New Here and Going Under the Knife 9/4

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MistyBlu
Posts: 27
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

New Here and Going Under the Knife 9/4

Postby MistyBlu » Wed Aug 21, 2019 8:42 am

Hi all, this is very sudden for me. I know very little since this is all happening so fast. In July, I was scheduled to get my hernia surgery and a week prior I went in for preadmit testing and my blood work can back 6.4 hemoglobin. Well, they put that surgery on hold and sent me to the hematologist. He gave me an iron infusion and a B12 shot and sent me to the GI. Since I already had an Upper endoscopy for my hernia I was scheduled for a colonoscopy. They found a mass in the right colon and remove one polyp. They later told me the mass did have cancer in it. On to the next doctor for the mass. My surgery will be a laparoscopic right hemicolectomy. They will decide after what the next steps are as far as treating the cancer. So I now have to sit and wait on that for what seems like forever!

I know many of you have been where I am now. As of July 15th all I had was acid reflux and planning a hernia surgery. Now I'm a cancer patient and I feel like a different person. I will be in surgery the morning school starts. So I've only known about the cancer for about three weeks and I've been trying to research and clean my house and buy school supplies and plan ahead at work etc. I was just so prepared for the hernia surgery which all the rules around that are completely different and now I know nothing about this surgery or just not enough. And I've stopped watching youtube and google (as dictated on this forum) because it had me planning my demise.

I don't even know what to ask here, the doctor or at the hospital. I would appreciate anybody pointing me to some credible sources or anybody in this same situation. anything.
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
As of 9/22/19 - Still deciding on an adjuvant treatment plan

MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: New Here and Going Under the Knife 9/4

Postby MeAndMine » Wed Aug 21, 2019 8:56 am

I'm sorry you are going through all of that. I'm pretty new to it all myself so I have no answers for you except to say I'm here if you want to talk. There are so many wonderful people on this board who will be able to answer more questions & help you figure things out.

You are doing well to get things clean & organized & ready for what is to come. I've been going to so many different places, driving here & there for appointments so everything is still up in the air. I know I need to start getting things at home organized & move some things around for convenience before long.

It's good that you have your surgery set up & you know the first steps to take! Hang in there & take it one day, one step at a time.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MistyBlu
Posts: 27
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: New Here and Going Under the Knife 9/4

Postby MistyBlu » Wed Aug 21, 2019 9:45 am

Thank you. I just read your post. I had a biopsy and I didn't get a letter. I don't have anything. I could call but that info will just make me search google. I've been collecting questions and I decided I will just look all that up while I'm in the hospital for X number of days. Also, in your post, someone said they lost 12 pounds since the diagnosis. That's about where I am. Everyone at work is telling me how great I look if only they knew. The weight is falling off. My googling got so bad I started researching the whole ERAS protocol at other hospitals. I found out that the recovery rate was better for patients who lost weight prior to surgery so that's one feather in my cap!

For those that had surgery, is there anyone that has had problems with BM all their life. Like not necessarily constipation but infrequent BM's. I heard the colon "goes to sleep" after surgery and one of the things they look for is a few BM's. Well, it's just not normal for me to have BM's every day. Anybody else in this situation had to take stool softener or laxative after surgery?
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
As of 9/22/19 - Still deciding on an adjuvant treatment plan

Beckster
Posts: 390
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New Here and Going Under the Knife 9/4

Postby Beckster » Wed Aug 21, 2019 11:52 am

MistyBlu wrote:Hi all, this is very sudden for me. I know very little since this is all happening so fast. In July, I was scheduled to get my hernia surgery and a week prior I went in for preadmit testing and my blood work can back 6.4 hemoglobin. Well, they put that surgery on hold and sent me to the hematologist. He gave me an iron infusion and a B12 shot and sent me to the GI. Since I already had an Upper endoscopy for my hernia I was scheduled for a colonoscopy. They found a mass in the right colon and remove one polyp. They later told me the mass did have cancer in it. On to the next doctor for the mass. My surgery will be a laparoscopic right hemicolectomy. They will decide after what the next steps are as far as treating the cancer. So I now have to sit and wait on that for what seems like forever!

I know many of you have been where I am now. As of July 15th all I had was acid reflux and planning a hernia surgery. Now I'm a cancer patient and I feel like a different person. I will be in surgery the morning school starts. So I've only known about the cancer for about three weeks and I've been trying to research and clean my house and buy school supplies and plan ahead at work etc. I was just so prepared for the hernia surgery which all the rules around that are completely different and now I know nothing about this surgery or just not enough. And I've stopped watching youtube and google (as dictated on this forum) because it had me planning my demise.

