SarahIOM1965

Reeling at the moment, alot to take in..

2011-02-22T10:04:37Z

Tues 22.2.11

Well, this wasn't how I thought things were going to go, given the fact that up till last Wednesday consultants were telling me they didn't think anything was wrong. Last Wednesday morning I spoke to a gynae consultant about my abdominal pain and bloating and he said he would do a laparoscopy if i was so worried but he didn't think he would find anything significant i my 4cm ovarian cyst was perfectly normal for a woman of my age. He said i may just have to learn to live with whatever pain i have an take paracetomol.

In the afternoon, I went for my flexibile sigmoidoscopy to have removed a "sub-1cm polyp" from my colon identified on a barium xray. However, during the procedure the consultant said "you have an awful lot of polyps in here. I no longer trust the barium results and will have to get you back in for a full colonoscopy". He then asked me if i have a family history of colon polyps or tumours. I told him what i told him previously that my mother has a stomach full of polyps. He then announced i may have to have my colon removed as i am "too young". After taking several biopsies he then said he would see me in 3 weeks for the results and for the colonoscopy.

Left with that devastating news, but no further explanation of what he meant I went home and looked up "multiple colon polyps" and "family history" and saw what he meant. There is a rare gene mutation passed down through families that predisposes you to colon cancer at a young age (99-100% likelihood) and the only way to prevent it is colon removal.

I then contacted my mum who lives in France and told her to go back to her GP and ask about this disease. She did and her doctor immediately said she should have been suspected of having this a year ago when she was experiencing clear symptoms of bowel cancer. She is now waiting to have her colon examined and her stomach once again.

In the meantime, I have just had to tell my 3 grown up (18, 20 and 24) children they need to get tested for this dreadful disease, having a 1 in 2 chance of having inherited it. It seems my mother was the start of this gene mutation, as we have no family history of this. I also had to tell my brother to get tested.

I am devastated by this news, wondering if I have cancer that has spread given all my symptoms (especially breathlessness) and how many others in our family will have to face this.

I'll update this site as and when i get news.

23/1 Symptoms continuing to concern me

2011-01-23T17:05:35Z

Hi all,

Having seen my GP last Tuesday I have finally got my urgent referral to a gynaecological consultant. GP agrees my symptoms more than warrant this. I am now hoping to see someone within 2 weeks so fingers crossed.

My symptoms are really worrying me - I still have UTI symptoms despite finishing the course of antibiotics. That's two infections treated with quick recurrence. Also, I am now experiencing increasing pain in my lower back, more nausea and less ability to eat without feeling ill or uncomfortably full, and this evening stabbing pains in my right pelvic region. However, the cyst is apparently on my left ovary, let all the pain I get, including the back pain, is mostly on the right side.

I am constantly breathless, and get very tired and needing to sleep if I go out of the house or do anything other than sit down. And yet, barium xray, upper abominal ultrasound and pelvic ultrasound have picked up nothing apart from a benign hemangioma on my liver, a tiny polyp on my sigmoid colon and a small cyst on my left ovary, so none of these things add up to the kind of symptoms i am getting.

Trying very hard not to assume the worst but it's difficult not to ...

Urinary Tract Infection!

2011-01-15T15:28:05Z

Quick update: My frequent trips to the loo culminated in massive pain/discomfort in the bladder region and in the lower back and needing the loo constantly. I ended up seeing an out of hours doctor who tested my urine and said it was an infection due to evidence of blood and proteins. No idea whether this was aggravated by my current health issues or totally incidental.

I'm seeing my GP on Tuesday and will emphasise, given all the symptoms, that I believe an urgent referral is crucial. Wish me luck!!

My diagnosis journey so far...no end in sight :-/

2011-01-13T00:49:15Z

Well, I've never blogged in my life but I have suddenly got the urge at 1.45 in the morning! I don't know if I even have cancer, but I am in that frightening wirlwind of tests and results that is the diagnosis journey. I have copied and pasted my biography from my profile below and will endeavour to update periodically :-)

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I am 45 years old, with 3 grown up children, 2 younger step children and a wonderful husband. I experienced early stage vulvar cancer just a few years back but have had a clean bill of health so far, following a couple of surgeries.

I am now concerned as I seem to have all the hallmark symptoms of bowel cancer. Of course, it could be nothing, but I am not prepared to leave anything to chance. However, I am frustrated at how my GP seems over cautious and is not treating my concerns seriously enough.

My desire is to find companionship with others who have travelled the road and to give and receive advice and support. I have read the forum frequently of late and have been touched by the love and concern people show each other on this board. Quite honestly, I feel like its the only time I am with people who understand my emotions when I read your comments and queries.

Much love, Sarah

Update: I finally have a date to see a general surgeon next Thursday 28th, and a barium x-ray on Weds 10th November. I have constant lower back pain, alternating constipation and diarrhoea, blood in stools, gas pains and a feeling of not being able to empty the bowels completely. ...I will be so glad when I finally have a diagnosis. Whatever it is, I know I can handle it. It's the unknown that is so scarey!

Update: Consultant appointment with surgeon revealed a mass pressing against the rectum caused by either the uterus or ovary. Still having barium x ray on nov 10th to explore colon and waiting for an appointment for a pelvic ultrasound to see what's going on with my gynae organs.

10th Nov Update: Had my barium enema this morning to explore my large bowel. It really wasn't so bad! The radiology is quietly confident he couldn't see anything serious, but results will be in early next week. In the meantime, I am still queezy, tired and generally under the weather, so keen for answers!

13th Jan Update: It's been a long time since I've updated, but I've still been visiting regularly and have found alot of comfort and helpful info in people's posts. I finally had my meeting with the general surgeon on the 11th Jan to discuss my barium x ray and pelvic ultrasound. I have a small polyp in the sigmoid which they will remove in Feb to be on the safe side. i also have a 3.8 cm simple cyst on my left ovary so I am being referred to a gynaecologist via my GP. Going by timescales so far, that should take another couple of months! What confuses me is how a relatively small cyst can be affecting my health so badly. I haven't been able to do a full day's work since September (I'm self employed and work from home) due to tiredness, pain and just generally feeling distracted by all of this. The bloating/abdominal distention hasn't reduced and the nausea still comes in waves most days. For the last week I have had headaches on and off throughout the day and I feel breathless climbing the stairs. My lower back pain keeps me awake at night and makes sitting in one position uncomfortable for any length of time. How can this all be down to a tiny cyst? So confused! Rant over!