New cancer diagnosis. Ugh!!

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child#6
Posts: 29
Joined: Wed May 16, 2018 7:51 pm
Facebook Username: John Smith

New cancer diagnosis. Ugh!!

Postby child#6 » Tue May 22, 2018 5:43 pm

Hik
All this started with a GO bleed which lasted for three days. Large amounts of blood. Husband had colonoscopy and endoscopy a week ago. Stomach okay the GO thinks!
We went to the surgeon today and not a board certified colorectal one much to my dismay. Husband has what looks like a stage 1 adenocarcinoma which is flat and two inches long. Surgery scheduled in two weeks time. Projected 5 day hospital stay and husband will lose 12 inches of large intestine if all goes as planned. Cancer is in the cecum. Of course we will not know what stage it really is until he has the surgery and they check the nodes.

My biggest concern right now is people would think we were at two different appointments! Husband is really not on the same page. I told him it's not a polyp that needs to come out..it's already cancer and Thats why we have such a quick surgery date. All appointments leading up to the surgery have been made with the exception of a CT scan which needs to be approved by insurance. That should happen by Thursday afternoon.

What are the chances no nodes are involved? Am I correct in assuming that changes the staging. The surgeon told my husband no chemo or radiation but I don't think that is totally the truth because he won't really know if it has spread until he sees the biopsy report. My husband thinks he is talking to God and doesn't question anything in fact he is minimizing. Would I be right in saying may be chemo,radiation depending on the report?

What questions should I be asking??

Thanks for your help.

Lee
Posts: 5690
Joined: Sun Apr 16, 2006 4:09 pm

Re: New cancer diagnosis. Ugh!!

Postby Lee » Tue May 22, 2018 6:43 pm

child#6 wrote:Hik

What questions should I be asking??

Thanks for your help.


Ask this surgeon how many of these surgeries s/he does on a yearly bases.

Yes board certified colon rectal surgeon is the based. Since it does not sound like rectal (vs colon), sometimes a general surgeon can do the job especially if they have the experience.

Until there is a CAT scan, gonna be hard to tell if lymph nodes are involved.

What other appt do you have lined up?

Good luck, sorry for the reason you are here, butt you will find a lot of information and support here.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

child#6
Posts: 29
Joined: Wed May 16, 2018 7:51 pm
Facebook Username: John Smith

Re: New cancer diagnosis. Ugh!!

Postby child#6 » Tue May 22, 2018 6:50 pm

Got all his pre up stuff scheduled. Glad to know a CT scan can tell us that. Thought we might have to wait til the surgery.

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: New cancer diagnosis. Ugh!!

Postby weisssoccermom » Tue May 22, 2018 9:12 pm

My one piece of advice.....DO NOT LET the surgeon tell you whether or not there should/should not be any follow up chemo and/or radiation. I don't care whether the surgeon is a board certified colorectal surgeon or not (my preference would be certified). NO surgeon should be giving advice like that. Regardless of whether or not the pathology comes back as a stage I....PLEASE have your husband get in to see a reputable oncologist. The surgeon does the surgery....the oncologist is the doctor that Rx's the chemo. The rad onc is the doctor who, along with a consultation with the surgeon and/or oncologist is the one that deals with the radiation. I will add that generally, radiation is NOT given for colon cancer but it doesn't mean that it is impossible.

IF the surgeon is acting like this....telling you what needs to be done before there is any CT, MRI or PET done...I would seriously consider getting a different surgeon. It would honestly bug me that this doctor (surgeon) is seriously overstepping his boundaries and is trying to tell you what needs to be done with respect to your husband's treatment when he has NO idea what the pathology report and/or imaging reports will say.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: New cancer diagnosis. Ugh!!

Postby weisssoccermom » Tue May 22, 2018 9:18 pm

Should have added that YES, the presence of affected nodes does change the staging. Staging is made up of three components.