I don't even know what to ask here, the doctor or at the hospital. I would appreciate anybody pointing me to some credible sources or anybody in this same situation. anything.


I had a laparoscopic right hemicolectomy in November of 2016. It was found during a routine screening and definitely not expected :shock: I was in excellent health and was in the hospital for 48 hours. It did not affect my bowels and thankfully the same as before surgery. The most important thing is to find a certified colonrectal surgeon to perform the surgery. However, you will not be staged until after pathology report is in for treatment. In the meantime, you should have preoperative bloodwork, which includes a CEA test, and a CT scan with contrast for chest, abdomen and pelvis.
57/F
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 (path) 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
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18 6/19 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, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6
Clear Colonoscopy 10/17 :D

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Jacques
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Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New Here and Going Under the Knife 9/4

Postby Jacques » Wed Aug 21, 2019 2:46 pm

MistyBlu wrote:...I heard the colon "goes to sleep" after surgery and one of the things they look for is a few BM's. Well, it's just not normal for me to have BM's every day...

Yes, in my hospital they don't usually discharge a patient until the patient has had a bowel movement. Sometimes it takes a long time for a patient's bowel to wake up. In extreme cases this is called "paralytic ileus". If you don't have a bowel movement for a number of days they might think you have paralytic ileus. They can diagnosis this condition with a stethoscope. Normally, the bowel is always moving and making noise. If the doctor cannot hear any noise through the stethoscope then the bowel is still asleep.

For this type of surgery, two types of anaesthesia are usually used. One is Propofol, which makes the patient unconscious for the duration of the operation. The other agent is used to calm the bowel during surgery so that the bowel is not always moving around while the surgeon is performing the operation. Sometimes the anaesthesiologist gives more of this particular agent than is really needed, and this may cause a delay in the return of the bowel to normal function.

After the operation is over, you will regain consciousness very quickly, but it may take a few days for this other anaesthesia agent to be excreted from your body. It helps to do a little walking every day after surgery to help remove this substance from your body.

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juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: New Here and Going Under the Knife 9/4

Postby juliej » Wed Aug 21, 2019 5:17 pm

MistyBlu wrote:For those that had surgery, is there anyone that has had problems with BM all their life. Like not necessarily constipation but infrequent BM's. I heard the colon "goes to sleep" after surgery and one of the things they look for is a few BM's. Well, it's just not normal for me to have BM's every day. Anybody else in this situation had to take stool softener or laxative after surgery?

Don't worry. They will keep an eye on the situation after surgery. The first sign is usually passing a little gas and then the bowels start waking up. If they don't, they will give you meds to move things along. They just want to make sure you don't have an ileus, which are uncommon but do happen from time to time. That's why they won't release you from the hospital until you've had a BM. In any case I would inform the surgeon of your "normal" BM schedule so they know what to expect.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

boxhill
Posts: 354
Joined: Fri Apr 06, 2018 11:40 am

Re: New Here and Going Under the Knife 9/4

Postby boxhill » Wed Aug 21, 2019 8:05 pm

MistyBlu, welcome to the club, and sorry you're here! I'm sure you are in quite a state of shock and uncertainty. I think most of us would agree that you will feel better when you know more about your disease and when you and your doctors have developed a plan of treatment.

If I were you, I would start by trying not to think of it as "going under the knife." :shock: The second thing to keep firmly in mind is that everyone is different, and not everyone has every side effect of chemo or anything else, and while it is good to be prepared, "borrowing trouble" and freaking out about things you may never have to deal with is not a good idea.

As I'm sure you have noted, there are differing opinions here about researching matters related to one's disease. I'm in the "the informed patient is the empowered patient camp." Others clearly are not. You'll have to decide for yourself. There are PLENTY of reputable sources of information, many of which are cited in posts by O Stoma Mia, for example. I personally think that the hospital is NOT the best place to start researching and looking for answers. You will be very much at the mercy of who you happen to see and how much or what they feel comfortable telling you, and many of the questions you end up with they most likely will not be prepared to answer. Your primary task in the hospital is to heal.

