Have any UK ladies been invited for bowel cancer screening? I have and asked the Oncologist about it last week. She encouraged me to have it as obviously, we're going through enough and anything preventative is to be encouraged, right? The only caveat was get it done asap after the week off Ibrance/Palbo so the WBC is optimum. So, I've phoned them up and explained the position - was put on to a nurse who asked more about my condition and then said something along the lines of, well there's no rush for you to have it, if your chemo was going to end I'd say wait until after but obviously you've explained it's a little different. I should warn you though, , should anything untoward be found, there would have to be a review to see if there was any treatment available for you in the circumstances!!!! .......wait......WHAT! I've taken that to mean she was saying because of my MBC condition, I wouldn't get treated. I told her we'll cross bridges when we come to them, I've enough on without worrying about being popped off by something else. She misheard me and thought I said I was being fobbed off and got all defensive hahahaha. It did make me think though, what if we do get some other serious illness, does that mean they're chucking us on the scrap heap because of the MBC. We'll see about that......
On the scrap heap........: Have any UK... - SHARE Metastatic ...
On the scrap heap........
Hi Josie,
I am almost speechless! That nurse's attitude is out of order. Let's say for argument's sake that you have the screening and something comes back, you should still be treated the same as any other patient. It's the same for any other illness. Did you get a letter from your oncologist advising you to have your pneumonia jab last winter? I did, and got right on it. I also pushed hard for the shingles vaccine, and got that too, even though I am not 70. I am also booked in to get my flu jab next week. I want to arm myself against any possible illness or disease, and will happily attend any screening, vaccination clinic or examination. I was always like that, which seems ironic really considering what I am faced with now.
I would go ahead and take your oncologist's advice and have the screening, Josie, and then take things from there. I haven't been advised to have it. Do you have to be a certain age to get the test? That hasn't stopped me before, but I was just wondering!
Sophie x
Hi Sophie,
Yes it says on the letter for men and women aged 55 so that'll be why. I think it's a new preventative measure they've just started doing.
Can you even believe her attitude. I mean, don't get me wrong she was very nice and polite but I couldn't believe what she was actually saying. I'd like to see them try stopping me getting any treatment I need. Apparently, it's meant to be preventative anyway, any pre-cancerous polyps are removed from the bowel. I have diverticular disease so I feel it's very important for me to go ahead with this test as things can turn more sinister with DD.
I asked about the flu jab as I'd read about it, my Onc doesn't really advise me of anything - it's me that has to ask her! She just said the same, have it as soon as possible after the week off Ibrance/Palbo. I was only diagnosed in April this year so nothing about the pneumonia jab as yet and she didn't mention it when I brought up the flu jab, which I would have thought should have prompted her. Like I say though, it doesn't really surprise me if she doesn't mention things to me. I'll ask about that next time I go. Is that something a lot of people have then?
xx Josie xx
Hi Josie,
That would explain why I have not been sent a letter, as I am not in that age group. I will still go ahead and ask my GP about when I see her next week for my zoladex injection. Something else to add to my list to ask her for!
Polite or not, it is wrong of the nurse to imply that your current diagnosis would stop you from getting treatment if anything else came along in future. Hopefully nothing will, but that is disgraceful.
I will be having the flu jab and would advise you to do so as well. I'm surprised your oncologist has not said anything to you about it. Here's a link that might help:
cancerresearchuk.org/about-...
My oncologist sent out a letter almost a year ago advising me to have the pneumonia vaccine and flu jab. I always get a flu jab anyway, but was questioned when I went to have my pneumonia vaccine. When I showed the nurse the letter from my oncologist she let me have it.
Sophie x
Josie I have diverticular disease too. I had my first colonoscopy at 62 although in the US they say you should get it at 50.
The prep is the worst part.
Yes me too . I refused more. The pet scan and mri will pick up anything there.
I dont get those just a CT scan. Dont think it would pick up the pre cancerous bits but not 100% sure about that. X
Urgh it really is isnt it. X
I read what you wrote about what the nurse said and my immediate take was that she meant if they found anything, a different type of treatment would have to be reviewed first bc of your current medical situation and the medication you are on so that they could not do the regular treatment they usually do if they find cancer in another women's bowels. I in no way picked up (read it again) that she meant no treatment would be done for you. I'm sure treatment for a women who is diagnosed with bowel or anal cancer and who is otherwise healthy would be completely different for a women who already has MBC and is on a different treatment plan for her breast cancer. It doesn't even make sense that they would allow you to do the test, then find you do have cancer there, and would not treat you bc of your mbc. I am sure it would have to be worked out with your current onco and would need to be reviewed as opposed to the standard treatment they do for other women with no cancer. I have had three colonoscopies before the age of 55 BUT only because I was having bowel issues that turned out not to be serious, although painful. As mentioned below, the worst part is the prep the day before. I could be wrong but I think you totally misunderstood her response. I always get the flu shot and its actually done at my cancer center. I tend to not do follow up tests (before my mbc diagnosis). So when they removed 10 polyps the first time, the gastro doc (I am in US) told me to get another one in three years. Of course I never did and then was having issues and had another one. This time I had a female gastro doc to my colonscopy and when I woke up, she asked me if I had a prior one before and how long did that take say for me to wait before another one. I said three years, but it was now about 7 years ago. She said I had you scheduled for 40 minutes but she found 37 polyps and it wound up taking an hour and a half. None of them were cancerous and I felt fine afterwards. I think she was more annoyed because she said she never seen so many and did not have a larger amount of time allotted. Oh well
It does make sense because she was saying they take away pre cancerous polypse but if they found anything more they'd need to review 'under the circumstances' . If it was all ok, why would she choose to 'warn' me. No, I know exactly what she was saying, when you're part of a conversation you get a better feel for it.