T, N & M

The "T" 'stage' (do not confuse this with overall staging) indicates how deeply the tumor has invaded the colon/rectal wall. It is IMPOSSIBLE for a doctor to tell this just based on a colonoscopy. Anyone who says that they can is WRONG!!!

The 'N' designation indicates how many LOCAL nodes contain cancerous cells.

The "M" designation indicates how many, if any, DISTANT metasteses the patient has.

There is NO way for ANY doctor to ascertain the "N" and "M" designation without some form of imaging...such as a CT, MRI or PET/CT scan. Furthermore, what may seem like a small tumor (based on the colonoscopy) may, in fact, be deeply invading the colon/rectal wall. IMO, it is irresponsible for the doctor to predict what stage your husband is at based on a look from the colonoscopy.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Beckster
Posts: 279
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New cancer diagnosis. Ugh!!

Postby Beckster » Wed May 23, 2018 5:12 am

Welcome

I too had a mass in the cecum. Before surgery, I had blood work, which included CEA, and CT scan. Preoperative, my colon rectal surgeon thought it was Stage I. However, he said said that pathology would ultimately determine the stage. CT showed a 2.8 cm mass, but pathology came back with a 3.5 cm. I went from Stage 1 to Stage IIA. You will not know until surgery is finished and you receive pathology report. After meeting with the oncologist, he said that because the intestines move around, radiation was not needed.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8
Clear Colonoscopy 10/17 :D

boxhill
Posts: 118
Joined: Fri Apr 06, 2018 11:40 am

Re: New cancer diagnosis. Ugh!!

Postby boxhill » Wed May 23, 2018 6:52 am

Also, not everything show up up on a CAT scan. My surgeon found the tiny subcapsular node on my liver by physically examining the liver visually and by feel. It did not show on the CAT scan with contrast, which shows a perfectly clear liver: he felt it. As it happens, he is also a liver transplant surgeon, but my onc told me that "any competent colorectal surgeon" should have performed the same examination. He said that the ones he worries about missing things are the surgeries performed by someone who only sees "a few" colon cancers a year. I don't know what he meant by "a few."

I'd be concerned that this surgeon is going in with a set of expectations that may make it less likely that he will be sufficiently thorough. You might ask him what kind of examination of the omentum/mesentery/liver he routinely performs, what he takes for examination by the pathologist, etc.

My sister had what I presume was Stage 1 colon cancer on the left side with a colostomy that was later reversed, and never saw an oncologist. She did have multiple scans/xrays and follow-up colonoscopies. This fall it will have been five years and so far so good. She knows nothing about the pathology of her tumor. She's one of those people who doesn't want to know and doesn't want to talk about it. Like your husband, perhaps. Not the route I would choose.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

NHMike
Posts: 1727
Joined: Fri Jul 21, 2017 3:43 am

Re: New cancer diagnosis. Ugh!!

Postby NHMike » Wed May 23, 2018 7:44 am

A lot of good stuff already posted.

I just wanted to add that you might want to add an Oncologist to your team, or at least a consult. I've found that my surgeon often has disagreements on treatment plans compared to my Oncologist. And, in matters of Chemo, the oncologist has the final say.

Also really wanted to recommend a board certified surgeon; preferably at a high-volume hospital. It may be difficult to do that now that everything is scheduled.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

child#6
Posts: 29
Joined: Wed May 16, 2018 7:51 pm
Facebook Username: John Smith

Re: New cancer diagnosis. Ugh!!

Postby child#6 » Wed May 23, 2018 7:12 pm

Well the board certified CR surgeon idea ship has sailed because his pcp called him last week and talked him out of it. I did not think that was ethical then but now Bruce haas cancer, so I am fuming mad because I told my husband I would make the arrangements and he just had to be nothing but the patient. I am a social worker by trade so navigating the health insurance would not have been a problem for me. His surgeon says he has done a lot of them, but I am not impressed. I don't like this group of doctors on the whole. My husband is impressed so I guess that's all that matters. Expecting Ct Scan tomorrow. I will call them if I have not heard by noon. Appointments are many times same day

I am going hour to hour promising myself not to worry because if I do it will be for two weeks and maybe...just maybe the surgery will be the end of it and I can handle his recovery easily if that is the end. Right now only God knows the answer to that question.

