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Hi I've messaged previously. Mum was diagnosed back in July 10th 2019 with cancer spots on her pancreas and liver. She had her first oncologist appointment today and basically they have said it's been there a long time and is very slow growing so no immediate start on chemo! Is this ever right?
She had a kidney out a few years ago, and one of her right lobes out last November 2018. She had a CT scan in Dec 2018 and said everything seemed fine. Then she had her 6 monthly scan in June and was told about these cancer spots in July. To me this is not "slow growing" if they have already spread to her liver in just 6months. Cancer on the pancreas kills fast especially as it has spread to her liver. I feel the doctors are thinking it's too late and they may as well not waste medication for something that will inevitably kill her anyway. I'm sorry to feel like this but I don't know what else to do or say I feel completely lost. I've never heard of slow growing cancer with the pancreas everything I have searched says it kills within 5 months if you're lucky you get a year!
Please help me with any information you have, have you ever come across this before? If it's slow growing then why can't they operate on this? Even if it's to get rid of the cancer spots on her liver or a total pancreas removal? I am so confused.
Sorry for the long post, I'm desperate.
Thanks for getting back in touch. I’m glad you’ve been finding our support helpful during this difficult and stressful time. It’s common to have lots of questions after a clinic appointment, especially if this has been news you weren’t expecting.
The specialist doctor’s will have discussed all your mums results at a multidisciplinary team meeting (MDT). When a cancer has spread, the focus of treatment is no longer to cure but to extend life with quality of life being the main consideration.
I see from your previous messages that you mention your mum seems otherwise well. And this may be the reason they are not starting chemotherapy straight away. In this situation it’s common to wait until symptoms arise or become more problematic before starting treatment. This allows time to make the most of feeling well, as treatment usually comes with side effects.
Like chemotherapy, consideration of surgery comes down to benefit vs. risk and impact to quality of life. The size, location and whether it was near any major blood vessels all influence treatment decisions too.
With your mum’s permission, it might be helpful to speak to her specialist nurse or consultant. They will be able to explain why they feel delaying treatment is in her best interest and why certain treatment options has not been offered.
We have lots of information about coping with advanced cancer that you may find useful. We are sometimes able to help more by having a chat. If this is something you feel up to, or you would benefit from please don’t hesitate to give our support line a call on 0808 808 0000.
Take care, Amy (Macmillan Information Nurse Specialist)
Hi thanks for your reply.
After speaking further with my mum the doctor has now said that the liver is "inconclusive" and they need to do a further MRI scan to see if there is cancer there. He also told my mum that removing the pancreas is a no go as it will result in chronic diabetes, isn't this easier to treat than cancer? My mum asked if they can just remove part of the pancreas and he said they do not perform operations like that. Well what is a whipple procedure? How come in my researches that I have seen this time and time again that part of the pancreas is removed? He didn't give a reason he just said that operation was not performed! He didn't even give her a stage of cancer, and he also had the dates wrong saying her consultants appointment was July 5th, it wasn't it was July 10th. Apparently the cancer showed up on a scan back in December after she had a lobectomy but either no one picked it up or it was picked up and nobody told my mum! I'm sorry to rant but I am so angry we have had nothing but bad experiences with University Hospital of Wales!
I didn't have much hope with this doctor at all, he seems to have posed more questions than answers.
I'm trying to talk my mum into getting a 2nd opinion from somewhere else someone who seems like they could actually help and give us the answers we are after. She had blood taken yesterday and will be getting an MRI within yet another 5 weeks! That will be 10 weeks after given her diagnosis, this doesn't even include the time from the actually scan back in June, this seems way too long to wait. They will then apparently know what kind of chemo to start her on, they were both tablet form options. Can you recommend anywhere else we can go for a 2nd opinion please? And also what to expect from tablet chemo, is there anything to look out for or what we can do to help with side effects, many thanks
Thanks for getting back in touch with us. Please don’t apologise for “ranting” we don’t think you’re doing that at all. It sounds as if you’re worried about your mum and the reasons that you’re being given for your mum not to start treatments. It’s because you love her so much and want to make sure that everything is being done for her that’s making you feel the way that you’re feeling just now.
Feeling as if the answers that your mum is getting is posing you to have more questions will no doubt be making you feel more stressed.
It’s natural to want to know if the cancer can be removed by surgery, and to question why this is not an option. Removing part or all of the pancreas can be a surgical option, for some people. But this is usually recommended if someone has an early stage pancreatic cancer. This is because this is major surgery and has risks. The doctors must weigh up the benefits of treatments versus the risks.
Would your mum give you permission to speak to the consultant or specialist nurse? This might help you to have the opportunity to ask questions and hopefully get a clearer understanding of why the doctors have made these decisions.
If you’re not happy about the experiences your mum has had, you have the right to complain. We cannot advise you whether you should, but we have this information that can help you if you do decide that this is what you want to do.
We aren’t able to recommend a particular hospital to give a second opinion. But you can ask others from the online community about their experiences. Your mum’s GP can help with this if she doesn’t feel comfortable asking her hospital team.
There are different types of chemotherapy drugs that the hospital may recommend, a few come in tablet form. That doesn’t mean that they are less effective or have less side effects. It means that they are the drugs that the doctors deem best for treating your mum’s type of cancer. This is why it’s important that they get as much information about what type of cancer your mum has before starting treatment.
Here is general information about chemotherapy that can be helpful to read.
The most important thing is to be aware of any signs of infection when someone is having chemotherapy, this includes tablet forms too. Your mum will be given a 24-hour contact number that she can call if she has any concerns or becomes unwell.
We have this information about how your mum can reduce the risk of infection when she is having treatment.
I can see that we’ve suggested that you call our Support Line and talk to one of the nurses about what is happening with your mum. Have you been able to do this? If not, why not give us a call on 0808-808-0000. Our Lines are open 7 days a week from 8am till 8pm.
Best wishes and take care.
Ellen-Macmillan Online Digital Nurse Specialist.
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