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worriedson714
Posts: 88
Joined: Dec 2019

My dad had two cycles of 5FU and one of oxiplatin and radiation after he was told he was stage 3 but the thing is all threw chemo doc told us the CT scans never showed if the tumor was shrinking and we learned later chemo and radiation did nothing to the tumor but docs kept the treatment going . Doc said no ct scans show that which seemed odd to me so my question is do ct scans show tumor size changes? 

 

Updated - So today we go and get all my dad's ct scan and mri report and biopsy report and that just confuses me and my dad more . Cause at the start of my dad's chemo they mention a rectum thicking in the sigmoid colon but that's it . All threw out my dad's chemo they are measuring his lung nodules and lesions on his liver with ct scans . But none mention his rectal tumor at all . Then after surgery they sent us to University of Michigan like I said who does one MRI and doesn't mention nothing in the MRI report but a mass but says mri image is limited cause my dad can't have mri contrast it gives him bad reaction . So after three months another MRI says same thing but mass grew so they want a biopsy and the biopsy report . Its 2 pages talks about a mass but at the end says test results cancelled so idk what is happening me and my dad are worried and clearly in over our head . We don't even know if we should trust any of these doctors and do another surgery I want to offer help and support for my dad but I just don't know what to do . 

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

If your dad only had two cycles of treatment it could be that might not be enough to show signs of depression.  They didn't give me a scan until after my treatment was completed but they might do things different now.  CT scans can shows signs of changes so I'm not sure what your doctor is referring to.  Did you dad only have 2 treatments so far?

Kim

Tueffel
Posts: 108
Joined: Feb 2020

I need to admit I dont understand what you are writing. Which drugs does your dad get? How many cycles did he have? I read that your dad had 2 infusions with 5FU, one infusion with oxaliplatin and one radiation...

Also when did your dad have the CT scans? I need some more information.

I can tell you how it was with my dad: he had 4 cycles of FOLFOX and then a CT to see how the tumor and especially the liver metastases reacted. I read the doctors letter and even in there they wrote that they could see changes of the tumor in the colon. After that the surgery. 

So yeah I believe that 2 cycles might be too early to show signs. 

zx10guy
Posts: 266
Joined: Dec 2013

From what I'm gathering, your dad has rectal cancer.  The standard of care for rectal cancer is to start chemo first with radiation in hopes of shrinking the tumor before they go in to remove it.  The stage 3 diagnosis is only a clinical staging as this was done via CT scan.  The pathological staging will happen after the tumor is removed and examined by the pathology lab.

If you, your dad, or anyone in your immediate family are unsure about his treatment plan or have questions, ask them directly to the doctor.  Don't end the conversation until you're clear as to what is going on.  I also suggest that you get copies of his scans on CD and the radiology report.  The radiology report will have information as to what the radiologist sees after reviewing the scan images.  Some of the language may be incomprehensible but some of it is in plain English.  My opinion is everyone should be reading their radiology report.

Also has his doc explained the potential side effects of radiation treatment to that area of the body and the possible risks of surgery specific to rectal cancer?

worriedson714
Posts: 88
Joined: Dec 2019

                      My dad was stage 3 rectal cancer was giving cycle of 5 fu and doc said since he did so great on it he did another added oxplatin . Oxplatin caused neuropathy so they cut the cycle short by one dose . Then they did one more cycle of 5 fu . Also during the first cycle had radiation treatment for two months . During this time they did ct scans every 4 months he had several each time doc told us no idea if tumor was shirking said you can't really tell by ct . The raidation doc said the same although he guarented that the raidation was killing thousands of cancer cells each time . After treatment they still said that they didn't know if tumor shrink . But said since the side effects of cancer stopping mainly the bleeding it was a good sign . Dad had surgery was suppose to be 4 ended up being 8 hours surgery doc came out said inflamation and tumor was worse then she thought couldn't get all the cancer . So they sent us to u of m and they made us wait 3 months to check remaining cancer now want to do more surgery . But my dad and our family are just looking back and realizing that treatment might not have been so good . Dad wants more chemo to help before another surgery to maybe save his prostate but they refuse to cause they say last chemo didn't work . So my dad and family are just kind of looking for answers about what to do now and worried another surgery might not get all the cancer either and worried we may be able to save my dad's prostate with more chemo . But if the docs are right maybe chemo will do no good so looking for answers as to why docs didn't know chemo wasn't working the first time . Also my dad hasn't had any chemo or radiation since the middle of last year . So it seems to me like thats abnormal as well but not sure . 

zx10guy
Posts: 266
Joined: Dec 2013

I think I recall another thread you posted.  I'll ask again.  Who is U of M?

Based on the additional information, I strongly urge you all to get a second opinion.  Depending on how you respond with who U of M is, will give me an idea of possible major cancer centers to recommend.

worriedson714
Posts: 88
Joined: Dec 2019

U of M is university of michigan and they won't do chemo either they just want more surgery . Which may include taking my dad's prostate and bladder out . So we are helping chemo can shrink it to prevent that . 

zx10guy
Posts: 266
Joined: Dec 2013

Thanks for the clarification.  Unfortunately, University of Michigan is a NCI designated cancer center.  But there is another cancer center in Michigan you can reach out to:

https://www.cancer.gov/research/infrastructure/cancer-centers/find/waynestatekarmanos

Here is where you can find other NCI designated cancer centers around you:

https://www.cancer.gov/research/infrastructure/cancer-centers/find

A center which is not on the list which has a decent reputation is the Cleveland Clinic.

