Why am I more worried now??

Cant understand why I seem to be so upset now and more worried than I was after being diagnosed. March 2018 was diagnosed and since then had chemo, radio, double mastectomy. Have had one boob reconstructed using flap (original plan of two implants went out the window after right boob damaged by radiotherapy). Am still awaiting left reconstruction was told this would be next year now. All invasive treatment over including my 18 Herceptin jabs every three weeks. Getting my life back on track, still working and worked throughout (shorter hours), apart from after operations. So, why, when met with oncologist for the last time do I feel scared it will come back. He said that he cant give me the all clear, as I had two different cancers, both hormonal? but the tablets, Letrozole will help keep at bay am hoping. Taking them for ten years and some tablets for my bones. I wont get a follow up each year as was originally told, I am now empowered to check myself since going on the Moving Forward course. As I have no boobs I can hardly be called for a mammogram. I just seem to be less positive now than I was before. Am scared it will come back. Is this normal, am worried I cant check myself sufficiently. 

Hi Lisa

I’m so sorry you’re feeling this way. You must feel worse, exactly because, as you said, your oncologist “couldn’t” give you the “all clear” - so nothing’s definite. Plus that you can’t check yourself out physically either. So I’m not surprised you feel this way, must feel like you’re in limbo land.

You went through all the afore with such positivity, expecting to be clear from it. 

Sorry I can’t come up with any suggestions to help, Lisa. I feel quite useless for you, but didn’t just want to pass your post by, and wanted to wish you well with it all. But I hope someone else can and does.

Have you thought to contact the helpline on here - “Someone Like Me” to discuss your fears with? Maybe they can help and offer suggestions.  

I hope you stay and keep well, and can find something to curb your fears.

Lots of love to you

Delly xxx

I know what you mean and I’m exactly the same.It will be 2 years since my Mastectomy on Nov 21st.I had 4 weeks of Radiotherapy after that and had 5 months of Chemo before my surgery.I then had months of therapy appointments and am still having check ups and 6monthly appointments on Oncology day case for calcium infusions.I feel a lot better and my energy is coming back but I suffer with fatigue and bone pain and every single day I worry about cancer coming back.I think your body never really recovers from all the treatment and there are days when I’m more scared now than I was when I was originally diagnosed!!! I think I feel that there is always something stood behind you and you are constantly looking over your shoulder.I had terrible Indigestion yesterday and was having a day of my back aching as well,I couldn’t sleep last night for thinking the cancer had come back and was so stressed.I think you have to try and do a bit at a time,try and distract yourself and not let the fear suffocate you,easier said than done,I know!! Look after yourself and dont panic. I KNOW what it feels like.The fear is worse than the cancer.Im thinking of you and sending lots of love xxx

Hi Lisa

 

I’ve just noticed your post. Wow, I’m impressed with all that you’ve achieved - I was flat out like a zombie a lot of the time and fortunately retired as I could never have worked. I seriously am impressed. I also really feel for you; after being at the beck and call of oncology for so long, there’s a kind of security - then they whip it away from you and you have to find your own way through the minefield that follows.

 

I’m facing the same emotional conflict right now. Two things are really helping me (though not eliminating all the fear as it’s early days). First, my breast care nurse said I had these options: the camp that says Yes, it’s going to come back; the camp that says No, it’s not going to come back; jumping between the two camps according to mood; or the camp that says Who knows? and just enjoys the camping. I’m opting for the last. Statistically there’s a strong chance, but that’s statistics for you. Given a 50% chance of recurrence would mean an equal chance of it never coming back but you can bet your bottom dollar we’d all feel scared and miserable waiting for it to come back. Why? We can’t do much about it. 

 

The second thing that’s helped is something I’ve asked the site moderators to make more easily accessible (a section - useful reading). It was posted by one of the nurses here in a reply and I’m just reposting it where I can. I read it every day still to keep me grounded. This bloke really gets what’s scaring me: workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

I hope it resonates with you too. OK, it’s just talk but he does know what he’s talking about.

 

All the very best,

Jan x