First meeting with an Oncologist

[rachelqt]

Hi

Im looking for a bit of advise please.

My Dad has his first appointment with an Oncologist this Thursday and for some reason im feeling very very nervous about it. I dont know what to expect or what these meetings entail. Im frightened that they will blurt out timescales!

My dad was diganoised with inoperable PC (5wks ago) and the tumor is wrapped around the artery. I asked the consultant if the cancer had spread and he said no. We have no idea about stages or grades. Wonder if we will be told at this meeting? He had a long spell in hospital (4wks) treating his jaundice and then he had a night of vomiting blood, which we have no idea where it came from, one doctor thinks it was old blood from his stomach. He is now at home for this last week, eating very small and feeling very tired. If he goes up the stairs he is done. Wonder if his fitness levels will affect if he has chemo or not? Wonder if his fittness levels is so poor after his spell in hospital?

Sorry for all the wonders! I would love to hear of any advise or experiences.

Thanks so much...Rachel xx

[louiepc]

Hi Rachel,

Great that your seeing the oncologist, and I am so pleased that your dad is finally home from hospital.

From my limited knowledge, grading is from 1-4 (1 being the best - more optimistic). Mum was 2 in August. They will want your Dad to be fairly strong, as the chemo really does knock you for six. Mum was put on Gemcetabine, she was on a fairly mild dose cos she was so frail and tiny. Even that small dose absolutely knocked her out for a few days. She was having one dose a week. She had a blood test on Fridays and if all was ok, the chemo on Mondays. This was meant to be for 7 weeks, then 1 week off, then another 7 weeks.

It may be slightly different for your Dad - depending on height/weight etc.

One useful thing I found out was take the anti sickness the night before chemo so that its in the system and hopefully no sickness or nausea will happen.

All I will say hunny - is enjoy every moment with your lovely dad - I hope and pray that he has a long time yet and that the chemo helps him, but as you know with my mum, things change so rapidly.

Big hugs and prayers.

xxx

[rachelqt]

Hello Louie,

Thanks for that, my nerves are getting the better of me now. Staying positive is a hard job! I think its the fact that were going to get the nitty gritty of Dads PC and I was hoping that his strength would have improved by now. Just wish Thursday was over and we get the go ahead for chemo.

Hope your coping as well as you can and that your Mum is comfortable...Im thinking of you at this difficult time and keeping you in my prayers

Rachel xxxx

[lynbo]

Hi Rachael

They can't blurt out timescales to you, they may ask you if you would like to ask questions, but, no-one knows what lies ahead, some people can take chemo/medication better than others?

Go with a notepad, as there maybe a lot to take in, I did, and I'm usually very together, but I'd worked myself up that much I was glad I'd written stuff down.

This is my opinion

Andy and I chose not to be told how long they thought he had.

This was because, I know, if they had of even given a rough estimate, we would have both been on countdown from that day, in fact, I'd have prob give up.

We kept positive, and upbeat, and battled on.

Everyone is different though, so it's up to you.

I'll be thinking of you Thursday

Much love

Xxxxx

[rachelqt]

Hi Lynne

Thanks for your advise. Yes I feel the same as yourself and Andy, knowing timescales is like a ticking time bomb, you do read how people are told they have so much time to live and then exceed that time! I am afraid that they will just go ahead and tell us even though we prefer not to know. So thanks for reassuring me.

A notepad is a great idea, I know from my previous experience with Dads consultant and different nurses that the information has went right over our heads.

Lynne I think you are a wonderful person supporting people on this forum. I have read some of your posts and you have come through so much! Andy would be so proud!

Take care..Love Rachel xx

[lynbo]

Hi Rachael

Thank you so much for the lovely comment, I visit this website to try and pass on some help in any way possible, it's amazing what I know now - but, I'm glad I didn't know as much when Andy and I were living through it.

I have been a microbiologist all my working life, which means concentration and attention to detail, this all went out the window when Andy was diagnosed, and writing everything down was a great way if staying on top if things.

Be assured that the oncologist cannot just tell you things you don't want to hear.

Andy's knee jerk reaction was to ask 'how long' but the first consultant we saw did not tell us, he said if you want to know at a later stage - fine.

We didn't.

It would have been our 3rd wedding anniversary on October 25th.

I will do everything I can to help with early diagnosis.

Striving for survival.

Hope it all goes well Thursday, and I'll be looking on here for your updates.

Love

Lynne xxx

[PCUK Nurse Jeni]

Hi Rachael,

The first appointment with the oncologist is to take a medical history from your dad, and to go over how all this started (as in the PC). They will ask your dad how much he knows or has been told about the disease. They will then examine your dad, and check his latest blood tests to ensure the jaundice is settling. If he has had a CT scan, they will look at these, and ensure they have all the details to hand. Your dad will have been discussed at the multi-disciplinary team meeting, and a plan for his care written or recorded in the notes. However, the oncologist will need to check this and refresh their memory, as they will not remember verbatim every patient who has been discussed.

They will then ask about any symptoms from the cancer, and provide any relevant treatment for these ie: nausea pills for nausea etc...

