Right hemicolectomy fears

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lisacc123
Posts: 30
Joined: Sat Oct 15, 2011 1:06 pm
Location: North Yorkshire UK

Re: Right hemicolectomy fears

Postby lisacc123 » Sun Oct 16, 2011 11:32 am

Hi Barbara,
Hey, you're in the UK too! Yes, I had a morphine pump for my hysterectomy 6 years ago ... ah, happy days we had! I'm on the 'enhanced recovery programme' this time though, so no morphine for me, just an epidural and a few paracetomal then I'm out on my ear! (or my a**e ... or a** if you're American ;) )
I haven't actually had the test for Lynch Syndrome but it's a no brainer really. My brother was diagnosed with colon cancer 14 years ago when he was 33 (he's been fine ever since). 2 of my cousins have also had it at a young age and one of them has also had endometrial cancer (both are fine). My mother died of endometrial cancer last year. She refused any kind of medical intervention and survived for 7 years with the cancer. My uncle has had colon, prostate and kidney cancer, but all over the age of 70. And my grandfather had colon cancer in his 50's (he lived for another 20 years and died of heart failure).
I myself had both endometrial and ovarian cancer at the same time. I was 33 when I first had symptoms and 34 at diagnosis. I had an aggressive form of the cancer but in both cases it was still a stage 1. I had chemo anyway as extra insurance!
Every last detail is fairly typical of Lynch, particularly the 'right sided' characteristic. The pesky polyp I have in my ceacum is sessile and tubulo villous, also typical characteristics of Lynch. I decided not to have genetic testing because ... well ... I couldn't really be bothered!!! I knew that whatever the results my medical care would be the same regardless and the rest of my family is aware enough of the situation to be able to take care of themselves and make their own decisions. I just try to put it out of my head mostly, except when I'm due for a colonoscopy :( urgh!
My consultant is comfortable with my decision not to have a subtotal colectomy and providing I keep up with the yearly scopes, I believe it is the right thing for me. If I hadn't already had a hysterectomy I would probably get one as a preventative measure. I don't miss those bits in any way at all. Infact, not having periods is wonderfully liberating! I do take HRT, oestrogen only, and I have no issues whatsoever. There are other cancers to watch out for. Kidney, bladder etc, but according to my consultant these are rarer even in Lynchers and if they do occur they tend to occur at an older age (70+) Certainly in my family this has so far proved to be true.
So, I figure, okay ... I've had the womb and the ovaries out and lived to tell the tale and feel absolutely fine. Hopefully if I can get through the right-hemi in a similar way then life is there for the taking. Having Lynch is a pain in the butt (literally!) and I sure get peeved about having bits of me removed from my otherwise perfectly healthy body, but as so many people find in these situations, it's incredible how resilient we can be. Yes, I'm very nervous about this surgery, but talking to you guys has really helped hugely, massively. Fingers crossed I'll be back up to fighting speed in double quick time! (And I'll be sure to take my ipod with me while I'm roaming the hospital corridors!)
Cheers all, Lisa
Lisa
Endometrial & Ovarian Cancer '05 aged 34
Hysterectomy '05
6 rounds of carboplatin
NED
Lynch Syndrome
Prophylactic right hemicolectomy Oct '11
Recovering quickly from surgery and enjoying life :)

KimT
Posts: 546
Joined: Sat Feb 20, 2010 8:53 pm

Re: Right hemicolectomy fears

Postby KimT » Sun Oct 16, 2011 4:52 pm

lisacc123 wrote:All good advice, thank you :)
I am a very well behaved patient (apart from any attempts to escape! haha!) so hopefully the nurses will be nice to me.
Kim, here in the UK we now have what is called an 'enhanced recovery programme'. This wasn't in place when I had my hysterectomy so I'm curious to see how things will compare. Apart from having my resection done keyhole, I believe that there is no bowel prep, no NG tube and no drain. You are also allowed to eat up until 6 hours before the op and drink until 4 hours before. Afterwards, they have you drinking and eating asap. They also have you up and about asap! All this sounds like good news to me. I was very dehydrated when I had my hysterectomy and felt horrible for days afterwards (although I was only in hospital 4 days) so I am tentatively hopeful that this will be easier on the body. I plan to be outta there at the first opportunity! Also, I believe my surgeon doesn't use staples, either inside or out. I'm very prone to skin allergies so Kim, your problem with the metal clips did catch my attention. I'm sorry you have had to go through so much for such an avoidable complication.
I shall let you know how things go. Thanks again.
Lisa


No prep, no ng, and no drain!? That is the worst parts of the whole thing. Do tell us about your recovery as that is really interesting. Sounds great actually. I think you have the right attitude and you will do fine after surgery.

As for my complication, I do not blame the surgeon as I do not think that could have been predicted. I do however hold him accountable for not researching further when I had so much post surgical pain and complications. He is highly regarded and a well known colorectal surgeon in the US. Frankly I think he's a pompous a** or a**e :wink: who thinks very highly of himself and as such was unwilling to look outside the box. I do understand that the system is set up in a way in the US that doctors practice medicine in self defense in fear of lawsuits and do far more intervention than is necessary ie the ng tube, prep, and no food for days following surgery.