There are a whole bunch of other worries financially and health insurance wise to, but trying not to go there I my head yet.

His family a mother a d brother are not encouraging people either. She is 83 and lives 90 minutes from us with a 20 year old car. As luck would have it she is out of the country for the next 10 days. Amen for small miracles!

NHMike
Posts: 1727
Joined: Fri Jul 21, 2017 3:43 am

Re: New cancer diagnosis. Ugh!!

Postby NHMike » Wed May 23, 2018 8:02 pm

child#6 wrote:Well the board certified CR surgeon idea ship has sailed because his pcp called him last week and talked him out of it. I did not think that was ethical then but now Bruce haas cancer, so I am fuming mad because I told my husband I would make the arrangements and he just had to be nothing but the patient. I am a social worker by trade so navigating the health insurance would not have been a problem for me. His surgeon says he has done a lot of them, but I am not impressed. I don't like this group of doctors on the whole. My husband is impressed so I guess that's all that matters. Expecting Ct Scan tomorrow. I will call them if I have not heard by noon. Appointments are many times same day

I am going hour to hour promising myself not to worry because if I do it will be for two weeks and maybe...just maybe the surgery will be the end of it and I can handle his recovery easily if that is the end. Right now only God knows the answer to that question.

There are a whole bunch of other worries financially and health insurance wise to, but trying not to go there I my head yet.

His family a mother a d brother are not encouraging people either. She is 83 and lives 90 minutes from us with a 20 year old car. As luck would have it she is out of the country for the next 10 days. Amen for small miracles!


Doctors are part-time sales these days. My Oncologist put the full-court press to use a local surgeon (we have no CRC specialists in my state). When I said I wanted to talk to Dana Farber/Brigham and Women's, he suggested a doctor at the Lahey Clinic (Burlington, MA). Lahey Clinic is a very fine hospital but Mass General and Dana Farber are among the best cancer hospitals and they have specialists for every kind of cancer. Part of the reason I went there is one of my coworkers had lung cancer (which has a poor survival rate). It's a major headache for us in NH to go down to Boston but if he went down for treatment, then I could too. He would have had a few months to live without a genomic tumor test which isn't normally done. As it is, he's still alive two years later and doing fairly well.

Once you're in the process for surgery, I think that it's very hard to stop the process. You've gone for the pre-op and you have the schedule and you're ready to go and you've mentally prepared yourself for it. It's like a freight train rumbling on. At this point, it looks like the course is set and we can all only hope and pray for the best outcome.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: New cancer diagnosis. Ugh!!

Postby weisssoccermom » Wed May 23, 2018 9:53 pm

Look, if you are really uncomfortable with this surgeon, then by all means...STOP the surgery consult, don't schedule surgery and seek a second opinion. Unless your husband has a blockage or something equally emergent, waiting another week or two or even three is not going to impact the cancer. Now, that being said, it does make it difficult for the patient and his/her family to postpone. In the long run, your husband's quality of life after the surgery (and trust me, that CAN and WILL impact him) can make the world of difference for most people. Please don't think that cutting out a 12 inch section of someone's intestine has no impact on a person. It is NOT the same as taking out someone's appendix, for example. Now, I'm NOT saying that the surgery your husband will have is going to affect his quality of life just that is CAN and MAY change things for the patient...bowel habits, ability to eat/digest certain foods, etc.

Remember ALL surgeons are board certified in GENERAL SURGERY...but some have more training in their specialty. Ask your husband this question.....would he like a general surgeon to operate on YOU if you had breast cancer OR would he want a surgeon who not only specialized in breast cancer surgery but who had completed a fellowship in breast cancer surgery. Then ask yourself this question....who would YOU want to go to?

