New Diagnosis - it all takes so long?

Hi All,

Fist of all thank you to every one who reads this, its great to know (even though unfortunate) that there are people out there who are feeling the same as me.

The background; my mom, 51, never smoked, has a drink at Christmas and lives a pretty healthy and active life, was diagnosed with pancreatic cancer 5 weeks ago. She had suffered from pain accompanied by weight loss for about 3 months and was pushed from pillar to post with everyone convinced she had an ulcer or some other “stomach” problem. Then one weekend while waiting for yet another appointment to see another doctor the pain got so bad she decided to admit herself to hospital.

After doing lots of tests they found a mark on her liver. They did a CT scan and that’s when we got the devastating and unexpected news that she has pancreatic cancer. They sent her home and the whole nightmare began.

Since then they have told her that its inoperable and that its spread to her liver. Then a few days later they also told her that during the CT scan they spotted some ‘nodules’ on her lungs, which as the cancer has already spread, they are going to assume is also cancer.

They told us that they wanted to biopsy the tumor in the pancreas before they started treatment but I’m still confused as to why? They just say it’s the only way to be certain that it is cancer – well surely they wouldn’t tell us it was unless they were certain?

Now my mom has her first appointment with the oncologist on 28th May and she found out yesterday that she will have the biopsy done this coming Monday.

Is it normal that we have to wait so long – her appointment will be exactly 7 weeks after we found out and I’m assuming they won’t start treatment there and then? When I ask them why it takes so long, they say that this is normal and that the cancer has already been there a long time (she did use the words ‘very advanced cancer’) so a few weeks doesn’t make a difference anymore – is this true? They have said they will offer my mom chemo (Gemzar I think) to help with her symptoms and pain.

I’m so confused as to what we should do now, what to expect, what’s normal, where do we go from here?

They haven’t given us any idea of a prognosis; they said they can’t say until the treatment starts. But I live in the Netherlands so although I get back often I’m not with my mom all the time, (she has a lot of support with my dad and brother and sister), so for my own selfish reason I need to know!! Should I already take leave from work and go back to ‘live’ with my mom (I also have an 18 month old son) or should I try to carry on with my life and just visit her once a month, for example? If I read the facts on the internet then its only a matter of months, but there’s a big difference between 3 months and 9 months?

Also my mom is taking zomorph twice a day and oramorph inbetween when needed. She started on 20mg twice a day of the zomorph, she is now on 120mg twice a day! It seems that she needs the oramorph more and more so they increase the zomorph then she’s ok for a few days and then she needs the oramorph more and more again and so it goes on…… Is this a really big increase in 5 weeks, is this normal? Does this say anything about how bad/far it is? They have also started her on steroids recently because the pain she has indicates ‘swelling of the liver’. Again this scares the hell out of me – is this normal or is this a really bad sign?

I’m sorry for the random questions through my post but I would really appreciate any advice or experiences that may offer me some answers.

Many Thanks and good luck to everyone who is also going through this nightmare!

Lisa

Hi Lisa and I'm so sorry to hear about your Mom.

First of all, I'm no expert and most of what follows is from personal experience (my husband was diagnosed in January) and what I've found out since then but I'll try to answer your questions. You might also want to look at the other sections of this website which give more information and detail.

Pancreatic cancer has very vague symptoms in the early stages. Most people who are diagnosed have advanced cancer which is inoperable, either because it has spread to other parts of the body or the tumour involves major blood vessels. It seems a bit unfair, though, to 'assume' the nodules on your Mom's lungs are cancer and I think the doctors need to be asked to do whatever tests are necessary to make a definitive diagnosis. I'm assuming your Mom is in the UK and under the NHS. If so, then ask your Dad, Brother and Sister to push the doctors (you'll see from other posts that I've made a lot of waves at our local hospital and it has improved my husband's situation). Your Mom is also entitled to a second opinion and this shouldn't affect her care.

My husband also had to have a biopsy, but we were told that it isn't the only diagnostic tool. The CT Scan and other tests (again, see other parts of the site) will have given the doctors significant information as to your Mom's condition. A biopsy is used not only to confirm the diangosis but to determine what type of cancer is present. A positive biopsy may also open doors to clinical trials if your Mom wants to take part in them. My husband's biopsy actually didn't show any cancerous cells but he is responding to chemotherapy.

A biopsy can be carried out endoscopically (they put a camera down your throat with the necessary tools to take cells attached to it) and that is relatively painless. My husband had a little discomfort and a sore throat for a day or two and that's all.

Whilst they told us that a few days or weeks wouldn't make any difference, I still pushed for things to be done more quickly. It stands to reason that the sooner treatment is started the sooner the beneficial effects will be evident. Again, this may need a family member to 'make a fuss' but I'm sure you won't mind doing that!

My husband is on Gemzar (also known as Gemcitabine) and his tumour markers have dropped from over 800 to 50, which we're told is within the "normal range". That doesn't mean he no longer has cancer, just an indicator that the chemotherapy is doing it's job and may give him a little longer.

As to a prognosis, the doctors are very reluctant to give a timescale - mainly because each individual is different both in their mental attitude and physical reaction to the disease and chemo. Like you, I scared myself with the statistics but talking with medical personnel, they tell me that some people who have chemo live longer than those who are able to have an operation and some people who don't have any treatment live longer than those on chemo. Once the chemo starts they can look at the tumour markers and other indicators to get more of an idea, although they will need to give the chemo some time to take effect before they can properly ascertain the benefits. No one, though, can say what you need to do as regards work and/or visiting your Mom: you have to do whatever you (and your Mom) are comfortable with. Have you discussed it with her?

