@Consolation. Thx but not a big deal yet. I am male and it actually runs on my mother’s side with my sister’s and female cousins with ovarian cancer. My mom had it in her early thirties but they didn’t really know about Lynch then. She just got tested (she of course didn’t need to) at 89 and she of course is positive. No one with colon cancer… Yet… Polyps yes.
We actually have an extensive family tree with a genetics person. I have had conlonoscopies since I was in my twenties and I am 57 now,but just recently found out about Lynch and my sisters and myself got tested for lynch. Both my nieces and nephews are negative. Next up is my own 19/21 year olds. Will do once they are here in the summer. No rush right now due to their age. But if I am positive for actual cancer then they will get tested right away.
How is one tested for Lynch Syndrome? OK, just googled and it’s through a blood test but the cost is $1000! Wonder if my insurance will cover that…
I had my first colonoscopy at 50 and they found a couple polyps which were removed. I was told to have my next in 7 years so just scheduled it for April. Am being prescribed suprep. Above someone preferred Prepopik. Can someone tell me why? I have a tough time downing a lot of liquid and suprep seems to have a smaller amount to ingest than some of the other options but I find trying to keep all of them straight pretty overwhelming.
Because my DH was diagnosed with early colon cancer at age 46, our Ds have been strongly recommended to have a colonoscopy at age 36. Both plan to do that.
Definitely, @Knowsstuff! When they started talking to me about prophylactic hysterectomy and removal of ovaries if I turned out to have Lynch, I was somewhat freaked out, I admit, even though I am 65.
@collage1 , unless you have a family history of ovarian/uterine/colon cancer you are very unlikely to be a risk for Lynch.
Just one more thing… If you are tested positive for Lynch. Most hospitals etc use a company in California called Ambry. They do all types of genetic testing but most known hospitals use them. If your positive they will do “free” testing to family members within 90 days. Also you can arrange to do the subset test for like $200.00. Once you know the subset gene that’s all you need to be tested for so no $1,000 tests.
@collage1, when I researched suprep, I read it was low volume, but absolutely disgusting…kind of like condensed Golytely. It’s made of sulfates (which I generally try to avoid). Many people had a difficult time getting it down, even though it was low volume. My husband took Prepopik, and the taste is not bad. Also low volume. Both mixtures, you have to be very careful to drink plenty of fluids and keep your electrolytes up. I’ll let you know how it works out, I’m doing it next week.
To me, Suprep tasted like lemon flavored cough syrup with a can of salt thrown in. It’s just gross, and for some people, hard to impossible to get or keep down. But it works really well.
Many docs still like Golytely because it gets consistently great results.
Some docs quit using Prepopik (I thought it tasted like fizzy sweet tarts) because a higher number of their patients weren’t getting completely cleaned out. Plus it was more expensive than most. On the wonderful side, it’s only 5 oz. times two doses. But if you’ve had a history of not getting cleaned out in spite of following instructions, they will likely be very hesitant to prescribe Prepopik.
I got around the problem of efficacy by doing several days of low fiber diet beforehand and mag citrate the night before I started the Prepopik. I got good results.
@Nrdsb4, I’m going to do the low fiber thing too, and maybe two days of the clear liquids. But mag citrus the night prior to the prep, interesting. How much do you take? I guess you get that from a pharmacy, non prescription?
I asked my doctors office about “super prep” and they had no idea what I was talking about, kept thinking I wanted Suprep, even though I spelled it out and described it.
@busdriver11, thank you. I’ll wait to hear how it went with you and good luck with the procedures. Same, @MaineLonghorn–hope you get cleaned out and have an easy time and a good result!
Main lesson for everyone else: Hydrate, hydrate, hydrate. I’ve posted this before, but I think it bears repeating. I knew this, so I made an attempt to drink lots of water this morning, three hours ahead of the procedure. This is particularly important for me, because I have the tiniest, deepest, “squiggliest” veins imaginable. Last time, they said I was a little dehydrated so they said they had a hard time getting the IV needle in.
