diagnosis

Hi Jaybeth,

So sorry to hear your story, but very glad you decided to come to this site, as I hope those of us who are on similar journeys will be able to offer you  some comfort through sharing.

I was horrified to hear how your nurse handled the situation! I certainly haven’t experienced anything like that during my journey, but I’ve certainly found it helped me along the way to only focus on the immediate steps that I and the medical team are taking rather than the “what happens next, then next”, as each stage is distinct and dependent on individual circumstances.

If on Monday you are given a cancer diagnosis, you will hopefully also start to see a plan being put in place, and from my own experience things happened pretty quickly from there. Although still scary, for me it was much better than the period of not knowing. 

I was diagnosed in mid November 2020, with a tumour on each ovary, one 10cm and the other 3cm, and a very raised CA125 marker. You didn’t say what your symptoms were, but mine were frequent bloating, and cramping in the pelvic area.

In late December I had surgery, and my surgeon was confident she’d been able to remove all the cancer that was visible. I found the recovery period tough but do-able (I’m 59). Since then I’ve begun chemo to complete the treatment, and had my 2nd cycle last week. I feel very blessed not to have experienced any delays in getting my treatment despite the ongoing pandemic, and indications from my blood markers are good so far, which has certainly helped me put the tough times into perspective.

I’m generally a very positive person and, although it’s been a challenge to feel that way at times, I really believe that positivity and keeping as physically and nutritionally well as I was able to along the way, have been my key strengths in this fight.

I wish you all the best for your appointment on Monday - and don’t worry if you don’t feel like writing everything down. You should be offered (or could ask for) a follow up call once you’ve had a chance to digest the diagnosis and the plan, and come up with some questions. The Macmillan nurses and booklets are also a great source of information.

Be thinking of you,

Bx

Hi and thanks for your reply. I agree its good to be positive, maybe I'll toughen up and lose the fear of surgery!

When I read your story, I guess you are now on the way to recovery after your surgery, I hope so.  I hope the side effects of chemo aren't too bad, guess thats where your positive attitude wins. Do you have family/ friends around for support?

Today I received a letter with, what seems to be, a pre surgery questionaire and yet another appointment for Tuesday.  I guess they have the ct results which I wish I had.  Seems a bit 'back to front' in that it is important that the patient knows what the plans are, before they seem to make decisions.

My symptoms, worsening, are bloating especially when I eat, I pee 5 or 6 times during the night.  I get leg cramps and heavy feeling, sometimes pain, in my lower abdoman.  I feel reasonably, physically, well, but scared.

My diet is good, before lockdown I could do a 10 mile walk and play badminton 5 hours per week, I was fit, not sure now.  The first doctor I complained to, last year, said there was nothing wrong and I should just slow down and rest more!  she meant 'act my age' I think.

I spoke to a macmillan nurse, she was very helpful and supportive, it gives me strength to know there is this website and nurses who are willing to offer help.

I hope your results continue to be good and you win the battle for good health,

Best wishes

Jaybeth

Hi Jaybeth, thanks for your good wishes, and don’t worry - it’s OK to be scared of the surgery....I’m sure we all were/are if we’re honest, but for me it was all about balancing that fear against the fear of what not having the surgery would mean for me.

I won’t pretend my surgery and recovery were an easy part of the journey, but it was do-able and like you, I’ve generally been fit, active and diet conscious, and truly believe this helped my recovery enormously. Now, as I go through chemo (currently cycle 2), I at least feel I’m moving forward rather than standing still. Side effects haven’t been too bad so far, and knowing which days are likely to be my worst at the start of the cycle has helped me plan around them and not punish my body so much.

Support from family and close friends is great - particularly if you’re  needing reassurance that things “will be ok”. Sometimes though, when you just need someone to download all the “what nexts” and “what ifs” to, I’ve found that others less close personally and emotionally are better able to offer support.

Hope your sessions this week provide some answers and a plan for you - be thinking of you,

Bx

Hi Jaybeth what a horrible experience for you. It really doesn’t sound as though the nurse approached you very well at all!  
from ultrasounds and CT/MRI they can only say that it could be cancer, they won’t be able to definitely confirm until they do a biopsy. 

I remember when I finally got diagnosed after 2 years of symptoms , the first Dr I saw said cancer, then a consultant said probably nothing and then the gynae cancer consultant  came to see me with the Macmillan nurse. It was all really confusing and frightening but they told me that I would need a biopsy to confirm. As it turned out, my biopsy was inconclusive so they decided to operate rather than do chemo first because they have to know what type of cancer it is in order to offer the right chemo. Even the night before my surgery the surgeon said that he was really puzzled because my 20cm tumour had appeared within 5 months and he was still saying it might not be cancer.

I guess what I’m saying is, it can be really confusing so try to take one day at a time we are here to support each other x

Thanks Fizz for the support and info, You are right and I am learning to take one day at a time instead of wanting results yesterday.

The CT result was better than expected, complex mass but probably not spread to other organs, nothing conclusive. They don't do a biopsy because this may spread the cancer if they puncture the mass.  My only option is surgery and during that, they will do a lab test to confirm cancer and seemingly have a good look around.  That will tell them the extent of surgery needed.  Doesn't give me a good feeling but at least I know where I am and the consultant on the phone was really clear and helpful.

My biggest problem now is no date for surgery or pre-op.  They have no high dependancy beds available because of covid patients.  They could not confirm it will happen this year which seems unbelievable.  Never have I needed the NHS so much. I will have to wait and hope for cancellation, there must be many who are in a worse position than me but I don't want this to get beyond help.

Sounds like you have your life back and I guess you had cancer.  I have a 10cm mass/tumour, its uncomfortable but not 20cm.  You must have had so many symptoms to deal with.

Each time I link in to this site, feels like a pang of relief that other people can understand my situation and chaos.

Jaybeth

Some positive news there, I do hope you get a date for surgery soon. Might there be an option to have the surgery at another hospital if the one you are under aren’t currently able to offer a date ?  I can’t imagine how stressful waiting for potentially life saving surgery must be. I was very lucky that I only waited a few weeks.  If I had one tip it would be to use the time to get your fitness up as much as you are able because that will be a massive help with your post op recovery. 

really hopi g you don’t have to wait too long xx

Hi thanks Fizz, I will take note of staying fit before surgery, for my age I was very fit before lockdown, feel I'm going downhill a bit.  Have got an appointment for a pre-op at the end of March which I think is probably the best I can expect.  I was told they have surgeons ready and waiting but no high dependancy beds so can't operate.

I expect April/May will be the earliest for surgery.  I wonder how quickly ovarian cancer can go from curable to incurable, guess I'm asking the impossible.

Thanks for your support

Jaybeth