Please forgive my very long post I have so many questions and simply don’t know where to turn.
My mum was diagnosed with rectal cancer approx. 2 years ago. Her diagnosis and treatment was delayed mostly because of covid for at least 6 months which I still can’t quite come to terms with. However they performed surgery and indicated they had removed the tumour with good clear margins. Unfortunately cells were found in 2 lymph nodes nearby and there was blood vessel involvement too. For this reason she went on to have ‘mop up’ chemo (folfox) for 3 months. She found this brutal and didn’t really have a life while undergoing the treatment but she ploughed on thinking it would be worth it to save her life and she would hopefully never have to have it again!
Fast forward to her 2 year CT scan and they found ‘2 small nodules’ that needed further investigation. Nearly a month later she had a PET scan which she then found out revealed ‘2 BIG’ growths they feel are cancerous and ‘lots of’ small ones they’re ‘not sure’ about. She was told chemo would be the next step and an appointment made with her oncologist.
We have done an awful lot of research looking into lung mets and were fairly hopeful that this could be managed, treated and kept under control with so many different options for treatment, reading so many positive stories from people fighting this awful disease.
When we met the oncologist the first thing he said was ‘do you want to delay treatment’ my mum asked why she would do that? His response ‘personal choice’ 
she said she didn’t want to have chemo but if it meant living then she would! He was very softly spoken, lacking in any sort of empathy and mumbled all of the information. He mumbled something about immunotherapy not being an option. He told us she has 10 nodules in total scattered across both lungs. BUT he said they didn’t know if the smaller ones are even cancerous 
♀️ I asked why the CT scan showed only 2 small nodules but the PET scan showed a different story and his reply was ‘it doesn’t matter’!! I asked if the chemo had a positive effect would she be eligible for surgery and he just shook his head, mumbled and moved on to the chemo drugs. He immediately suggested she go back to FOLFOX which was my mums biggest fear. We immediately tried to explain it was too hard for her to cope with. We listed some of the numerous debilitating side effects she had from it and the issues she is still left with and he responded with ‘all chemotherapy has side effects’ he then offered the alternative would be FOLFIRI and I quote ‘more diarrhoea less issues with cold temperatures’ he didn’t discuss ANY other options or offer advice on how these things can be managed which we KNOW from our own research is possible.
There were many things we didn’t ask as quite frankly we were all in shock (my mum a very young 67, myself and my older brother. My brother and I are both in our 40’s and I’d say fairly intelligent! But we were treated and looked at like we were stupid for asking anything and completely shut down).
We have since found out my mums key worker (who hasn’t been much support either) was supposed to attend the meeting but was delayed. We have also spoken to macmillan who have provided us with contacts and phone numbers that we weren’t ever aware were available. We have done all of this ourselves at no point have we been offered support or told where we can find it.
As we were told she could only have chemo I would like to know how accurate this is looking at other people’s experiences?
- How can we learn more about immunotherapy options?
- Are ablation, radiotherapy, or targeted treatments viable options?
- Should a biopsy be done to confirm the nature of the smaller nodules?
- Is surgery an option for my mum's case? Or even further down the line?
- How can we seek a second opinion and find lung metastases specialists in the UK?
If you’ve read this far I’m so grateful and any advice would be so very welcome 
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Hi Cath, thank you for your reply ️ you replied on one of my earlier threads (I posted before we had the meeting with the oncologist) I’m so sorry your cancer returned after so long what a blow for you 
I am driving myself mad researching and going around in circles with treatment options. I feel that our oncologist didn’t explain anything and knowing there are so many different variations and options for treatment I think I’m just very stubborn and won’t stop until I get more answers. I think if it was for myself I probably wouldn’t do it but my mum is sometimes so easy to just give in and go with the ‘easy’ option I can’t let her do that, not this time I hope your treatment is kind to you and you manage any side effects 
️sending lots of love and strength to you ️
I read this the other day but haven’t had a moment to properly sit down and reply to you. You have also replied on another one of my threads (before we had the appointment with the oncologist). Your support, advice and the hope you give is just amazing ️ your mum sounds like an absolute warrior 
I will read through your other links and try and arm myself with as much knowledge as possible. We are waiting to be given an appointment with a different oncologist within the same trust currently. We did agree to go ahead with the chemo and don’t want to delay but we do not want to stay under the care of the current oncologist. I’m also looking into the options of a 2nd opinion with Christie’s (I believe Manchester) as it’s the closest specialist centre to us) but I’m unsure as to when it would be most beneficial to have that opinion…after the first round of chemo and scans or now before anything has happened 
Again thank you so much - I’m off to look through your links!