Anyway this enhanced recovery program sounds very interesting and please do check in with us afterwards. I'm going to have a prophylactic hysterectomy in 3-4 years and I like to know what options are out there. Right now the plan is have it done in thailand as I am much more confidant in having any future surgeries there as my outcome was so positive.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

lisacc123
Posts: 30
Joined: Sat Oct 15, 2011 1:06 pm
Location: North Yorkshire UK

Re: Right hemicolectomy fears

Postby lisacc123 » Tue Oct 18, 2011 5:18 pm

Hi Kim,
I will indeed let you know how it goes :) As for your prophylactic hysterectomy, I can reassure you that if you do go ahead with it, that you will be fine afterwards. How old are you now? I was 34 when I had my hysterectomy and my ovaries removed. I then waited a year before starting HRT (I was on chemo for 6 months) and haven't really looked back since. Before taking HRT I did have a few menopausal symptoms but nothing too dramatic. I noticed my finger joints were a little bit stiff and that I was generally hotter, but I didn't suffer from hot flushes or mood swings or anything else, and within 4 weeks of being on the HRT I can honestly say that I felt really good and have done ever since. As Lynchers, all our decisions are very personal and ultimately we each do what we feel is best for ourselves, but I just wanted to let you know that for me, having the hysterectomy was no big deal.
Take care, Lisa :)
Lisa
Endometrial & Ovarian Cancer '05 aged 34
Hysterectomy '05
6 rounds of carboplatin
NED
Lynch Syndrome
Prophylactic right hemicolectomy Oct '11
Recovering quickly from surgery and enjoying life :)

SkiFletch
Posts: 6360
Joined: Mon Dec 07, 2009 3:39 pm
Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: Right hemicolectomy fears

Postby SkiFletch » Tue Oct 18, 2011 5:28 pm

Hey lisa, does your doc plan on using supeglue then? Mine used some kind of dissolvable stitch inside and superglue on the external incisions. I'm sure it was 11 million dollar sanitized hospital superglue, but it worked great. The nicest part was that there was NO wound care instructions and it left next to nothing in the scar department :D
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

lisacc123
Posts: 30
Joined: Sat Oct 15, 2011 1:06 pm
Location: North Yorkshire UK

Re: Right hemicolectomy fears

Postby lisacc123 » Tue Oct 18, 2011 6:31 pm

Superglue sounds great! (Let's hope he doesn't stick himself to my navel, that would just be embarrassing!) I have a pre-op thingummy on Thursday so I must remember to ask. The only thing I know for sure is that he doesn't use staples, either inside or out. He hand stitches the anastomosis, which sounds rather quaint, but I prefer the idea of that to staples. My hysterectomy incision was stapled and I can still see all the little dots running up the sides of the scar! I'm hoping for something a bit more refined this time! How many incisions did you get with your resection? My surgeon reckons 3 or 4 with one slightly longer than the rest. I think he's planning on opening up my old scar a bit for that one, so with any luck he'll neaten it up a bit afterwards! ;)
Lisa
Endometrial & Ovarian Cancer '05 aged 34
Hysterectomy '05
6 rounds of carboplatin
NED
Lynch Syndrome
Prophylactic right hemicolectomy Oct '11
Recovering quickly from surgery and enjoying life :)

KimT
Posts: 546
Joined: Sat Feb 20, 2010 8:53 pm

Re: Right hemicolectomy fears

Postby KimT » Tue Oct 18, 2011 9:16 pm

The first resection, I had a 4 inch scar through the belly button and 3 other 1 inch holes where they used the scope. The second surgeon used the same incision through the belly button but only one additional hole for the scope. Second surgeon did a much better job at stitching things up. He even reconstructed my belly button which had been decimated in the first surgery and my stomach looks quite normal. Just a pencil thin line through the belly button. The first incision did not heal up well and looked awful. I was happy to feel better but really touched at the extra mile he went to do a bit of cosmetic work.

As for my hysterectomy, the plan was to wait until 38. I'm 33. I debated having it done with the second resection but ultimately decided to hang on to my estrogen for as long as possible. I'm doing yearly uterine biopsys and vaginal ultrasounds in addition to my annual pap to keep an eye on things.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

