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catlady91

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Posts posted by catlady91

    Fingers crossed for mum's scan tomorrow 🤞🤞

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    Posted

    My mum is having her check-up scan tomorrow. Her last one was six months ago when her oncologist said that because she's been NED for almost three years, that the scan frequency could be decreased. I hope that all will be ok. Mum seems well and happy and full of energy. The oncologist calls my mum a week after the scan so I'll have to wait till the 26th when mum has her phone appointment. I start my new job on the 26th so will be a bit jittery and distracted. Not great for my first day. 

    My first ever surgery!!

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    Posted

    I'm sorry to hear about your setbacks Rikke but it seems now that things are back on track and look positive. I'm keeping my fingers crossed for you and hopefully the surgery will lead to long term remission. Will you have chemo after the surgery? 

    Update- all is good 👍

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    Posted

    I haven't posted an update in a while. My mum had her scan in around March or April and she's still NED. I didn't want to post nearer the time as I felt it would be unfair to share good news when Justin received such terrible news and unfortunately passed away. I feel very sad about Justin's passing. I didn't know him in person but he was a constant person on this forum and despite his own poor health cared about others on here.

    Since my mum has been NED for almost three years, the oncologist has lessened the frequency of her scans. Instead of every three to four months, mum will have a scan every six months. She's currently away in Poland for a long break. The only thing causing her trouble is her knee which she's struggled with for years. Her knee has gotten to the point where she needs a knee replacement. It sucks that she's in pain because of her knee but I've heard that knee replacements give people a new lease of life. She had a gastroscopy ages ago and they did a standard biopsy as she was having stomach issues where they found something benign. They said it didn't require any treatment and they discharged her from the gastrology department. My mum's doctor friends say that with older age you find more and more benign lumps and bumps. Although my mum looks incredible for her age and is young at heart, she's almost 74 and ages catches up with you especially health related things. All of our neighbors above 60 have had either a knee or hip replacement. Other than that my mum is doing well. 

    Mri scan

    in MEMBER UPDATES

    Posted

    I'm so so sorry to hear about Justin's passing Izzy. He seemed like a truly wonderful and kind man who despite his own terrible predicament gave comfort and support to others on here. The only comfort is that he's no longer suffering and has gone to his heavenly home. My thoughts are with you and your family. Please continue to be in touch with us and let us know if there's anything we can do to help even if it's to chat xx 

    Mri scan

    in MEMBER UPDATES

    Posted

    I completely agree with LilyMir. It's good to think outside the box and get a different opinion. My mum had two awful oncologists before her current one who is fantastic. One was inexperienced and slagged off my mum's current oncologist who is a very experienced senior doctor who also works in a very prestigious hospital and the other was so rude, negative and unknowledgeable and also slagged off my mum's current oncologist. It was definitely jealousy as the awful oncologists were both men and I think they felt intimidated by and jealous of my mum's oncologist who is a woman and is very well known and revered in her field and has an extremely good reputation. 

    Some doctors really don't care about their patients and for them it's all about status and money. My mum's lovely oncologist actually cares about my mum and when we thought that the cancer returned (luckily it didn't and was inflammation from immunotherapy), she did everything that she could to get my mum onto clinical trials. The other awful oncologist didn't have a clue about any clinical trials when my mum asked him. Luckily my mum didn't need any clinical trials or treatment as she was NED all along and what they thought the "cancerous activity" was inflammation.

    My point is that it's important to find a doctor that you gel with and who will do anything to fight your corner. A lot of success stories come as a result of doctors not giving up on their patients. There were people who were told that they were terminal by one doctor and so they went to see a different doctor who said that they would do anything to help them and thanks to that doctor not giving up on them, they surpassed the initial grim prognosis. 

    It's also worth having a look abroad as LilyMir says maybe in France or Germany. It can be expensive to fund but crowd funding can really help. We would even be happy to help set up a fundraiser on here if necessary.

    Mri scan

    in MEMBER UPDATES

    Posted

    I'm so sorry to hear this Justin but I agree with the others. So many people have been told they have weeks or months to live but they prove the doctors wrong. Do they know if the treatment is having any effect? Have you had any scans? How can they tell you that you have weeks if they don't know whether or not the treatment is working? 

    Mri scan

    in MEMBER UPDATES

    Posted

    I'm so so pleased for you Justin. Your news has made my day, well evening 😊. It seems like there's every reason to be hopeful. I'm glad that you're getting some of the feeling back on your right side. This seems very encouraging. I'm hoping that they'll be more good news to follow ❤️.

    Gastroscopy results normal and three year cancerversary

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    Posted

    Hi there I thought I'd update everyone about my mum's gastroscopy. She had one over two weeks ago and the found a small nodule which they didn't think was suspicious but they said it's standard to take a biopsy. Although they said it wasn't suspicious I still felt worried. Fortunately everything is ok and the results are normal. Next week is my mum's three year cancerversary. I can't believe it's been three years! 

     

     

     

     

    Mri scan

    in MEMBER UPDATES

    Posted

    I'm sorry to hear about your family problems Justin; my mum and I have had our fair share of problems with certain family members who weren't as supportive as they could have been during her illness. Although we've made up with them, I will always feel bitter and sadness for how they behaved. Family problems are a pain and makes life harder than it needs to be. 