Now, I would expect that you will soon be having a CT scan with contrast, most likely thoracic/abdominal/pelvic, if you have not already had one. When that has been analyzed, they will have a preliminary idea of what is going on: roughly how big the mass is, whether there appear to be any enlarged lymph nodes, whether there appear to be an suspicious masses elsewhere. They can stage it in a preliminary way, but you won't really know until the pathology is done after surgery. You should be able to get access to this and all of your reports, and discuss it with the relevant doctor.

In the mean time, I would urge you to get your biopsy results and see if they have tested your samples for MSS/MSI, KRAS, and BRAF at least. That would give you something concrete to start learning about. Why not call them and ask for the report?

They will decide after what the next steps are as far as treating the cancer. So I now have to sit and wait on that for what seems like forever!


"They" won't decide, YOU will decide based on their recommendations. Let's say for the sake of argument that your cancer is stage 2, with no lymph node involvement. Do you choose to have chemo, or not? Well, for one thing you have to talk to an oncologist. (Which is unlikely to happen in the hospital.) How do you know how to pick one? How do you know what to ask? How do they know how much to tell you? In reality, there is no hard and fast rule about which stage 2 patients should have chemo and which should not. There are factors involved revealed by the pathology which the doctor might or might not put in front of you, depending on how much you seem to know and how much you seem to want to be actively engaged in your treatment. There's a lot to know, I'm sure it seems overwhelming, but you do have time to learn about it. If you want to. You can always bring your questions here.
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
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

MistyBlu
Posts: 27
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: New Here and Going Under the Knife 9/4

Postby MistyBlu » Thu Aug 22, 2019 11:11 am

Thank you all. BoxHill thanks (I feel like I got a little hand slap). You were right about freaking out about stuff I won't have to deal with. I wasted days researching a stoma and ileostomy bag to find out that I won't need one.

When I went in for the anemia, the hematologist I have is also an oncologist so he turns out to be the default. I'm ok with the surgeon because I want this out but I called MSK today to get a second opinion about cancer. My purpose was to schedule that a few weeks after surgery and by then I'd have all the papers and notes etc. I have excellent insurance so I can go anywhere and the cost is the same -zero. So I figured why not go to MSK. Well they want me to come before the surgery. Again I'm ok with my surgeon. I want a top of the line oncologist if I can get one. Is this dumb? Also, I can't afford to start planning all over again for the surgery and have them push me out past September. My company is going through an acquisition and who knows where I'll land. I need to get this part done while I can. Access to insurance is an important consideration. I read on here that people were told to wait and come back when they have insurance. I can't risk that.

Can someone answer these maybe silly questions;

(1) I read (by JMN) that he/she was able to get pathology retested because labs make mistakes and it's subjective etc. How is this possible. If they take it out, it's gone how can you come back later and ask for a retest?
(2) Where do I get an abdominal binder. is that like a medical girdle? When I look on Amazon all I see are tummy flattners...
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
As of 9/22/19 - Still deciding on an adjuvant treatment plan

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Jacques
Posts: 518
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New Here and Going Under the Knife 9/4

Postby Jacques » Thu Aug 22, 2019 3:07 pm

MistyBlu wrote:
(1) I read (by JMN) that he/she was able to get pathology retested because labs make mistakes and it's subjective etc. How is this possible. If they take it out, it's gone how can you come back later and ask for a retest?

    Yes, they can do certain retests and can send samples of the tumor tissue to another lab for testing, provided enough tumor tissue remains in the specimen. Normally, resected specimens are kept in storage for a long, long time. They are preserved in formalin in paraffin bocks and can be retrieved on request. The slides that were prepared for the original pathology report are kept in storage and can be sent out to a different lab to get an independent assessment.

    https://www.cancerabcs.org/pathology-2nd-opinions
    http://pathology.jhu.edu/department/services/secondopinion.cfm
MistyBlu wrote:
(2) Where do I get an abdominal binder. is that like a medical girdle? When I look on Amazon all I see are tummy flattners...


MistyBlu
Posts: 27
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: New Here and Going Under the Knife 9/4

Postby MistyBlu » Thu Aug 22, 2019 7:13 pm

Thanks Jacques, I found the binders, I wasn't expecting them to look like that. Anyway thanks for the info on the slides as well. I'm going to figure out how I can get mine sent to MSK after my surgery.
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
As of 9/22/19 - Still deciding on an adjuvant treatment plan

boxhill
Posts: 354
Joined: Fri Apr 06, 2018 11:40 am

Re: New Here and Going Under the Knife 9/4

Postby boxhill » Thu Aug 22, 2019 8:50 pm

Wow, this is awkward timing for you. I understand the insurance issue completely. Nevertheless, I think I would take advantage of the opportunity to get a consult with MSK and get in there immediately. This is assuming that MSK is the closest major cancer center to you. There are certainly at least a handful of others that are comparable: Mayo, Dana-Farber, Anderson, Cleveland Clinic, et al.

