Mum told she has cancer

Hi Pintsizeprincess I'm sorry about your mums diagnosis. My time frame was as follows, went to GP Feb 2024 was misdiagnosed, finally diagnosed July 2024 and started treatment end of September 2024. Obviously I'm not a doctor but the PET scans quite often show other areas of concern which may be something but they may not, mine showed two areas one of which was another tumour, both turned out to be nothing to worry about. I had to have a smear also.There will be a lot going on behind the scenes as such, mtd meetings etc deciding on the best plan of action for your mum. These early stages can be so hard when you are in limbo land as such but once you get your mums treatment plan and dates you will feel like you have a bit more control of the situation. The standard treatment for anal cancer is chemoradiation which in my case was 5 days of chemo 24/7 via a pump attached to me via a picc line along with 28 sessions of radiotherapy daily (got the weekends off) and then another 5 days of chemo at the end. Although most people on here seem to have oral chemo regime but I think that's different hospitals preference. The treatment can be tough but it is doable, i found it not as bad as i had expected.As a rule the treatment is very successful. Don't know if this is of any help or not.

Everyone on here is here for you and your mum however you need they've all either been through it and out the otherside or going through it. Use this space to ask questions or just unload whatever you need.

Sending hugs. Xx

Hello Pintsizeprincess 

I am so sorry to hear about your Mum's diagnosis and the worry that you are all going through right now.  What I can say is that she does seem to have had the various scans needed to build up a picture of what exactly is going on, (except for the smear) but I am really concerned that she hasn't had a face-to-face appointment to update her on the plans going forward in her treatment.  It must be so disconcerting, not to mention dismissive to have all this news on the phone.

It may be a good cancer department but I think their lack of face-to-face contact is woeful.  If the nurse is the first point of contact then it would be a good thing for your Mum to ring and ask when she is going to see a doctor and when she is going to have the smear test.  And if she gets nowhere, consider going to PALS (The Patient Advice and Liaison Service) which offers free and confidential advice to patients.

She (and the wider family) really don't need this added stress on top of a cancer diagnosis.  I really do understand and we have all felt this fear and I am hoping that things start moving forward in her treatment very soon.

Please update us if you can.

Big hug to you and your Mum

Irene xx

Thank you so much for your kind words and advice, you hope you will never have to here the C word and when you do your brain starts going into overdrive, minutes turn into hours hours turn into days and you just don’t feel like you’re getting anywhere, and just think the worse. 

I hope you’re well, and really appreciate your advice thank you so much xx 

Hi Irene, thanks so much for your message.

yes I was gobsmacked when my mum was given such devastating news via a telephone call, by a bowel nurse as they call themselves, and when my mum was asked if she had any questions, and asked when they thought she would be able to start some sort of treatment she was told, we can’t tell you that, there are lots of people with cancer, she wasn’t the only one. 

Nothing like kicking you when you are down, and needless to say my mum doesn’t want to speak to them anymore as it’s upset her too much. 

I have put an email into PALS as I feel my mum hasn’t been receiving the best care or information right now, but reading through lots of other posts I’m hoping once my mum finally gets an appointment with the oncology team once all other tests have finally been done, a treatment plan can start and things will move more quickly. 

Thanks for your kind words and advice xx 

Hi there Pintsizeprincess  & another warm welcome from me to the MacMillan Online Community although I’m so sorry to hear of your mums recent diagnosis. 

Obviously this is not the news than anyone wants to receive but for it to be delivered in such an impersonal manner just adds insult to injury in my opinion! You’ve done exactly the right thing in contacting PALS. 

As Bungle1 has said there will be lots going on behind the scenes with Dr’s deciding on the best course of treatment for your mum etc., but for her to be left out of the loop so to speak with so little information when emotions are heightened by the initial diagnosis just isn’t ok!

All of your mums results of her initial colonoscopy, scans etc., will be presented at a multi disciplinary meeting (MDT) & a plan moving forward will be decided, at the hospital where I received my diagnosis these took place each Wednesday, I received my diagnosis on a Tuesday & had both a CT & MRI scan at the beginning of the following week but missed that weeks MDT so my case was reviewed the following week which meant it was a couple of weeks following my diagnosis but then the face to face appointments came in thick & fast. 

If it were me I’d be putting in a call to see if that would hurry things along a little, just explain that mum is waiting for an appointment for a smear test & hasn’t received anything yet & that it’s concerning that this is holding things up. 

If you or your other family members ever feel you need a little extra support we also have the Family and friends forum where you can speak with others in a similar situation to yourself. 

I hope that your mum hears something really soon & things can start moving forward for her. Please keep us updated. Also bear in mind that you also have choices if you’re not happy with the hospital where your mum is being treated. 

Nicola 

Hi Nicola, thanks very much for your reply, insight and helpful advice. 

I have been chasing on my mums behalf as she just isn’t feeling strong enough to do it herself. 
to start with I went through the bowel nurses at the hospital but to be honest they haven’t been of much help, and it was actually them who told my mum her diagnosis over the phone not even a consultant. 

I have since been dealing with an oncology secretary who said she is chasing things up for me, but as of yet still nothing. 

im really hoping as soon as my mum gets to see somebody face to face things will start moving and can get on with a treatment plan. 

Thanks again for reaching out and I will keep you updated. Xx