Hi Rolowales,

Welcome to Cancer Chat. I'm sorry to read what you're going through at the moment - it's never easy when a loved one is going through something like this, and the uncertainty makes it more difficult.

I'm not really able to advise in terms of what to expect from the appointment. You may wish to post in the 'Ask the nurses' section of Cancer Chat, as one of our nurses may be better placed to help. Alternatively you could give them a call on 0808 800 4040 - Monday-Friday, 9-5.

I would also suggest noting down all your questions and taking them to the appointment, as I expect you'll be able to get some of them answered at the appointment.

Wishing you all the best and I hope you're able to find out more soon,

Ben
Cancer Chat Moderator

Hello GemmaGrace

So sorry to hear you are going through the same thing. I remember feeling exactly the same - very in the dark, clueless, helpless. Following my post, things moved forward fairly quickly and I hope you'll find the same. 

At the appointment with the haematologist they took bloods and she had a consultation which informed her that it was non Hodgkin's lymphoma (diagnosed from the biopsies). 

They then carried out a whole body PET scan which revealed it was in various places - hip, tummy, neck etc. So from those results they explained it was stage 4. We immediately thought the worse as I think most do with stage 4 but with this particular cancer they said stage 4 is still curable and the consultant was very positive and hopeful.

Mum started her treatment on the 21st sept. R-CHOP chemotherapy. She has had 6 rounds 3 weekly rounds.  The last one was about 7 weeks ago and she has a scan next week to see if treatment has worked. They repeated the PET scan after the fourth round to check progress and the results from that were postive. So for now we are in a little limbo and the waiting is always the worst, as you mention.

I wish you and your mum all the best, let me know if I can try and answer anything else for you. Hugs to you both xx

Hi Rolowales

Thank you so much for your kind words :love: I read your message out to my mum last night and it brought her to tears (in a good way), we've just never heard of this diagnosis before!

I wish our mums didn't have to go through this at all, but it's really comforting to hear that you understand the same feelings and experiences that we are going through. I cannot thank you enough for sharing! 

Gosh, your brave mum, so inspiring to hear and so glad the news has been positive so far. I will keep you all in my thoughts and wish you only the best for the scan next week, please do let me know how you get on? 

We had a few questions from your experiences if you wouldn't mind sharing? Mum has wondered if your mum had any obvious symptoms before hand, and, after the initial consultation with the haematologist, how long was she waiting for her PET scan? How long were you kept waiting for PET scan results after this? And did your mum find that Covid held the progress up at all?

We can only assume that mum hasn't been invited for an in-person conversation due to Covid-19. Her letter for the telephone appointment on the 4th March simply says it is a "follow-up" to "check on your progress, give you time to discuss any problems, and save you time spent visiting the outpatients department" :cry: this just seems more of a follow up than anything, but she doesn't even know anything to follow up on! 

Sorry for the waffling!

Lastly, is there anything you wish you could've asked a specialist sooner, or anything you found out along the journey that you wish you knew from the beginning? 

Thanks so much and take care, wishing you so much good luck for the results next week xx 

Hi GemmaGrace

Happy to be helping in a tiny little way. 
Thank you for your kind words too, I will keep you updated.

Mum had no symptoms apart from pain in her armpit which prompted her to contact GP. They initially refused to see her in surgery and dismissed it as an infected hair follicle and gave antibiotics. Two weeks later it was still the same so this time they agreed to a face to face appointment and a different GP immediately made referral to breast clinic. For mum, this was the only Covid related delay we have seen so far - apart from perhaps next weeks scan which really should have been done a week or so ago. Mums never had any symptoms in any other areas the lymphoma was found. Different areas/NHS trusts seem to take different approaches to consultations during covid - mums have always been in person other than the review done during treatment. 
 

The PET scan was 10 days after the initial consultation with the haematologist. The results were given 6 days later. Chemo started 4 days after the results. They had pencilled in her first treatment before the results so they could start treatment promptly. 
 

Have you been told whether it's Hodgkin's lymphoma or non Hodgkin's lymphoma yet? Mum has the latter of which there are then two types - slow and fast/aggressive growing. For slow I believe they take a watch and wait approach over months/years until treatment becomes absolutely necessary. Mum has the fast spreading one which is why treatment was pencilled in before the results.

I would try and find out what type it is and what treatment would be. Shielding during covid has been vital as I understand blood cancer patients are particularly vulnerable from covid and other infections - even when the government changed their advice on shielding, mum was told by hospital to shield and be strict with this. 

I've typed this quite quickly so let me know if I've missed anything or if there's anything else I can try and help with. Perhaps worth mentioning that mum was told of all the cancers to get, this was one of the 'better' ones to have. That provided us with lots of hope xx

Hi Rolowales

I'm sorry for the late reply (especially as you have been so kind and helpful), have been feeling a bit blue due to still processing the news - the emotional side of this is just crazy really, and I'm not even the one going through it!

Gosh, so glad your mum pushed to be seen and the diagnosis was made. We've found that we've really had to fight to get the GP to put mum on the extremely vulnerable/shielding list, in order to have her Covid vaccine, getting through to them was very difficult and anxiety-inducing for mum. 

This info is so helpful, thank you. Has really put my mum's mind at ease, knowing she may have her PET scan after the consultation tomorrow. She has been worried they might just say she doesn't need it, depending on whether it's non Hodgkin's or Hodkin's (we haven't been told yet, but expect to be told tomorrow). 

That's brilliant thank you. Cannot thank you enough really! I hope the scan went well / will go well later this week xx