Help - Questions for first visit to the oncologist?

[Guest]

Hi All,

First an update for those who read my last post: Mom had her biopsy last week and although she has had the camera down twice before she said this one was horrible. She had a lot of pain during the 40 minutes it took but couldn't let them know because she was pretty out of it. Luckily it did only last 40 mins and despite being sore afterwards she felt suprisingly well the next day. The only thing the doctor could tell her afterwards was that he was able to take lots of samples and he also found some dead cells (??) and saw some fluid in (or maybe around) her pancreas?

Anyone heard of similar feedback after a biopsy?

Ok, the next step is that mom FINALLY (7 weeks after receiving the diagnosis) has her first appointment with the oncologist this week. I have to admit we are all pinning our hopes on finally getting some answers and some more information from him - hopefully we won't be disappointed?

I would really appreciate some advice on the sort of questions we should ask to get the best out of this appoitment.

My first thoughts are mainly about the kind of chemo mom will get and how that might affect her. But any tips on things to ask would be much appreciated.

I'm afraid that being new to all of this and the fear of actually hearing it said out loud might make us go blank and come out not knowing anymore than we did when we went in?

I'm going back home this week some I can go with my mom and dad to the appointment, to support them and to try and ask anything they forget.

Thanks in advance for your help.

Lisa

[Nardobd]

Hi Lisa

I'm sorry your Mom was in so much pain during the biopsy. Still, it's over now and, as you say the after-effects are relatively short-lived.

On my husband's last scan report, there was mention of an "infarct" (dead tissue) in his spleen and "free fluid" in his pelvis which, from your message I would assume is similar to your Mom. From my fumbling about on the Web to find out more, I understand that dead tissue or cells are caused by an interuption in the blood supply and, unless the tissue or cells are causing some problem, it's unlikely that the doctors will want to operate or carry out an invasive procedure. The "free fluid" mentioned in my husband's scan is likely to be caused by inflamation of his gall bladder due to gallstones which we know are present.

However, your Mom and family need to know for sure about the results of the biopsy and those issues will form part of your questions for the oncologist. I'll set them out below with the questions that I asked on our first appointment and others relevant to your Mom, in case you want to copy and paste them to print out for the appointment - having a list might be annoying for the doctor, but far less stressful for you and the family.

1. When the biopsy was taken, the clinician mentioned that there were some dead cells and fluid. Do you know what could have caused that and what does it mean? Will you need to do any further medical tests or treatment as a result?

2. Is the tissue taken during the biopsy cancerous?

3. What type of cancer is it?

(Lisa there is information on the main part of the site as to types of pancreatic cancer: http://www.pancreaticcancer.org.uk/PCTypes.htm)

4. Do you still recommend Gemcitabine (Gemzar) chemotherapy?

5. What are the risks involved? And what are the likely benefits?

6. If Mom doesn't react well to the chemotherapy and wants to stop, is that permissible?

7. Would chemo-radiotherapy be a good option for Mom?

8. Will Mom meet her primary chemo nurse-specialist and have an opportunity to visit the chemo treatment area prior to starting chemo?

(Lisa, my husband found this very helpful and it alleviated a lot of anxiety)

9. Are there other treatment options available that you do not provide?

10. Apart from the chemotherapy, what other the medications being prescribed? What are they for? What are their side effects?

11. Is there any way to confirm whether the nodules on the lungs are, in fact, metastatic cancer? If so, will you be carrying out that test/scan?

12. Apart from the clinical treatment, what other support is avaliable in or via the hospital for patients such as my Mom?

(Lisa, our local hospital has a Macmillan centre on site and access to complementary therapies etc)

13. What will happen next and when?

14. Who should we contact if we have more questions after this appointment is over?

I'm sure that other forum members will be able to add more but that should give you a start. As for forgetting what was said, some doctors will either allow you to tape the consultation or agree to send you their notes so that you have a record. They understand that this is a huge issue and many people will forget due to the stressful and surreal nature of the consultation. Just ask when you go in and see whether your Mom's oncologist is agreeable. If not, you might want to write down the important parts of the answers to your questions, although that's going to be distracting to you and you might miss some of the facts because you're too busy trying to keep up with the conversation.

Most importantly of all: Ask, ask, ask! If you don't understand an answer, say so and make the oncologist explain. If the answer to a question gives rise to another question, ask it. If you need a diagram to understand, ask the oncologist to draw one. There is no such thing as a silly question!

Good luck and let us know how the appointment goes.