True but I would expect that if they found something, they would not be able to do whatever regular treatment they might do for healthy women because of our situation and that they would have to review and coordinate with the onco. I would have assumed that anyway. I have had three of them already, the last one they found 37 polyps. They MAY turn cancerous. They took out all 37 and none of them were. That gastro doctor told me she never seen somebody with so many. But they took them all out and she was able to tell me that same day that none of them were cancerous so I assume they look different when removed if they are cancer.
Well god willing it wont come to that anyway. 37s a lot
Yeah, my own fault bc the last onco told me I should have a colonoscopy every three years and he only found 7. I was the type that never ever went to a doctor unless I am in pain. I have friends that go if they get a fever, or a cough. I just buy the over the counter stuff, lay in bed, drink hot tea and soup and it goes away. I am the say way with a dentist. I never go for checkups until it is too late and then I have an abscessed tooth. I have a friend in FL who is constantly going for every test there is, swears she has symptoms of just about everything (I swear she is a hypochondriac), she doesn't smoke, drink, eat meat and now she has been told she has high blood pressure. She is like I don't get it....I go for all tests that are out there to make sure nothing is wrong, I am on six meds and now told I have high blood pressure. She used to say you never go to the doctor, smoke, drink, use too much salt and sugar and you don't even have high blood pressure. I said George Burns who lived to be 100 was asked how he did it and he said he smoked a cigar and drank every single day.
God old George 👌 😂
I feel very stupid but there is something I want to post that I think will make others feel better. But I have no idea how to Start a new thread or make a Subject line to start a new thread. How do I do that? I can't figure it out LOL
I was not sure and was trying to create my first post with a title. It took a while but I thought I did it and also thought I put it on this specific MBC forum portion. Do the moderators review it first? It was long (and I mentioned that) and it was called Life after death. My own experience. It seemed to go through but now I don't see it. God knows where it landed, unless the moderators have to approve first. Please let me know if you see it or if not, how I can find it. I thought I put it here in this section, but now not seeing it. Thanks....
How strange if it disappeared. Mine comes on straight away. Just click on home page and it comes up with ' Whats your question' thats the title. Then put your full post in box underneath that. Maybe it was too long? Perhaps contact admin and query it.
I love the title of this Josie. Just how we feel at times through other people’s ignorance.
It’s not just us though, I know for a fact poor people with Rheumatoid Arthritis have a terrible time of getting anybody to listen to them when they have a problem that they consider not Rheumatoid.
Your Oncologist has obviously sent you so that you can be checked out thoroughly - good on them.
I hope you gave the Nurse an MBC Paddington Bear stare - or even better a quick retort and a wrap on the knuckles.
Clare xx
Hi Clare, It wasn't the Onc that sent me, it's just a new initiative by the NHS as a preventative measure. I just asked the Onc if it was ok to go. It's the first time I've encountered that sort of negativity - it was when I came off the phone and started thinking about it that it annoyed me more. ah well, never mind, these things are sent to try us. xx
Oh yes sorry, I forgot about your Onc for a minute then!!
We have had the poo test for a while in Wales. I’m not sure of the age group. I always get my Mum and Dad those cardboard bowls they use in hospital commodes, for their samples. Can’t be easy to collect 🤢
Good luck
It’s currently aged 55 here for the bowel cancer scope screening (tho’ they are reducing it to 50 in the future ) and then from aged 60 the poo test you referred to . The scope is like a tiny camera on a tube which is inserted into the anus and looks for any polyps , which are removed and then sent for analysis . If they then have any concerns , they do a colonoscopy under sedation higher up . x
Thanks for clearing that up.
Something to look forward to in a few years then!!
Hi Josie ! I have recently had the bowel scope screening ( for age 55 plus ) and went ahead with it on my week off ibrance . I had it on a Saturday afternoon ( I was the 22nd that day !) at my local hospital. I’m glad I did for peace of mind ...I even managed to persuade my husband to have his as he had put it off , but once he saw mine went ok , he agreed to go ! Let me know if you want to know anything else x
I've had a colposcopy before - is that what it is? I think the prep is worse than the actual procedure. Last one I had was day after boxing day and I had to modify my Christmas Dinner - boo!! I made up for it after though lol. Mine is now scheduled for 25th Oct - it's start of week 2 but that's the only time they could get me in. It'll have to do. xx
This one is simpler than what you had before ...you are just sent a liquid enema in the post to do a couple of hours before your appointment ( but you can eat anything up until you do the enema) . I had never done one before but the enclosed instructions were straight forward and I managed ok.