Pain is also subjective and I'm not a medical person, so I can't give you any input on that. Would it be possible for you to make an appointment with your own general practitioner or family doctor to discuss your concerns? I would say, though, that when my husband was admitted to hospital prior to his own diagnosis we were told he had "a huge liver". It turned out to be a swollen gall bladder caused by gall stones (which they haven't treated because it's not giving him a problem). I'm not saying that your Mom has the same but it might be worth asking the doctors some more questions as to the meaning of the pain.

My thoughts are with you and your family - it's so terribly hard isn't it? Do keep posting and let us know how your Mom is getting on.

Nicki

Dear Lisa

Very sorry to read your post about your poor Mom, she's so young to be facing all this, and you must be too.

Nicki has given you excellent advice. Your Mom's experience so far sounds quite similar to what happened to my Mum. Mum was also a very clean living person - fit and well, never smoked, never drank, stayed a trim 8.5 stone all her life, exercise regularly and was very careful with her diet. It took forever to get to the bottom of her problems too. Basically, after about 3-4 months of increasinly severe pain, during which she had various blood tests etc and was being treated for IBS, they finally got round to giving her a CT scan. Her pain was mostly in her back but also in her right side which spread round the front and downwards. The CT scan revealed a 2.5cm tumour on the tail of her pancreas, plus a couple of small spots on the liver, a nodule on her ovary and slightly swollen lymphs. She had a biopsy and from this combined with the scan information and a blood test specifically looking for pancreatic cancer markers (which you Mom may have had already?) they told us that she had inoperable advanced pancreatic cancer. They were clear that there was no hope of a cure but they said they could treat the symptoms, and for this they offered the same treatment as your Mom. It was nearly three months from the first scan to her starting the chemotherapy and we were told the same as you - no need to worry about the delay in treatment as the cancer had probably been there for some time.

She had a 6 month course of chemo. Although she had pretty bad side effects, she managed to get through 10 out of the 12 planned sessions. She did improve a bit at first and the pancreatic cancer marker blood test results got better and she had scans which revealed that there was no growth at all in any of her tumours, the last one of these being just after she had finished the chemo which was in November last year. She had a good month or so after this. Around the beginning of this year (about nine months after the initial diagnosis and a good 12 months since her first pain symptoms) she began to notice that her pain was getting worse again, and had also spread to her pelvic area. She had another scan and blood test, the scan revealed a very large mass in her pelvis which was causing a bowel blockage and she had to have emergency surgery to perform a colostomy and at the same time they said they saw tumours all over her abdomen and fused to the pelvic wall. Also her pancreatic marker tests were sky high. How we got from no change in November to massive spread of cancer in January, I'll never know.

She went downhill very rapidly after this and sadly passed away on April 19th - a year after her diagnosis.

I can't offer you any answers Lisa but I will be honest with you. When they find a tumour in the pancreas, the patient has a lot of pain and there are signs that there may be distant spread (ie to the lungs, liver), then the prognosis is not good at all as pancreatic cancer does tend to be very aggresive once it really gets going. There is a certain inevitability about this disease I'm afraid, and I think that this is why the medics tend to be a bit vague and non-commital. There is so much to take in and process and they really can't offer a great deal in the way of encouragement and so we all end up feeling very badly treated and why people like Nicki and others have to battle for every bit of help and information. I wish I could say something to help you - you did ask if you should come over to be with your mum sooner rather than later and I would say try and spend as much quality time with her as you can. She may do well for a good while on the chemo and in any case, I am sure she will appreciate your company and support. Although her pain relief dose does sound high, it may be the position of the tumour (near a nerve perhaps?) which could be causing the trouble rather than the size. Make sure that she watches her digestion and food intake and don't let her get constipated which is a very common problem with Morphine. Keep asking for help and advice at the hospital and make sure you chase up appointments and test results. Whatever you do, if your Mom is in any kind of uncontrolled pain, don't stop perstering until they do something to help and take your concerns very seriously.

My thoughts are with you at this awful time, try to be strong and brave and look after yourself as well.

Dear Nicki & chinup,

Thank you both for taking the time to answer my post!

Nicki – thanks for sharing your experience and for the tips, I will continue to make a nuisance of myself to make sure things get done as quickly and thoroughly as possible! And I will make sure I have my list of questions when we meet the oncologist in 2 weeks time. I’m glad your husband is reacting well to the treatment, keep us upto date.

Chinup – I’m so sorry to hear about your mom and so recently aswell, I really appreciate you sharing this with me, it must be very hard for you to think about everything your mom went through! Your mom sounds a lot like mine and how they arrived at her diagnosis is also very similar. Its frustrating to hear about the delay your mom also experienced before starting her treatment. It helps a lot to know that you are there and willing to offer support and advice!

I will update you next week when mom’s had the biopsy.

I’m thinking about you both!

Lisa

Hi Lisa

So very sorry to read about your mum. Lots of us on here will understand how you feeling right now. It's a huge shock and everything is so confusing, until you have enough information to make sense of it all.

You have had two excellent replies to your posting, from Chinup & Nicki. I can't really add anything else to help you, except to say I wish you the strength to cope with what is happening to you and your family.

My husband had the whipple operation to remove cancer of the pancreas, and he now has a spot on his liver. He's been through a major operation and has had chemotherapy and, at the moment, he is really well. He may not stay that way and the only way I can cope with this is to take one day at a time and try not to think too far ahead. Being strong and positive helps you make the most of every day you have with your loved one.

Take care of your mum, and yourself.

Best wishes

Ellie

x

Hi Ellie,

Thanks for your reply.

I'm glad to hear that your husband is feeling really well at the moment, i really hope it stays that way.

I think your advice is really true - the best to cope with this is to take one day at a time and try not to look too far ahead.

I'll be thinking about you and your husband!

Thanks a lot

Lisa