Afternoon, all.
Is there anyone here who can offer a bit of advice? Someone very close to me has just been diagnosed with breast cancer, and we're starting on the journey of surgery, radio- and possibly chemotherapy.
What should I be asking? What should I be looking out for?
Has anyone here been through anything similar and come up with things that they'd do differently next time (God forbid)? Or perhaps you have a few hints and tips?
I'd really appreciate it, either as a reply, of via PM! Thanks in advance!
I've dropped you a PM. Macmillan Cancer Support produce some absolutely excellent information leaflets and there is a lot of very practical guidance on their website.
Very important for you all to stay positive as I'm sure you know. The treatments and therapies can be gruelling but they have come on in leaps and bounds in recent years and these days the prognosis is better than ever.
All the best, Matthew
My only piece of advice is ensure you get a second opinion.........
My girlfriends sister was "diagnosed" November last year aged 25 with Triple Negative aggressive breast cancer. She was mother to an 8 month old at the time and so totally shattered her world. She subsequently went through 8 x chemo sessions, losing all hair etc. etc. then circa. 1 month ago had a double mastectomy with reconstruction at the same time.
Two weeks ago she was called in and went in expecting the worst, only to be told she never actually had cancer at all!! They had misdiagnosed. Suffice to say her life has now been shattered again, as she is just a mess with emotions, anxiety etc.
Like I said if she had have gone for a second opinion who knows what may have been.
Best of luck to your friend and all those around them.
Adam.
Absolutely staggered at that Adam.Originally Posted by Foxyadam
Good luck everybody. Have a good one.
Yep we all are.
Of course the trust were very quick to ask her to sign this and that, but she was in such shock she just walked out. Next day I believe the trust's CEO came to her house along with various family liaison people.
She is so torn as to what to do. Ultimately someone failed, BUT IMO the system has failed. Surely there should be back stops in place etc to ensure this kind of thing doesn't happen????
Adam.
That's quite shocking. In my daughter's case there were two biopsies of the samples, initially by the hospital that carried out the operation and again afterwards at GOSH before chemotherapy and RT commenced, to determine the course of treatment.
She was diagnosed on a Wednesday and Thursday went in for blood tests etc I believe to determine which drugs to use, but because of the supposed speed that Triple Negative spreads and the limited options available they started her on chemo within approx 10 days. Then it was 4 x Docetaxal and Fec. One was for tissue I think and one for bones.
I know from initial "diagnosis" they said nowadays BC is so much more treatable. My mum had it Feb 2010 and only had Radiotherapy. Her Oncologist said to her "no one wants Cancer, BUT for women BC is the one to get" I know it sounds a flippant comment, but they seem to be beating this truly horrendous illness.
:-(
Sorry about your loved one.
I was diagnosed with a Brain tumour at the end of August 2016. Thankfully it was in an accessible area (right front just under the skull) and not buried deep within the brain.We went through Bupa as I have the facility through work and saw a Neurosurgeon at the National Hospital for Neurology and Neurosurgery, more commonly known as Queens Square. He advised that looking at the MRI scans, it looks like a grade II Oligodendroglioma and the best course of action would be surgery to remove the bugger and hopefully a decent margin of tissue around it. He said hopefully after surgery, I would be able to go back to a normal life...I had an awake craniotomy a few weeks later and then waited for the Histo pathology results. got a call back to discuss the results and was told it was actually a grade III Anaplastic Astrocytoma and I would require Radio therapy and Chemo therapy in tablet form...He then referred me to an Oncologist...
My wife was with me and it seemed that our whole world just fell apart there and then especially since we had been trying for a baby...After what we had been told previously, I was now being told I had a potentially deadly form of brain cancer...The worse type of brain tumour is a grade IV Glioblastoma for which the prognosis is usually 12-18 months...My prognosis is around 5 years give or take depending on a host of factors...I finished radio therapy in January of this year and began chemo therapy in February for 12 months...5 days each month so 60 tablets in total over the course of a year...
The point of my post is that at the time it is very shocking and nothing can prepare you for it. We went home and let it sink in and then when we next saw the Neurosurgeon for a checkup, we had a long list of questions for him with the philosophy of expect the worst but hope for the best. My brother in law is an Orthopedic surgeon and also gave us some suggestions. Unfortunately only 5% of people in my situation live beyond 5 years and I have been told that even with surgery, radiotherapy and Chemo, it will definitely come back and could potentially come back as a more deadly Glioblastoma.
Definitely speak to Macmillan. They are very helpful. A lot of hospitals have Macmillan Centers. They are worth popping into for reading material and just to chat to someone and have a cup of tea/coffee. Another piece of advice is for her to talk about it as much as she can and not keep it all in...I saw a counsellor (again through Bupa) and it really helped me...
Oh and another piece of advice. Do not google anything. Its not worth it and will put her in a bad state mentally
My prayers are with her and her family. Best wishes for her journey ahead.
Please do get in touch (As quite a number of fine people on this forum have) if you want to talk about it...
Last edited by Watchfreek; 23rd June 2017 at 16:38.
Thank you all for your comments and advice - I truly appreciate it. I'll reply to PMs now, but know that you've all been a great help.
Question everything and don't be afraid to ask for second opinions mistakes are made and it's worth asking the questions just in case, the thing that will get her through is friends and family keeping her spirits up. during consultations etc write things down or even better record on your phone because there is an awful lot to absorb in a 20 minute meeting especially given the shock etc due to circumstances it's easy to miss things and then rack your brain later to remember. Best of luck with it all thoughts are with her, it's shite but it is beatable.
a good friend of ours researched the Rick Simpson method (running from the cure) and supplemented her hospital treatment with it, now I'm sceptical about it but she's been all clear for 2 years now and to be honest if I was in that position I too would be willing to try anything, we tried it for my dad but sadly he was too far gone (2 weeks from diagnosis to death) and I will say it certainly eased the pain but also gave him a sense of fighting with everything he had because it was so against the grain for him. The video is worth a watch with a healthy dose of salt obviously but like I said if I was in that position I'd be trying anything and everything.
Ask lots of questions and ask for an explanation of all of the treatments and options, also ask about the prognosis and also if there is any recommended reading or research papers on what they recommend.
There is no such thing as dumb question, write questions down before you go. Also think about taking with you someone not as emotionally involved, who does not have to cope with the emotional side and can ask factual questions, also you can ask for time to think about their recommendations or treatment options and take notes too, really helps to read up about stuff. But beware of the internet it not always accurate.
I have been clear for 15 years and the treatments are much better now. Good luck, hope it all works out.
Macmillan offer support in many ways, both for the person that has been diagnosed and friends and family that may need someone to talk to.
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Another vote for Macmillan here, they've been great with my Dad.
There was a recent documentary on Channel 4 about a corrupt narcissistic consultant who had been referring patients to his private practice for unecessary surgery when they never had cancer; he also did botched operations for patients with cancer, where he failed to remove all of the tissue, which later proved fatal. On some patients he operated more than once.
He got away with it for years mainly through arrogance and moving around the system. Many of his victims felt that something wasn't right but he was insistent that he was the top consultant and none of them sought a second opinion. He was eventually caught and prosecuted.
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Just finished my radiotherapy and 12 months left on my hormone treatment. My second bout after a radical prostatectomy a year clear and then rising psa. PSMA scan revealed cancer in one of my pelvic lymph nodes. Current blood reading undetectable so all good as it can be so far.
Another vote for McMillan, fabulous people and as stated above always question things you are told by the medical staff until you are happy
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