Kind regards

Nicki

[chinup]

Hi Lisa

Yes I was sorry aswell to hear that your mum was in pain throughout the biopsy procedure, this shouldn't really have happened and I hope that she has recovered ok from it now. I read your post this morning and I have been thinking on and off what to advise you to say but having just read Nicki's excellent advice and check list there is not a lot I can add.

I was told that it is at this first appointment that the medics will be at their most receptive, patient and willing to answer your questions. It certainly turned out that way with Mum, subsequent appointments during the treatment were pretty useless because all they were interested in was basically whether she was surviving the chemotherapy or not. If she was ok then the attitude was great, fine, carry on, bye ..... and if she wasn't well then it was off to the side effects team who weren't remotely interested in answering questions. After this, even when things were going badly wrong you couldn't pin them down at all.

So, write down or print out a list of your questions and concerns. Nominate one person to write down the responses - who else is going to the appointment who is most likely to be able to remain slightly detached? In our case my husband was very good at remembering things but only because he kept out of the discussions and just made notes. The doctors won't mind at all if someone is there to do that.

The only thing that I would add to Nicki's suggestions is that you come out of the appointment with a very clear idea of what exactly they are proposing any treatment for. What is is it they are hoping to achieve? The reason I say this is because it is likely that they will suggest chemotherapy as a palliative treatment, which means that treatment will be given only to ease your Mum's symptoms. They won't be aiming to cure her and they won't really be doing it to prolong her life. If I remember rightly your mum is suffering from a lot of pain and I wonder if you could ask about spinal blocks, nerve blocks or any other kind of procedures which would be far less stressful for her? We got a bit distracted when they were talking about 'shrinking the tumour' by chemotherapy, thinking that that was the best way forward, not realising that the chemo would cause so many problems. They never mentioned any other methods of relieving the pain and I wish we had thought to ask. I think the most important thing is for you to all work together to get your Mum as pain free as possible.

Anyway, this is such a hard time for you. Try to keep calm, easier said than done, I know. Let us know how you get on. Thinking of you.

[Guest]

Hi Nicki & chinup,

Thanks both for your thorough answers and all the helpful tips and advice. I really appreciate it and I know this will help us a lot going into the appointment.

Just a little update and a chance for me to vent..... unfortunately after being able to manager her pain quite well the last couple of weeks mom woke Sunday night in excruciating pain. The oramorph didn't help at all and so my dad phoned an ambulance.

After a long wait and another phone call she was taken to the hospital and admitted after having an x-ray (which showed some constipation, but not enough to cause the pain they said) and some blood tests (which showed a high white blood count, no real explanation offered).

Now yesterday was a bank holiday and they were short staffed on the ward but can you believe that they forgot to give my mom her tablets and they only gave her one oramorph (for breakthrough pain) during the whole day (when she doesn't have this excruciating pain she has 2 or 3 a day). When my dad and sister went there last night (they were told they couldn't visit during the day) my mom was pretty much unresponsive and the nurse said she hadn't asked for any extra pain relief during the day and every time they checked on her she seemed to be sleeping so they left her..!!!! Well she didn't get out of bed all day, she didn't go to the toilet and she didn't eat or drink! It seems that she was in a semi-conscious state most of the day because of the pain - certainly in no fit state to get up and ask for her tablets/pain relief! This thought alone makes me feel totally sick!

Today she is still in a lot of 'new' pain but she can sit up and speak! The doctor has told her they want to do a bone scan to see if its spread to her bones!? Another bombshell!

Anyway just really needed to get this out to people I know will understand.

Thanks for reading and i'll update you after moms appointment.

x

[Nardobd]

Oh Lisa, I'm so sorry to hear this latest update and flabberghasted to know that in this day and age the clinical staff can be so careless.

Ted, my husband, has a phobia of hospitals (yeh, not exactly ideal!) and I also went through the issue of being told I could only visit during certain hours. Given that your Mom is so ill, I'd advise your Dad/Sister to speak to the staff nurse/specialist nurse and insist that they are permitted to visit outside normal visiting hours (assuming that your Dad/Sister don't have other commitments which prevent them from doing so). It will mean that they need to be sensitive to the staff so that the necessary work can be done around them but at least they will be on hand to ensure that your Mom gets appropriate pain relief and care. I came to an understanding with the staff at our local hospital that I would leave the ward for an hour or so whenever they requested me to do so in order to allow them to carry out rounds/nursing care. The reality was that provided I enabled them to work around me, I was allowed to stay the whole day. I was also permitted to participate in caring for my husband (washing, ensuring he was fed, taking him to the bathroom etc), which actually takes some of the burden off the nurses.

Ted had a high white blood count at one stage and we were told that it could be a sign he had a slight infection - I'm sure there are plenty of other reasons and perhaps your Dad or Sister could ask the doctors what they think it means in your Mom's case.

