What a week

[Pamelah5]

Tuesday I was expecting results to be told would be a delay results were being discussed on Thursday (yesterday) with the clinical team regarding the next steps. This morning had a phone call from Macmillan nurse to be told the tumour is still contained to the tail end of the Pancreas and that they want to do another scan 6 months time before deciding on which surgery, i was delighted to hear has not spread anywhere else, what I wasn’t wanting to hear they want to let things be for 6 months, there wasn’t any mention of a face - face not even a phone consultation with a consultant. asked a few questions to which was being emailed to consultant I also asked whether surgery delay had anything to do with Covid to which she didn’t answer.

Came off the phone feeling deflated to say the least, decided I needed to ask further questions, spoke to another Macmillan nurse , mentioned previous conversation that I need questions answering

also mentioned family members who had cancer to be told she would email consultant also to ask if I can have a phone consultation next week, in the meantime was told try not to worry!

This evening I received a phone call from the consultant spoke for 50 mins regarding tumour worries of parents, uncles also 2 of my brothers who had cancer she said she understood reasons for concern, she mentioned cancer is small at moment they like it to be a certain size plus it’s also dormant which isn’t going anywhere at moment reason they’re wanting to wait 6 months, still non the wiser whether it’s benign or malignant, they prefer cancers slightly larger however if it becomes active they can bring surgery forward, also to be told I’m not being forgotten. Consultant has given me her name phone number if I need to contact, she will be keeping in touch.

Best wishes to you all

Pamela xxx

[springcross]

Hi Pamela. On and on it goes! At least you know that it's contained and still small at the moment, although I understand you not being happy about having to wait another six months. It's really good that you have been able to have a long conversation with the consultant and have been given her details. I can only wish you all the best Pamela and I hope that things work out well for you, please keep in touch and let us know how you are. Take care. xx

[Pamelah5 in reply to springcross]

This morning would had gone better had a consultant phone not a Macmillan nurse, who on this occasion was a go between, she read the notes which was passed back to Lewisham hospital. Whenever I’ve had tests I’ve always gone back to see the consultant, still very much in the dark. Thank you Springcross I will xx

[springcross in reply to Pamelah5]

Yes I understand what you mean particularly given yours and your family's history. It's been such a stressful time for you. Thinking of you. xx

[Pippy25]

A lot to take on board for you I am sure and whilst you know it is contained at the moment, it must have felt unclear as to why they were saying to you about waiting another six months, so am glad you were able to have that further conversation this evening with the consultant and that you have a contact number too. Sending you my warm wishes, Take care x

[Pamelah5 in reply to Pippy25]

Hi Pippy25, because the tumour is still small they prefer to be wait til it’s 2cm’s before moving, or if I develop more symptoms they will remove sooner xx

[Pippy25 in reply to Pamelah5]

In the mean time you take care Pamelah and wishing you the best xx

[Neonkittie17]

Hi Pamela, this is frustrating and I know you’ll want to deal with this and move on, and you will, but and I wish this could be sorted for you sooner. I’m glad you spoke at length with the consultant and well done for chasing that up. xx

[Ruth12345]

Difficult times for you.

Glad you got to speak to consultant.

Thinking of you and wishing you all the very best.

[Pamelah5 in reply to Ruth12345]

Thank you Ruth12345

[Hidden]

🙄 mixed blessings there .. yes a problem but will be monitored but no urgency which is good but doesn’t help mind set .x

[Pamelah5 in reply to Hidden]

Hi J1707, tumour at moment is still small they prefer to wait til it’s little bigger, neuroendocrine tumours are different from others. She mention people automatically think Pancreatic cancer when they mention cancer in the pancreas but Neuroendocrine is rare and different xx

[Downtime]

Hi Pamela, I know it sounds hard just waiting 6 months when you know the tumour is there, buts it’s small and dormant and they have their reasons for not operating now. It might never become active. From similar experience I know how frustrating it is communicating with the various consultants and departments. They’re busy discussing the case and making clinical decisions but fail to actually tell the frightened anxious patient who is desperately waiting for news.

The consultant sounds nice though and it’s great that you have her number and the Macmillan nurse to contact if you feel somethings changed or you have a wobbly moment. You can relax for a bit, enjoy Christmas with the family. This time last year I was given a terminal diagnosis with a stage 3 melanoma but I’m still here and well and it looks as if I might be ok.