Finally, they will discuss treatment options, and give some written information. This means you will not have to remember details, as you will have it in a document. Your dad may need to have some up to date blood tests, ready for chemo. If he is fit enough for chemo, he may even be given a provisional date to start his course.

He will not be confronted with facts about prognosis unless he specifically asks for them. That said, the doctors will focus on your dad's wishes, rather than the relatives, as that is what they are required to do. Your dad's prognosis can be discussed in his absence if he gives permission, but not without it. They will go through the grades of the cancer with you, but best to have some questions to hand, as not everyone wants to know these details. It is good for your dad to eat little and often. This is very common for pancreatic patients, as they feel full quickly. Plenty of snacks throughout the day is a good way to keep the calories up. Also, give him what he fancies. His fitness levels will affect whether he has chemo or not.The oncologist will make that decision when they see your dad. It may be that he needs some time to sort out symptoms before he starts.

Your dad will be given a period of time to go away and read the information, to decide how he wants to proceed. Usually, this is a week, but it can be shorter, depending on clinic space. You will be able to ask any further questions you might have at the follow up appointment.

Please email me at the support@ email address if you require further help or information,

KR,

Jeni.

[lynbo]

Hi

I really do hope that the sequence of events is how Jeni describes, because in our experience, it was very different.

I suppose it depends on which hospital you are lucky or unlucky enough to be referred to.

That is my reason for my concern for you keeping a log of questions and answers

Love

Lynne xx

[PCUK Nurse Jeni]

Agreed Lynne -this is how it should happen.

Jeni.

[rachelqt]

Hi Jeni,

I really appreciate your reply and your information has not only put my mind at rest but my mum and dads too!

Thank you. Rachel x

[rachelqt]

Hi Lynne,

I will take a notepad just incase, I have a few questions jotted down what we would like to ask tomorrow. With a bit of luck I hope it goes like Jeni says.

Im sure the 25th will be a emotional day for you. I lost my partner 11yrs ago to cystic fibrosis, although I was quite young (22yrs), I have an understanding of how hard it can be. As im sure you do, hang on to those lovely memories of Andy!

Take care..Rachel x

[lynbo]

Thinking of you tomorrow Rachel

Xxxx

[rachelqt]

Hi

The meeting today went really well and im now feeling quite positive. The oncologist was so lovely and had a great manner about him, unlike some of the doctors that we have been approached by.

It did go mostly how Jeni had decribed. The oncologist looked into dads medical history, and talked about when he started to feel unwell, when he was working up too and what sort of symptoms he was having, also does he have any pain (thankfully he doesnt). He then got examined and weighted by the oncologist and nurse. He has lost 3 stone in total.

He explained again that dads tumor was inoperable but he was very pleased with his health and fitness (the fact that dad can get up, washed, dressed and potter about the house was good!) Funny enough just yesterday, dad decided to take his work van out for a small spin! He explained that the tumor had not spread to other organs or lymphs but it was advanced within the pancreas. He explained about Chemo and the side effects. He also told us that Chemo was a good option for him and he hoped he would accecpt. Which he does! He also told us without us asking that the chemo would give dad an average of 6-12months. He said this was an average, everybody is individual and dad could be above average. Thankgod for someone who looks towards a positive!!

The Chemo which dad is having is Gemcitabine. He will start on the 10th of November providing his blood and liver tests, which he had today, comes back ok. Dad is still concerned he is still jaundices. He has 1 session for 3 weeks and 1 week off. The oncologist said we should know after 3 months of Chemo how it is going. We were sent home with details of Gemcitabine and the side effects.

So now all I can do is pray and be positive that dad will take to the chemo and it helps shrink and pro-long his life for more than the average!

Take care... Rachel xx

[louiepc]

Ah Rachael

I'm so pleased that the consultant is being very positive. Glad your Dad is feeling a lot better. Great news that it's not spread at all. You are doing the best thing by keeping and thinking positive.

Everyone is different with chemo, some people get extremely tired (my mum), others sick, some it doesn't seem to affect. Make the most of every day with your lovely dad, make special memories, and I really hope and pray that he manages to get a good period of time with you after chemo has finished.

love and prayers

louie xxxx

[laura]

hello rachael,, glad that you feel happier now that you have taken "another step" bri is on gemcap which is an infusion of gemcitabine for 3 wks out of 4, together with capecitine tabs also for 3 wks out of 4, he hasn't experienced too many side effects, takes domperidone as anti nausea, never vomitted,food fancying really varies eats well most of time, has what he wants when he feels like it usually, we use anything between 8 to 12 creon a day, can't od them,this has helped maintain weight after initial loss of 4 stone.

bri also was very jaundiced and took some time to go, had two differant stents in the begining, but ok now for 16 months. he feels very tired at times, worse after chemo, in bed now, as chemo today, trying to avoid his shivers/sweats, constant paracetamol seems to help this, very much individuaal, trial and error,

do you and your family not have a mcmillan nurse assigned to you, you can contact them yourself and they should visit you, they will be so supportive, help you with all sorts including pain issues, they are their for the whole family, i don't see them mentioned very often on here!ours keeps in touch by fone and fortnightly visits, perhaps it differs in areas! hope some of this babble will be useful, feel free to ask, we'll all try to help from our own experiences, so many people so many variations. take care xx

[rachelqt]

Hello Laura,

Im very thankful for your babble! To be honest I really dont know what I would do without this Forum. I feel i have been on here a lifetime yet its only 6/7 wks.

