Something Huge To Be Grateful For

Hi SwanneeSecrets, I was also diagnosed with a primary Pancoast tumour last July aged 51 and I had 4 chemo treatments (cisplatin and pemetrexed) along with 33 treatments (5 days a week) of radiotherapy which apparently shrunk the tumour but unfortunately it had spread to my adrenal glands, so I am now on immunotherapy (atezolizumab). My PET Scan showed that I had a primary breast cancer too and I had a successful lumpectomony nearly 3 weeks ago now. Even with all that your post has given me hope and I am so glad for you that the shoulder pain has gone, I am hoping that with a couple more immunotherapy treatments mine will too.  The pain in my shoulder/arm has changed continually so I believe the treatments are working but the pain really is indescribable though some days are better than others.  Though if not for the pain I would not have known I had cancer at all and would have found out far later than I did.  There's always a silver lining on them there clouds

Hi SuwanneeSecrets

Well done you! Firstly for the fantastic results. Secondly for posting such positive advice.

Kegsy x

Hi SuwanneeSecrets that is truly wondeful news. I am so happy for you. That is just what we need right now, some happy positive news. 

Thank you for sharing. 

Hi K

You are so very right about that horrible, indescribable pain being a blessing in getting a diagnosis.  I felt like something was tearing my body apart and no pain medication ever gave relief.  My pain started in July last year and the primary doctor played around with cortisone shots, massage therapy, even an arm sling until October when he finally ordered a C-Scan.  I cried through those first few treatments in radiology the positioning was so painful but in no time the pain just disappeared.  

So sorry yours has spread but honestly the chemo options available now, you can and will beat this thing.  Is your cancer nsclc or small cell?  Twenty years ago the prognosis was grim for Pancoast Tumors but my first visit with my oncologist he got right up in my face and said “I think you’re going to be fine”.

Keep in touch,  Dee

Hi Suwannee,

My pain started late March, early Apr last year, originally thought it was RSI due to change of work environment from office to home, Doc gave me exercises to do and I used a sling for a bit too, though still using a few painkillers.  Due to Covid and a nurse telling me that Physio's were shut anyway and Docs couldn't do anything I didn't get diagnosed til July.  They were hoping we could shrink it enough to operate but that's out of the question now, but positive about the immunotherapy and as I said, the pain is nothing like it was so hopeful that this can be managed successfully.  My cancer is adenocarcinoma which I believe is NSCLC, I haven't asked too much about things, I don't even know what size it is, but my logic is that I have cancer once but the docs etc are dealing with it every day so I am totally trusting them.

Due to have a scan in about 3 months, so may ask more info nearer the time.

K

Hi K,

Can’t imagine being told to exercise that pain area.

You must be your oncologist’s favorite patient K, lol.  I go into my appointment with not only my list of questions but questions my son has thought of.  Like I said before, my radiation was cut a few treatments short because of burns the size of soccer balls front and back.  At the same time my blood counts were falling so my oncologist made me take a month off all treatment to recover.  I hated that because I was sure the radiation was shrinking the tumor so my first visit after the recovery period I asked if I could get more radiation.  He said, “You want more radiation?  Well Dee, that’s the first time anyone ever asked me for more radiation”.

I’m sure your next scan will show shrinkage.  Keep expecting that and stay positive!!!

Dee

Thank you for this. It's really encouraging to see that others with the same problem as my husband are getting through this. 

My husband has a similar diagnosis, 8cm mass, 2 vertebrae have been invaded and half of both of them is destroyed.  That sent shivers down my spine, but the oncologist seemed to think this was perfectly normal and now we're just worrying about the spinal cord becoming compressed with the radiotherapy causing additional damage. 

I see from your post and others in this steam everyone's getting immunotherapy,  the oncologist says that my husband isn't a candidate for that. Wrong type of cell or something.  I just hope and pray that it won't make a difference too much, and that he will get the results we're hoping for as quickly. 

When your say 'After the third radiation treatment the pain disappeared overnight.'  Do you mean the 3rd day? Or 3rd round of radiotherapy? 

My husband is getting chemo in cycles, and he's got different chemo names. Something beginning with C and another one beginning with V. And he's getting those once a week too, but having a week off between cycles.