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Postby Guest » Fri Sep 11, 2020 8:14 am

Hello all,

This is all very new to me so I apologize in advance.

My girlfriend, 28, was recently diagnosed with stage 3 colon cancer. She started having symptoms in January and the cancer was found in June. She underwent surgery in July and the tumor was removed. 4 out of 28 lymph nodes positive. The surgeon said there was a perforation at some point (no perforation at time of surgery) which caused an abscess to grow on the outside of her colon. The surgeon was optimistic and said she had a 70% chance of survival (5 year survival rate).

Fast forward to August. We meet with the oncologist and discuss treatment plans, prognosis, etc. She opted for CAPOX and started her treatment on Tuesday. The oncologist said she has a 70% chance of survival and there is a 25%-30% chance of reoccurrence with chemo. The oncologist was also optimistic and told us she has a very good chance of beating this.

Since her diagnosis, I have been doing some research. I know not to trust the internet but there are a few things I'm concerned about. Based on what I've read, there is a staging process for colon cancer, TNM. The oncologist never discussed this with us. She never discussed the tumor size, how far it spread, the grade, etc. She never told my girlfriend whether she was 3a, 3b, or 3c. Is this normal? I believe my girlfriend would be stage 3c because of the perforation and lymph node numbers. Based on what I read, the survival rate is lower and chance of reoccurrence is higher for stage 3c compared to what we were told. I know these are just numbers and every case is different but I'm worried the doctor isn't telling us certain things and isn't being transparent. Does anyone know exactly how the oncologist determines the prognosis? Is it based on the individual or is it just a blanket number, i.e. all stage 3 have about 70% chance of survival? Is she giving us those number so that we remain optimistic? I understand if that's the case but I also think it's important for the oncologist to give us the whole picture so we know what to expect.

Also, any advice on what I can do to support her? I want to be there the best I can so any advice is appreciated.

Posts: 59
Joined: Thu Jul 10, 2008 9:41 pm

Re: New here

Postby polluxx » Fri Sep 11, 2020 11:06 am

I know exactly how you feel. My oncologist gave me the same 70% talk. In her defense, she didn’t have my pathology report back when she said it.

I insist that they give me a hard copy of my report and all of my scans so I can read and research for myself. When I finally got my path report, I asked my surgeon what it meant for me. He said there are certain little boxes that indicate chemo being needed after surgery and I checked off every box. So I did 12 rounds of FolFox.

When I met with my oncologist, after treatment, she said, “Let me call to get your port taken out. I don’t think you will ever need it again.” That made me feel like she is lumping me in with all stage 3s instead of looking at my more specific stage of 3c.

For treatment, I don’t think it mattered that much, but for monitoring afterwards, I’m insisting on keeping my port for at least 2 years. I want scans every 3 months instead of waiting 6 months. I haven’t decided if I’m ok with just having CT scans or if I want to see if my insurance will cover alternating PET scans. I’m going to request the ctdna test done since CEA is not a good indicator for me.

I’m insisting on being treated the way I think my unique pathology warrants rather than just going along with what my doctor sees as standard care for stage 3.

On the other hand, even if I understand the risks for a reoccurrence in black and white, she does have the experience of seeing many patients with the same kind of cancer, and I believe that gives her a kind of gut feeling or instinct about prognosis that I can’t get off google.

So if she looks at all of the factors in my path report that indicate “worse prognosis” and still believes I’ll never need my port again, I feel like she is taking into consideration other factors too such as the fact that my tumor wasn’t genetic in origin. I’m in my early 50, rather than my 80s. I had very good bloodwork throughout treatment until the very last one. I was able to get through all 12 treatments, only needing to reduce Oxaliplatin by 15% once.

I feel like she can look at the positive and negative factors, and have a good idea of my odds. I do trust her, so I listen with an open mind, and she often changes my mind about what I want. But in the end, it is my body and my future so I’m ultimately going to make the decisions. And she is okay with that.
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox
9/2020 Finished FolFox
12/2020 PET Scan-NED
1-2021 CTdna test

Posts: 91
Joined: Sun Jan 12, 2020 8:46 pm

Re: New here

Postby roadrunner » Fri Sep 11, 2020 11:52 am

This is a very high-level response, but in my view those broad survival percentages are not generally helpful. There are many reasons: (1) They are based on old stats, and care is improving all the time; (2) as I think you’ve realized, the variables are numerous — examples are CEA and other markers, genetic profile, response to chemo, how much/what scans and monitoring are done, general health, nutrition, exercise, lifestyle, skill and attentiveness of the surgeon/oncologists, even potentially stress and psychological state — the list goes on.

My way of looking at it is: If you want to dive *deeply* into your own unique situation, read and process hundreds of research papers on all the variables in your unique situation, you can, and you may in the end be able to calculate a reasonable survival number (but still based on the past not the future, which matters). Or you can take solace in the fact that your current situation is quite good, better than many, and you have a very good chance of walking away, if you determine and do the right things and devote yourself to a cure. Either way is valid, depending on personality, resources, and time.

Concern about what an oncologist says about a specific survival percentage without hyper focus on unique circumstances, (and while we might want to think they do the deep dive for every patient, that simply is not realistic), while understandable, is not IMO productive. Choose your preferred approach (super detailed analysis v. informed but high level “gestalt”), and go with that. Or so say I. Good luck!
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Posts: 91
Joined: Sun Jan 12, 2020 8:46 pm

Re: New here

Postby roadrunner » Fri Sep 11, 2020 12:12 pm

Sorry, one more thing: You said this was about your girlfriend. In my view it is very important to approach questions like this with deference to *her* approach, preference, and interest. You certainly have a crucial role and vested interest, but let her be your guide in determining what to question, when, and how about survival predictions. Even if you do lots of prognosticating “on the side,” be sensitive about how much she wants to hear in that regard. Just my 2 cents.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Posts: 663
Joined: Fri Apr 06, 2018 11:40 am

Re: New here

Postby boxhill » Fri Sep 11, 2020 1:43 pm

If your girlfriend wants to be an active participant in her own treatment, then she needs to get access to all of her reports: scans, biopsy results, pathology including basic genetic testing, etc. I assume she has been at least somewhat reassured by the survival stats she was given, although I'm sort of surprised that that was what her doctors led with...or did she ask?

Since she's the patient, not you, you have to follow her lead. She might want to do her own research, or she might be happy to have you help. I think it may be touchier when people aren't married. Sometimes the expected permanence and commitment or lack thereof of the relationship will have a bearing on how involved the patient wants the other person to be. In any case, I'm sure she appreciates your support right now.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

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