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Appointment with surgeon on Tuesday...what to ask?

Daniellabella
Posts: 19
Joined: May 2018

Hi everyone,

 

My husband has been diagnosed with rectosigmoid cancer.

 

He has a 6cm mass about 10-11 cm from the anal verge.

 

By the time we meet with the surgeon, my husband’s MRI for staging will have been completed, as well as the biopsies from the scope.

 

Those of you with experience, can you please tell me what questions I should be asking the surgeon?

 

I am so overwhelmed and don’t know what I should be inquiring about!

steveja
Posts: 41
Joined: Apr 2017

My cancerous polyp was smaller (3cm) and farther into the sigmoid colon.  FWIW they took out my sigmoid colon and the upper edge of the rectum. 

I believe that your husband's case would be considered 'rectal cancer' and there is enough of a difference that you should ask.

2018 NCCN Guideline for rectal cancer calls for a CBC (basic blood panel) and CEA level (a cancer marker), chest & abdominal CT(to check for metastasis),  pelvic MRI.   **RECORD THE TEST RESULTS, TAKE NOTES.

https://www.nccn.org/patients/guidelines/rectal/index.html

https://www.nccn.org/professionals/physician_gls/pdf/rectal.pdf

--  If ALL these tests weren't performed - why not?  ** ultra-important.

Personally, I would ALSO demand a CA19-9 (another weaker cancer marker) and a pre-operative CBD+DIFF (slightly less primitive blood panel/count), to calculate neutrophil: lymphocyte & lymphocyte: monocyte ratios.[each (CA19-9, DIFF) is a $50 test].  Get a full copy for your records.  Two years from now you may wonder what the pre-op numbers were and you'll have no time machine.  Independent labs like 'Ulta Wellness' will do privately these if your physician is obstinant.

My list of questions would include -  (WRITE DOWN THE ANSWERS!)

1) Is it definitely cancer?  (rectal vs colon ?)

  --  moderate vs high-grade dysplasia?

  --  Invasive?

  -- Is the polyp sessile or pedunculate?

  The biopsy & histology report will tell.   Don't assume - ask directly.

2) Are there any signs of metastasis?  (from the CTs)

3) What are the basic test results?  CEA & CBC ?

CEA>3 is abnormal, but you need to see if it drops to normal after surgery.

CBC+DIFF neutrophil:lymphocyte ratio >5   suggests poor outcomes, but ...

--

Staging (cancer stage I, II, III, IV) are either clinical or pathological. Clinical is pretty much a guess based on non-invasive methods and 'pathological' is base on pathology, surgery & histology. To get to the TxNxMx staging criteria with any accuracy they will do surgery to remove the tumor ('en bloc' - as a unit ) usually along with a dozen+ lymph nodes.  Then a histological analysis will determine the degree of invasion and spread.

You'd prefer that the T stage (invasion of the tumor to deeper tissue) was at a lower stage (0,1 or 2) , and that the lymph node involvement was zero.  At that point (stageI) you'd likely avoid chemo.  At 6cm rectal, I *suspect* you are more likely to see a stage II or stageIII cancer, and we all pray it's not stage IV(metastatic).

Frankly, the 5yr survival odds for rectal cancer are pretty great - but the QoL is a matter of personal assessment.

4) What is the treatment advised?

  --  In a large rectal polyp (like I assume this is) they often use radiation to reduce the polyp before surgery.  That is rare in colon cancer where they just chop out a bit more colon.

  ?? what are the side-effects LT & Short term for radiation (if considered)?

-- Trans-anal (up the bum) surgery is called for in smaller, less involved polyps.  That would be great and the least concerning, but you might want to anticipate trans-abdominal surgery.   The surgery & recovey per-se is pretty minor, but you need to anticipate the possibility of colostomy (maybe permanent maybe temporary) & various 'pouch' surgical solutions.  These may be very functional, but pretty brutal to the person's ego.  No one wants to be the Mengelian freak that poops into a bag on his/her abdomen.  ASK what they plan/expect.

-- What surgery is advised and what are the life-style & Quality-of-life consequences?  Talk it out - right then!  NOT TOMORROW!  There is no TOMORROW!

5) What is the actual surgeon's recent (past year) experience in this procedure?   How many similar procedures has he done in the past year?   I'm sure 96% of facilities provide perfectly good up-to-standards service, but it really doesn't cost more to choose MD Anderson, Memo-Sloan-Kettering, Cleveland Clinic, Mayo Clinic and this is no time to bargain hunt.

6) If chemo is in the cards, then ask hard piercing questions about chemo-brain, neuropathy, side-effects, physical and mental problems - return to work.

Oddly you, as spouse, have just barely enough emotional distance to press these issues when the patient is emotionally stunned.  You need to stand up for him.

===

That aside, let me provide some free (and worth only that price) personal advice.   Unless it's Saint-Hubby, then Hubby is going to be rather unhappy that life has dealt him this card.

1/ YOU (as the wife, friend, relative) didn't cause this, so PLEASE don't apologize, don't be "sorry".  That's a useless offering.  'Sorry' feels insulting.

2/ It's not a joke - being called "semicolon" or "man with no ***" even in jest by close friends isn't at all funny - it's dehumanizing.  Maybe you, as spouse, can find the right point to interject humor, but ... I have doubts. 

3/ Hey your second-cousin had unrelated cancer and was miraculously cured by drinking pomegranate juice and listening to original Elvis vinyl records at 77rpm backward? Well F' him .. call me when it's published in a peer-reviewed journal.

4/ The cancer pt is likely to act out emotionally at his/her own lowered physical condition & mortality.  You, as wife, and therefore the nearest target of opportunity, are likely to take that blast-back.   Either plan to be generously forgiving (with some distance) or get out now!  Reacting in-kind is throwing acid in the face of someone writhing in torment.

5/ The greatest commonality amongst cancer survivors is fear/worry/anxiety of recurrence.  That may fade after year 5 (I'll letcha know) but in the meantime, the perception of life as remarkably tentative is painfully ever-present.  Planning a vacation in Fall is a major event, and planning for retirement or even a 5yr out event seems worthless nonsense.  Allow/help him to focus on only short-term; you focus on long-term.

You'll need to change some of the rules in your relationship, meaning YOU will take on more pain and more effort.  You WILL live outside your 'comfort zone' for months or years.  Are you up for that?

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