The latest bombshell must have left you gasping! The only thing I can say is that it's better to know. I found that I could cope better with the worst news I had to face than not knowing (I think that makes sense - I hope you know what I mean). If it's any comfort, I've had a bone scan (called a DEXA scan) because I have early-onset osteoporosis and it's completely painless - hopefully your Mom will find the same.

With my thoughts and prayers for you and your family and, of course, particularly your Mom.

Love

Nicki x

[Ellie]

Lisa, I too am so sorry to hear what your poor mum has been through. You must be feeling so upset and helpless, knowing you couldn't do anything.

My husband went through months of being taken to A&E with what turned out to be constipation. The pain he experienced was just terrible to see and we both cried so many times from sheer frustration at nothing being resolved. It was in the end - he had an emergency bowel resection, losing 3ft of his bowel.

I'm not saying that is what you Mum is experiencing, but please keep a check on what is happening in that department. Certain painkillers can cause constipation and a blockage in the bowel can be excrutiating.

I hope your Mum is more comfortable now and you can sort something out so that she is looked after in a better way. That's the last thing you need to be worrying about. Also, I know it is frightening to think about her having a bone scan, but at least that can rule out any other problem that may be there. Once the doctors know more, they can hopefully treat your Mum correctly.

All this must seem like a nightmare to you right now. All we can do on here is give you our support and send our thoughts and best wishes.

Love

Ellie

x

[chinup]

Lisa, I'm feeling very upset after reading your latest update, I can just imagine what your poor mum and the rest of you are going through, having been through virtually the same in recent weeks. All I can say is that you must all stay calm and focussed for your Mum's sake now and try and get this latest round of awful problems dealt with properly. I am not for one second making any excuses for the incompetence of the nursing staff who left your Mum without pain relief (believe me, I've seen it first hand) - but it sounds to me that the doctors are having a job to keep up with what is going on as things are happening quite quickly and there seem to be a few things that are happening at once now with your Mum. They are probably working hard behind the scenes to put together a picture and I can only hope and try and reassure you that they will have some anwers soon. The nursing staff are probably waiting to be told exactly what they are dealing with and that's why they seem like they aren't doing much. Like Nicki says it definitely feels better once you know what's happening, however bad.

Just one thing to say - if your Mum is still in hospital please make sure that the staff know that she has an appointment with oncology this week - it is all too easy to assume that the wards and departments will let each other know what stage your mum is at but they don't ..... if your Dad or sister is able to go in person and let the oncology clinic know your mum is in a ward then I would encourage them to do that.

As to the visiting - all wards and hospitals are different. Is your Mum on a general ward or an oncology ward? My Mum was treated at xx Hospital in xx where on the whole, the treatment ranged from a joke to adequate to outstandingly good. We had one or two hiccups but generally speaking they were happy for my dad to be at Mum's side when she was at her worst on the general wards. Visiting hours tended to be from 2/3pm till 8.30 pm, they didn't much like anyone turning up in the morning though. Doctors could turn up at any time and my mum wanted to have Dad by her side when they delivered the (usually bad) news and the nurses where pretty good at letting him be around them. In the Hospice at xx they were wonderful, Dad practically moved in and slept by her side every night for two weeks.

Anyway, could be a bowel blockage (x rays aren't definitive for bowel problems, but they may have picked up something in the bones from the xray, hence the suggestion for a scan?) and the high white blood count usually means that there is an infection going on - again, that could be causing a lot of pain for your mum. My Mum had several kidney infections but they were easily dealt with.

Try to keep calm and positive, we are all thinking of you here. XX

[Guest]

Thanks so much to you all for your responses.

It really means a lot to me that you care and can understand what we are feeling and going through!

Thanks again for the tips and suggestions!

I'm going home tomorrow morning so i can be there for the oncologist appointment so i'll post an update next week.

This morning mom sounded much better the new tablets and extra morphine seem to have done the trick and the doctor said she might be able to come home if the pain stays under control. They do already know on the ward that my mom's appointment is tomorrow.

Thanks again!

Lisa x

[Guest]

Hi All,

Thought I would update you on where we are with my mom. She had her first appointment last Thursday while she was still an inpatient. I now know what you mean Nicki (I think) with all the waiting around in hospitals. Mom's appointment was at 5pm but because she was an inpatient they said they would try and get her in around 12 to see the oncologist. So we were there for 12 (me practically straight from the airport) and we didn't go in until 20 past 3! According to the receptionist its quite normal that he's "running behind" with his appointments. Anyway I got to ask all my questions (thanks all for your help) although we were actually only in there about 10 minutes. They didn't have the biopsy results back so the discussion was mainly around the type of chemo he wanted to offer mom. He has suggested Gemcitabine in combination with capcitabine (think thats right) and he was clear that this was to help with mom's symptoms and pain and if she responds really well we could hope that it might halt the growth for a while or even shrink the tumor? But he also told us that it has spread to the lymph nodes - something they hadn't told us before. And because of this they won't do any other investigation of the lung nodules, it basically sounded like its probably everywhere so it won't make any difference to the treatment.

