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Help! ONC just said he wants a CT scan

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Penny View Drop Down
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    Posted: Mar 28 2017 at 7:28pm
Hi Everyone,

I am so concerned!  Today was supposed to be a great day.  I finished my fourth and final TC infusion and am done with Chemo!  At my oncologist appointment I told him of a slight abdominal pain I was having under my left rib (it comes and goes and is not very painful).  I am given Neulasta after each infusion because I have very low WBC and have read that it can cause spleen enlargement.  He palpated my spleen and liver, all good.  Reviewed the labs that feed from the liver and spleen, all good.  Then he said he always routinely orders a full CT scan post completed chemo sessions (I had asked him on my 3rd infusion if he does any scans and he stated to me that with a stage 1a with no lymph node involvement a scan is unnecessary).  So I was very surprised that now he is saying this is routine.  I asked him is this because I mentioned abdominal pain.  He said no.  I reminded him of our previous conversation, he had no recollection.  So, now I am panicked.  Does he think I have stomach cancer?  This is such a shift from what he said 3 weeks ago.  To top it off, he would like me to wait a month for the scan.  Has this happened to anyone else? Is it possible to have stomach cancer from a Stage 1a TNBC that was diagnosed 12/7/16?  Is it routine to have a CT scan after chemo if complete? So freaked out.

Any response is appreciated.  

Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2017 at 10:26pm
Hi, my onc told me the same thing, he wanted me to have a CT a month after I had finished treatment. For me it was a good thing. I went crazy waiting for it, but once I saw the results were clear it was so very empowering and made me feel like I had hit my goal posts! Oncs do change their minds and I'm with you a 100% with the feeling that it's a personal thing, but more often than not it's just that your doctor acknowledges that you have Tneg and it's better to be safe than sorry. I've seen so many of the women here who really wanted to have a scan at the end and their doctors said no. I'm just glad my doctor and yours decided to go for it.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2017 at 11:32pm
Thanks for the post.  I really wanted to celebrate today and felt like a bomb was dropped that I wasn't expecting.  I think I need to get some help on this.  With TN, we have to worry a bit more and this has taught me that I may need some help handling the ups and downs.  So grateful I have people on this blog that I can turn to.  You have no idea how you have comforted me.  Thank you :)  Penny
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote barrycarrot Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 9:06am
Penny, my diagnosis was a lot like yours. While I didn't have a CT scan after treatment was done, I would have loved to have one at the time. To me, they are reassuring. Like mainsaliset said, it always feels good to see a clear scan and then you can really take a deep breath. I think you will find that the ups and downs do eventually level out after some time but to me, another scan is always welcomed. Yes, they are stressful leading up to them but I just love that feeling of reassurance after you get the good news. I just pray that always continue to stay that way!
 
That being said - I had that same under the rib pain and I STILL get it off and on, a year later. I'm sure it's nothing. Our minds automatically run to the worse scenario. Hang in there and celebrate being done with chemo. That's a huge step behind you on your path to beating this cancer!
 
Hugs,
Carrie  
Age 38, DX: 12/10/15 Stage 1 TNBC, BRCA-, 7mm tumor in left breast, no nodes, ACT Chemo 1/4/16 - 4/15/16, Lumpectomy 5/16/16, PCR (Praise God!), radiation 6/22/16 -8/3/2016
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 9:11am
So glad you're feeling better. It's such an emotional roller coaster getting through treatment and then finding ways not to freak out with every symptom or headache or just plain old terror lands in your lap. I have no idea if I'm full of bs or not but for me I found that the adrenal overload of going through treatment was a real thing. I found I had anxiety attacks, just plain fearfulness on a regular basis and I think there's some kind of sensitivity overload that happens where anxiety was more easily triggered. I did end up getting a script for anti anxiety and I did start an adrenal supplement. The adrenal supplement helped a lot but I think it's a good idea to only take it for a limited time...I took it for 2 months then quit. Being afraid is no fun, it's hard to overcome but it's very empowering when you find ways to fight back. Good luck to you, hang in there!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (1) Thanks(1)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 5:15pm
It sounds like you have really good care, and you ask lots of questions.
 You said:
(I had asked him on my 3rd infusion if he does any scans and he stated to me that with a stage 1a with no lymph node involvement a scan is unnecessary)

You caught this very early, I'm not a doctor, but a stomach cancer doesn't just arrive out of the blue, the chemo drugs can certainly cause this, but I just want you to know, but I'm not a doctor, so don't sue me, if you had stomach cancer, a lesion, let's say, it would interfere with you digestion, maybe you would not be able to hold anything down, I would think, it would start gradually and get worse...
Hope this helps...
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 7:11pm
Thanks Gordon - I see your posts all the time and feel you have a good handle on all things TN.  Don't worry, I know that no one on this site is a doctor so no lawsuits coming from me.  I just appreciate being able to bounce off my concerns when I have them and have people who have walked this path before me help me make sense of my fears.  

