Any insight?

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ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Any insight?

Postby ams5796 » Sat May 27, 2017 11:37 am

So, I got some good scan results a couple of weeks ago....or so I thought. We've been continuously watching my lungs for many years since I've had a couple of recurrences there. A couple of spots showed up about nine months ago that my oncologist finally feels confident that they have remained stable and that they are most likely not cancer. So, for the first time since diagnosis he decided that I can go nine months before my next scan. It felt like a huge step. At the same appointment I brought up that I've been having some leg pain which he jokingly chalked up to advancing age. (I'm 58, not THAT old!) That was the end of the conversation. He never takes any of my very few complaints seriously which is very annoying. Anyway, he read that scan "wet" which he always does and then a couple of weeks later I get the radiologist report in my hospital portal. The other day I received the current report. The lung results were consistent with the information he provided to me. But then there was this:

Gradual change of sclerotic lesion left pedicle L2. Slow developing of lucency in the anterior aspect. Preserved cortex. Less prominent sclerotic changes within this lesion. These findings are indeterminate. Slow growing benign lesion, less likely malignant
primary or metastatic etiology in the differential. Recommend followup elective dedicated MRI of the lumbar spine with intravenous contrast.

I called him when I saw this, but he's on vacation. :( Shouldn't he have mentioned this to me? Am I right to be worried about this? And, is this the reason I'm having the back/leg pain on my left side?

I don't know if anyone has had anything like this show up on a scan and can shed any light on this.

Thanks
Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Any insight?

Postby WarriorSpouse » Sat May 27, 2017 3:15 pm

I am not certain where you are located, but most recommend getting second opinions with major cancer centers like MSK, Dana Farber, MD Anderson and such... Those folks see everything and can provide extra confidence in what they are seeing with all of the data points together, old and new scans ect.

Most insurance covers this and these facilities are in nice locations you can catch a game, a show, or a great meal out:) As President Reagan said, "Trust but verify."

I know that my wife's scans show some lung scaring but they do not consider the items of interest cancer mets until the size changes or other corroborative evidence is present. My wife is an "Olymphian" Stage IV athlete, so lung mets have not been her primary issue though.

The summer weather is here, so find a secondary reason to go to the big city and do something else more fun when you get your second opinion. Let us know what you learn, but always trust your instinct if you think you need a second point of view.

Good Luck!
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Any insight?

Postby MissMolly » Sat May 27, 2017 4:49 pm

Ann:
Each vertebral level of the lumbar spine correspondes to particular nerve roots that innervate the leg in specific dermatomes, extending from the pelvis to the toes.

You can Google "lumbar dermatome distribution" to see a schematic of the front/back of the human body and the dermatomes for each of the vertebral levels. You will be able to see the area of the leg corresponding to the 2nd lumbar leve and if that matches your pain and radiating symptoms.

Your MD has done you a disservice by blatantly discounting your subjective reports of left leg pain.

You know your body better than anyone else. After all, your body is your home.

Look at a map of the body's dermatomes and see if the distribution of your leg pain is in keeping with a L2 irritation, in particular, and irritation of L1-4 as an expanded possibility.
- K -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Lee
Posts: 6202
Joined: Sun Apr 16, 2006 4:09 pm

Re: Any insight?

Postby Lee » Sat May 27, 2017 5:08 pm

ams5796 wrote:I called him when I saw this, but he's on vacation. :( Shouldn't he have mentioned this to me? Am I right to be worried about this? And, is this the reason I'm having the back/leg pain on my left side?
Thanks
Ann


Reading it wet, he may not have noticed it. Butt I suspect your back/leg pain might have something to do with that finding.

About 3 years following my radiation treatment, I had to have surgery for something else. My brother & I were running to the hospital as we were running late. Next day following surgery, I could not walk 10ft without leg pain. It was determined I had developed a clot during surgery (going down my leg). Had several test done and my PCP would send me to a vascular surgeon. It was there I learned the clot was in my hip area. Yes we believe the clot was slow building probably a result of radiation damage. Butt since I was already a walker, my body was working around the clot. No surgery needed and I feel no pain today. Butt we know clot is still there today. Every few yrs, I get some test done to determine blood flow in that leg.

The reason I mention this, I see you had radiation too, maybe a similar situation. Not meaning a clot, butt radiation damage.

Hope you get answers soon.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Any insight?

Postby jhocno197 » Sat May 27, 2017 8:40 pm

I hate it when doctors "forget" to tell you things.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Any insight?

Postby ams5796 » Sat May 27, 2017 9:23 pm

Thanks everyone for all the great information. I look forward to having an MRI and getting resolution to this since I can't help but go to the dark side. I hope it turns out to be something benign and treatable like radiation damage. I did check out the spinal dermatomes and my leg pain seems to be consistent with L1-4. I guess I'll find out more soon when I speak with my oncologist.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

User avatar
CRguy
Posts: 10285
Joined: Sun Feb 10, 2008 6:00 pm

Re: Any insight?

Postby CRguy » Sun May 28, 2017 11:32 am

Hope it IS nothing Ann !

I've had sclerotic boney changes reported on CAP CT scans for years
and so far ... so good !

Cheers and best wishes to you
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Any insight?

Postby ams5796 » Sun May 28, 2017 1:50 pm

Thanks CR Guy!

I'm glad to hear that! I hope I'm following in your footsteps.


Happy you're doing so well.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

User avatar
Maggie Nell
Posts: 1146
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Any insight?

Postby Maggie Nell » Sun May 28, 2017 6:29 pm

jhocno197 wrote:I hate it when doctors "forget" to tell you things.


I'm going to get that etched on my gravestone. 8)
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX
Pending colonoscopy 23 March 2021
Unexpected severe allergic reaction to the prep...big WTF!?
To be rescheduled...

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Any insight?

Postby ams5796 » Mon May 29, 2017 1:05 pm

After ten years it seems difficult to get my oncologist's attention. I brought up this leg pain a couple of times over the past few months just to have him dismiss it. Now that I see the radiologist's report it makes me wonder if my oncologist should have taken me seriously and ordered an MRI. He makes me believe that I'm overreacting. I don't think you can overreact when you're stage 4.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Any insight?

Postby jhocno197 » Mon May 29, 2017 9:07 pm

Maggie Nell wrote:
jhocno197 wrote:I hate it when doctors "forget" to tell you things.


I'm going to get that etched on my gravestone. 8)



LOL!!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17


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