Mom was discharged the following day with even more tablets (plus antibiotics, just incase) and another increase in her zomorph.

She had an appointment on Monday with the chemo nurses and saw the ward where she will have it done. Then today she had a follow up appointment with the oncologist to check her blood again (for any infection, i think?) and discuss the biopsy results. True to word he was running 2 hours late with his appointments! Well her blood looks fine so we will go ahead and start this coming Monday! The biopsy results still aren't back - its been about 3 weeks now!?

One question to you all - I wanted to know how long a cycle of chemo might last - how long will they go on for? But he told mom today that he can't say anymore before they know how she copes with it and if its helping? I've read lots of posts that talk about having chemo for a set period of time (i.e. 2 courses or 3 months?)

So we are waiting again, at least now we have the feeling that something is happening. I'm going over so I can be with mom the first days after she starts to see how she gets on. I'll keep you upto date.

One last thing, since mom was discharged last week with the extra tablets she is getting even more tired than before and she is getting very forgetful. She also has trouble getting her words out and she said it seems to get worse as the day goes on. The nurse has looked over her tablet 'schedule' and said its fine, the combinations are ok and there isn't anything clashing, she said this will settle down and get better when mom gets more used to the new tablets? What do you think?

Thanks so much again for reading another very long post!

Lisa x

[pauline]

hi Lisa

i know with dad it was 1 day aweek for 3 weeks then aweek off i don't know how long it goes on for because dad had he's frist week then they stopped it because he had turned yellow and they said it wasn't worth him going through anymore it was then that the oncolgist discharged him from his care.

i do hope that the treatment helps your mum and she stays pain free

all my love to you and your family

pauline XXX

[Nardobd]

Hi Lisa

Yes, that is part of what I mean. It depends on how the hospital schedule chemotherapy - whether they see and treat on the same day or see one day and treat the next. The latter is a better option because you will minimise waiting times. Due to the expense of the treatment, the oncology pharmacy insist that they must have both blood test results and authorisation for the chemo to proceed before they will make it up. The process of making it up is full of checks and double checks, which you can't complain about but it does add to the time. If you are seen one day and treated the next, the pharmacy have the remainder of the day to make up the chemo and it should be ready on arrival the following day. Normally the first session of chemo is carried out with a minimum wait because all the checks and cross checks have already been done.

Chemotherapy affects all the cells in the body (not just the cancer) and your Mom will have blood tests regularly to ensure that it's not having too much of a detrimental effect: if the red blood cells are low this can cause anemia and other problems and if the white blood cells are low this can lead to an increased risk of infection (among other things). That is probably why more bloods were taken.

Pallative chemotherapy is used to help with the symptoms and, possibly, to extend the lifespan. The GemCap combination (Gemcitabine + Capcitabine) is one I've heard of before, although my husband is receiving only Gemcitabine. There are other chemo drugs too and different consultants have different views on what is best but ultimately it depends on how the patient responds to the chemo. It sounds like Pauline's poor Dad didn't have a good response but *touch wood* my hubby hasn't had too bad a time of it so far and his tumor has shrunk during his first three cycles of chemo.

It was explained to me that a "cycle" of chemo is a four-week period. On day 1 of the cycle the patient receives chemo and (assuming all is well) this is repeated on day 8 and again on day 15. We were warned that some patients cannot tolerate the day 15 session because of the side effects but that hasn't been the case with my hubby. The fourth week (day 22), no chemo is given so that the body has a little longer to recover from the chemo before the next cycle starts. We were told that normally three cycles were given and then a CT scan would be done so that the effectiveness of the chemo could be ascertained. Assuming all is well another three cycles are given, sometimes in conjunction with radiotherapy. However, the effect of chemotherapy is cumulative and after six cycles the body needs to recover, so chemo is halted at that point.

After we'd had the midway CT scan, I asked about the possibility of further chemo later down the road if, say, it all flared up again six months after the chemo is finished. I was told that subject to the benefit/risk/side effects issue, then chemo could be offered again subsequently but probably a different form of chemo to the original. We haven't got that far yet, so to comment further on that would be speculative and not particularly helpful to you.

