Changing treatment centres

[Jem68]

Hi, I am curious to know if anyone started with one hospital and moved to another mid treatment.  I feel things are being overlooked after informing various doctors.  I just don’t know how hard it is as don’t want to affect my Chemo course as on 2nd type.

thanks in advance 

[Peregrina]

Hello, I find myself in a similar situation and have had no success changing treatment centres. Have you had any luck changing centre’s and what decisions have you made around this ? Thankyou 🙏

[Jem68]

Hi Peregrina

I haven’t yet made the inquiries yet but going to tomorrow with another hospital and see if possible.  I’m hoping it’s easy to do but was worried it would affect my current treatment.  But I’ve been a bit dissatisfied of lately so feel good time to make a change or at least find options.  

[Peregrina]

Hello Jem68, I made some inquiries and followed them up . It seems you need a referral from either your GP or treating oncologist to change your treating centre. However, it becomes quite political and doctors do not like stepping on each other toes. Tomorrow I have my fourth chemo cycle out of twelve and have absolutely no confidence in my current treating centre. I have encountered some side effects not documented amongst the enormous list of possible side effects which have scared me and find the staff less than empathic. In my three cycles I have dealt with an unexplained rash, black spots on my tongue, neutropenia, oral thrush and now a DVT. My GP in Sydney will not get involved even though both my major surgeries were in Sydney. My current oncologist believes my expectations are “too high” and I am reluctant to discuss change of treating centres with him at this time for fear it will negatively impact upon my treatment. I feel stuck ! Please let me know how you go, any advice is very welcome. I don’t think I can do another 9 cycles in a treating centre that I have lost all confidence in. I wish you the very best of luck for tomorrow and hope you have a good outcome. 🙏

[LindaG]

Hi Peregrina, treatment is so hard and you really should have the kindest people around you at the medical centre. So sorry that’s not happening for you and hope you can find an alternative. My haematologist and his team were just so caring during my treatment. It just helped me get through it 💕. Linda G 

[smca]

I did not switch half way through but, my oncologist had me on keytruda too long (ignoring obvious symptoms) which caused brain damage....so if you are not happy I would encourage you to switch....as once the damage is done you can not go back. (for me my cognitive function was impaired and I could not advocate for myself,covid keep my wife out of discussions).....I thought I should stop but was hesitant,Now I would stand up for myself,but too late. 

[Peregrina]

Good morning smca, I am so sorry to hear of your permanent damage from chemo. I understand how difficult it is to advocate for one’s self in the midst of treatment as I experience “chemo brain” which is paralysing and I do not know how I would communicate anything without a strong advocate. Your post encouraged me to persist with changing treatment centres and we presented at the Emergency Department of a large Sydney hospital with what I believed to be a pulmonary embolus from my leg DVT’s. There I was fully assessed and seen by the most amazing oncology team who obviously saw my distress and despair. The lead oncologist agreed to take me on as his patient and even arranged all the necessary transfer for me. Next week I have cycle 5 at my new centre with no interruption to my treatment. So, thankyou….Earth Angels do exist 🙏

[Peregrina]

Hello Linda G, thankyou for your kind words. With the help of my support team I persisted in changing treatment centres and after presenting in the Emergency Department of a large Sydney hospital was accepted as a new patient of the kindest, most gentle oncologist one could hope for in such difficult times. He even arranged my transfer of care for me. Now I feel blessed and hopeful that with a  kind and caring oncology team I will make it through this experience. 🙏

[Peregrina]

Hello Jem68,  I would encourage you to look for options if you are at all unhappy with your current treatment centre. It is possible to change, ask for help, don’t give up. I persisted and am now under the care of the most caring, compassionate team of folk one could wish for. My current treatment is uninterrupted and I have cycle 5 at my new treatment centre next week. 🙏

[LindaG]

Hi Peregrina, that’s the best news!! Well done for changing to people who sound so good. It will make all the difference to your emotions!  You will get through and hope and pray the result is positive. Take care🙏💕 Linda