recurred... you can guess how my anxiety level is through the roof....

I've been working on meditating and breathing... I have medication I can take but I'm saving that for the actual procedure as I get claustrophobic and I don't want to have a full blown panic attack on the table. 

sorry for being so verbose,

I'll update once I get the results...

keep those prayers coming for clean results!!!

 

-Ross

thaxter's picture
thaxter
Posts: 67
Joined: Jan 2014

I just found this site today and posted about the scan I had last week which I won't hear about until 1/24. I am also in Virginia--lived in Springfield for 35 years before moving with my job to Culpeper. My docs are based in Charlottesville.

rchalmer's picture
rchalmer
Posts: 15
Joined: Jan 2014

Culpeper eh? I have been through there a lot! My ex-wife lived at Lake of the Woods on Rt. 3 for a long time and I am always out that way in ski season to go to Wintergreen. 

Nice to see another Virginian on here... why won't you hear about your scan til the 24th? was it a CT? those are typically done pretty fast... they gave me a CD of mine before I left the office!!

I've got a follow up appointment friday, so I'm hoping the " no news is good news" is a good thing... I figure if it's something serious they'd have called me as soon as the CT tech saw it... 

 

love the washboard you're playing in your picture btw. That's Awesome. 

 

-Ross

thaxter's picture
thaxter
Posts: 67
Joined: Jan 2014

The oncologist office called two days after the scan to set up an appt.  Since I wanted one in Culpeper (20 min) rather than C'ville (1 hour)  1/24 was the first available.  I guess he only comes to the Hope Cancer Center office in Culpeper once a week or something.  I asked if they would call but I suppose maybe it's policy not to call.  I'm content to wait--I'm not going anywhere. 

I live in Orange County about 10 mi. from LOW.  My late parents lived there from 1971 on--one of the first families to live there year round (I was in college and married by then).  My sister lives there now.

 

 

 

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Ross,

I can imagine the frustration you are feeling about all of this. Part of the way I cope with things is a "meant to be" kind of attitude. It does really help. Worry is a terrible waste of energy (although I still worry a lot - don't get me wrong! I just try to reduce it as much as I can.)

Praying for great results!

Jojo

rchalmer's picture
rchalmer
Posts: 15
Joined: Jan 2014

Jojo,

 

I went through my entire surgery and recovery with a "meant to be" attitude but for some reason it is REALLY tough for me right now. 

I'm praying for good results as well...  I have a lot of issues with Faith these days... Faith in the twelve step program I'm in, faith in myself, faith in my higher power, faith that what is supposed to happen will happen... 

it's really hard sometimes... I've been without a therapist for almost a year now and I'm searching for one I can get to on a weekly basis that still takes insurance and has experience with Cancer as well as other stuff... 

Thanks for the prayers...

-Ross

foxhd's picture
foxhd
Posts: 1868
Joined: Oct 2011

Ross, as Jojo copes with a "meant to be" attitude you can see that she does not blame anyone or anything. Looking at her picture you can see that she is at peace and has no anger. What a tremendous attitude. Avoiding negativity and worry affords one a more valuable life. When I was told that I had months to live, it frightened the hell out of me. I did cry for a couple minutes. Then I decided to fight. I met with several oncologists and found one who has saved my life. Since that time I have had many ups and downs. So far none of them have taken the air out of my sails. How we deal with this so effectively is from a concious decision. When asked how I am, I have never said anything like, "Not bad." I do not use any negative thoughts or statements. I ALWAYS say, "Excellent"", Wonderful""Outstanding" or something that evokes a positive response. The first step is learning to change ones behavior. Then commit to it. It requires constant effort. But like most skills, practice becomes automatic. Then it becomes ones personality and shows in our lifestyle. If you read back in my post about the post nephrectomy blues, you can see how difficult it has been for so many. When you get thrown from a horse, you get back on. You don't stay on the ground and complain. Go get 'em Ross.

rchalmer's picture
rchalmer
Posts: 15
Joined: Jan 2014

FoxHD,

 

My HP must be speaking through everyone in my life these days. You are the fifth person to provide that advice in as many days. 

Thank you! 

I am feeling positive today and am planning things for this weekend and trying to take my life one day at a time.. sometimes one hour at a time.. 

Everyone I've "met" on this site has been extrememly helpful. 

 

Thanks!

 

-Ross

rchalmer's picture
rchalmer
Posts: 15
Joined: Jan 2014

So I've still not gotten results back from Monday's CT scan. I've had a possibly connected issue that is freaking me out..

 

2 weeks ago I had a 10/10 migraine.. I've had a headache every day since... pain wise it's about a 5-9/10 all the time. OTC migraine meds don't touch it and I don't take anything stronger. 

I've passed out twice (thankfully seated in the car, Parked) lost multiple hours. 

I saw my primary care doc and now have a head CT w/contrast scheduled for Friday night.. after my oncology appt.

It's freaking me out...

 

-Ross

todd121
Posts: 515
Joined: Dec 2012

I've had 3-4 scares this year and each freaked me out and each turned out to not be my cancer (all resulted in me getting extra tests, ultrasound, MRI, CT Scan, heck I even had to have a mammogram, that was interesting...NOT)

I hope that's the case for you.

Unfortunately, not all problems were explained, but all the serious ones resolved themselves on their own. The body heals. I don't know how, but it just does it.

So my hope for you is the headaches go away, whether they find the cause or not and that there's no cancer involved in any of this.

Best to you,

Todd

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