It does seem that the biopsy results are taking a long time. However, as you say, it probably won't make too much difference to the treatment. Nevertheless, I'd keep pressing - it's one of those things that you just need to know (or at least I did).

Morphine and all its deriviatives, including zomorph, are extremely powerful painkillers and, like everything in medicine, they come with side effects. My grandmother (who had bowel cancer) got confused whilst taking morphine but we were told that it could also be the effect of the cancer generally. Tiredness is to be expected and is the body's way of trying to deal with all the things happening to it! It's quite possible that your Mom will acclimatise to the additional medication and that this will have the effect of making her less tired and forgetful although, like everything, it appears that this depends on the individual.

It's wonderful that you're going to be with Mom during the first days after her chemo and do keep us in the loop as to how she gets on.

Love

Nicki x

[Guest]

Hi All,

I hope everyone is doing ok, well as ok as can be expected. How are you and your family coping Pauline?

Well mom had her first lot of Gemcitabine last week (she will have her second lot today) and she has been taking the Capecitabine tablets everyday since then. And I have to say that so far she hasn't had any bad side effects. The only problem she has is her tiredness but I'm sure all her other tablets are also contributing to that.

So we are feeling really positive that she didn't get any immediate bad effects. We are now just keeping our fingers crossed that she won't get sick later this week or next week. They told us that the immune system is at its lowest point between days 10 and 14 and like Nicki said some people can't tolerate the day 15 lot.

I will keep you upto date on how things are going.

Best wishes to everyone

Lisa x

[Nardobd]

Hi Lisa and I'm glad to hear that your Mom tolerated her first chemotherapy session well. I'll keep my fingers crossed for continued good news!

Nicki x

[kezza1]

for my chemo was having it 2 days a week for 3 weeks then a week off. I tolerated it for the first 4 complete sessions but then the temp spikes just would not subside so ended up in hospital. So for my final session I only had 2 weeks of chemo but my radiation treatment continued, had 30 days of radio,had 6 weeks of then had my whipple. Recovered well from my whipple went home after 10 days that night had a pulmonary embolism back in hospital for nearly 2 weeks then home for a month. Then had discussions with my surgeon it was decided to have chemo to mop up any nasties that may be lurking. Had another 2 full sessions but between the end of my 2nd session and the beginning of my 3rd blew up like a balloon put on 10 kg in 2 weeks, fluid, oncologist had only ever seen it happen once before,no more chemo, which I am fine with fluid is nearly all off back to leaving hospital weight. They tell me I am clear only stage 1 cancer no matastasies or lymph node involvement, we will see, hope thy are right. Good luck to you and yours.

[Guest]

Hi Kezza,

Thanks so much for your reply, it always helps to hear other people’s experiences.

Mom has now had her third lot and will have a complete break next week. And although I hardly dare to say it she is doing well so far, no bad side effects!

I’m glad you are doing better now and its definitely good news with their latest diagnosis.

Good Luck to you!

Lisa x

[kezza1]

Have since my last post found that the chemo has damaged my kidneys,am having blood test to measure my kidney function no improvement yet.Renal doc not to worried yet will know next tuesday whether plasma exchange and diet change are on the cards.Hopefully my numbers will improve and no further treatment will be needed.Did not know that cisplatin and chemzar are known for this obviously I did not ask the right questions during therapy,still sure I would have had the chemo just would have known what to look out for.

[Nardobd]

Hi Kezza.

I'm sorry to hear about the side effects of the chemo. Having done some research I understand that both Gemcitabine and Cisplatin can result in kidney damage in 30% or more of patients (http://www.caring4cancer.com/go/cancer/effects/lesscommon/acute-renal-failure.htm). From memory, I think Ted and I were told that there could be some renal side-effects but I certainly wasn't aware of the relatively high risk of this, so thanks for alerting us to it.

The Newcastle Hospitals' information for patients, available online, indicates that when having cisplatin chemotherapy you should drink at least 2 litres of water each day to reduce the risk of kidney damage.

As I understand it, some patients don't have any symptoms of kidney damage but the following symptoms may occur and if anyone is concerned about any issue they should speak to their doctor as soon as possible:

Decrease in amount of urine or frequency

Pain or urgency with urination

Dark urine

Blood in your urine

Fatigue

Muscle weakness

Swelling in your feet or ankles

Nausea or vomiting

Confusion, seizure

Good luck for next Tuesday - I do hope that your test results improve and you don't need any further treatment. Let us know how you get on.

Kind regards

Nicki

[kezza1]

Numbers are on the improve so renal doc happy now to let kidneys look after themselves but will be having blood test every week to make sure the numbers are still going the right direction