I was given paper Bermuda shorts to put on during the procedure ...as well as the usual gown . My husband has a rather wacky sense of humour ... he walked into his waiting room and there were 3 other males waiting , all wearing paper Bermuda shorts!! ( and their own boots) and he joked” I see we all shop at the same place ! “ , which definitely broke the ice !😂
For a colonoscopy , which is much higher up , you would have been sedated , but for the bowel scope , I was given option of gas/air and I was able to drive myself home an hour after the procedure. x
Oh my. I never would have agreed to a colonoscopy the day after Christmas and deprive myself. That had to be hard to do.
I had a really bad bleed from back end so it was urgent or I'd have delayed it. Made up for it after lol
Yep, that old stage 4 scrap heap. Do they listen to themselves? At what stage are we disqualified from receiving comprehensive and compassionate medical care? Better warn them, there’s plenty of room on this heap.
Hi there
I’m 65 and have been sent the bowel cancer test kit thing for a few years now...I sent the samples back and all was ok
However I was sent a kit shortly after my mbc diagnosis and I just chucked it in the bin and had a rant ....what was the point I’m dying of bloody breast cancer!!!!
So ladies...I put myself on the scrap heap...I feel different now as I’m still here but at that time I was inconsolable and the very idea of screening for another cancer was abhorrent and pointless at that time
Weird how this disease makes us think
Barb xx
It's slightly different for under 60s - it's a camera -EEK! - the test includes pre-cancerous things though so if I can avoid any further nasties/complications, I think for me it's probably worth it. If they did find something more sinister, looks like I've got a battle on my hands to get proper treatment! Grrr .....
Josie x
So it is similar to a US colonoscopy. A camera is inserted but you are out so you don't feel it. Funny thing was the first one I had was in the doctors office as he had an anesthesiologist that came to his office twice a week. I was on a table and he put something over my nose and told me to count to 10. I then said Well, are you going to start it soon bc this sedation is not working yet. They laughed and told me it was done already. I did not even realize I was sedated LOL. I was amazed. They advise people to have them starting at age 50 but when I had some bowel issues, the gastro doc suggested I have one. Whatever, God forbid, diseases or conditions we MAY get (and I don't worry myself about the "maybes") because we have MBC and are on different treatment plans, they would have to coordinate an approach that treats both diseases. Didn't realize that NHS was so restrictive.
Funny you say that. Recently my internet virus software came up after my three year plan for renewal. It's cheaper if you pay for a three year renewal. I thought you know what, this time I will just pay for a year renewal. LOL...True your thinking changes. First thing I took care of and is done bc I have no family to handle things when I am gone, is to ask a good friend that lives in another state who agreed. The attorney at my cancer center did a last will and testament for me, I have a health care proxy, I signed my friend over at my bank to have POD (Payable upon Death) so all she has to do is show ID and my death certificate and she can immediately get all cash out. I was disappointed to learn that I could no longer be a donor because of the cancer (it made me sad) but the young man at the cancer center could see I felt bad about that (only bc I know how much donation of organs can really help others), but he said in an excited voice, "Well, we can still use your skin for burn victims....he said you could sign a paper for that." He seemed to excited to have come up with something that could be used once I am gone. I remember sitting there and trying hard not to laugh at his enthusiasm.
I know exactly what you mean. Ive had a similar experience which i wont repeat here. I do have another serious condition (brain aneurysm) but i still dont consider myself on the scrap heap! Im a medical challenge which those who have the right attititude and aptitude for will gladly rise to
X
Yeah, I do not believe that if we got another serious condition, that they toss MBC women to the side. I do not believe that they forget about us. People complain but in reality the Ibrance and Verzenio are fairly new drugs that were developed for stage iv, and were pushed through by the FDA fairly quickly. If anything that shows me they are trying to develop something better. Years ago without those drugs, we may have very well been terminal but now there are several lines of treatment.
I am in U.S. and was told I could have flu vaccine, but probably would have little, if any effect due to low blood counts. Blessings, Hannah
I get the CT scan with oral contrast which lights up your intestinal tract and digestive system. So I’m wondering if I would need to do another test as well? 🤷♀️ Also I was told that it’s highly unlikely to develop a second primary cancer. Kind of like hitting the lottery twice. Not impossible but not likely...😀 Thank goodness! 😀
I get ct scan but no oral contrast. Not sure that would show up the pre cancerous polypse? Hopefully wouldnt develop another sort of cancer, one type is qite enough isnt it x
I have my CT scan with oral contrast and the dye they inject. Hate drinking that gunk!
Yes I get both too! Yes! One is quite enough!
I’m allergic to the dye, so just have to hope things show up without it!!!
Ive never been offerred it 😒
Weird. The contrast dye shows up the structures better (I think). My Onc said that it doesn’t matter as the radiologist makes sure they do a very thorough report when you don’t have the dye.
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