Rather mixed and still left hanging in mid air. What was seen as suspicious, has after a conference, turned out to be fibrosis, scarring from the radiotherapy, so not cancer after all. Another CTScan has been ordered for 3 months time. A sigh of relief, but then he said "they have spotted something in my bowels" and now have to have a Colonoscopy. Oh what Joy!
He has also told me to get in touch with the COPD team about my Emphysema, I know nothing of a COPD team at my surgery, nothing has ever been said about this to me. I have just got on with it, I hardly ever need to see the GP anyway, my last visit was in January just for a medicine review and October last year as a follow up to get a X-ray ordered after having Pneumonia. Of course I get out of breath, but I am acclimatised to it after 4 years, it does not bother me, I do not panic about it, I know I will recover, I might splutter a few choice words at the time though.
Yes, my breathing has deteriorated, which is to be expected, with the fact I no longer exercise 8 hours a day with working full time. My o2 sats are 92/94 so I still have no need for supplementary o2. Plus I have had the dratted virus. I am still independent and can do most things including the three big flights of stairs, albeit at a slower pace. I just cannot see how I can benefit from seeing a COPD team, the first thing they will do when they get here is to moan about the stairs, everyone does. The only things I cannot do is stand over a stove, cooking, or go outside whilst wood burners are belching out their filthy pollution.
My saving grace is I do not produce much mucus and do not normally cough which really helps having seen others with COPD struggle badly with both. I can normally still breathe freely, without any congestion even though it is still at a rapid pace.
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OMG good news and not so good new 2 greys, glad to hear you can still do most things 2 greys, hope all goes well for any forthcoming scans, tests and procedures.
Glad to know your suspicious area was ok but how stressful for you!
And now the colonoscopy you poor thing!
I suppose just see if the COPD team can offer any proper support and if you think not you can say at the surgery.
I can understand you not wanting to engage with them because the fact you did not know about them shows they are maybe not exactly sign posting their copd patients to help!
It sounds like you are coping really well with your symptoms and managing to do things but you can still ask for help if you need it
Mixed feelings. You do well breathing-wise. Well done. I think all that exercise must still be having a beneficial effect. I wonder if they were thinking of a community team? We have a COPD nurse who is supposed to look after patients at home.
Lol. What COPD team? I am sure the nurse would think laugh if I asked where the team was. I know you are disappointed that you now need a colonoscopy but at least the other news did not disappoint. That you are still fairly independent in your life after all you have been though is good news. Hopefully there will be more good news to come.
Our surgery have an asthma nurse who I was supposed to see every year, She informed me that i had copd. Told her I have bronchiectasis . Have nt seen her since. !
As long as you have the mild sedation my view is that they are a 'walk in the park' and certainly worth the effort to get a 5 year all clear on the colon cancer front (or early detection of something that can be treated if caught early).
Mixed news. I hope that you go on all right with the colonoscopy.
As for a COPD team, I wonder if they meant the community respiratory team. My area has one and I was referred to it on 3rd August to be monitored regularly following my hospital admission in July. It was thought to be needed due to my advanced lung disease. To date, I've heard zilch from them.
You do amazingly well with your lung disease, though. I couldn't climb 3 flights of stairs if my life depended on it!
A mixed appointment 2greys! Hopefully won’t take too long for your colonoscopy! Not that you want to have anything more done! Sounds like you have more than enough to deal with already! But it’s the waiting that’s hard I find.
But at least there was good news from your scan otherwise.
