Breathlessness

Hello All - I had my debulking op in mid October last year and am still finding myself breathless going upstairs hills etc. I feel I should be improving by know, but can not find any type of time scale to gauge myself on the internet. I don't see my surgeon again until the end of May. Is this a common complaint or should I be concerned. I am currently on watch and wait and worry all the time about recurrence especially as breathlessness was a symptom at my diagnosis. Any advise greatly appreciated.

[LittleSan]

I'd get it checked out Lynn. It could be anything or nothing but you're better getting your mind at ease at the very least.

Hope you feel better soon. Xx

[Hidden in reply to LittleSan]

Many thanks - I was due to have a CT scan yesterday, I wont bore you with the details but that didn't happen, I have a new date for mid April, so hence the anxiety.....more waiting!

I might go to docs and perhaps he will send me for a chest x-ray.

[Seasun36-uk]

Hi Lyn,

I had/have the same! Finished Avastin August 18. The breathlessness seems to come & go a bit. Anyway a couple of months ago I went to the GP & he said it could be small pulmonary emboli. I had a constraint CT of my lungs & all was well. So it’s worth checking out.

I still get breathless on inclines - I put it down to a general lack of fitness as a result of all my treatment, anaesthetic etc and am trying to push myself more with walks etc.

[Hidden in reply to Seasun36-uk]

Thank you xx

[Lindaura]

Dear Lyn,

I just read your up to date history and I see that you only finished Chemo in December.

It took me about 6 months to get my strength back to about 75% of pre Chemo normal. Inclines are still a problem and I almost always need to rest in my bedroom every afternoon.

However, the way your CA-125 is rising, I would suspect a recurrence.

But I see you had a scan yesterday and you will get the results tomorrow, including a Scan of your lungs.

On my first hospitalisation, it turned out I had several blood clots in my lungs caused by the cancer. They made me totally breathless.

I hope you are not having a recurrence, but that seems to be the rule and not the exception.

I am just completeing Carbo and Caelyx, a really good regimen for my first recurrence, so even though you might be recurring sooner than I (6 months for me) , you have lots of options to keep Cancer at bay in the future.

I wish you the best of luck for your scan,

Laura

[Hidden in reply to Lindaura]

Hi Laura - the CT scan didn't happen so have to wait until mid April, I also hope it is not a recurrence but it is the first thing that springs to mind which I am sure is the same for all of us. It hadn't occurred to me that it could be as a result of chemo. My CNS nurse told me in December it was caused by the operation.

[Lindaura in reply to Hidden]

I can’t believe your CNS said that!

But it is a combination of the two. Chemo has lasting effects, but we recover from the ops eventually, really in about three months, but the Chemo just takes it out of us, plus, I was mostly bedridden during my first line treatment, so it took a while to get going again.

Meanwhile, I object to your waiting until April go that scan!

I think it is bull to wait and see this long.

If it is a recurrence, who can say what sinister tricks it is up to?

You do NOT want it invading any organs or lymph nodes.

Please talk to your CNS to arrange an urgent appointment with your consultant.

I am sorry to be so agro, but we have to look after ourselves!

Good luck with this. The best of wishes and hugs,

Laura

[Hidden in reply to Lindaura]

Thank you Laura - its my fault not the hospital, we have a holiday booked and I dont want to cancel, if I had any other symptoms I agree it would be more urgent, but I think I am ok to wait until we get back. Sun Sea and Sangria is what I desperately need at the moment.

[Manchesterlady]

It’s awful that you have to wait so long for your scan. Good idea to get your doctor to arrange a chest x Ray . I’ve never seen my surgeon since my operation.its so hard to stay rational when your so worried, and breathless. I can’t offer you any advise . Please let us know how you get on .

Sheila xx

[Hidden in reply to Manchesterlady]

Thank you Sheila, I could have had an earlier appointment but we have a holiday booked and I didn't want to cancel, I really really need a change of scene.

[Manchesterlady in reply to Hidden]

So understand where your coming from on needing a change , we desperately want to go to Majorca, but I’m so afraid of being ill . See the prof in two weeks time , just for bloods , no scan (fingers crossed) so if he’s in agreement we will be going, insured or not !! Where are you going to ?

I hate this horrible disease

Take care and enjoy your holiday

Sheila 🌞🌞🌞

[Hidden in reply to Manchesterlady]

We are going to Menorca, our friend has an apartment that we can borrow. Really need the sun on my face. We also have a cruise to the Med booked in May, I really don't have the time for this cancer malarkey, so it can just bugger off. 😎🤣 Go book your holiday! try World First for insurance our cruise is costing £106 compared to the £750 that saga wanted. Take care xx

[Neona]

Did you have chemo? I had severe breathing problems which started after 3 chemo infusions. However I also had 2 general anaesthetics at this time after my dog bit me. The breathlessness started immediately after the op. I had blood tests, xray and CT scan but the only thing found was some kidney damage. The breathing improved after 3 or 4 weeks but the problem returned and improved again.

[Hidden in reply to Neona]

Hello yes I had 3 carbo & 3 Taxol but I finished the course at the end of November so I didn't think it would still be effecting me now, maybe I am not allowing enough time to heal?

[Neona in reply to Hidden]

Maybe ask your GP about drug induced pneumonitis. My GP originally gave me a short course of steroids. If didn’t help but worth a try.

[delia2]

I had a big problem with breathlessness during and after chemo and it was from anemia. What is your hemoglobin? Mine was 9 something and they don’t do transfusions til below 8 but I had 2 transfusions finally and the cured the breathlessness and fatigue.

[Hidden in reply to delia2]

I dont know my haemoglobin, but I will get my blood checked. I am always being told by the medical profession that I am slightly anaemic so maybe chemo has made the condition worse.

[Eriksendi]

I finished my chemo 15 months ago and my breathing still isn’t right. Ive had a number of Ct scans, pet scan, chest X-ray and all is ok. Worth getting it checked out though. Hope all ok for you x x

[Roobarb1]

I had this during chemo and after chemo finished, remember not being able to walk up a hill and being breathless and also having kind of palpitations, it was anaemia, and like delia I had 2 lots of blood transfusions - my bloods were 8 something, it’s a very common thing according to the hospital. I’d get your gp to check your blood.

Xxx

[Hidden in reply to Roobarb1]

Thank you - I will get my blood checked.

[LittleSan]

How are you Lynn? Much better I hope. Xx

[Hidden in reply to LittleSan]

Thank you not feeling too bad, went to the docs who has done a full blood count to check for anaemia and said he also thinks I have a slight chest infection.........so on antibiotics. Fingers crossed it gets sorted before my hols, do so want to go on holiday fit and well! Hope you are well and enjoying the weekend. xx

[LittleSan in reply to Hidden]

Everything crossed you get sorted for your hols. Glad you're feeling a bit better. I'm watching my other half decorating 👍🏻😘 Xx