Lung metastasis

https://www.bowelcanceruk.org.uk/about-bowel-cancer/advanced-bowel-cancer/treating-advanced-bowel-cancer/

Hi VGCL 

Welcome to the forum and hope we can offer you the support you need at such a difficult time .

I have added a link above that will give you lots of information on how bowel cancer that has spread can be treated . To be honest most hospitals I have heard of follow the Nice guidelines for chemotherapy so it’s pretty universal in most part and I hope that gives you some reassurance on that front . We have wobbled through a few different interviews that were pretty frank at the beginning and I still feel it’s news that can be delivered with more humanity. However I was able to separate the clinical aspect and looked for support and compassion elsewhere . It also gave me great hope to see a subgroup of patients doing well despite a difficult diagnosis .

My mum had a tough first year on chemo but using the same chemo at a more tolerable strength the second year allowed her the right quality of life and made it more doable . I would certainly recommend getting a list of questions together about how to manage the side effects when treatment becomes a marathon not a sprint . Pacing yourself , getting quickly on top of the side effects is a big part of it .

It’s a different learning curve but some people do well with it . My mum’s always done well getting to surgery from chemo despite her spread but this is the first time she is on continuous treat so a new pathway for her. We are getting to grips with it.  A couple of learning curve cycles but can see a pattern forming . Right now she is with us on holiday . Each day walking a bit more .

I too found certain aspects hard . It’s easier with time and you have only so much energy as well as your mum and your daughter need you well .

I most certainly would use the forum for support and to off load to. You need a safe place to say how you really feel and we are there for you .

take care. 

Court 

Hi VGCL

Court has given you some brilliant links and advice 

Are they sure that it’s definitely from the bowel?

I know it’s rare but I have same as your mum but it’s another primary! The nodules they picked up on my yearly scan September and eventually I had a VATS 7th March which removed two cancers with clear margins.

I was told I had lots in both lungs which scared me senseless but later told they may be nothing to worry about then I was told it could be stage four or benign . I felt really stressed whilst waiting and the uncertainty was awful 

I think they try and cover all eventualities but for me I found it really frightening and long winded. 
“We will do a biop I got to the appointment  and was told

“No we have decided it’s a waste of GA 

BLIMEY

It was very stressful.
There’s amazing treatment out there and I’m thinking of you. 
Take care xx

Thank you for this, it's all such a shock today I can't stop the tears. I have read up on the treatments and all the possibilities. I think it's hard not even knowing what her path will be at this point. We were literally told yesterday there are 2 big ones and lots of little ones and it will probably be chemo. The key worker said she would make a note that my mum had been told and is 'willing to discuss treatment'... it sounds so final  I hope once we speak to the oncologist we have some more hope / answers. I'm sorry you too are going through this but it is lovely to hear your mum is on holiday with you. My mum comes everywhere with us and we were planning all kinds of things until this revelation. Hard to know how to balance life just now but I suppose we will get there, we have to don't we

Hi Ann, thank you for your reply. I want to say it's 'great news' your lung nodules are another primary although it sounds ridiculous to say! The waiting is often the worst isn't it yet sometimes I feel I'd rather not know. It was my daughters 5th birthday on Sunday and we all had such a wonderful time not knowing what was to follow the next day. I hope your treatment kicks cancers behind and you continue to do well xx

Hi sorry yous have had this news. I to like your mum have 1 large nodule in my lung and 15 small ones over both lungs. I have a tumour on my sacrum in or on the bone they can’t make up their mind and enlarge nodules in my abdomen. I was diagnose last August with stage 4 recurrence inoperable and not curable. I’ve been having 3 monthly scans to watch the growth and there has only been millimetres in growth over this period so my oncologist explained that’s the reason he’s not started me on treatment as he did not want to start it to soon. 

My treatment is starting on 2nd June as I’ve more symptoms now. 

It’s very difficult I understand. You are in the same situation as my daughter we do everything together also my 9 year old granddaughter as well. 