No copd team at our surgery either 2gs, but I do go to respiratory dept. At hospital and they gave their opinion at the dmt meetings before and after my op. If the colonoscopy does not appeal, and why would it, you can ask for a virtual colonoscopy which is less invasive and there is no need for the preparation part which always affects my breathing. Hope you get on ok it's a never ending saga. Today I was promised a phone call with the results of my tumour removal, what a surprise when the colorectal nurse said your results are not yet available. Why tell me the 14th Sept....still no news is good news. I hope. The last 6 months have been a nightmare. Onwards and upwards, good luck. Jane
So pleased 2grwys that you can most things and are very independent. I really hope you continue as you are, and I hope all goes well with your Colonoscopy. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxx
But it is the truth, the whole truth and nothing but the truth. The level of 2.5pm particles is horrendous. It gets deep down into the lungs and from there it enters the blood stream as well causing both lung and heart damage. That is without mentioning the foul acrid smell that travels for long distances. 10 mins of exposure whilst walking (exercising) guarantees my being laid up with breathing problems for the next 24 hours.
I do not know how people cope with the smoke from wild fires in the US and Canada or a few months ago the ones in Australia that could be smelled all the way to New Zealand!.
Absolutely agree with you. When I was a "youngster" we used to burn rubbish in our back yard. It was the done thing. Then there were too many many people and it was banned. Great! Then years later people decided that wood burning fires were lovely for winter and new houses had these put in. I went past one new development on a hill one winter and all I could see was smoke billowing up from nearly every house. Crazy! Try to tell people it should be banned and you are the worst person for trying to stop their enjoyment of a warm fire. It's natural not polluting!
I lived in a third story unit/apartment. We had to keep the window closed as the smoke from the 2 story house next door was out of their view but very much coming in to our window.
I still don't get why we banned back yard burning all those years ago but allowed chimneys in new houses. People's memories are very short.
PS Good to know some facts about the 2.5pm particles. I can use that next time.
Total agreement 2greys and would you mind/like to put down in words, something quite "in your face" for me to read out across the fence 🐿as so far I've neighbours on both sides who have wood burners but also use wood to make a warm fire to sit around at night.(done in a container that is meant for that purpose)? 🐿🌈
My last colonoscopy I discovered the pictures were now in colour, no longer various shades of grey, made interesting watching, I could tell the gent what I had seen, he was not very impressed. I was counting the Crohn's ulcers!! They had refused me the sedative, as I lived alone, was a smoker and had not arranged for someone to stay overnight, in case I decided to set fire to my flat!!! I said I had Crohn's not full scale dementia/had never been an arsonist.
Oh 2greys you are such an inspiration, I continually quote you to John trying to get him to exercise more. So glad your PET scan was OK, I hope John’s will turn out the same. Sorry you now have this other problem but hopefully this will also turn out fine. Love Carole
Yes, I hope that John's turn out okay as well. So now the puzzle of why my breathing took a bit of a dive, scarring caused by Fibrosis, although that was on my quiet list of possibilities. Also probably why the Oncologist wants me to get in touch with this "COPD Team" that I know nothing about. Although I do not think they could improve things, like many here I am on the maximum inhaler medication as well as the maximum inhaled corticosteroids. The only thing left may be permanent oral steroids which I will try to avoid like the plague. At this point I am still coping well, although that is subjective, what others think may be as struggling too much, considering I have Ischaemic Heart Disease, but until a Cardiologist says slow down or stop I will continue.
So pleased to hear about the lungs - that is really good news.
Hopefully the bowel situation will be resolved ASAP.
Some geographical areas are much better served by specialist services than others, so maybe that service does exist in your area? Sounds quite unlikely somehow.
There is often a huge gap between what even hospitals think exists and what’s actually on offer.
I remember my mother having a hip fracture and replacement, and being told that the GP would set up a team of people coming to the home when she was discharged. You can imagine what materialised. Nada.
I think there is a large element of truth in what you have said. I do not go running back and forth to the GP , he has already told me that he cannot help me anymore. I will see later, I am very busy today with workmen coming in causing too much noise (and mess) to be making phone calls.
