CT Scan Results (good) but Oncologist Rant

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kellywin
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Location: Northern CA

CT Scan Results (good) but Oncologist Rant

Postby kellywin » Fri Mar 25, 2016 4:30 pm

Warning, this is mostly a rant. Hopefully therapy for me just writing this out...

So I had a CT scan on Wednesday. I did it at a new facility in town which was great. They provide the results same day (even greater). Anyway, I picked up my report and the overall impression was "no specific evidence of recurrence" = all looked good to my untrained eye. I went over it in detail and there was a comment on the Chest CT results that states:

Bones: There is a small well-circumscribed lucency within the right facet joint best seen on image 89 of series 13. However there are no aggressive appearing lytic or blastic lesions.

So while the results sounds ok, there's something there that I don't understand. So here's where my pissed off-ness comes into play. I call my Oncologist, get his med tech on the phone and say, I got a CT, yada yada, can the doctor please explain this ONE thing to me. She tells me, oh the Nurse Practitioner ordered it, so Dr. Randolph can't review it (I call bullshit, but whatever) so I'll transfer you to her med tech. Ok, so I get voicemail, repeat the same story, I want to know about the bone comment, Dr. Google isn't my friend, my appointment isn't for 2 weeks, I can't wait that long, blah blah. I get a voicemail a couple hours later from a different nurse practitioner who says "I got your message, I'm with patients all day in the infusion center, and I can't answer your question anyway Dr. Randolph has to and you have an appointment in 2 weeks, so you'll have to wait." At this point, I am pissed. I want 1 answer, to 1 question "do I need to worry?". I call back, tell the receptionist my story again, she apologizes and says someone will call me by the end of the day. Of course, this doesn't happen. I call back today, get someone on the phone who says that my doctor did look at it and there's no recurrence. Of course I'm pissed again because I already know this I just want to know about the bone thing. After 15 minutes of her telling me that she's not a doctor and that unless there's something really wrong, I have to wait for my appointment, I got out of her that it's not something to worry about. But I still don't know what it is and I find it unacceptable that no one can call me and just tell me what it is. She had the nerve to tell me that my doctor "can't just drop everything and look at my CT", WTF, isn't that what he's there for?? My prior Oncologist would have called me in a heartbeat, but he retired not long after I finished treatment.

Sorry for the long rant, but I am just so mad. I feel a tad better just writing this.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: CT Scan Results (good) but Oncologist Rant

Postby midlifemom » Fri Mar 25, 2016 4:36 pm

Rant justified!
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: CT Scan Results (good) but Oncologist Rant

Postby Delinda2 » Fri Mar 25, 2016 5:11 pm

Absolutely justified!! Makes me wonder about an onc & staff that are so insensitive to the agonies we suffer with every scan, scope, biopsy, etc. Smack 'em!
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

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chemo sabe
Posts: 444
Joined: Fri Mar 09, 2012 9:01 pm

Re: CT Scan Results (good) but Oncologist Rant

Postby chemo sabe » Fri Mar 25, 2016 5:50 pm

I understand your frustration. They tell you to call anytime but when you do, there is no answer. But leaving that be for a moment, I must paint a slightly different picture for you. Your Onc really will not understand "bones and other skeletal issues" any more than you can. He just has access to a larger medical library. Here is where your family doctor can help, particularly when there is a big time gap to see your Onc. Your family doctor can read that report and understand it and either get you to a specialist or tell you to relax. It is not all on your Onc. I believe you should be proactive and get the right doctors involved when a scan shows non-cancerous issues. (Oncologists deal with cancer)
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

nkoske
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Joined: Fri Feb 22, 2013 2:00 pm
Location: California

Re: CT Scan Results (good) but Oncologist Rant

Postby nkoske » Fri Mar 25, 2016 5:55 pm

I'd be pissed as well.

Wish I had more to say about a lucency in a facet joint. Facet joints are in the spine. One thing that would be helpful would be to know what level of the spine it's at. With that said, you said it's from the chest CT with like means it's in the Thoracic spine which is a long way from your primary tumor location. If I had to put money on the outcome, they'll likely watch it. One draw back of going to a new facility is the doc looking at the scan may not have the previous scans to compare against. It could be something that was there on previous scans that they old docs didn't note. It could also be that the new CT place has a new shiny CT machine that takes finer slices and has better resolution and they could see this now, where they couldn't before.

I agree with what chemo sabe has to say, but will add some oncs will look at scans, I know mine did.

Make sure you ask if they've compared the scans to the previous scans. If they haven't, I'd insist. May not be a bad idea to talk to the radiologist at the new place to see if he was able to look at the old scans for comparison.

