Community

We have established an advocacy group for Chronic Lymphocytic Leukaemia (CLL) patients and carers. Thanks in part to the help provided by the Irish Cancer Society, on 29 April we held the first ever Public Information Day specifically for CLL patients and carers. We were overwhelmed with the support shown and the attendance on the day, with almost 140 patients and carers present! We are trying to reach out to the CLL community nationwide. Make sure you check out our website www.clli.ie, and Follow us on Facebook (www.facebook.com/cllire) and Twitter (https://twitter.com/CllIreland).

Hey ladies, Firstly I have not had any diagnosis of breast cancer just been I a whirlwind of doctor after doctor and no answers.. So I now have appointment for breast clinic Monday coming have had chest x-ray today to rule out other possible causes. I have been dealing with very severe outer left breast pain for almost six weeks now shots of pain dart from the outside of my left breast to my nipple and then right to the centre of my chest I get a sudden stab of pain. I have been unable to even sweep a floor and feather like touch leaves me in tears. Infection has been ruled out. I initially went to my GP over a bulging vein in my left breast that only appeared when I lay down felt kind of silly for going bit now I am very glad I did. When she examined me I had little pain she explained she found what they call a mouse lump. She decided to do one last check and when applied pressure to the area I was suddenly in alot of pain. After I left the surgery the pain just shot out of nowhere absolutely crippling me for weeks now. My underarm is quite tender and all that general side of my breast and underarm is obviously swollen. I haven't been able to put on a bra for weeks and have to hold my breath through the really bad shots. I guess I'm writing here to see if anyone has experienced anything like this. Any advice would be very much welcomed. Thanks so much!

My mother is recently experiencing varying levels of memory loss and cognitive impairment. I have been told that the reason for this is a bad reaction to the bone injection Denosumab, so they have stopped giving her that. They have also taken her off Pabliocyclib as they plan to begin radiation on the brain, though this is being hugely delayed for some reason by the hospital. Can anyone help me out as to how radiation could possibly help with her memory loss/cognitive impairment? Has anyone had a similar experience or a loved one who has had similar treatment? I only see how it will make it worse.

Hi, I'm a little, well a lot sad today, my Dad has been diagnosed with stage four small cell lung cancer. He has no symptoms and went into hospital for something else. Unfortunately, I know a lot about the disease as a dear friend's sister has it and I've read a lot about it. I'm scared. My Dad knows nothing about how potentially serious it can be and he thinks he'll beat this with chemo. We're going to discuss his treatment on Friday and I don't know how he'll cope with the devastation if they tell him it's terminal (and my poor Mammy). Any advice on how I can help him through this? I'm being really positive when I'm around them but I'm petrified. Is there any hope for this type of cancer? I'm sick of the doctors already asking me if I'm medical when I ask them questions, they also said chemo is their only option, why can't they do radiation or immunotherapy? Any advice as well on what's ahead would be appreciated and how I can balance spending time with my own family (in Dublin), my family at home (Kerry) and work (Dublin). Obviously I want to spend as much time as I possibly can with my Dad and family. I have two young children as well who seemingly have been acting up since I've been home. I miss them terribly (and I have only been in Kerry six days). Any help would be so appreciated.

Hi there, discovered (Ultra sound) 2 weeks ago that Ive a lg grapefruit size cyst on 1 ovary, a smaller -6cm on the other & some smaller ones too. Consultant says he thinks borderline or grade 1. Not sure but Ive to have CAT TAP (thoracic, abdominal & pelvic) scan. It's €500 & VHI only cover it if I'm an oncology patient -so I guess I'm not officially YET -so Ive to pay. Also I'm worried about telling (adult) children who are away- the upset & worry for them. Any observations -suggestions welcome .

Hi there, I am 36 with two young kids currently living in New Zealand. We were planning on moving back to Ireland when I found a lump last month and was diagnosed initally with Grade 2 triple negative but changed to grade 3 ER positive after my mastectomy last week. I had 1 lymph node involved but also has drained to Internal mammary nodes which they could not remove so I will definitely be having chemo and radiation. Flying home next week to get my treatment started but not sure what to expect next. Have had MRI prior to surgery and had CT yesterday. What other tests did you do before they decided what kind/length of chemo you were having? I am anxious about delays in starting treatment. Any advice would be much appreciated x

Hi there, I really need some advice from someone who may have had a DIEP Flap. I had my original surgery 2 years ago and I'm wondering if anyone else has a crooked tummy???? I have had a few procedures in the last 2 years to remove dog ears, fill the breast as it went flat, and scar revision but I still have a stomach that isn't symetrical. Where I had the reconstruction on my left side, it sort of looks like a bulge and my plastic surgeon is blaming everything but himself! He even went as far as to tell me I was overweight (which I'm not!). Is very hard to find information relating to Ireland on the internet so if anyone can offer me any advice I'd really appreciate it as I'm very depressed about it and I thought this would be the best part of the whole 4 years of cancer, mastecomy, etc....

Hi there, haven't been on here in a while (which is a good thing I suppose)?.. Just wondering if anyone here can tell me how they discovered that their breast cancer had metastasized. I am almost 4 years clear from breast cancer and am now being referred back to the breast clinic as I am having major pain in my shoulder (opposite side to breast cancer) .. I have had an X-ray and Ultrasound but nothing has shown up (including no damage of any kind to rotator cuff etc.) the pain has now spread to my upper back (T3 area my Physio says).. I am worried sick and wondering if similar has happened to anyone else and if so was it resolved? Thanks x

Hi my dad has recently been diagnosed with bowel cancer which has spread to his liver they told us he has 3 to 6 months is this true or can he live longer it's killing me to know this and watch him every day knowing he has this I have been told that people can live up to 5 years with a diagnosis like this

Hello reader, my husband 53 has just been diagnosed with Lung Cancer. Right lung upper lobe .inoperable due to collapse of the top 3rd of lung and where it is placed. Sub group Squameons stage 3A... now that is all double dutch to me and i'm afraid to go on google. Heading for a pet scan on Monday next and that result will determine when chemo and radium starts ... Im scared shitless... ;(