What do you wish you had known about DIAGNOSIS?

I was lucky in that I went from having a first symptom to surgery within 4 weeks. I know not everyone is that fortunate. However I did find it really hard to wait for the results. The diagnosis came around a week after testing but I could think of little else. Then there was the worry of whether it had already spread. 

There was then the waiting for the MDT to meet and decide on a treatment plan. When you are waiting time goes really slowly and you can feel like nothing is happening. Behind the scenes it probably is all go but for me it felt a time of limbo. 

Diagnosis is hard and you just want to know for sure and the uncertainty is hard. For me once I knew what I was dealing with and had an idea of what would happen and when, things felt a bit less overwhelming. 

Jane

Thank you Jane, this will be really useful to share in a blog bringing together experiences from members across the Community. 

It would be good to hear from members who have had a longer wait and how they dealt with it too. 

The only niggle I had during the whole process was not being warned about the length of time it could take. I was told after radiotherapy finished to start getting my life back to normal, so assumed my treatment was done and I booked some holidays only to be told 6 weeks later that I needed chemo. We had to cancel 2 holidays. I just wish I'd been told an approximate time frame from surgery to treatment ending if both radiotherapy and chemo are needed. If it turns out that both aren't needed then that's a bonus. 

H

Morning Helen.

After reading these posts it took my mind back to this time last year, when my partner was diagnosed with laryngeal cancer.

He was rushed into hospital, as it was clear something was very wrong, and initial tests quickly discovered a large tumour on his larynx that was obstructing his airway. An emergency tracheostomy was performed and we were told he would eventually have to undergo a total laryngectomy. We fully accepted all this but was never told the extent of the waiting that was to come. He spent the next two months in hospital with the trache in situ, unable to eat, drink or speak. During this time, that was stressful to the max, I imagined the cancer was running riot throughout his body and affecting every internal organ on its way. Although I asked many times, I was never given the full facts relating to the lengthy wait.

I knew he was on the waiting list but didn't know his surgeon had to work in tandem with a plastic surgeon; they both had to be available at the same time, and this only became apparent the day before surgery. So, we spent two months in limbo, which is a long time when full of anxiety, exhaustion and not knowing if his survival was even an option.

Happily he's still here, not mended but managing with an awful lot of help from myself and his therapists, and that's down to the wonderful people who saved his life with their magic. But if the full picture had been revealed much earlier, it would have saved so much unnecessary angst.

Gill xxx

I would have found it helpful to know that diagnosis is not a linear process. It's not so much step by step as a lot of things that are going to happen, sometimes really quickly and sometimes really slowly. It's helpful to know you may need to ask for your GP to receive a copy of all results and letters (not always automatic) and that having digital access to your GP records is useful. It's good to know how communication will happen - via app, phone or post or a mixture of all.

The NHS is amazing but in many places technology lags behind what we may be used to in other avenues of life/work e.g. fax and paper are common. 

I was really glad I did my homework relying heavily on the Macmillan website and community and other reputable sources. I don't regret being prepared! 

I wish I had known that discomfort in the rib area and tingling in the arm pits and discomfort, as well as low iron, folic acid and B12 was an early sign of cancer, and that if you have issues under the arm pit it is lymph node related so you should insist on a CT scan.  I feel that if I had known all this then I would have pressed the health care professionals that were clueless for a CT scan, instead they did not suspect cancer until my nipple slightly inverted and I could feel a mass underneath the skin of my breast, thank god I felt my breasts because you could not see a visible lump and had I not felt it and spoke to GP straight away it might not have been stage 3.

In terms of waiting times getting in for the initial check for cancer after the lump was found was super quick, literally next day, the wait for my diagnosis and the results was 2 weeks, would have been one but apparently the relevant team were all on training.  The wait for chemo I think was a bit longer, I am a very vocal and assertive person so I kept chasing the team and reminding them that I am the patient and I needed treatment asap, and I wanted a CT scan arranged to ensure it hadn't spread, and was vocal about the waiting times not being good enough.