You haven't mentioned what general area you area located in, or what type of hospital or practice your oncologist and surgeon work with. BTW, is the surgeon currently scheduled to do you hemicolectomy someone either board certified in that area or extremely experienced in colon surgery? My surgeon, for example, who happened to be the guy on call at the hospital for issues such as my blockage--the major regional hospital, a teaching hospital, and very good, not a backwater--has done many colectomies, and is in fact a liver specialist. He found and removed my tiny liver met, that didn't show on the CT. I don't think that the board-certified thing is as important as it is for rectal surgery, but you still want someone who has done a lot of them.

If you go to MSK before surgery, you will be keeping your options open. It may be that they concur with the local plan, and you decide to proceed with your current team. If so, I'm sure that your can have MSK review your post-surgical pathology and consult on further treatment, if any is indicated. Or they might have a very different view.

In any case, you are able to take advantage of the options. You can also tell them about your time constraints. Maybe they can get you in fast.
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
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

MistyBlu
Posts: 27
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: New Here and Going Under the Knife 9/4

Postby MistyBlu » Fri Aug 23, 2019 9:45 am

Thank BoxHill, my surgeon is board certified and pretty much all he does is colorectal surgery. From the research I've done I don't believe I have another choice meaning. Is another doctor going to say well you have two options...No I believe everyone will say as a first step I need this surgery? It has to be removed. And yes awkward is right, I really don't want to appear as if I'm sick and unreliable by suddenly constantly leaving work for appointments. That will surely work against me when they're trying to decide who to keep and who to get rid of. I actually have to start looking into what-ifs should I suddenly have no insurance. I can't afford cobra.

I live about an hour outside NYC so going to MSk is a huge inconvenience but still accessible. Going somewhere like that means I have to take off from work. I'd rather wait until I know what I'm dealing with in terms of the cancer. I feel like I have to get the most done while I'm insured and that is driving my behavior. And to boot, I have been job hunting, and I have people calling me from interviews left and right. I'm not sure I can even accept a new job yet but I need one. My situation is full of uncertainty.

Sorry, I could go on and on with how many things I'm having to put a sudden halt on because of my health. I'm sure I'm not the first and won't be the last.
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
As of 9/22/19 - Still deciding on an adjuvant treatment plan

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Jacques
Posts: 518
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New Here and Going Under the Knife 9/4

Postby Jacques » Fri Aug 23, 2019 9:57 am

boxhill wrote:.... There's a lot to know, I'm sure it seems overwhelming, but you do have time to learn about it. If you want to...

"They" won't decide, YOU will decide based on their recommendation

MistyBlu -

I agree with what boxhill said. I am in the camp, "Prepare for the worst, but hope for the best."

You will have some free time now before surgery -- a window of opportunity where you can do some focused research on the nature of your diagnosis and staging, and where you can do focused research on the kinds of treatments and interventions available for your particular diagnosis.

You can be involved and make a difference -- but only if you act now before the window of opportunity closes.

I would suggest that you re-read boxhill's earlier message, because it explains what is at stake in this time frame:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=63053&p=496178#p496178

If you decide not to do anything right now, then you will be faced with the default choice presented to you by the hospital, and this might not be the choice that is best for you.
.

annieliz
Posts: 34
Joined: Fri Jul 26, 2019 5:13 pm

Re: New Here and Going Under the Knife 9/4

Postby annieliz » Fri Aug 23, 2019 10:34 am

Just want to add that I agree with those who are encouraging you to get a consult at MSK. I am also an hour outside of NYC and I am very happy that I went there from the start.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

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Jacques
Posts: 518
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New Here and Going Under the Knife 9/4

Postby Jacques » Fri Aug 23, 2019 3:51 pm

MistyBlu -

One thing you could do is to check on the rating of your hospital vis-a-vis colorectal cancer surgery.

If at all possible, you would want to be treated in one of the top-rated hospitals, not in a "backwater" hospital.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59684&p=474134#p474134


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