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CurlyCurly's avatar
4 years ago

Breathlessness

Hi Ladies
I've been diagnosed with breast cancer in March 2020, had lumpectomy in April 2000, 4 months of Chemo (taxotere and cyclophosphamide) April - July, bilateral mastectomy in August, switching of expanders for the implants surgery in November 2020 and finally bilateral fat grafting surgery in April 2021. Before the diagnosis i was super fit, I used to exercise 1.5 hours 7 days per week. I don't expect to be able to exercise with the same intensity as before (as obviously my level of fitness has dropped significantly), but it looks like I am unable to exercise at all, though it is been more then 1 year since chemo. I've started exercising gently in January (only been walking before that)..some light weights, very light jogs...but towards the end would start feeling lack of breathing..so bad that i find it impossible to have conversation for a few after that (cough and gasping for breath)..it then propagates into the pain under my eyelids and I go to bed with heavy breathing and then wake up at 5am with horrible headache located at the upper front of my face. I have to take panadol/panadeine in order to be able to go though the day. Breathlessness then lasts for a few days and even 15 min walk makes it worse and 5am headaches almost became part of life. It takes about 5 days of complete inactivity (only walk in the house) for the symptoms to go away. I then try exercise again and even half an hour of very light weights cause breathlessness again (i don't feel any tiredness during the exercise, I am not pushing it at all, breathless come about 5 mins after i finish). I've seen cardiologist and done all the tests including the treadmill run, they said my heart is fine, i've seen respiratory specialist, she have done a few test and said i have no asthma...She gave me Sembicroft puffer, it doesn't help at all...I've done my second Pfizer 3 weeks ago and things gone worse..i am now constantly breathless...even after 8 hours sleep, can't talk due to cough and suffocation. Any talking makes symptoms worse...Recent blood test indicated I have minor inflammation...but it is so minor that GP said there is no treatment. My oxygen saturation is ok, my blood pressure is ok...I am now working with naturopath hoping she can help me to get rid of toxins (obviously 13 hours under anesthetics and 4 months of strong chemo have taken its tall) , she's given me magnesium and CQ10, but I have not noticed any improvement so far. I really don't know where to look for help...I feel like I am beating my head against the wall...doctors have done al the test and all is good, but i can only sit, sleep or walk 15 min...anything more makes me breathless and causes headaches that last for days... I was wondering if anyone here have gone through similar thing and have they been able to recover..? not being able to lead active lifestyle...this is no life for me... 
I've made an appointment to se CancerFit in Greenwich...they are my last hope

10 Replies

  • Thank you @Lisa1407
    my previous x-ray was in a match this year, my symptoms were just difficult breathing from exercise , but nothing like now
    This is the post operative pneumonia as the pain under my right shoulder blade started immediately after the surgery (in April this year) , but my plastic surgeons secretary never got me in touch with the doctor, she just kelp repeating I’ve got pain due to the ka j if exercise and it would fix itself in 3 months time once I’ve completely recovered abd started exercising. Bu everything only got worse 
  • Good you have a diagnosis @CurlyCurly. I am not sure why pneumonia didn't show up on your lung x-ray. They obviously now think you have bacterial pneumonia and therefore would not give you steroids (as they make the infection worse). However, if the antibiotics don't help, keep pursing and perhaps a course of steroids may help. 
  • Thank you very much @arpie
    agree….very strange 
    I’ll try to obtain the images 
  • I am so glad you have a diagnosis now, @CurlyCurly - and I hope the antibiotics kick in soon & the breathlessness stops asap. xx  Surprised that didn't show on the xray!  Might be worth getting it 're-read' by an independent radiologist!! 

    (hmmm ... Tho I had my mammogram 're-read' by BreastScreen NSW after they missed my BC - and they STILL missed it, 2nd time around!  grrr)

    Re a specialist diagnostician - we were lucky to have one locally (but he has recently retired) and a school mate of my husband's was also one (also recently retired.)  They are also called "General Physicians - your GP should be aware of any locally  .....  General physicians are consultants who care for patients with special or difficult problems. General physicians only see patients who are referred to them by other doctors, usually by the patient's own general practitioner.

    https://www.imsanz.org.au/about-us/what-is-a-general-physician


  • thank you @Lisa1407
    just got the results of CT scan of the spine 
    I’ve got pneumonia of the right lung 
    have started the course of antibiotics today.  
    Steroids have not been suggested to me though 
  • Sorry @CurlyCurly that you are having so much trouble. I am wondering if anyone has suggested pneumonitis. It is inflammation of the lungs and cannot be seen on Xray. You can see it on a CT scan though - the lungs look like opaque ground glass. It would also explain the blood test result suggesting low grade inflammation. Several of the chemotherapy agents can cause pneumonitis including cyclophosphamide and the taxanes. I got it when I was on Afinitor. You should suggest a CT scan to your doctor. It is usually treated by removing whatever is causing the inflammation and a course of steroids. If it is pneumonitis it is important to have it diagnosed and treated as it can result in your lungs filling with fluid. If not one has ruled out pneumonitis it is certainly worth a shot. Good luck. xxx
  • Thank you very much @arpie..I've done lung xray - they can't see anything wrong...where and how will I find specialist diagnostician? Thank you very much @iserbrown...I'll try the forth Pilates session you've sent as I am now 5 months after the last surgery
  • I am So sorry you are having these difficulties @CurlyCurly and it definitely doesn't sound 'right' to me! Has your GP or medical team suggested an xray or scan of your lungs?   Sometimes a specialist diagnostician is needed to 'think outside the square' ....  you definitely need a diagnosis & hopefully a solution, so you can get on with life!

    I also have 'chronic inflammation' & have had for 10 years or so (well before I was diagnosed with BC) and I put it down to my ongoing arthritis.  

    Take care & all the best xx