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desnee2029's picture
desnee2029
Posts: 28
Joined: Aug 2017

I asked our surgeon today (Who we will see in two wks for the last time)  as she said our onocologist will be the one we will see for hubs care from then on but.........asked about scan I thought 2nd or 3rd round they would check?  She said 12th last one and not to worry if liver mets weren't smaller if they just weren't growing thats fine too...............burst our bubble...I'm praying they shink so my husband can get a resection and cut it out.........I like her but why do they have to always be brutal honest it seems to me..........but I'm still praying and life goes on....also hub has some dull stomach area pain no real answers scar tissue maybe she said keep track and pain med........Thank you all for being here.

 

 

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

I had no scans during treatment, as my Oncologist told me that they were of no help, at least in my case. 

As for Doctor's being brutally honest. I think its s fine line for them. I prefer them not to beat around the bush. I want it straight from the hip.

Others, like yourself, may not want to hear things so 'brutally' as you put it.  

I guess, if they get to know you over time, they may be able to assertain in what manner you want your information, but when you're a new patient, it must be hard to know quite what to do. 

I have an Oncologist who laid it all out before me, right at the very start. And even now, when I get excited about being NED for three years, he still warns me that things can go south very quickly.  I like him. It works for me. 

I wish your husband all the best as he continues with his treatments. It helps for him to have such a loving and concerned wife by his side. 

Tru

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

I had surgery then a port put in a month later for chemo.  I had a PET scan done before chemo, which turned out to be helpful when I had a met a year later grow, a MRI at three months and then two months after chemo done (about 8 months).  The items were so small that they were labelled inconclusive, though the one that seemed to shrink and then grew when done with chemo was a met.  

I like the more upfront approach at this point.  One thing is frustrating is having to have an appointment to go over results which can delay news.  At this point I have had cancer 3 times in 2-1/2 years.  I do not need hand holding.  I much rather get the results and if planning for next thing is needed, I can go to visit.  In general I go with expecting bad news until fiurther information comes along.  For instance, something bad on the scan.  Not that I get down by that approach, but more "braced" just in case.  My oncologist told me at the beginning that based on my general good health, even if something happens down the road they feel good I can be treated.  The only time I thought positive waiting for a result, was the time the met was confirmed.  Which was more of a bummer than if I was prepared for it the other way around.  Go figure.  Cancer does some strange things.

Best wishes to you and your husband. It is a tough thing to go through, but doable.  (I am Stage IVB, two surgeries, 6 months chemo, a little over 2-1/2 years since initial diagnosis).

zx10guy
Posts: 207
Joined: Dec 2013

I've said this numereous times here and on other boards.  If you live in the US, you DO NOT have to wait till you have an appointment with the ordering physician to get your scan results.  I'm coming up on 5 years since diagnosis and have never waited more than a day for results.  The one time I did wait a day was because my scheduled appointment with my oncologist just happened to be the next day after my CT scan.  Typically, I schedule all of my scans in the morning.  I try to be the first in.  And like clock work, I've been able to get the radiology report a few hours later in the afternoon the same day.  Many times the report is ready 2 hours after the scan was completed.  On one occasion, my PET report was ready 30 minutes after I walked out of the radiology office.  I didn't know it was ready that quickly as it was 4PM at the time I left and assumed I would be able to get something in the morning.  I know this by the the time stamp shown on the report when the radiologist signed it.

This system has worked for CT w/ contrast, PETs, MRIs, and Ultrasounds that I've had; plus with two different scan facililties.  All it takes is for you to just call back and ask if the report is ready.  If it is, you just drive back to the office and they print it out.  There is absolutely no need to go through scanxiety for any of your scans.

You also should get a copy of your scan images before you leave from having your scan done.  They will burn the images to a CD.  It takes a few minutes for them to do this for you.  Having copies of both your scan images and reports should be a routine thing for everyone here.  My previous oncologist would sit down and go through the scan images with me during our follow ups.  So I have some idea of what I'm looking at when I go through my CT scan images.  Particularly my liver, where I have two hemangiomas.  He pointed those out and knowing the color/texture differences of these hemangioma lesions, gives me an idea of if anything possibly new pops up.  But in general, I wait till I get the official report before getting worked up on anything I may suspect.  Having previous scans to compare with also helps to see if there were any changes; which is what radiologists also do.  PETs are much easier to read and tell if something is going.  If there is a glowing red or dark black spot (depending on the scan view selected), there's some sort of potential hypermetabolic activity at that spot.  Again, my previous oncologist would also go over PET scans with me so I know what to look for and what not to freak out about.  On every PET scan, your brain, kidneys, and bladder will always light up.  The software included with the CD to view the PET images will also tell you the SUV readings of any particular spot you pick.

I'm not a radiologist nor do I have any deep medical training/education.  I'm just inquisitive about things.  I don't expect everyone to go out of their way to try to figure out how to read scan images.  But again, it's not necessary to stress yourself out waiting for scan reports when you can just pick up the phone, find out if it's ready, and go get it.

