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posted by twig88
21 August 2022

Meeting Oncologist

Last reply: 20 days ago
Hi I’m just wondering how long you be waiting to meet with your oncologist? I had my surgery (lumpectomy) on 28th July and my follow up appointment on the 12th August and was told I’d be meeting with my oncologist to discuss starting chemotherapy but i haven’t received any appointments yet. I’m just eager to get started.
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posted by LS
13 August 2022

Lynch Syndrome

We run a Facebook (Private) support group for all those affected by Lynch Syndrome. I have inherited one of the predisposition Genes (MSH2) and know how hard it can be to find information and navigate the medical system. We are also aware that the current system is far from perfect and can be confusing. When you are trying to understand your inheritance or potential inheritance and navigate the medical system we believe speaking to others in the same boat who really understand can make all the difference . We are a caring group of people there to listen and offer support . Anyone can find us by following the link below or entering Lynch Syndrome Ireland you will be directed to our open Facebook page. https://www.facebook.com/lynchsyndromeirl/
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posted by Doireannf
04 August 2022

Hair loss in kids

Last reply: 1 month ago
Hi my son who is 6 is receiving chemo and his hair has started to come out - would anyone recommend any child friendly books I could read with him or give to his teacher to read with his classmates to explain this for him and make it more 'normal' for him thanks
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posted by CHegarty6959
30 July 2022

I have to decide on what treatment

Last reply: 1 month ago
Hi My name is Claire and I diagnose with breast cancer . I had the operation where they remove the cancer and one lymph node which came back postive. So the sent it of for Oncotype DX which came markers 12 which is very good. But because of new research they co.e up with two options and my makers where low Im 50/50. So i have to decide whether to get all the lymph nodes removed radiation treatment and tablet but they say Im high risk of getting lymphedema. Or not to have the operation and just have radiation ct scan ones year and tablet . So I dont what to do has anyone else come across this Claire
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posted by LeaB
08 June 2022

CMML1

Last reply: 1 month ago
Hi all. I was diagnosed with CMML 1 on June 2nd, all very new and scary. Anyone else out there with Leukemia? Take care Lea
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posted by Fairyandbutterfly
05 June 2022

Close friend has barely contacted me since my diagnosis.

Last reply: 3 months ago
Hi was diagnosed with invasive ductal breast cancer in April 2022 and due to other ongoing yet to be diagnosed issues going on, I had extra tests, scans done before I had surgery last week. A close friend has barely been in touch since my diagnosis. I had sent a few msgs without a reply until I passed her while driving and I waved at her. I got a msg to meet the next day with our young kids for a playdate. We met up and had a chat. It was mostly me answering questions about my cancer and plan and tests etc as she hadn't been in contact prior(bar a few texts about generic kids stuff) to know what was going on. My surgery was booked for her birthday. When leaving the playdate, there was no good luck or hug or any mention of my surgery etc. There was nice normal messages for the next 2 days about normal everyday things, kids, summer etc then nothing for 3 days. On the day of the surgery, I was in hospital a few hours and people were messaging me with nice messages before surgery so I was replying while waiting. I sent her a little birthday gif to acknowledge her day. It was only then that she replied asking if I was in hospital already and thinking of you. I replied a short message (as nurses drs etc were in and out to me for tests and talks) saying I felt positive and calm and i told her the time I had to be in at. I was supposed to be home that evening but due to an "episode" (reason for my extra tests etc) post surgery i was kept over night until all had settled the next day. I was sent home with 72hr holter and started on beta blockers until I'm reviewed by cardiologist in a few weeks to try figure out whats causing these spontaneous attacks. Obviously I was in a bit of pain post op too and with extra issues I felt a bit off plus I arrived home to our 3yr old with a vomiting bug. I got no msg from my friend until 3 days post op asking how I am, how was op, and that she didn't want to be annoying me asking how I am etc. I replied with a shortened version of how all went including episode post surgery and result of that being that I've to be followed up by cardiologist too. I didnt get a reply to this. I got a short msg 2 days later about a kid birthday party venue question and that's it. Is it normal for a close friend to distant herself and avoid the whole cancer situation? Do you have advice on how I can approach this with her without causing insult or upset? I definitely dont want sympathy, I never want to be looked at with the "aw poor you" look. But I want to be able to chat about our lives, mine and hers good and bad like we used to. I feel if I leave it, that our friendship may end and I don't want that but I also don't want to put her on the stop with a straight out awkward question. I don't know if she cares, or if she doesn't know what to say or she doesn't want to know. I'm not sure what is going on to be honest. Sorry for the long post. Thank you for listening. 💛
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posted by Pisces25
22 May 2022

Breast Cancer Diagnosis

Last reply: 3 months ago
I’m 40 years old and on Tuesday I was diagnosed with breast cancer, invasive ductal carcinoma. Everything since then has just been a bit of a daze, moving through the days but without really being present. I had an MRI on Thursday gone and have a CT scan Friday coming and a bone scan the following week. The waiting it so hard, I want it dealt with immediately. I am a mother of 3 children, 20, 16 and 15 and my youngest has her JC in 2 weeks so I’ve made a choice not to tell any of them until that’s over to give her the best chance. I don’t know if that’s the right thing to do. I’m absolutely petrified. I know I need to be strong and positive but right now I’m anything but. My mind is wandering to the worst places, I can’t sleep, I’m lost and in limbo and I’m really angry. I just want to wake up from this bad dream
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posted by dublinsouth1
16 May 2022

Prostatectomy query

Last reply: 3 months ago
Hi all, I am a 44 year old man who only last week was diagnosed with stage 1 prostate cancer. while I am considered very young to have cancer of the prostate I think I am lucky that it was spotted so early. however there is always doubt and worry. I am due to to have a full radical Prostatectomy at some stage over the summer. I am just hoping to speak to somebody else who may have had an RP. Specifically I wanted to know what life is like after the procedure.. Specifically around continence and erectile function etc? Nice to meet you all and now be part of this community.
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posted by Harperkelly1
05 May 2022

Breast Cancer Diagnosis

Last reply: 4 months ago
I was recently diagnosed with Breast cancer at present the consultant said its primary however ive to go into for a 2nd biopsy as 1st one was not adequate enough for lymph nodes so he said at present stage 1 but obv that could change? I am 43 and I'm in utter shock as was not expecting this outcome my mother died at 51 of endometrial cancer and I always thought in the back of my head more of me possibly getting similar but never the breast I'm distraught like many others but especially about telling my young children and what the outcome might be just in limbo past two days
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posted by DOE
20 February 2022

Prostate

Last reply: 6 months ago
Hi I've just been diagnosed with prostate cancer. Biopsy report shows Gleason score 8 in 2 ( 2 of 5) of the 21 scores submitted, 6 in 6 of the cores. Calculated volume of prostate is 40ml. No perineurial invasion or extraprostatic extension. ISUP 2014 prognostic grade group 4 Tumour replaces 80% of the most involved core. PSA 5.4 up from 4 last Sept. My urologist gave me the diagnosis by phone. he said the choice was between surgery and radiation treatment. I asked his opinion and he said that although he is a surgeon in my case he wouldn't recommend surgery and has referred me to a radiation specialist. Has anyone a view on why he would not recommend surgery? also, the biopsy report hasn't stated the stage off my cancer - does anyone know is this normal. I am very concerned that with Gleason 8 I am not pursing the right option and also concerned about the pace at which this can develop.
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