mum diagnosed third sibling with pancreatic cancer

[dkm jack]

Hi, My mum was diagnosed on 14/05/10 We she had lost 4 stone was in more or less constant pain, and her blood sugars were sky high.

By the time we got the diagnosis she was so weak from needing insulin, (which her doctor would not prescribe) that she had to be taken into the hospital by wheelchair, and kept falling asleep throughout the appointment.

Just over a month later, she has gained a stone in weight. Due I think to Creons helping absorb the food, and stopping diaorrhea , and having insulin.

My mum is the third in her family to have this terrible disease, but we still do not know what to expect as her younger sister died twenty years ago, after fighting for around two years, but She had had her pancreas removed completely, so not sure whether it would be the same? She was 52 with a newborn grandchild. Then my uncle (who we didn't see too often) lost loads of weight, but died from a heart attack, only finding advanced pancreatic cancer during the autopsy.(he was 57).

My mum is 75, so we are grateful for the extra time she has had, but can anyone tell us what to expect, as the doctors are being a bit cagey at present,(I suppose they can't say too much as the threat of being sued if they get it wrong is always there).

Mum has not had jaundice (yet), but she does have pain, and currently takes 30mg morphine twice a day, plus top up when needed,20000 creons twice daily and insulin (which is still being adjusted). She is being brave, but I know she is really scared. She does not want treatment, other than palliative care, and at present is not strong enough anyway. We have an appointment with the oncologist on Tuesday to discuss this further.

The tumor is apparently only the size of a 50pence, piece, though the surgeon said there could be more that can't be seen.

Can anyone advice what to expect?

I have three siblings, and we all have children. We have been advised to be tested, but at the moment we can only worry about the present, and are not sure we want to know whether we are to inherit this unwelcome gift.

[Juliana]

Hi Jack(?),

Unbelievable the dr's let your Mum go so long without investigating it further, I'm so pleased to hear she is on the up and gaining weight and hopefully strength. The Creon she takes should be with all snacks and meals, not just twice a day - take them at the start of the meal and if her appetite is good and she has 'seconds' take some more.

As to what to expect, that is a difficult one. It affects everyone in similar yet different ways, and of course age plays a big factor too. With the tumor being small, I guess it's all down to the 'position' - if it's at the head of the pancreas it can block the bile ducts and cause jaundice. I don't know much on the symptoms of it being in the tail I'm afraid.

I have heard of the more elderly patients having the operation to remove the tumor and recovering pretty well, but your Mum would need to regain weight and strength before this is entertained plus her tumor must be contained and not have spread elsewhere.

If she does not want chemo or radiotherapy, then I guess it's palliative care and/or alternative forms of treatment (some people opt for total diet change, high vitamin c dose injections, gerson, budwig etc etc - but some regimes are near impossible and make chemo look like a walk in the park). I guess it depends what your Mum wants for herself.

She may be offered CT/MRI to see if the cancer has spread to other organs.

She will probably have various blood tests done, including a CA19-9 (cancer marker) test - however the results are not always reliable.

I had most of my pancreas removed, had chemo and radiotherapy but it hasn't stopped/cured the cancer. There are no family members with pancreatic cancer, but I still met with a genetic Dr. for information as I have 3 young children and worried for their future. Because there was no other instance of pancreatic cancer, I was told it was highly unlikely this was 'hereditory', however if my children wished to be checked when they were older - they could.

With 3 members of the family having suffered with pancreatic cancer that you know of, I would look into testing as the ONLY chance you have with this disease is to 'prevent' it or catch it in the earliest instance. I know it's not what you want to hear, especially having children to think of, but the more you learn the better chance you have. (maybe try investigating by doing a family tree - a health related one)

As for pain relief, if your Mums pain is mostly in the back she may be eligiable for a spinal block, it won't interfere with feeling in the legs and function but may help relieve the pain. Ask your consultant about it next time.

If by 'what to expect' you want to know roughly how long your Mum has got to live, that is almost impossible to gauge but in most untreated cases it can be less than 2yrs. Unfortunately even with treatment it can be less than 2yrs....some are lucky and make it to 5yrs, and those who pass 5yrs and get given the all clear have truly experienced a miracle.

Are you in the UK or US?

If you get the chance, keep us updated - we will try and answer any questions as best as we can, or just be here for you to talk to.

Kind regards,

Juliana

[volmod]

Dear dkm jack : Very sorry to hear about your Mum and the circumstances that bring you here. As said, Juliana’s advice is extremely good and would be hard to improve on.

One thing you might want to consider, though, is whether you/she would find it helpful to have contact with someone with similar experience/of a similar age. If so, get in touch with us via the support address support@pancreaticcancer.org.uk and we’ll do our best. Will be thinking of you and your Mum tomorrow. Regards, Vee

[dkm jack]

Hi, Sorry for the confusion, my name is Jackie, and I live just outside London in the UK.

Thanks so much to Juliana for all the information, and I will look into as many options as possible, but I think my mum has accepted her lot and does not want to be pulled about too much, (her words).

The consultant said that the tumor was in the head of the pancreas, and that It had not (as far as he could see) spread yet. He also said that it was probably operable, but that my mum was not a great candidate, though I believe he may change his opinion when we see him tomorrow.