All I can say is I try to not let it consume my life difficult as it is I try to take each day at a time and get out there and live my life in between all the hospital visits. 

I can’t change my situation so I just work with what I’ve got. I’m never in. 

There’s a lot they can do nowadays so keep that thought. ️

Hi Cath, I’m so sorry to hear your situation. It is truly devastating and so cruel but you sound very positive. I hope your treatment is kind to you and allows you to spend more precious time with your loved ones. My mum has had a small cough on and off for weeks really but my daughter brings home every possible virus from school and we’re all constantly poorly so we put it down to that  Other than that she’s so full of life it’s hard to get my head around everything. We have just heard she has an appointment with the oncologist on Tuesday. I don’t expect we will have any more support from him just facts and a chemo treatment plan. She is terrified of the chemo, it crippled her after her initial diagnosis. Can I ask where you have found the greatest support from? Other than family? My mum lives alone and I am her person but I know she worries terribly about me and it would be good for her to have someone /where else to turn to if she feels she can’t burden me x

Hi VGCL

Yes I agree with you another primary may be good but it’s stuck in my head that I have multiple. That word does stick but I know that they can SABR them if they turn nasty.

It’s the waiting and I found it very slow. I was picked up by my bowel scan September then November I had another scan then Dec 28th appointment at the lung function clinic which gave us the bad news. Multiple! Then bio booked and changed on the day in and finally the VATS March. That’s a long stressful time so when my follow up came for 5th April which is four weeks from my op I was not prepared to wait for staging 

They phoned me with the results after the MDT otherwise I would still be thinking stage 4. As that was mentioned

They got them with clear margins so now it’s watch and wait 

I hope that things move along quickly for you and they make their plan and stick to it 

I was given a choice of three. Watch and Wait, SABR, Or VATS. 

Best wishes 

Hi,

I have to say I’m not looking forward to the treatment. I’ve been there before but I’m 10 years older and they were looking to cure last time. I suppose I’m lucky in that I got another 10 years saw my 4 granddaughters born and grow up. I have my daughter son and husband but to be honest we don’t really speak about it. I come on here sometimes as everyone knows how you feel.  My view is I’m living with cancer and I remain positive, we are our own statistic and I can’t change anything. ️

I started taking Manuka honey and I’ve not had any colds so far. Sending you a big hug. 

If I could have another 10 years with my mum, so she could watch my daughter grow up I’d grab it and cherish every moment. I somehow think I’ve turned my brain off somewhat today and I’m almost denying it which maybe isn’t the best. I’m convinced if she can just get through the chemo they can halt it, shrink it and remove it. I know it’s a dream but I have to keep hold of that hope. Until we meet with the oncologist on Tuesday we really have no idea what’s going on. I just don’t understand why they can’t have someone call her and explain all of her options, more details and give her some hope. She’s very despondent today quite understandably. It breaks my heart to see my beautiful, selfless mum so sad. So scared of what the chemo will do to her I wish I could take some of that away from her 

good luck with your treatment Cath, sending love and strength your way x

Hi,

You might very well have that with her as you say you don’t really know until you meet with the oncologist. 

Whatever comes your way you will find a way to deal with. 

Chemo might not be as bad as you think everyone reacts to it differently. You just need to look at it as a challenge that you’re going on and it’s a means to an end. 

I will miss my white wine and ice. I’m not looking forward to it but it’s second time round and I’m thinking this treatment may be more aggressive than before because of the stage. Hopefully I will get through it with the help of some red wine. 

Try and do some nice things with your mum something yous both enjoy. 

Im away on another one of my trips shortly. I went to see Charlie and the Chocolate Factory with my daughter and granddaughter for Mother’s Day. 

If you want to chat I’m here anytime even just to listen. Keep me updated on your mum and how you are doing. Thanks for your kind words I’ve two  breaks away before my treatment starts. ️️