I will certainly try and assist any new comers once I become a "senior" contributor as well.  The waiting and worrying is the hard part and to be honest the "flip" from one conversation to the other with my onc is the thing that set me off.  I mean, how can he be so adamant that no scan is needed (and I mentioned PET/CT) and then all of a sudden it is routine once I tell him about minor rib pain and abdominal discomfort.  Geez, talk about freaking people out - then say, well we want to make sure you don't have stomach cancer from a rogue cell - I mean, c'mon.  Anyway, thanks for your eye on this and the reassurance. 

Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2017 at 9:05pm
Penny: I'm sorry if you have abdominal pain, if your doctors have agreed to give you a PET scan this would be comforting, if you have issues with insurance paying for anything, please tell us, my wife and I are now on Medicare, so tRump has not expressed his agenda to decimate it (yet.) We did qualify for the government subsidies up until 2016...





Edited by gordon15 - Apr 03 2017 at 8:44am
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2017 at 10:22pm
Gordon, your comment on Trump is much more gentile than mine would have been.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2017 at 10:54am
Quick update - 

I got a call from my medical onc office on Thursday - the insurance (blue cross) has denied a CT scan "medically unnecessary".  So, now I wait.   Who knows what will come. 

Thanks to all who commented.  I am feeling better and 4 days past my "4th round" so I can see the light.  :)

Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2017 at 6:41pm
Penny: We are glad you are feeling better, it is standard procedure for the Cartel  Mafia Insurance to deny your request.

 If your oncologist thinks you need a PET scan,,do  you still have abdominal pain?and talk to your oncologist.
 PET  scans your entire body for metabolic possible cancer cell-activity. The oncologist-patient relationship really means a lot. My wife likes her Oncologist a lot, and trusts him.

There are reasonable decisions made, if they don't think a CT scan is required, doctors try to do their best for your immediate needs.


My wife is having a PET every 3 months. But she has an aggressive rare TNBC,
now Scripps/Scan California but we are maybe lucky to qualify for Medicare at this time .




Edited by gordon15 - Apr 03 2017 at 8:47am
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2017 at 7:39pm
 Obama  allowed the Health Insurance Cartel to monopolize( nobody has confronted him on this) into (5) companies:
I believe they also bought pharmacy benefit companies and doctors clinics so they can control . Sad USA is this way.

United Health
Aetna
Anthem
Cigna
Humana

Recently, as a monopoly, Aetna cancelled their merger with Humana, but because they didn't get approval, they withdrew all insurance from some State-provided exchanges, this is tantamount to extortion.






Edited by gordon15 - Apr 03 2017 at 8:51am
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2017 at 8:52pm
Difference between CT & PET scans. btw, always good to understand that scans do submit the body to radiation. And radiation is not a friend of DNA. Take a look at the differences in time that it takes for each scan.
http://www.diffen.com/difference/CT_Scan_vs_PET_Scan
(I'm sorry, my cut and past job is really poor, you'll get more from the article than the way it came up from me here)


Cost
CT Scan costs range from $1,200 to $3,200; they usually cost less than MRIs (about half the price of MRI). PET scans cost $3,000 to $6,000; much higher than regular CT scans.

Time taken for complete scan
Usually completed within 5 minutes. Actual scan time usually less than 30 seconds. Therefore, CT is less sensitive to patient movement than MRI. Usually takes 2 to 4 hours

Radiation exposure
The effective radiation dose from CT ranges from 2 to 10 mSv, which is about the same as the average person receives from background radiation in 3 to 5 years. Usually, CT is not recommended for pregnant women or children unless absolutely necessary. Moderate to high radiation

Principle used for imaging
Uses X-rays for imaging Radioactive tracers that emit positrons are used. The positrons are tracked by the system to generate a 3D image over time.

Effects on the body
Despite being small, CT can pose the risk of irradiation. Painless, noninvasive. Radiation risk from the injection of a radioactive tracer is about the same as an X-ray

Acronym for
Computed (Axial) Tomography Positron emission tomography

Scope of application
CT can outline bone inside the body very accurately. PET scans can image biological processes within the body.

History
The first commercially viable CT scanner was invented by Sir Godfrey Hounsfield in Hayes, United Kingdom. First patient's brain-scan was done on 1 October 1971. The compound was first administered to two normal human volunteers by Abass Alavi in August 1976 at the University of Pennsylvania.


