Finally some answers

Hi Greyhoundlover 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

Most people do feel better once they know what the treatment plan is. I know I felt more in control, daft as that might sound.

While you're waiting for replies, it would be great if you could put something about your mum's diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi, sorry to hear about your mum's diagnosis, and it is understandable she is worrying about the results, I was the same, and I still worry about the results after my regular follow ups, having had lung cancer in 2023.

Yes, the wait is long, but all the tests done are necessary in order to determine what type of cancer your mum has and at what stage, also where in the lung it is situated and whether your mum is fit enough for surgery, although some cancer types are not eligible for surgery.  After a multidisciplinary team (MDT) have the full picture, then they can decide on what the best treatment is going forward.  All this will be explained when your mum sees the Oncologist.

Please let us know how she gets on, we are all here with any questions you or your mum may have, we have all been there.

Best wishes to you and mum.

Thank you so much, so it’s stage 2, they could operate but very high risk and her quality of life would be reduced, so she’s going for radiotherapy. Have to meet radiotherapist hopefully next week with a proper plan, either intensive short term or less intensive long term (months), they’ll decide that. 
The doctor was quite optimistic about treatment but was very honest, he is concerned there are numerous other “spots”…. Too small for biopsy/targeted treatment, so she’ll be monitored closely to keep an eye on them. 

Hi thanks for your reply.

Good news for your mum that it is only stage 2.  I opted for radiotherapy instead of surgery because I found the risks and complications of surgery a bit worrying because my cancer was in the upper left lobe, which gives another complication of heart problems.  I was told by my Oncologist that radiotherapy is just as effective as surgery.

I had three weeks of radiotherapy at the start of December 2023, and at my first three month follow up CT scan with contrast it was found to have shrunk by almost 50%, and because I had such a quick response to radiotherapy my follow ups are only every six monthly.  My second follow up last September showed another shrinkage and what is left of the tumour has shown no activity.  My third follow up is the end of next month.

Your mum will be tired during her radiotherapy treatment, I found I was sleeping for 8 hours at night, then having a siesta for about an hour during the afternoon and my appetite dropped a bit.  You will be given a full explanatory leaflet about radiotherapy regarding what happens and about side effects etc. 

Regarding the "small spots" or nodules as they are sometimes called...these will be closely monitored throughout.  Some people have these nodules for years without any problem from them.  A friend of mine has had a couple of nodules for 17 years without growth or problems.

Tell your mum from me not to worry about radiotherapy, it's just like having an X-ray only you lie down and it is completely painless.  The radiotherapy attacks the DNA of the cancer cells and kills them.  Her first visit will be for marking up...this involves having a CT scan to show exactly where the cancer is and then having a permanent marker on the outside of the chest to show exactly where the radiotherapy beams are to be directed.  These markers are similar to a tattoo, although they are dots smaller than a pinhead, usually there are four in all.

Hope your mum is feeling less panicky now things are moving forward.

Regards, Ann

Thanks so much Ann. Can I ask, how did you get to radiotherapy? Is there anything family/anyone did that really helped? Kathryn x

My radiotherapy treatment was Stereotactic Ablative Radiotherapy (SABRE), it is a targeted treatment which gives an intense dose concentrated on the tumour while limiting the dose to the surrounding organs.  Unfortunately the SABRE radiotherapy can only be used on tumours less than 3cm, mine was just under 3cm, but if your mum's is larger than 3cm, the other radiotherapy she will get is just as effective.

The only treatment centre I could have the SABRE was 50 miles away.....so I was given hospital transport, which was a godsend.  Although my son was very supportive and took me to most of my investigations and tests, it would have been impossible for him to take so much time off work, every other day for three weeks.  If your mum's treatment centre is some distance away she can ask for hospital transport.  This is usually arranged by the Ambulance Service in your area, although it is not an ambulance, it is usually a private car driven by a volunteer driver for the service.  I was picked up at my door, taken to the hospital for my treatment and then dropped off back at my door...all at no cost to me.  It does involve most of the day though, because other patients are also picked up and and dropped off from different hospitals in the area, so the days where long in my case because it was a 100 mile round trip and I was always the last to get dropped off because I lived the furthest away.

Hope this information helps.

Ann 

Ok, thanks. I had hoped/plan to have mum move in with me so I can take her, she’s insisting on staying at home for comfort etc, they’ve said they can likely sort transport. I expected it to be long days for her, hospital is 40 odd miles away. I work full time but would have gone off sick if needed.

mum lives alone, with her dog. Is there anything I can do to support/buy? I’m planning to make up a bag for her to take to hospital and stuff for home, water bottle/blanket/aveeno/aloe Vera/ginger biscuits. And I plan to go every weekend to stock her up with food/clean etc. just want to make it as easy as I can for her, so any practical things you can suggest would be appreciated. 

will be good to meet radiotherapist to know proper plan. X

Apart from taking a sandwiches or snack, your mum won't need a bag to take to hospital, the radiotherapy treatment only takes about 15mins and the wait times to have it can vary The centre where she will be having the treatment, like most cancer treatment centres, will have an area with free tea and coffee and water dispenser, and usually there are a few packs of biscuits for a snack.

I found the longest wait was for the hospital transport to come and pick me up, which sometimes was an hour to hour and a half.  This was because they where travelling here there and everywhere picking up other patients from different hospitals. The centre where I had my treatment was lovely and had a "pick-up lounge" with lovely comfy chairs, a television and tea, coffee and biscuits available free.

With regard to stocking up food etc., that's a really good idea, although your mum's appetite might change.  I stocked up my freezer before my treatment started with ready meals because I knew I would be too tired to be bothered to cook, but as I said, in my case my appetite dropped and the thought of eating hot food didn't appeal so much, I ate mostly toast, cornflakes with lots of cold milk, and lots of fruit.  

Ann

Hi,

do you mind if I ask how old your mum is? My granddad maybe having radiotherapy as they're not sure if surgery is the best option. They need an MDT to decide but me personally I feel radio would be better for him, he hasn't received a definitive diagnosis yet still awaiting a biopsy as bronchoscopy was negative but PET positive x

katie x

Hi Katie, mum is 79, 80 this year. The waiting is awful isn’t it. mum ended up having 3 broncoscopys for various reasons but they go there in the end. 
I think the reason they advised against surgery is coz she has COPD anyway, so surgery is always risky, and losing some lung, would affect her breathing even more. If your grandads in good health, it might be good to get it all done and dusted, but obviously trust the experts. We are meeting oncologist on Friday to get full radiotherapy plan x