Lisa326
Posts: 1
Joined: Mon Jun 19, 2017 2:39 pm

Re: Right hemicolectomy fears

Postby Lisa326 » Mon Jun 19, 2017 3:13 pm

Hello everyone,
Quick long overdue update ... I am the lisacc123 on this message board but long since forgotten my sign in, so here I am again all shiny and new ...
MY right hemi-colectomy that I was so worried about almost 6 years ago is now but a distant memory, something I only think about occassionally when I am due another colonoscopy, which is in about a month's time, hurrah! The op was a resounding success and since then I have moved to Cornwall where I now live next to the ocean, finished my MA degree with a distinction, lived on a boat, started a creative business and established a relationship with the love of my life. In short, despite the Lynch and the roller-coaster Game of Cancer, things have been going pretty well for me. I'm 46 now (but I try not to act my age too much) and hoping for many more years of life and decent health. Admittedly, I don't know what might be coming for me, but then who does?
I just wanted to post this for anyone who is currently facing surgery, to let you know that there is life on the other side.
All the best to you all, Lisa 8)
Ovarian Cancer 2005 Stage 1b
Endometrial Cancer 2005 Stage 1a
Hysterectomy & Removal of Ovaries
6 rounds of Carboplatinum chemo
Pre-cancerous polyp in caecum
Right hemi-colectomy 2011
Lynch Syndrome
NED
LIVING LIFE TO THE FULL YEE-HAAAAAWWWW! :D 8)

Utwo
Posts: 102
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Right hemicolectomy fears

Postby Utwo » Mon Jun 19, 2017 5:44 pm

lisaCC123 wrote: Can any of you guys who've had this op give me any reassurance that life will return to normal afterwards? I've never had any trouble with my bowels and I'm fearful about that changing.
Congratulations with the outcome of your surgery!
Lisa, could you provide an update on your current life?
How different is your current bowel movements pattern from pre-surgery one?
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/16 colonoscopy #1: 2 small polyps removed in left colon
04/16 colonoscopy #2: caecum sessile 3 cm polyp piecemeal removed
05/16 CT, blood test ...
05/16 laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)

Beckster
Posts: 84
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Right hemicolectomy fears

Postby Beckster » Mon Jun 19, 2017 5:57 pm

lisaCC123 wrote:Hello everyone,
I posted on here a few weeks ago with a question regarding right-hemicolectomy vs subtotal colectomy for Lynch syndrome. I had a lot of helpful replies and after much research and soul searching I decided to opt for the right hemicolectomy and continue with yearly scopes. I supposed it's important for me to clarify that I don't have colon cancer at this time, just a small pre cancerous polyp. I have, however, had endometrial and ovarian cancer, both which were successfully treated over 6 years ago.
I'm now 41, in good health, slim, fit etc etc. I'm truly dreading having this surgery, particularly as I don't feel unwell, but at the same time I realise I am fortunate to have the choice, such as it is!
My surgery is scheduled in 2 weeks and will be done laparoscopically. My question is simply this ... Can any of you guys who've had this op give me any reassurance that life will return to normal afterwards? I've never had any trouble with my bowels and I'm fearful about that changing. My surgeon is dismissive of my worries and I believe he is an excellent surgeon, but still I'm having palpatations just thinking about it! It took me a year to recover from my hysterectomy (although that was a massive open incision followed by chemo) and I have fought hard to put all that behind me. I've recently started a new romance with a gorgeous sweet man and I'm planning on applying to do an MA in art next year in Cornwall in the UK (where I live). Life is on the brink of being so good again. Don't want to mess it up!
Hope everyone is good. Some of your posts have given me much inspiration. I guess we're all just normal(ish) people in abnormal situations!
Cheers all :) Lisa


Hi Lisa,

I had a right hemi on November 4th 2016. The surgery was 7:00 in the morning on a Friday and I was discharged 6:00am on Sunday. I was eating regular food the next day (bagel with cream cheese and jelly for breakfast!) I had no pain except for the small incision (lap procedure). If they ask you if you want an abdominal block, say yes! It really helped with recovery...I did not need any pain medicine and ask them to stop giving it to me. I have normal bowel movements, but sometimes I have diarrhea; however, I had diarrhea before the surgery depending on what I eat. You will be fine! Remember the most important part of the recovery process...WALK,WALK, WALK! the more you walk, the faster the recovery.

Beckster
57/Female
DX:(CC) 10/19/16
11/4/16- Laparoscopic right hemi(cecum)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (biopsy from colonoscopy)
TNM: T3N0M0
Stage : Stage IIA
Positive lymph nodes: 0 out of 24
Preoperative CEA- 1.9, Postop(8weeks from surgery) 2.5
Lymphovascular invasion
Surgical margins: clear
MSI-Negative
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy

inder_muc
Posts: 2
Joined: Tue Oct 25, 2016 1:54 am
Location: Munich, Germany

Re: Right hemicolectomy fears

Postby inder_muc » Tue Jun 20, 2017 9:20 am

Hi,
I got operated last year. I am Lynch positive too. Now I am back to normal and under surveillance. Good to hear that you are doing fine too.

Inder
DX 07/2016 Colon Cancer Age 38, Male - Right Hemicolectomy
Stage 2A T3N0M0
Lynch Syndrome

TXLiz
Posts: 168
Joined: Thu Sep 22, 2016 3:31 pm

Re: Right hemicolectomy fears

Postby TXLiz » Tue Jun 20, 2017 2:40 pm

Right hemi here. They opened me up so I have a large scar.

I don't have any new day to day issues besides loose stool or diarrhea if I eat greasy food.

Good luck!
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"


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