Concerns after treatment

Hi Shellie69 and welcome to our spot in the Online Community. It's not exactly helpful what they told you I'm sorry to say but I have read similar stories before.

If I were you I'd get back on to my CNS and mention the pain that you're in. Hopefully she'll be able to either reassure you or try and get you in for another scan.. Scar tissue can take a while to settle down but in the meantime our mind goes back into overdrive thinking the worse. You could also give Macmillan Support Services a call and speak to a nurse

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep writing the same thing over and over. You can amend or update it at any time. 

Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.

Sending you welcoming hugs B xx

Thank you B. I have put more info up on my profile as suggested....I'm not very tech savvy...!!

Have contacted my macmillan team and GP so awaiting info.

Appreciate your contact.

Shellie x

Shellie69 Come back and let us know what they say.

Hugs, Barb x

Still a bit in the dark but macmillan team advised me to contact my GP.

Bloods have come back normal and I am seeing the Physio. 

So far it looks like the pain is due to trauma due to everything I have been through. Physiotherapist is helping me to deal with it.

Just have to wait for the next scan and that will be in the new year sometime. I've been really fortunate that my treatment was so quickly put in place. 

All the best to everyone having to face their own challenges and treatment. Keep positive! 

Thank you for your concern Mrs BJH. X

So glad that your pain is due to nothing to worry about in the grand scheme of things. Best of luck for your scan x

Pain has gotten worse so have been on strong pain medication. The pain now affects my left leg, around my hip, thigh and knee. It has been unbearable at times and night time, I dread.

I have been for a scan this week. My oncologist brought it forward due to my symptoms. I have been referred to haematology, due to an abnormal urine sample..appointment on Monday. 

So it is all still happening. Will update when I know whats going on.

Thank you for your message Lesley Ann

Hello Shellie

How are you? Your profile is very similar to my mums.  Hope you are well x

lots of love and good wishes x

Hello Lucki2021

I hope your mum is doing ok. 

Since my last post the pain has continued, I am still on strong pain relief.

The scan has shown my cancer is still progressive, which is really disappointing, especially when everything was looking so positive. My lymph nodes have started swelling, its causing pressure on some nerves which are causing the pain. 

At the moment I am awaiting news on possibly starting immunotherapy treatment.

So this is where we stand at the moment.

Take care everyone. Keep safe xx

Hello Shellie

Thank you for coming back to me.  I’m sorry your latest scan is showing progression but I’m confident there will be treatment for it x my mums receiving immunotherapy as well.  She’s on a trial at the Royal Marsden- 2year trial of the drug Atezolizumab.

Happy to share more details with you or have a chat .  Please let me know 

sending you lots of love and good wishes.  Keep soldiering on.  You’ve got this! xxxxxx

Hi Lucki2021, 

Read your profile about your mum. May I ask what stage of EC your mum was at when she was first diagnosed? You mentioned she had radiotherapy. Was it internal or external? I am in stage 2 n being given external n internal therapy. As the lymph nodes were not checked during hysterectomy, I always worry that it is actually stage 3c but not stage 2. 

May I also ask what sorts of tests n scans your mum had during n after the radiotherapy? 

Many thanks. Hope your mum is doing well with the new treatment. 

Best wishes, 

Chui