Edited by mainsailset - Apr 02 2017 at 8:56pm
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2017 at 11:10pm
Gordon,
 I agree with you 100% percent the AMERICAN system is a CARTEL, they don't care it is all about the almighty dollar,what a shame how can they sleep at night?Greed what a waste!A persons life doesn't matter only a profit does.Wow this is AMERICA! 
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (1) Thanks(1)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2017 at 11:31pm
Penny,
I am so sorry you have to deal with this nonsense being denied a test medically unnecessary are they insane! You should try to appeal you have every right to have a test done to deny a cancer patient any tests should not be tolerated what are they thinking? you are going through enough how heartless shame on them,you have enough on your plate no one should have to worry about being approved for tests I feel so bad and am very sorry you have to deal with this.I would fight them with everything you've got.I pray everything turns around for you.
Hugs sent to you...
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2017 at 9:24pm
Hi

I am not sure if mine is medically necessary.  My oncologist flipped on this - at first he scoffed and said of course I would not need a CT scan (or PET) as I am stage 1a with zero node involvement.  Then, during the final infusion he said - yes, it is routine.  It is not in the NCCN guidelines (even for TN).  So, I have no idea.  I don't care for my oncologist, doesn't want to answer questions, quick to come in and out of the room. No real information, doesn't give statistics.  I moved forward because I needed to get a plan together and no one in my area was taking new patients.  Now that I am "done" with chemo, I go to radiation and feel like I will switch my medical onc for my follow up after care to someone else.  That is how I am feeling now.  

You note your wife has the "aggressive and rare" TNBC.  I don't know the answer so I need to ask, aren't all TNBC aggressive and rare?  I do know stage and grade are indicators.  I just assumed I had the aggressive one too?  

Thanks for your response.  I hope your wife is doing well and thriving.  Appreciate all the feedback for sure!

Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 6:05pm
Penny  YOU SAID :  >>>" I am stage 1a with zero node involvement and all... "<<<

Just some history here, which is documented in books, I read this ...

 "DCIS" (still-insitu ductal breast cancer)(Breast Ductal Cancer In-Situ) , the BigPharma Cartel managed to categorize "DCIS" as cancer. This in my opinion, is not cancer. They did this to qualify millions of breast-potential patients for chemotherapy. I invite everyone on this forum to look up if Stage One is actually considered cancer if it's sitill DCIS, which means it has not grown past the breast duct, that becomes Invasive Ductal Carcinoma (IDC)

While my wife was having tests at Polsters Breast Clinic/La Jolla they have an extensive library in the waiting room/lobby, there were books that focused on the change in the medical community criteria... where they would now consider DCIS as IDC, all you can look this up. I would urge anyone reading this to question this.

If Stage 1 without any lymph node involvement is TNBC, that becomes a more important criteria, but still, the question is...is your cancer  "Invasive Ductal Carcinoma" ?
"IDC" and also TNBC?

If my wife's oncologist walked out of the room, without fully answering your questions, this is the time where perhaps you need a male friend, or aggressive female friend, to step into his face. (I will volunteer, but I'm probably, geographically too distant)

I don't know if you need radiation at this point, you have no lymph node involvement, I would, if you were my wife, be inclined to get a second opinion. I realize you are TNBC but Stage 1/no lymph node involvement is something some other members my offer opinions, and if you were my wife, I would put that on hold.

My wife had 4 lymph nodes cancer in her latest battle , at a Stage 3A, so there was no question the oncologist wanted/needed to use the most aggressive chemotherapy/surgery/radiation.

You have a very ealry case of TNBC, I'm not a doctor, but I can tell you flat-out, because I've read a lot, and I don't think there is any urgency to go to radiation, unless you have confidence in your oncologist and seek anther opinion, this is not a situation where your are going to die, maybe you can get another opinion.




Edited by gordon15 - Apr 04 2017 at 6:14pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 6:22pm
HMMMM.. So, I do have Invasive Ductal Carcinoma (stage 1a with .6cm).  At .5 chemo was "optional" but .6 and TNBC pushed me to chemo.  I know I do not have DCIS.  So, now I wonder, did I do this to aggressively?  Once they said TN, I moved fast from dx, to surgery to chemo.  My radiation oncologist appt. is tomorrow.  Do I ask if there is any chance I do not need radiation?  I just don't know... 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 6:33pm
Penny,

The radiation oncologist will be able to explain, but with a lumpectomy, radiation is almost always recommended.  Based on the NCCN guidelines, it looks like radiation is needed.



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 6:34pm
I agree with Gordon re:  the oncologist.  Maybe it's time to look for a new one?
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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