Hi Cazzza, 

A very warm welcome to Cancer Chat and thank you for sharing your story. I am sorry to hear that you have been diagnosed with high grade undifferentiated pleomorphic sarcoma in your shoulder and I thought I would share with you the information we have on our website on soft tissue sarcoma cancers and I would also like to mention the charity Sarcoma UK which has more specific information on undifferentiated pleomorphic sarcoma including on treatment like surgery and radiotherapy. But as nothing replaces hearing from personal experiences, I hope that you will hear from others here who have had the same diagnosis and who have had the surgery before. You are right that no two cases are alike but as you rightly pointed out, it's always useful and interesting to get other members' insights into what their experience post surgery was like. It sounds like you have already browsed our forum for posts you might wish to respond to - all you need to do is type in relevant keywords in our forum search which is located at the top and reply to any you feel would be of interest to you. For example, I have found this thread on undifferentiated pleomorphic sarcoma by Porrk - though the post is a couple of years old, this member was at the time waiting for treatment and it would be interesting to find out how it all went and hear from their experience. There was also another member I noticed MomoLennon who posted this thread on their sarcoma diagnosis and even though they posted a while ago, this member not only had an undifferentiated pleomorphic sarcoma diagnosis but it was also located in their left shoulder blade so quite similar in location to where yours is. Feel free to respond to any thread that you feel you would like to engage with. 

You are right that when something is very rare, it can be even more of a struggle to find useful and detailed information or to connect with another person who has had the very same thing before and hopefully coming on this forum will help you get in touch with others who have had the same diagnosis before and have had treatment for it. I hope that they will pop by and say hello and that they will be happy to share their story with you. 

We also have a nurse helpline you can ring on this free number 0808 800 4040 - it is open Monday to Friday from 9am to 5pm and don't hesitate to give them a call if there is anything you want to talk through with them. 

Best of luck with the start of your treatment. I hope that it all goes well for you. 

Best wishes, 

Lucie, Cancer Chat Moderator

Thank you Lucie for your considered reply.  I have already been trawling the various places you mentioned but none of them give me the information I am looking for.  I’ve also read a number of academic studies on sarcoma.  Interesting, but they don’t tell you what it’s really like.

Thank you so much for taking the trouble to point out the threads of older conversations that you thought might be of interest to me.  I have managed to connect with MonoLennon who is very kindly starting to help me understand her journey after surgery.   

Hi Cazzza

thus may not be very relevant to you, but I had Stage 3(B) Sarcoma with a large tumour in muscle above my knee (myofibroblstic sarcoma).

the local hospital was not particularly effective (GP had to push for a faster MRI as hospital thought it was a fatty limp only). Immediately after MRI I was sent to the regional Sarcoma centre (25 miles away) who were brilliant. The doctor was clear and the specialist Sarcoma nurses brilliant and had time to talk to me in person and over phone and via email (on 4-5 occasions). Told me exactly what tto expect and rough time scales - same as what doctor told me but more time to explain etc.

The wait for radiotherapy (5 days per week for 6 weeks) seemed very long (several weeks including fitting the frame to keep me still for each x-ray) but with hindsight wasn’t too much. Best thing  for me was to keep lots of walking and visited somewhere interesting on way to daily x-ray (so daily trip was somewhere interesting with x-ray as just an add-on). During radiotherapy I felt tumour expanding (it was worrying at the time but turned out to be the tumour disintegrating). Key was to try not to be stressed (as much as possible) take easiest way to radiotherapy and don’t let others push you to go the way they think (I found train much more relaxing than car).

i kept in contact with Sarcoma nurse most weeks during radiotherapy (very reassuring and I could discuss my various fears).

The surgery was a month or so later and was changed a week before operation (ended up bigger than expected). But result great for cancer (2.5 years and no sight of it). I have not been worried about it much since.

sorry to bore you with too much detail.

Thanks for your reply Cazza.

my case is very different I think, but some of may be of interest/use.

• in the end I had an amputation of my leg (almost all of it), so I have focused on learning to walk again (successfully even without walking sticks). One advantage is that when I (rarely) worry  about my cancer I think - the big issue is my leg and walking, while if I feel sad or frustrated about my leg I think - thank goodness i got rid of the cancer. So I play the cancer off against the leg and don‘t feel too bad (& never think I have both issues on top of each other). Medical staff have been brilliant but they respond to you making a lot of effort. 
• regarding your questions: 
• i found the pain extremely well managed (morphine for a week or so then Gabapentin for a couple of months then Paracetamol then nothing after about 4 months. I reduced the drugs as soon as I could but strictly followed the instructions of doctors (I cut the drugs down by a tablet a day as instructed and no quicker). Of course everyone and each drug is different.
• Very important to me was that I did a reasonable amount of exercise before the operation, so I was reasonably fit for my age and it helped my recovery and  learning to walk etc 
• I did all physio exercises as instructed and asked them if I was doing them right, & still do my exercises fully every morning before I get out of bed - this helps recovery and improvement I think
• also important to me was to get outside for a walk everyday- helps me relax and is enjoyable (mostly) and can be challenging (in terms of improving my walking).
• Meeting up with friend and not talking too much about my health issues is also important. I also took up Bridge as it gives me something new to focus on. Also I try to remember that my family members are also under stress and worried and I try to help out as much as possible.
• Not regretting past choices eg (amputation v not but more risk or recurrence). What‘s done is done and no point regretting or not. 
  
  
• sorry, it‘s a bit late and I may not be very clear. After the operation it’s a new phase of life and many old things and interests can continue - but I need to accept that some can not. Life now is much better than the alternative for me!

Hi Dunedin

Thank you for taking more time to reply.  You are both inspirational and so resilient.  

The A word has not been mentioned and hopefully won’t be required.  The medics are not massively forthcoming with me which does make me fear the worst.  They have refused to discuss prognosis and have not even told me grade and stage.  I have drawn my own conclusions and sought answers elsewhere which is probably extremely unhelpful and has frightened me.  

However on the plus side I can see quite some shrinkage in my tumour and I’m 10 days on from finishing my radiotherapy so that must be a good sign, though it’s probably now back to  the size it was when I first went to my GP.

Your comments about not regretting past choices is a very positive one and one I will seek to employ.  I also relate to not talking about your health.   It helped me in the beginning to come to terms with, believe even, what was happening but now to most people I say ‘I’m fine’ rather than having to wallow through it all.  I don’t want sympathy I just want to be treated as if I am normal and still me.

Keep smiling and keep up the walking.  You have definitely cheered up and inspired a girl who is now perhaps a little less scared   

Cazzza x