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I  was diagnosed with rectal cancer in April 2015; a CT scan a week later showed something in my liver.  A PET scan in May confirmed liver mets. The surgeon wanted to  make sure the liver mets were taken care of  first before  surgery for the rectal tumor.  I had a port placed and began  eight rounds of FOLFOX plus Avastin  in May, finishing up in September. A CT scan in October showed that the liver mets had shrunk and I began radiation with a 5-FU  pump  24/5 to try to shrink the rectal tumor prior to surgery.  A CT scan in January 2016 showed that the rectal tumor had shrunk- not a  clinically complete response, but pretty close. However the liver  tumor had grown. After 4 rounds of 5-FU, Fusilev and Avastin,  a CT scan in late March  showed the liver tumor had grown another 18% and I  was switched to  Irinotecan and Erbitux in April 2016. A CT scan in  late June showed that the  liver mets had shrunk to the point they could be ablated and that was done in August 2016. I still get CT scans every three or four months and am still on the Irinotecan and Erbitux. Last CT scan in July showed everything was stable.  I meet with the surgeon later this month  to see if he thinks we should do surgery  now. So far, we have been managing the cancer   like a  chronic condition, which is fine  with me, and my   my medical team have been  up-front with me, which is what I prefer. My oncologist sees to it that  my CT scan results are availabe on the patient portal so I don't have to wait for results, which  is great. I'm now  28 months out from the initial diagnosis so I've had just over two  good years where I've felt good, been able to go about my  business  pretty much as before- with some modifications. I've had only two overnight stays in the hospital ( the ablation and a collapsed lung  during the second port placement in November 2016) and very little down time  for which I'm very grateful. Cancer is a strange  thing to deal with and everybody reacts differently and  has a different coping mechanism. Sometimes it takes a while to get it all sorted in your head, but  in time, you find a way to  deal with it all that works best for you. Best wishes to you and your husband.

Grace/lizard44

Annabelle41415's picture
Annabelle41415
Posts: 6216
Joined: Feb 2009

They didn't do scans on me during treatment and waited one month after chemo to do a scan.  It was scans for 6 months for 3 years and then yearly for the last 2 years.  Things don't usually change in 3 months unless it is agressive and most insurance companies won't pay for excessive scans - plus it's not good for all that radiation. 

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I didn't have any for quite some time, either. I can't remember exactly, sorry.

Jan

Joan M's picture
Joan M
Posts: 380
Joined: Oct 2016

I had scans every 3 months and then none for 8 months.  Found out that the tumor in my lung is growing and went from approx 1 cm to  1.4cm.  The doctor wants to do a cryoablation, or said I could do radiation.   

I don't like getting the scans, and would prefer every 6 months to be sure how everything is going, that there are no new tumors, etc.   They are helpful to see if the tumors are shrinking, growing, or if there any new tumors.

plsletitrain
Posts: 253
Joined: Jul 2017

I've read radiation isn't really good.  I've even read it could trigger cancer (Really????).  But I don't know, without it, then we won't know the status of our tumors.  I'll probably just have mine in moderation.  Not too frequent.  I think after the last chemo is reasonable, to see how the chemo affected the tumor.  But my onco had me CT scanned halfway within my chemo which was just last week.

zx10guy
Posts: 207
Joined: Dec 2013

Yes.  Large amounts or prolonged periods of radiation exposure is not good for you.  The reason is how radiation affects the DNA in your cells causing DNA damage or mutations.  At a simple level cancer is a cell with a change in the DNA structure which causes the cell not to behave like a normal cell.  This manifests itself into aggressive cellular division/replication and the inability to die off normally.

This is why there's so much talk about educating people on wearing sun screen while outdoors.  The ultraviolet radiation that is part of sun light is what causes cellular damage to your skin.  At best, you get sun burned.  At worst, you get melanoma or skin cancer.  This is also why areas which have had nuclear incidents whether it be from a atomic bomb detonation or from a nuclear reactor accident have had high incidences of cancer; particularly with cancers like thyroid and leukemia.

mozart13
Posts: 118
Joined: Nov 2016

I had Ct, MRI x2, colonoscopy x2 after my chemo/rad as part of restaging, all ordered by surgeons.

Chemo/rad was given initially over 25 days in hope there will shrinking/downstaging of cancer, no tests were done during therapy, we didnt know if it worked or not till is over, thats like your situation, I wasnt concern, my focus was how to get maximum out of therapy.

I am on folfox now, my surgeon said that he will do CT, MRI and colonoscopy 4-6 weeks after this is finished,  but my situation is different.

There was one patient that went for CT scan during chemo therapy, was told by oncologist since there is increase in size, oncologist changed chemo., I think that parient was on maintance dose , surgery was not option.

Before the start of my chemo/rad, on my first visit to oncologist, I was told "Its in Gods hands now", simillar what you saying now Desnee, and I new that was my new realitty, I am not religous at all.

By reading what people write and looking at their profilles, I realised that there is no rule in this bussiness, surgery, no surgery, my case , cancer might come back, in same place or as distant methastassis, will it happen, who knows, am I buying time, yes big time, and hopeing there will be some vaccine or new treatment down the road where this disseasse will be treated like chronic disseasse, like high blood pressure, hiv, etc....

Good luck to your husband!

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