Any surgery that involves removing a large portion of your intestine comes with risks and those risks aren't always just mortality and/or infection risks. While a patient can live without a portion of his/her intestine/rectum, his/her quality of life often is changed, altered and in some cases, drastically changed. Your husband should be aware of this and should go into the surgery knowing all the possible outcomes (change in bowel habits, passing of gas, more diarrhea, weight loss, etc.). Certainly you're willing to accept that things will change BUT (IMO), if you can utilize the BEST surgeon who has a good record of success and extra knowledge of this surgery....why wouldn't you.

I still have a problem with the surgeon telling your husband/you that it appears to be stage I (there is NO....let me repeat...NO way of knowing that without both the pathology and some imaging study) and that your husband likely will NOT need any chemo or radiation. That's irresponsible to me that a surgeon would even consider saying that to a patient. Even IF the imaging studies and pathology report indicate that the cancer IS a stage I....that doesn't necessarily mean that chemo, for example, is not necessary. IF your husband's pathology report showed one or more negative prognostic factors (and depending on what those might be), an oncologist might seriously recommend chemo.

If this were MY husband and knowing what I know from my own and other's experiences, I would GET A SECOND OPINION and I would get an appointment with an oncologist NOW....before the surgery. That way, you can be certain that with the oncologist on your team, the pathology would be (or at least should be ) sent to the oncologist.
Don't mess around with this. Your husband has one chance to make this work and work to be the best for him. Call another surgeon and get a second opinion!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

DarknessEmbraced
Posts: 3128
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New cancer diagnosis. Ugh!!

Postby DarknessEmbraced » Thu May 24, 2018 6:57 am

Welcome to the board and sorry for your husband's diagnosis!*hugs* I hope his ct scan goes well and that you won't have to wait long for results!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

Deb m
Posts: 432
Joined: Tue Jan 14, 2014 10:08 am

Re: New cancer diagnosis. Ugh!!

Postby Deb m » Thu May 24, 2018 8:19 am

Can;t really tell the stage till after surgery. My husbands tumor was also in his cecum. Make sure you get a board certified surgeon.

child#6
Posts: 29
Joined: Wed May 16, 2018 7:51 pm
Facebook Username: John Smith

Re: New cancer diagnosis. Ugh!!

Postby child#6 » Fri May 25, 2018 5:37 pm

Well we just got back from preoperative appointments and the first few lab. The nurses and PA's were very big on my husband surgeon and his skills. Although he is not a BC colorectal surgeon, he only does gastrointestinal surgeries and he has done dozens and dozens of these surgeries. Their positive commentary was unsolicited so I am feeling much better about this. I also researched oncologists last night and found one that is board certified in oncology and internal medicine and a good match for us so another hurdle that I feel good about.

I think I will be able to sleep tonight as my anxiety is not on high C. We have a very good cancer and wellness center here. I had a very good talk with some who is very important to me whose Dad had lung cancer and could not access what his son thought was the best surgeon (very much how I felt) and we talked about how to navigate that successfully and stay sane at the same time. That was such a big help to my psyche.

I have to keep myself together to be the best help to my husband, so that is where my focus will be for at least the next two weeks. Hopefully this stays a stage 1 cancer after all the testing and pathology comes back. My goal will be not to worry about what I can't control over the next few weeks. And as I read in a recent book: when option A is not available I will make the absolute best out of option B.

child#6
Posts: 29
Joined: Wed May 16, 2018 7:51 pm
Facebook Username: John Smith

Re: New cancer diagnosis. Ugh!!

Postby child#6 » Sun May 27, 2018 6:52 pm

Received letter yesterday. The second opinion from the colorectal surgeon was denied by our insurance. It looks like we will stick with the GI surgeon who has done many of these surgeries but is not a BC colorectal surgeon. Awaiting CEA lab.


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