Nohogirl wrote: . . . Our new oncologist, on the other hand, believes that, CT scans are 99% accurate and my husband's enlarged lymph nodes shown on CT scan before chemoradiation and surgery were in fact cancerous and the reason all his lymph nodes tested negative for cancer is because his preop chemoradiation killed the cancer cells in them.
We are now in a total loss as we get different information about his staging. I really don't know what outcome to expect or hope for, as i know lymph node involvement can make a huge difference in future recurrences and overall prognosis.
Thank you
Lee wrote:Nohogirl wrote: . . . Our new oncologist, on the other hand, believes that, CT scans are 99% accurate and my husband's enlarged lymph nodes shown on CT scan before chemoradiation and surgery were in fact cancerous and the reason all his lymph nodes tested negative for cancer is because his preop chemoradiation killed the cancer cells in them.
We are now in a total loss as we get different information about his staging. I really don't know what outcome to expect or hope for, as i know lymph node involvement can make a huge difference in future recurrences and overall prognosis.
Thank you
This is just my very humble opinion, I have no medical training just a cancer survivor. I would take the stage III diagnoses and run with it. They (medical people) tend to treat you more aggressively with a stage III vs a stage II. I was diagnosed at the age of 46 and was treated aggressively, due to my younger age. 14 yrs later I'm still here.
When I was being staged, not sure if the CAT scan pick up my enlarged nodes, as I had several tested done within a few short days. But surgeon preformed a separate test and gave me my results within a few short hours. Staging, plan of action, etc.
Pre surgery, testing would show 4 nodes were positive for cancer, post surgery pathology report would confirm 6 nodes positive were positive for cancer..
Just my experience, good luck!
Lee
CRguy wrote:Sent you a PM ... BUTT thought I could add a bit more info on-forum.
My surgeon "thought" I would likely be Stage II
My Radiation Onc said I was definitely Stage III
de facto when all was said and done with my Medical Onc I am actually Stage IVa
now here is the IMO part :
don't take surgical advice from a radiologist
don't take radiology advice from a medical oncologist
don't take medical oncology advice from a surgeon ! etc. etc. etc.
these folks deal with different datasets and results along the way
SO ... things WILL change and they each have their own areas of expertise.
Also, different imaging modalities done at different times during the diagnostic / therapeutic timeline can ( and WILL in my opinion ! ) reveal sometimes questionable/conflicting results.
Sorry if this is the "tough love" part ... BUTT get used to it ... it is going to happen and you will also need to find support for YOU as a caregiver. BTDT.
The positives for you :
- the neoadjuvant chemoradiation did its job
- all nodes negative
- a number of docs are using different imaging techniques to explore hubby's situation = more eyes on his case
- if there is concern for Stage III they will be more aggressive in treatments
I had enlarged local nodes verified by MRI and were not biposied because I was going ahead with the whole neoadjuvant chemoradiation plan anyway. I had pCR = pathological complete response = cancer NUKED
I had good docs AND I pushed for aggressive follow up. I had a single resectable lung met (VATS) and more chemo.
Some of this was "expected" some NOT .... BUTT here I am
hope that helps a bit more
Cheers and Harmony on the Journey
CRguy
CRguy wrote: . . . .don't take medical oncology advice from a surgeon ! etc. etc. etc.
CRguy
hawkowl wrote:I had biopsy proven lymph node Mets before surgery, but after neoadjuvant folfox and chemoradiation plus targeted radiation to iliac nodes all were negative. Safest approach is to treat as if it were stage 3 based on pre op ct scan. But if the nodes responded well to pre op chemoradiation that is an excellent prognostic sign either way
betsydoglover wrote:It is frustrating not to know the stage. Sorry for that stress. But, I (although not being a medical person) strongly suggest that you have it treated as Stage 3. Sadly I have seen Stage 2 folks who did not do chemo and ended as Stage 3 and then even Stage 4. Since your data is sort of murky, it seems best to treat it as aggressively as possible. Aggressive treatment will maximize your chances of a cure (I think) and also keep you from having regrets should you (I hope not) have a recurrence.
Take care,
CRguy wrote:mini warning : random rant alert
Just to add on a bit more from IME .....
I was offered FOLFOX after primary resection (2007) but went with Xeloda as I had good response and few side effects from neoadjuvant chemorad. The FOLFOX "benefit" was discussed at 3-5% improvement of OS BUTT with a larger book of side efx.
Would that 3-5% have prevented me from recurring ???? I don't know BUTT was not prepared to lose sleep over it,
not what IF ... WHAT IS !
I did Xeloda x2 and still got a met I needed to take care of ... SO with the met I did FOLFOX, the fully dirty dozen with 1 dose reduction along the way. It was all I could do and the best I could do at the time (2010) .
NOW there are discussions of doing 6-8-10 cycles as being not inferior for some situations.
SO :
protocols can be changed and tweaked, doses can be decreased, intervals can be lengthened, things can be added or subtracted.
I mentioned before it was good to have > 1 doc reviewing your hubby's case and "looking" over him.
" You will miss more for NOT looking ... than not knowing ."
MY take : when the met recurred I was determined to throw everything at it, which is why I did the FOLFOX... and my Onc told me because of otherwise good health, single clean met ... he was proceeding with curative intent, even though my so called "pseudo adjuvant" chemo protocol was controversial at that time.
I had told him :
" I would rather die from too much CT scan radiation and chemo than from a cancer we did not detect or failed to hit hard enough "
He did not argue.
My life = MY CHOICE !
I realize my "opinion and personality" do not fit with everyone.
I view this cancer shit as a battle, and yes also a Journey .. BUTT nobody ever said a Journey had to be an all inclusive paid vacation !!!! Our beloved BevG used to argue (with me) it was more like a "kidnapping" than a Journey.
When I used to teach martial arts / street defense type stuff .... we had a mantra :
hit first, hit hard, hit fast, hit often, keep hitting
.... better to be judged by 12 than carried by 6
I can't think of a more malevolent opponent than a cancer growing inside me
so I took the intensity of my training from the street ... INSIDE
I was determined to nuke that sunnuvabitch back to the last millenium
sorry if this may not be warm 'n fuzzy enough for some folks
BUTT ... it is only way I knew how to still be here the best I could
Is it working ?
... " I'll tell you tomorrow. But it's looking good so far."
sorry had to throw at least one Top Gun quote in here
MegaCheers all
CRguy
Lee wrote:CRguy wrote: . . . .don't take medical oncology advice from a surgeon ! etc. etc. etc.
CRguy
That is the best advice,
Know in your heart, your husband can beat this. Whether it is stage 2 or stage 3, it is treatable. The chemo he is about to get is to clean up/mop up any floater cancer cells that might be in his body.
I too got the FOLFOX with the infusion at the Dr.'s office followed up with the pump for 48hrs. Both treatments are standard protocol, some people prefer the pills while other prefer the pump.
Good luck
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