I see things like this all over my reports:

COMPARISON: Multiple priors most recently June 16, 201


There is persistent thickening of the lateral right and posterior aspect of the rectum below the level of the anastomosis, less prominent than on prior, and in keeping with post-treatment changes.


identified is soft tissue thickening and hyperemia, best seen on image 22 of series 7 and image 24 of series 2, similar to the CT of 9/24/2014.


I'm so glad my Onc during treatment is a Friend and no longer my Onc (I meet my third Onc next week).

I had an MRI Wed. He can still get all of my reports. I texted him Wed evening, Wed night he calls me...we have a chat and he e-mails me the report. No more dealing with the Hospital BS.
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: CT Scan Results (good) but Oncologist Rant

Postby peanut_8 » Fri Mar 25, 2016 6:08 pm

Kelly, the staff at your new facility sound like they're over-worked. Not only that, they're not very compassionate, or organized, and may not be the sharpest tacks in the drawer. You shouldn't have to wait 2 weeks or have to try and wheedle information out of them. :twisted: :evil: :twisted: Good luck persuading them.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

pantufla
Posts: 148
Joined: Thu Dec 03, 2015 12:44 pm
Facebook Username: kelleykulina

Re: CT Scan Results (good) but Oncologist Rant

Postby pantufla » Fri Mar 25, 2016 6:37 pm

kellywin wrote:Warning, this is mostly a rant. Hopefully therapy for me just writing this out...

So I had a CT scan on Wednesday. I did it at a new facility in town which was great. They provide the results same day (even greater). Anyway, I picked up my report and the overall impression was "no specific evidence of recurrence" = all looked good to my untrained eye. I went over it in detail and there was a comment on the Chest CT results that states:

Bones: There is a small well-circumscribed lucency within the right facet joint best seen on image 89 of series 13. However there are no aggressive appearing lytic or blastic lesions.

So while the results sounds ok, there's something there that I don't understand. So here's where my pissed off-ness comes into play. I call my Oncologist, get his med tech on the phone and say, I got a CT, yada yada, can the doctor please explain this ONE thing to me. She tells me, oh the Nurse Practitioner ordered it, so Dr. Randolph can't review it (I call bullshit, but whatever) so I'll transfer you to her med tech. Ok, so I get voicemail, repeat the same story, I want to know about the bone comment, Dr. Google isn't my friend, my appointment isn't for 2 weeks, I can't wait that long, blah blah. I get a voicemail a couple hours later from a different nurse practitioner who says "I got your message, I'm with patients all day in the infusion center, and I can't answer your question anyway Dr. Randolph has to and you have an appointment in 2 weeks, so you'll have to wait." At this point, I am pissed. I want 1 answer, to 1 question "do I need to worry?". I call back, tell the receptionist my story again, she apologizes and says someone will call me by the end of the day. Of course, this doesn't happen. I call back today, get someone on the phone who says that my doctor did look at it and there's no recurrence. Of course I'm pissed again because I already know this I just want to know about the bone thing. After 15 minutes of her telling me that she's not a doctor and that unless there's something really wrong, I have to wait for my appointment, I got out of her that it's not something to worry about. But I still don't know what it is and I find it unacceptable that no one can call me and just tell me what it is. She had the nerve to tell me that my doctor "can't just drop everything and look at my CT", WTF, isn't that what he's there for?? My prior Oncologist would have called me in a heartbeat, but he retired not long after I finished treatment.

Sorry for the long rant, but I am just so mad. I feel a tad better just writing this.


What A holes.
DH T2 N1b M0. 3/15 positive nodes.
Stage IIIA moderately differentiated adenocarcinoma.
Tumor size 6 cm.
Left hemicolectomy 10/26/15.
FOLFOX 11/30/15 to 5/2/16, full 12 cycles.
10/3/16 CT scan clear.
11/10/17 CT: "Focal opacity along the left lower lung, 7 mm. Two small peripheral opacities along the right lower lobe, 2 to 3 mm. A few small to mildly prominent left-sided central mesenteric nodes, up to 13 mm.
June 2019: NED.
2020: NED 5 years. 4 mm lung nodule on CT

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: CT Scan Results (good) but Oncologist Rant

Postby Lydia666 » Sun Mar 27, 2016 7:00 am

Waiting suuuuucks!!
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

zx10guy
Posts: 233
Joined: Mon Jan 07, 2013 12:54 pm

Re: CT Scan Results (good) but Oncologist Rant

Postby zx10guy » Sun Mar 27, 2016 8:39 pm

What you've gone through is the reason why I decided to change oncologists myself. While my previous one has been spot on with how I've been progressing, the inability to get a hold of him was really upsetting. The last time I tried calling him, I wanted him to explain why the scale for my CEA tests had changed with the lab he uses at the hospital. He finally calls back but calls my wife instead of me even though I was leaving him messages although she did call and left a message too. I think he didn't want to call me because I get into the weeds of any medical discussion I have with him.