When I went in, the FIRST thing I said to the RN was, “I’m a very hard stick. Please get your most experienced person to put the needle in. I feel bad when people have a hard time sticking me.” The woman nodded, then proceeded to send in a young RN to do the job. Sigh. Why don’t doctors and nurses listen to me?
The young RN tried my hand and left arm with no luck. The first nurse then came in and took a look and didn’t even try. She said, “Let me call in Julie - she’s the 'vein whisperer.” I felt like saying, “Uh, why didn’t you call in Julie in the first place?!?” So Julie came in, and I couldn’t help but say, “Remember when I came in and asked for someone experienced?” and of course the reply was, “We’re all experienced…” Julie tried my right arm without success. She said I was her “challenge for the day.” She even used a tiny needle (a “24,” which I will have to remember for the future). She finally managed to get a needle in my wrist. This whole thing must have taken at least 30 minutes. Thank God I am not afraid of needles. I’m not sure how I can make it clearer to professionals that I need an expert to put needles in me. Maybe ask DH to yell at people for me? Only half kidding.
The good news is that I was cleaned out sufficiently and the doctor said my colon looks fine! I don’t have to come back for five years.
Afterwards, we tried out a Mexican restaurant we’d never been to. It was excellent! I ate three huge enchiladas, rice, beans, and salad. Two days with no solids or protein was tough. I’m very glad it’s over.
@ucbalumnus Yes, they found a polyp of concern in my first colonoscopy, six years ago. The doctor said he just hates to wait ten years for an exam, in case another polyp starts growing “tomorrow.”
@MaineLonghorn, glad that you got a clean report and don’t have to do it again for five years. It must be such a relief to have it over with!
I know what you mean about the IV, why don’t people listen? YOU know your own body better than the rest of them. That is so annoying. I found the IV insertion absolutely excruciating. A nurse decided the best place to stick me was in the back of my hand, by one of my knuckles, where there is nothing but skin and bone. My God, what is wrong with people? He finally got someone else to help, who decided to use one of my juicy, blue, obviously veins in my arm. I am going to tell them absolutely do not stick it into my hand again, and will make a fuss if they try to. Why is there such arrogance that the patient can’t possibly know what they’re talking about?
ML, I’m so glad you are thru and done for 5 years.
I recall a disastrous morning when I was so ill with a cyst. I was new to FL., and had my Mom take me to the hospital. The tech taking my blood twisted the needle, and I fell to the floor in pain. my mom, who was an expert in taking blood from the worst of all geriatrics (having worked at a large hospital for years) said, “ is this your first day? She has the biggest veins of anyone.” Well, I think the tech was truly inexperienced. My arm had a 6” red blood below the surface. In all the dialysis and chemo departments I’ve visited, there are always some staff better than others.
Had my first colonoscopy yesterday. I used the Suprep, wow, very salty, had trouble with the second dose, but managed to get it all down. I’m right there with you on the horrible veins, I told them repeatedly that I was a difficult stick, but the nurse I ended up with seemed really nervous. To her credit, she got it on the first attempt (after a little wiggling). I was very relieved. Two small polyps that I’ll get more info on in about a week. Glad to be done with it.
One reason they don’t send the “best” to start hard sticks: Everyone says they are a hard stick. One nurse cannot do all the IVs. The other nurses are usually fine. But they aren’t going to get them all. So someone is always going to feel they got a raw deal, not getting the “expert.”
I’ve seen this over and over. No one comes in and says “I’m easy. I have great veins. Send me anyone. It will be fine.”
It always seems so OBVIOUS when you really don’t know what it’s like to actually be part of the crew that has to carry out all of these tasks. You can get 25 IVs in a row, but when you miss, you’ve now been labeled by that patient as incompetent. I saw it happen day after day.
I’m an easy stick. I never would even think of asking for anyone special. I have a plethora of bulging veins in each arm, you can’t miss. The only time I’ve ever truly been in pain from an IV or a blood draw was when the nurse mercilessly kept trying to stick it in the back of my hand, an area with mostly skin and bone. Why would anyone ever do that?
I don’t have to come back for five years.