Great news on the lungs , hopefully same with the colonoscopy. 😃 My husband is just like you - worked in a manual job despite suffering from emphysema for 12 years only having to give up four years ago at 69 . At that point his condition had deteriorated a lot , the GP dished out antibiotics and steroids that had no effect and offered nothing more until finally my daughter went to the surgery and demanded he be referred to someone who could ( if nothing else ) alleviate his suffering . A further visit from me the following week resulted in him finally being referred to the Respiratory Team . It is not based at the surgery but in the town centre and works independently of GPs . The team he deals with have been brilliant , teaching him how best to manage the condition, offering pulmonary rehabilitation and physiotherapy and always on the end of the phone to offer expert advice when needed . He sees a pulmonary consultant every six months and a separate appointment every six months with a specialist respiratory nurse . It feels like we have a back up team when needed even though, like you, my husband is a great believer in self help , good diet and keeping active . We had to fight to get this support but if , in the future , you feel you are not getting satisfaction from your GP insist you are referred to the respiratory team . Our own GP is now guided by them when it comes to medication and has actually said that they are the experts not him . Good luck with everything and carry on with those stairs 👏😃
You are correct on air pollution. I live outside a city but had to go into the city for work. I was sick, wheezing and fatigued for years until I finished up in an A&E and it was taken seriously. Turns out I have allergic lungs...not only asthma/mild COPD. Each time I went in to work my breathing worsened, my lungs got bigger in all the wrong ways and I was exhausted all the time. WFH and bingo I have less than 1/2 of the symptoms... pollution! It was finally determined by exposing me to airborne allergens and seeing what happened. I am allergic as it is to quite a number of things and carry an anapen but never thought air would be that polluted. Hopefully they test you too.
The article about exercise was really interesting. After I had the minor stroke I took up Hatha yoga, which I did for 11 years, then when that folded went to a group called motorcise, which gave you half an hour’s exercise on machines which supported exercise, rather like an electric bike. Then I joined an aquarobics group for disabled people. So I was doing supervised exercise for 20 years, which definitely kept me healthy. After that I trained for ministry in the Church of England, which kept me busy! In fact it is only in the last five years that exercise has been difficult. I couldn’t do the pulmonary rehabilitation. Since I am now 77 with enough comorbilities to write my own textbook I think I am entitled to stop now! So, 2greys, your article told a lot of truth, and I am sure that your three flights of stairs must provide enough exercise even for you. I hope the colonoscopy doesn’t find anything untoward as you have been through enough. All the best to you and Sharon x
I watched my mother die from bowel cancer, she was just 36 years old, I might have inherited the genes, there can be a heredity element to it. Although it is predominately something that younger people get, it is playing on my mind just a little. Once again I have to take my own advice, to try not to worry, it will not help one iota, it is what it is and the job of the professionals to worry about.
It is usual for bowel cancer to cause secondary lung cancer, but not the other way around. So that may a good sign. Metastasis of lung cancer is usually to the brain.
My husband, 78, has had cancer 4 times and is still in reasonable health. He had testicular cancer in 1970, with very fierce radiotherapy, skin cancer caused by the radiotherapy, prostate cancer 2016, and bowel cancer in 2018. He was checked for lung cancer and has regular blood tests, and so far so good. He has a stoma, which he manages very well. As he said to me just now, at least we are still here. You have a remarkably strong attitude, and I hope all goes well for you. Perhaps though you should think about moving away from three flights of stairs! All the best xx
When I can no longer manage the stairs properly then I will have to, at the moment it is not too bad. A lot depends on the timing of inhaler use and remembering to use the reliever first, although with only the four puffs a day to use, there are times when I am reluctant to use it, because I know I am going to need that puff later. A bit of a juggling act needed some days.
Yes, no more cancer and perhaps answers to a mystery of my breathing suddenly going downhill. I have no regrets with choosing radiotherapy though, the alternative was a lot worse.
Great news re non lung cancer. Hope you get the same result in respect of colonoscopy. I don't have a COPD Team at my GP surgery, but when I asked they referred me to the Respiratory Team covering the area. Good luck with everything.