My new oncologist has been wonderful with communication. When I saw him for a second opinion before switching to him full time, he gave me his cell phone number. I hadn't even been his patient and was just seeing him for the first time. I found this shocking he would do something like this. When I saw him again to change over to his care full time, he again made sure I had his cell phone number. When he says he will call back, he calls back. When I call he has usually picked up or will call back if I leave a message. To keep from abusing this privilege, I will text message him with any non so urgent questions and he responds back. I also have his email for another line of communication. I'm still blown away with the accessibility of my new oncologist especially since he's the owner/founder of the oncology clinic with several other doctors as part of his practice.

As far as the concern brought up about going to a new place for scans, this shouldn't be a concern if you have been keeping copies of your previous scans. I have copies of all scans and xrays I've ever had done to me. When I changed to the new oncologist, he uses a different scanning facility. I brought all of my previous scans for the new radiologist to compare. I also provided all the scan reports. This is why I always tell people to get copies of their scan images along with the radiologist report.

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Jacques
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Location: Occitanie

Re: CT Scan Results (good) but Oncologist Rant

Postby Jacques » Mon Mar 28, 2016 4:41 am

kellywin wrote:... Bones: There is a small well-circumscribed lucency within the right facet joint best seen on image 89 of series 13...

Please let us know when you get more clarification on the "well-circumscribed lucency" issue. Thanks.

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vilca11
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Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: CT Scan Results (good) but Oncologist Rant

Postby vilca11 » Wed Mar 30, 2016 8:56 am

Kelly, I think that no one will be able to give you an explanation you expect. Lucency just reflects on the density of the tissue in comparison with the surrounding density of the tissue. So, you have a discrepancy in density on the facet join. They do not know the reason for this discrepancy and therefore cant give you an answer. In my opinion, you have 3 options - 1) get your old scans for comparison in your new facility to see if it was there before (not a conclusive option, though - different equipment) 2) wait for about 3 mo and do a repeat CT to see if your small lucency got bigger 3) do PET scan to see if it lights up - but it is small, might not pick up. I think, your best choice would be #2, but I understand how uncomfortable, to say the least, it would be... So, when you see your doc and ask your questions, you are not going to get much in response - they just do not know what this change of density is caused by.... I would not worry much, sweetheart - it would be quite unusual to have a first met on the bone for a CRC patients.... We are "famous" for liver, lung, peritoneum... :D
Hugs, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: CT Scan Results (good) but Oncologist Rant

Postby kellywin » Wed Mar 30, 2016 3:05 pm

Thanks everyone for your comments & support. This group is the only set of Oncologists in my town, I am going to be looking elsewhere is surrounding areas because I've just had it. I don't expect miracles and I don't expect them to immediately know, I just want someone to tell me something, like, "hey don't worry" or something. Vilca your comment:

vilca11 wrote:Kelly, I think that no one will be able to give you an explanation you expect. Lucency just reflects on the density of the tissue in comparison with the surrounding density of the tissue. So, you have a discrepancy in density on the facet join.


^^is all I was really wanting - someone to explain what it meant, not necessarily why or how, but something, anything, just someone to say something about it instead of giving me the run around. And basically refusing to call me back is totally not acceptable, really pisses me off. You know that they'd never stand for this if something happened to them. Very frustrating.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

Grace14
Posts: 418
Joined: Mon Oct 24, 2011 7:42 pm

Re: CT Scan Results (good) but Oncologist Rant

Postby Grace14 » Wed Mar 30, 2016 4:40 pm

Mine says the same thing on my reports from last year, and 2014. It reads Bones: There is a stable 9mm Lucency within the manubrium, possibly an enchondroma. There are no suspicious lyric or blastic osseous lesions. Then at the end of the report it says stable 9mm manubrial Lucency, likely benign. My oncologist was not worried about this one bit. I hope this helps.
Diag Stage 2a R/C April 2010 at 38
Rad/chemo 6 weeks
Apr surgery July 2010
Folfox 4 months
Jan appendix removed
Feb diag papillary thyroid cancer no treatments stage1
Ned so far!!!
Mother of 4 boys 21 18 11 8

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kellywin
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Location: Northern CA

Re: CT Scan Results (good) but Oncologist Rant

Postby kellywin » Wed Mar 30, 2016 6:16 pm

Grace14 wrote:Mine says the same thing on my reports from last year, and 2014. It reads Bones: There is a stable 9mm Lucency within the manubrium, possibly an enchondroma. There are no suspicious lyric or blastic osseous lesions. Then at the end of the report it says stable 9mm manubrial Lucency, likely benign. My oncologist was not worried about this one bit. I hope this helps.


Thank you Grace! Happy to know I am not alone! The new facility I went to has brand new equipment so it might have picked up something that was missed on prior scans.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only


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