    I'm glad to hear that you're sounding a bit more positive. Don't give up on your dreams and don't let cancer hold you back. I let my mum's illness hold me back and stop taking care of myself and looking forward to things. I was scared to plan holidays or look forward to things in case the cancer returned and my mum had to urge me to book those holidays and live my life. My mum is also fulfilling her dreams. When she was first diagnosed with cancer, she said that if she survived the year and would be in reasonable health, then we'd go to Croatia and we did (though after 18 months due to COVID)!! 

    Mum was worried she wouldn't go home to her flat in Poland and see her friends after being diagnosed but she's been four times for longer than a month each time! Mum also has booked other holidays. She's going to Israel at the end of March and she wants to book a holiday to Florence. 

    Please don't give up. Anything is possible. The only obstacle I can think of going to the US is health insurance which is more expensive for people with pre-existing health conditions. However it's still possible to go, but it means that health insurance will probably cost more. 

    Stay positive and keep us updated xx

    Gastroscopy and nodule

    in MEMBER UPDATES

    Posted

    That's very true. In the UK palliative usually means end of life with the aim of treatment being to alleviate pain, not to control or get rid of cancer. I've read on some American sites that palliative doesn't mean end of life or terminal but it can be used together with curative treatment as you say. I really hope everything will be ok and fate won't deal us an unlucky hand just as it's close to my mum's third year cancerversary and almost two and a half years of being NED. 

    Mri scan

    in MEMBER UPDATES

    Posted

    Never lose hope. The doctors obviously still thinks there's a chance. Surgery isn't always the best option for people. I've heard that it's possible for undetected cancer cells to be left behind during surgery and they start to grow again. 

    Incurable doesn't mean untreatable, hopeless or terminal. Cancer is being treated more and more like a chronic illness like AIDS or diabetes. Some argue whether or not cancer is truly curable as it can always return. 

    There are more and more treatments being approved. When is the next meeting with the oncologist? When my mum was going through treatment she wrote down a list of questions to ask and she'd write down the answers and doctors comments for example when the doctor said she had "excellent response to treatment". It really helps to have a record of what is said and to ask questions so you're as well informed as possible.

    We're here for you. You're not alone. The majority of us have been through this dark hole but there is a light there even if it doesn't seem likely xx

    Mri scan

    in MEMBER UPDATES

    Posted

    I'm so sorry to hear that you're going through this Justin. Please DO post on here and say how you're feeling; this forum is for support and help, not just for success stories. You're not bringing anybody else down. 

    I can understand your frustation and disappointment. I think you should go ahead with the treatment. If the doctors didn't think that there would be a chance that it would work, they wouldn't offer it to you especially not on the NHS which is known for their cuts and budgets. Some treatments don't work unfortunately, but it doesn't mean that others won't. Many people on here have gone through trial and error with treatment. 

    Perhaps you could talk to your oncologist about if you have any cancer markers or your level of PDL1 so that targeted therapy or immunotherapy may be options. Perhaps you could also see if you're eligible for any clinical trials. Clinical trials have been a lifeline for many cancer sufferers who wouldn't be here today if it wasn't for the trials. But I definitely think that it's positive that you have options and that the doctors aren't giving up and are trying different treatment options. 

    I know it's very hard but try to keep your chin up. Nothing is impossible. There have been people with lung cancer who have been where you are and years later they're living to tell the story. Tom is one of them xx  

    Gastroscopy and nodule

    in MEMBER UPDATES

    Posted

    Thank you for your replies everyone. My mum went for another ultrasound of the kidney and vaginal area the other day as she's been having discomfort (they didn't find anything) and she spoke to a very nice doctor who said it's common for people over 60 to have nodules and growths and that they're mostly benign. The nurse from the gastroscopy said that doing a biopsy is standard even if they don't think there's anything concerning. I hope that everything is ok. I think I'm just super worried about everything because of the trauma of my mum's diagnosis. 

     

    Gastroscopy and nodule

    in MEMBER UPDATES

    Posted

    My mum had a gastroscopy as she's been having problems with her stomach for a long time. They said that everything seems normal and that they saw a hiatus hernia and a small nodule. The nurse didn't seem to concerned and said that they always do a biopsy as it's just procedure. I think my mum had a biopsy for something relating to the stomach ages ago. When the nurse said nodule I immediately panicked and can't remember what she said but she didn't seem too concerned. My mum had her last CT scan at the end of November so surely something would have showed up? 

    I did some reading and read that gastric metastasis is extremely rare and when I Googled stomach nodules it came up with polyps (they don't seem to call them nodules but polyps) which are mostly always benign and can be caused my medications (my mum takes a lot of meds so very possible) and over acidity and ulcers (which my mum has had). 

    Am I thinking into this too much? 

    Mri scan

    in MEMBER UPDATES

    Posted

    I'm so sorry to hear about your setback Justin. My heart goes out to you. Is it possible that it could be swelling? When my mum initially started immunotherapy her "tumour" was the size it was when she was first diagnosed but it was inflammation from immunotherapy and no actual tumour. I don't know if you've tried immunotherapy but maybe it's swelling after surgery. The tumor could have grown back a bit but not to it's original size.

    I hope that radiotherapy will keep things stable. It's good that you are being offered different treatment options. Sometimes it can be trial and error with cancer treatment. Perhaps immunotherapy or clinical trials could be an option.

    I can imagine what a difficult time you and your family are going through. Will you have a meeting with an oncologist? Perhaps they can shed more light on the situation.

    My thoughts are with you xxx 

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