As far as more chemo, chemo has never been viewed as a method to erradicate visible tumors.  The gold standard currently is to cut out the tumor with clear margins through surgery.  Chemo is used to increase the chances of successful removal by shrinking the tumor so less surrounding healthy tissue needs to be removed with the tumor and to increase the chances of clean margins.

worriedson714
Posts: 88
Joined: Dec 2019

What is nci designated mean ? And thanks for the inform and that's what we hoping for chemo to do to shrink the tumor cause right now they may have to take out my dad's prostate a bladder to do surgery . It's just so confusing cause today I went and got the mci and ct scan reports and they where never measuring my dad's original tumor size they don't even call it a tumor during treatment just thickening . Mean while they kept track of nodules sizes and lesions on his liver but not the tumor like wtf ? And now the mri's he had recently say the imaging was limited cause my dad can't have the mri contrast cause it gave him a bad reaction so even University of michigan just calls it a mass . And the biopsy report says test results were cancelled idk what to think my family and I are in way over our heads. 

zx10guy
Posts: 266
Joined: Dec 2013

NCI or National Cancer Institute is a sub agency under NIH (National Institutes of Health).  They've created a list of medical centers they deem to have the level of specialists and facilities directed at cancer.  This doesn't mean there are no other medical centers out there that will provide the same level of care.  It's just a quick baseline that the facility will provide good care.  Same as when you look for a store with a good BBB rating.

As I mentioned, there's a lot of moving parts here.  Time is money or in this case life.  The more you and your dad just go with the flow where it's clear you all are not certain as to what the medical plan is, the more time you're losing when it comes to getting the proper care.  If you can't get straight answers from your current medical team, seek out a second opinion right now.  Not tomorrow or next week.  Right now.  It doesn't take much effort to pick up the phone and call the other cancer center I provided the information for in my post above.  They may explain the medical plan better than your current doctors.  They may suggest a different approach.  You won't know until you contact them.  Any doctor that has their head screwed on straight will understand why you would seek a second opinion.  Wasting time posting on this board in this situation is not going to help.

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

That is where all my treatment was done in West Bloomfield and a very good hospital.  However, U of M is an excellent hospital.  You just might need to seek additional opinions.

Kim

worriedson714
Posts: 88
Joined: Dec 2019

Yeah thats what my dad is basically wanting is more opinions cause he wants to save his prostate which his tumor is on . But no one will give him chemo cause they say it didn't work before maybe there is no other chemo medications then 5fu and oxialplatin for rectal cancer idk 

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

That was the treatment that was recommended to me as well.  Mine was radiation/chemo first, then surgery, then more chemo.  I'm hoping that he does get a second opinion though as it wouldn't hurt.

Kim

Tueffel
Posts: 108
Joined: Feb 2020

I would advice you to go to a doctor or med student you know quite well and translate these doctors letters. These letters are always written in a "different" language from doctors for doctors. They might be quite confusing if you dont understand everything... Even I have problems to understand them fully and I am 2/3rd done with med school. 

As for measuring the primary tumor: they never measured my dads in the CTs of the colon. I dont know if that is common or that I just did not read the report but I think the tumor size alone might be not important. You know T in TNM scale describes the tumor size but they dont define that to size but more how deeply they penetrate the layers of the colon. I think that is too advance for the CT to differentiate. 

worriedson714
Posts: 88
Joined: Dec 2019

Yeah we going to question the doctors on it and it's true alot I didn't understand but why measure things like nodule size and lesion size on the liver and lungs but not the main tumor ? even if it wouldn't be exact

zx10guy
Posts: 266
Joined: Dec 2013

When I was first diagnosed, the radiologist did measure my tumor in my descending colon.  He was pretty spot on with the size when pathology measured the actual tumor after surgery.  Will a radiologist be able to measure accurately all tumors?  No.  Some times they're off in either directions.  A scan is an image.  The radiologist has to pick out from a bunch of varying structures to figure out what is what.  It's not an exact science and why scan images can be interpreted differently between radiologists.  There are efforts to use artificial intelligence to be able to provide more accuracy in interpreting scans.

The mention of the TNM staging goes towards determining what stage the cancer is.  With rectal cancer, there is a clinical staging which is done solely by CT scan.  With colon cancer, there is no clinical staging.  Clinical staging is the best guess based on what they see on CT.  The staging can and often does change after surgery when pathology examines the removed tissue.

worriedson714
Posts: 88
Joined: Dec 2019

Figured I would use the same thread has anyone had chemo that didn't work but changed to another drug and it worked ? 

zx10guy
Posts: 266
Joined: Dec 2013

When switching to other chemo drugs, you have to determine the genetic mutations that are present in the tumor.  Some drugs work well with specific mutations but fail with others.  One such mutation which is important to determine is if there is BRAF, K-RAS Mutant or Wild, etc.  The ONLY way to determine this is to pull a tissue sample from the tumor and send it off for genetic testing.  5FU is the first line chemo drug for CRC and is the main work horse in treatment.

Have you all sought out a second opinion yet?

worriedson714
Posts: 88
Joined: Dec 2019

Yeah we are going this week to a second opinion cause my dad really wants more chemo before the surgery and 5fu stopped his bleeding but did nothing to shirk tumor Imma ask about gentic side of things with his tumor cause they got some of it out so maybe they know 

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

Hi worried son,  I am sorry to hear about the struggles all of you are going thru now.  Maybe get a consult with an ND to see what they would recommend for synergizing the chemo.  Many many times the chemo just simply is not enough on its own.

worriedson714
Posts: 88
Joined: Dec 2019

Thank you and synerigizing the chemo whats that mean ? A new doctor is calling us this week to set up a consult so just trying to be ready for that . 

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

synergize= help the chemo work better in doing what it should.

ND= Naturopathic Doctor

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