I will go to my doctor eventually, but at the moment caring for my mum takes up much of my spare time, and I am not sure I could deal with the emotional implications of having tests, or of letting my mum feel any more guilty than she already does,She knows she cannot help her genes, but I know she is really worried about us and all our offspring.

The last couple of days have been quite bad, as she has had a lot of pain, been unable to eat much, and keeps having hypos. Although she is getting help now, there seem to be so many different things to deal with, that you never know what each days going to throw at you.

As for the family tree, my mums father died when he was 60 pf what we thought was colon cancer, but that was 45 years ago, so I'm not sure how exact that was. She also had an older brother who had cerebral palsy and learning difficulties, and again he died at 60, without a real diagnosis as my nan nursed him at home, but again he wasted away really. On a positive note, my nan lived to 100, and there are two more siblings aged 65 and 70 still well (fingers crossed).

I will speak to everyone about having blood tests (or whatever is needed), to try to help others in future, as there are many cousins etc who will also want to be involved, but not just now.

Juliana, you are an inspiration, I have read some of your posts and you are a real fighter.

I will post further when I know more.

Thanks again Jackie

[dkm jack]

HI, again,

Sorry I forgot to say that mum had another CT scan a week ago to check on the size of the tumor. Results tomorrow.

Also Penny asked what type of cancer, I will ask if they know.

My mum loves life, and even today I took her for a drive to have lunch with a friend. We only stayed for an hour, but she just wants as normal a life as possible, for as long as she is able.

My mum has had an under active thyroid since her early forties, Arthritis since the age of ten, and is allergic to at least two types of Anti-biotic, and Ibuprofen. Having said this she has (until now) kept fit and healthy, but she would be reluctant to undergo any operation or chemo, as she feels her track record with drugs is not great.

Sorry for going on, I wanted to explain that she wasn't just giving up.

Regards

Jackie

[dkm jack]

Hi, Jackie again,

Not great news from the Consultant today. Although the tumor has not grown or spread to other organs, He is not offering any treatment. other than pain relief, as he feels that mum is still not strong enough to tolerate any form of treatment.We do have an appointment for six weeks time, but then mum asked for a time scale (which I did not think she would), and we were told probably between three and four months, so it looks like it may be support from the hospice.

The cancer is not the rarer form.

I will keep in touch,

Regards Jackie

[Juliana]

Hi Jackie,

Thanks for taking the time to reply again with all the info.

Your mum has had some health issues to deal with all her life, but as you said - has been fit and healthy more or less until now. I can understand her not wanting to be pulled about, it's no fun let me tell you - but apparently it's the only way to beat this thing (and even that is not guaranteed).

You are very sensitive to how your Mum will react with regards the testing, and yes....maybe it's something you keep on the back burner for another time.

I wish I had some inspirational words to give you....but the 'fight' is quite tiring, and today is not one of my best days....sorry. I just hope she gets the diabetes under control, and any pain should be sorted by the palliative care team (my team are great - and fast acting.....they are well worth having, so don't be scared of the word 'palliative'!).

Kind regards,

Juliana

[dkm jack]

Hi, All,

I haven't posted on here for some time, but thought I would let you know mum died on 7th November with my sister, my dad, and myself with her. The end was fairly peaceful and she was at home,though she had previously spent 3 three weeks in our local Hospice, which really restored our faith in the medical profession. Also the care we received back at home was great too.

As I have said before, mum was at least the third sibling to die from pc. So along with the grief I know that her younger sister, and myself and three siblings are convinced that there must be a genetic link, and are not sure yet whether to look into some sort of testing, as the treatment, and often also outcome are not things we are yet ready to face.

My Mum was really strong, and tried to prepare for her death. Including writing each of us a letter, which I currently read and re-read. So Juliana, Please write through your tears, as we were lucky enough to have our mum for many years (As hopefully your children will too) seeing mums handwriting, and knowing how she felt about each of us keeps her alive, and real, which I know will be even more important to your children, if the unthinkable does happen. Though I hope you will buck the trend, and be one of the long term survivors.

Thinking of everyone who is fighting, or who has lost, or is caring for someone with this rotten cancer,

Jackie

[Nardobd]

Jackie I'm so sorry to hear that your Mum has passed away. My sincere condolences to you and all the family.

It's really worthwhile knowing that her letter meant so much to you - what a comfort it must be. I'm pleased to hear that she had some great care too - it's no more than she deserved.

You're very much in my thoughts and don't forget we're still here - if you need to vent, scream or just have somewhere to tell us what's happening with you and the family, don't hesitate!

I'm sending a prayer up for you at this very tough time.

Love

Nicki x

[PCUK Nurse Jeni]

Hi Jackie,

I have been reading your posts and think it would be really worthwhile in you getting in touch with the EUROPAC study. They are looking at incidences of familial /heredity Pancreatic Cancer, and with your family history, they would be very interested.

I have posted the link below.

http://www.europac-org.eu/

Contact:

Miss Sara Harrison

EUROPAC Study Co-ordinator

Divison of Surgery and Oncology

University of Liverpool

5th Floor UCD Building

Royal Liverpool University Hospital

Daulby Street

Liverpool

L69 3GA

UK

Tel: +44 (0) 151 706 4168

Fax: +44 (0) 151 706 5826

Email: europac@liverpool.ac.uk

KR,

Jeni.