My advise is also ask for as much information as you need, insist on meetings with the proposed surgeon, see what other research is out there, ask for referrals if you want one, reach out to other teams for a second opinion, challenge where you feel you need to, and choose the option that is right for you.  I was told there was one option for me, which was non skin sparing masectomy, followed by a years wait for diep flap reconstruction both by the NHS trust I was with but also the IBC network on Facebook, and was encouraged to take this option.  When I declined and said I did not want masectomy, I got referred to another trust who gave me four different options including a lumpectomy to just remove the tumour, an option with an implant, and an diep flap option, they offered masectomy followed by immediate reconstruction.  Following an ultrasound showing the tumour had shrunk to 13mm following chemo and biopsies showing no active cancer cells in the tumour from the biopsy sample, I decided to decline surgery at this time and I am now on Phesgo for the moment.  I made my decision based on all the information around the risks but also all of the options available to me.

Also, when you are not happy with the treatment or service, raise this, if we don't speak out then how do we expect things to change.  I spoke out about an NHS trust and how I was treated, I went to the BBC, 'I was too fat for NHS cancer surgery appointment' - patient - BBC News  I then went to the Health Ombudsman, I finally got invited to the trust for a meeting, told them how I felt and how they needed to improve for all patients, and they have taken action points away to change things plus I got an apology in person as well as in writing.  So well all need to work together to change the system when the standard of care is not good enough, regardless whether it is at pre diagnosis, diagnosis, treatment or after care.  

Hi R, fabulous post and interview with the BEEB, I couldn't agree more with everything you said, and being a little overweight myself, would jump on any references to it in meetings, as well as co-morbidities and general fitness, so they couldn't be used as excuses. Good luck and best wishes with your treatment.

Eddie xx 

Thanks Eddie, I hope you are ok your side?

 I had never been on TV before and being on with chemo head was a bit daunting, but I felt it was important because that particular trust told me if you're BMI is over a certain BMI criteria they won't even accept a referral to talk about reconstruction surgery, they also do this to smokers as well.  I feel that not only is it discriminatory, we all pay our taxes so why are being deprived of a service, for me if people are over the BMI criteria but want reconstruction then they should be signposted or supported to lose weight, or if smokers to stop smoking, rather than just being told no we aren't going to help you.  The irony was that they asked me how much I weight and I did not know at the time so told them how much I thought I weighed but I was actually under the BMI criteria because I had lost so much weight through chemo.  A lot of people don't complain because they don't want to make a fuss, and plus they believe we get the NHS free, and whilst for those that can't afford private treatment it is our best hope and it is good that it is there, and there are some fantastic staff, where it falls short unless we challenge things we can't hope to make a positive change.  

Hi Rosemarie, and thank you my friend, I'm doing ok, non curable, but treatable for over 3 1/2 years now, and currently enjoying our 8th holiday of the year at the Scilly's.

That was a wonderful thing you did appearing on TV, standing up for patients rights, and I hope the trust in question see now how unethical their protocols are/we're, they wouldn't use race or gender in such a way. I've never been on TV, but I do do speeches on prostate cancer, to between 40 and 200 people, which are nerve-wracking at first, but you get into it quickly and enjoy it, sort of, and knowing you're making just a little difference is all the motivation I needed, though not a patch on your amazing efforts my friend, I do hope the trust changes it's attitude from discrimative to support for those who follow.

I had over 15 years in healthcare, a lot in cancer/palliative care, so had a good idea how my treatment would go, so would question everything, and on the odd occasion I wasn't satisfied would contact PALS, but sadly, as you say many people just go along with their doctors, good or otherwise, unaware if their on the best path for them, I do believe good doctors/nurses are open to constructive criticism and want to be told of ways they can improve.

Eddie xx 

Hi Eddie, 

Sorry to hear about your diagnosis but glad that you are getting treatment to keep going and it seems like you have a positive attitude to try to enjoy what you have despite of your diagnosis, as well as sharing your experience with others to help them.  

I am of the same ethos, question everything.  I used to work in therapeutic services, investigations, and care quality, amongst other roles and my moto is usually to question everything.

I was hoping that HIFU, histrophy and resonance type treatments would be available to myself, but sadly they aren't used for breast cancer, I have heard murmurings about rife machines, and I know cellular scanners are in development so hopefully we will see progression in treatments and non invasive treatments in our lifetime.

I am sending positive thoughts and wishing you the best.

Rose