Best wishes , keep us posted

Liz xx

[springcross in reply to Downtime]

That's great Downtime. xx

[Pamelah5 in reply to Downtime]

Hi Liz, thank you for message. I was told because it is small at the moment they prefer it to be larger, 6 months was a guild they can and will bring forward if I suffer additional symptoms, such as extremely low blood sugar as this cancer is hormone related causes blood sugar levels drop to low. I wasn’t happy about them leaving for months before operating. Consultant knows my concerns, I will be having regular bloods taken.

Sad to hear Liz you have been through a lot yourself I am pleased they caught it in time and you are continuing to make full recovery.

Which is what I cannot understand with myself whilst it’s contained why not remove the tumour to be told they prefer size to be larger 2cm’s before doing distal Pancreatectomy.

Pamela xx

[Downtime in reply to Pamelah5]

I must say it doesn’t seem to make much sense. Might be worth asking why they prefer it to be bigger. If there’s a particular reason at least it’ll stop nagging at you. They’re obviously doing a good job monitoring you which you must be a comfort.

Thanks for your best wishes. I’m living life as if all is normal (Covid permitting) and hoping for the best. I live in the Channel Islands so we’re not in lockdown YET !

X

[Marionfromhappydays]

Great news that it is dormant , small and that they can operate x

So frustrating not to be able to speak to the consultant first, I bet there were so many questions you needed answering.

Any little concern get in contact with them ASAP.

It's hard they've asked you to wait, I guess there are times when we have to put our faith in the experts xx

Take care

[Pamelah5 in reply to Marionfromhappydays]

Hi Marionfromhappydays,

Given the nature and severity of the disease, I thought I would of had a call from consultant. when I was originally told results after CT scan consultant wanted to see me face-face at Lewisham.

I will be having another phone consultation with the consultant next week, will give me time to reflect on this past week to ask more questions xx

[Gilliancheche]

So sorry to hear that. I have recently been diagnosed with malignant melanoma. Scans show it has not spread to other organs so far. Am due lymph nodes biopsy and possibly further surgery. Living with this stuff hanging over you is hard but my consultant said it was important to Try to control the anxiety as that in itself lowers your body's immune system and ability to fight the cancer. I am trying some meditation and continuing with my yoga and trying to take each day as it comes. Hope you keep well x

[springcross in reply to Gilliancheche]

All the best for a positive outcome for you Gillian. xx

[Downtime in reply to Gilliancheche]

Sorry to hear that Gillian. I know exactly how you feel. This time last year I’d also had a good scan result . In February this year I had a wide excision and sentinel node biopsy and the results were good, so fingers crossed for you too if that proves necessary. They might do nothing just give you a check up every 3 months. It’s very difficult not to get anxious and panicky especially as you don’t ever feel as if they are moving things along very quickly.

Keep well x

[Pamelah5 in reply to Gilliancheche]

Hi Gilliancheche, thank you for your reply. Firstly I am very saddened to hear your news, sending you {hugs} and love for a continue full recovery, I am pleased it has not spread to other organs.

The last few weeks my life have been in turmoil not knows thinking the worse, thinking of my 3 sons also family this affected everyone close to me.

Stress levels running high with not knowing what results will I be given, tried not thinking the worse. Originally I was told they would have me in straight away do a distal pancreatectomy, there they would analyse to find whether benign or malignant, to be told now they want to wait till it’s grown little bigger.

It’s strange I’ve had Coeliac disease for last 3 years I’ve coped well, my diet is strict, recent months I haven’t been well with different symptoms the consultant is saying my coeliac she feels is problematic, to me she’s trying to pass how I’m feeling has nothing to do with tumour, when the tumour which is connected to the digestive system, this I didn’t know until Mr Swift previous consultant Colorectal surgeon explained which is why my Colon is not absorbing fluids with all the symptoms go hand in hand. I will write more notes to discuss further.

Very best wishes to you Gilliancheche xx

[Monkeysmum]

Oh that’s difficult isn’t it Pamelah, I’m sure you had set your mind up on the basis of at least I will know one way or another, and now you have been presented with a different outcome from either of the ones you were expecting.

There are some positives in there also though in terms of it being small and dormant, and hopefully once your mind has had a bit of time to process all of yesterday’s conversation, it will be easier to focus on these. At least you are in the situation of being in the system now and being actively monitored, although I appreciate you would rather not have the feeling of uncertainty for another 6 months. Sending a big hug. Xx

[Gnarli]

I have no words but would like you to know I'm thinking of you and sending healing wishes and hugs.