We are at the very beginning of our Chemotherapy journey, I just keep telling myself that this is our lifeline, its our bit of hope! That keeps us going. I know I will have so many questions and its wonderful to know that people like yourself are going through or have went through the same experience. I have read in so many posts about Creon but have no idea what its for?? Do most pc patients take it? As far as I know my dad is just on 2 types of anti sickness, which work well. He had a metal stent put in 2wks ago and also seems to be working well so far. Like your Bri the jaundice is taking its time to clear. From what I read, Bri's Chemo seems to have worked well so far for him?

The macmillan nurses are just fantastic! They really lifted dads spirts from the minute he was diagnosed. Sad thing about my dad, this cancer seems to have taken part of his soul at the minute. He just seems to be thinking all time and not opening up. I know everyone deals with this differently but I am so grateful that they are there to support him. We now have a lovely macmillam nurse who called to the house to last Thursay and is going to pop in now and again!

Thanks for your support..take care...Rachel

[louiepc]

Hi Rachael

Creon is used to help the food pass through the body better - I think it is meant to take the place of what the pancreas does. Mum has it with every meal, and depending on the amount of food that she eats - either a snack or a main meal, she has different doses. It helps making things more solid and not so runny.

I know my mum, who is normally a very private person, has found it very hard to open up, in fact it is only this last week or so, since we had the bad news that she has opened up more, and told us things that we needed to know. Normally we have just chatted and carried on.

One thing I did notice with mum when she was on the chemo, was how incredibly tired she got, and also the mood swings, she would snap at a moments notice and say things that she normally wouldn't even dream of saying out loud.

I know what you mean about this forum being a life line - I honestly don't think I could have coped these last few months, without the lovely people who are on here. Everyone is either going through or sadly have gone through what we are going through now, yet they are always upbeat and positive and it really is great having cyber friends who know exactly what you going through. Whether to have a rant, cry or laugh everyone on here is absolutely brilliant.

louie xxx

[AnneD]

Hello Rachel and Laura,

Just a little note about Creon.

The pancreas produces enzymes which pass into the intestine to digest your food.

Creon is a mixture of enzymes which can be taken to increase the levels of enzymes in the gut when the pancreas isn't working properly.

Your food can then be digested and pass into the blood.

Creon must be taken with meals so that it mixes with the food in the intestine.

It should help prevent steatorrhoea and malnutrition.

Anne

[laura]

hi rachael,, bri takes creon 25000, 300mg, his dosage is 2 with breakfast, which is cereal and fresh fruit, u can eat fresh fruit on its own without creon, he takes one capsule after 2 or 3 mouthfuls and 2nd one before he finishes, the idea is that the tiny granuals spread over the food to aid digestion otherwise, i understand, the food goes through the system without any goodness being absorbed, one or two with sandwich etc one with cake or biscuit, two or three with main meal, beef is one of the hardest to digest so would always take three you will find your own level.

Bri was 18st before diagnosis, dropped 4 stone in as many weeks, is now stable at 16stone, he went throu a stage of fancying cheese and pickles and trifle [ not preggers either!!] off that now, had spag bol tonight but at lunch time had an ensure plus, luckily he doesn't mind them, i try to do whatever he fancies,sometimes he leaves it to me as he can't always make a decision?? chemo brain they say at the hosp, but he also has m.c.i. [ mild cognitive impairment] this is pre chemo,so he /we do struggle sometimes, but with my memory not so sharp we laugh with/at each other!

Yes rachael we have had good results from chemo, had a shrinkage after 12 wks, 2nd smaller one after next 12 wks, now static with no spread, i realize how very lucky we are.Although still inoperable, life is good for us on the whole, we just have a new "norm" hope this may help, and that soon you will reach a steadier level, regards to u both laura xx

[PCUK Nurse Jeni]

Hi Rachel

Laura, Louie and Anne have already given you lots of good information about Creon. But I thought it might be helpful for you to know that we have some information about the use of pancreatic enzyme supplements (such as creon) on our website http://www.pancreaticcancer.org.uk/information-and-support/living-with-pancreatic-cancer/diet, and some specific information about the use of creon http://www.pancreaticcancer.org.uk/information-and-support/living-with-pancreatic-cancer/living-with-pancreatic-cancer-faqs/what-is-creon

You may like to ask your Dad's specialist nurse about pancreatic enzyme supplements and whehter your Dad might benefit from taking them.

Best wishes,

Anna

[rachelqt]

Thanks so much everyone for the advise, im going to look into the Creon. Im sure at some stage it will be needed. So far dads weight seems stable.

Laura im glad Bri is doing well and long may it continue.

Rachel x