Mixed bag there 2g- some good and some to think about. I think you are coping well fitness wise especially as you've retired now and not so active. Fingers crossed for colonoscopy and its result. I remember watching my last 2 colonoscopies on screen - the first with ulcers; the second showing they had disappeared for now- so in ulcerative colitis remission Take care. xx Anita
Good to hear your PET diagnosis of fibrosis vs cancer and wish you the best of results with your colonoscopy. My daughter and family are near the wildfires in Washington state and she says to go outside is like chewing smoke. Horrible for the folks and wildlife.
I can well imagine how bad it must be, I am not sure that even with all the windows and doors closed it would be tolerable for me. Of course, animals have lungs and hearts they can get damaged from the pollution as well as with us humans. A really terrible state of affairs.
As you say good and bad news 2greys. I wonder if your deterioration is down having covid rather than just lack of exercise. As for copd team some doctors are in cuckoo land, I do think you are lucky not to suffer the dreaded mucus and cough that alot of us have, which makes the condition so much worse. My friends doctor told her not to buy a bungalow when they sold their guest house, as he said the stairs were such good exercise, so although you may have slowed down climbing them it sounds like they are keeping you fit. Good luck with the colonoscopy x
No, I am for the most part over covid, the deterioratiation started to happen about 15 months ago. Now I know that fibrosis scarring is more the likely culprit the time scale seems right. I was told that I would be getting a face to face appointment after the the next CTscan for examination, covid rules willing of course. Covid might have also have not helped, as it has been found to cause fibrosis as well.
At least the cancer is not back and as a bonus I can keep my immune system with it not being compromised again by more radiotherapy. So I am happy about that. Even if the radiotherapy did cause some fibrosis.
As for my bowels I will just have to wait and see, it might be something there and just as easily be nothing at all. As for the "COPD Team", if I can get through to the surgery tomorrow, no mean feat in itself, I will know more.
Mixed bag, indeed. I’m pleased the lung turned out to be nothing too nasty, although still not fun. A colonoscopy isn’t the greatest experience but it’s bearable and I know you’re a tough cookie.
Take care and I do hope you get some support from this elusive COPD team.
My friend's 97 yr old mom always says, "Don't be too quick to give up your stairs!" Advice that served her well up to 95. We moved to one floor 17 yrs ago and I saw a difference within 7 yrs when I would visit my mom in her 3rd floor apt. Took the stairs down and the elevator up!
Thanks for the good vibes for my daughter and family. It's been horrendous. They live 20 miles from Seattle on a river and sheltering with family that lives next door, 4 dogs between them and her mom in law, who is not happy being away from her high rise senior apt. This year has given us wildfires, hurricanes, an election that I would not invite any of the candidates to my dining table and has turned us into interaction phobic obese winos, AND that's why my kids still don't know about my dilemma.... I need to go now and refill my merlot and get some cheese!!!😄😳😊 So grateful to have found this site. Good evening to all the warriors!
My husband as you know had Sabr a few months after yourself. Just before last Christmas he noticed the outer walls of his breast bone was different one side to the other. We mentioned to his Oncologist on the next appointment and action was quickly taken as he had not seen this before , long story shortened he also has fibrosis, a radiation side effect.
He just recently had a telephone appointment with the consultant, who had prior to the phone call arranged an X ray which we were able to get at a local hospital with all the covid
precautions, The X ray was OK and he seemed pleased with the results. The next consultation is going to be conducted in the same way. Because the treatment is so intense and a new type of application this is a new side effect.
I have a consult on Tues with a radiology oncologist at a CyberKnife treatment center and a first time appt Wed with an oncologist. This is the first I've heard of fibrosis as being a side effect. Were you told of this before treatment? I will be asking about this now.
Yes I was told, but it is only a local effect with the lesion/scarring at the site of the nodulel/tumour. That part of lung would be damaged anyway. With surgery it would have been removed along with a large part of the surrounding tissue as well and still have scarring or a massive bleed and have been fatal or my heart might have given up. I am not too concerned and still pleased with my choice.
You have to take into account that I only have 28% lung function anyway, surgery could have left me in a wheelchair with 24/7 of o2. Radiotherapy was an easy choice to make.
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