Had upper right lobectomy and node removal in July 2013

Can anyone tell me if I will be breathless for a long time or will it gradually fade???

I was also told to claim the new PIP by Macmillan. All my forms were received by DWP at beg of August and they sent them to ATOS but I havent heard anything yet. I have to have a face to face assessment but when I called ATOS i found the receptionist really rude. I enquired as to when my assessment would be likely and she informed me that when an appointment became available in my area they would contact me. I asked very politely if it was liley to be i the next month or two as they had been given my file by DWP on 17th August as was informed they cant tell me anything more !!!! Has anyone else had this while waiting to claim PIP - I am also having a gastroscopy and another CT in november to track another unidentified nodule in my other lung.

8 Replies

  • Hey Sal... I had total pneumonectomy (left lung removed) 3 years ago.. and yes takes a while....I am still breathless sometimes.. but I can still sing.. which was my way of making end meet...have to sit though....

    Im from Australia... so not sure of the terminology as PIP ATOS not trying to sound ignorant...

    Hope things go well for you

    Hugs xo

  • Hi Sal I had upper middle and part of lower right lobes removed. That was in March this year. I am not bad,back at work and doing normal stuff but I don't have the stamina I did before.I applied for PIP under special rules because my cancer is now incurable.So I didn't need an interview or anything.Its 3 weeks and 4 days since I applied and its hit my bank account this morning.Hurrah! I hope you get a result soon.Julie x

  • Hi Jujuju I am so sorry to hear that. Thinking of you and anytime you want someone to have a rant at feel free xxx

  • When Chris was diagnosed with NSCLC we were told to contact DWP and quote special rules to apply for DLA as it was then and get a form DS1500 from our GP. The forms arrived within 2 days and Macmillan helped fill them out. Because it is cancer I thought there was no involvement of ATOS. I would contact Macmillan to see if they can help it doesn't seem right what is happening to you. I hope you get this resolved ATOS are not the best friend of people with disabilities.


  • Hi SAl, I had part of my lower lung left lobe and surrounding tissue removed. I am a little breathless walking and my operation was just under 2 years ago. Having said that I joined a dance class recently and although I couldn't keep up with the fast pace of things I did pretty well. I tried to claim some money using an EASA form. I may have got that wrong but even though I had a doctors cert and an oncologist complete the form, the jobcentre decided I was to get nowt.

  • Hi Sal,

    January 2009 I had a upper right lobectomy and the removal of local lymph nodes,so we have much in common.I do find breathlessness a bit annoying at times,there are breathing techniques you can use to reduce it,I would discuss this with my GP with a view to arranging an appointment with a pulmonary physiotherapist at least I think thats what they are called.We had one visit our lung cancer support group last year to give us a talk on improving breathing,after a very interesting talk,she closed by saying,she would discuss with her managers about arranging a regular class for us,she would attend, to teach us appropriate exercises depending on each individuals abilities and also breathing techniques,our group were absolutely delighted by her offer.Much to our dismay,we heard later,her managers turned our request down,apparently there were only two of these specialists in the whole of Scotland,she was too valuable a resource to take our class.Personally,I am a bit overweight,but I am working on it,I do believe if I could lose a bit of weight this would help with my breathing problems,I have also joined a gym,so Mondays to Friday I use the gym,swimming pool,sauna,steam room and jacuzzi.The gym also runs yoga classes,Tuesday and Friday for 1 and a half hour sessions,I can really recommend these to you,yoga its all about breathing,relaxation and stretching muscles you never even knew you had,it is really a perfect compliment to the gymwork I am doing.Does breathlessness diminish with time you ask?,I will offer you a personal indicator not based on science of course,but my daughter lives in the second floor in a block of flats,after I recovered from my surgery I would visit my daughter,climbing those stairs of hers were really a challenge to me,I would have to stop mid climb two or three times to get my breath back,then having to sit on her sofa for a couple of minutes to recover my breath.Today nearly five years later,I can climb her stairs no problem,I do think my gymming,swimming and yoga-ing are certainly a factor in my improved breathing.

  • Hi Sal62, I had upper right lobectomy and partial removal of middle lobe on 10 April this year. Like you I thought breathlessness would not improve but have found it does, slowly. I had to do my walks at my own pace - better on my own with no-one 'egging me on' and waiting for me when I stop! I found singing a great lung workout, joining the church choir to help boost the number for an upcoming event. I have now joined a local choir sponsored by the British Lung foundation.I went back swimming after my wounds healed. Can swim just as well on my back as before but had to build up stamina with the front crawl - still difficult.Find 4 flights of stairs hard at work but avoid the lift as I know I need the workout. My advice just keep pushing at your own pace.... Sorry I don't know anything bout PIPa

  • Hi Sal, Like some of the other guys I had a right lobectomy 2 years ago along with chemo. I tried to keep fit by walking as much as I could. At first it was only 2 or 3 hundred yards around the block but I gradually worked up and 6

    months later I was playing golf once a week and back at my part time job. Like Eric I believe you can get fitter and less breathless by gradually working at it. You should ask your McMillan nurse if the DWP can give any emergency assistance.

    Good Luck Rab

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