Second lot of cancer this year.

[Anniegetyourspoon]

I had pneumonia and a CT scan also showed up a mass in my chest. Apparently a thymoma which was attached to the pericardial sac and causing heart arrhythmia. In April I had a huge operation to open my chest and remove it. The operation was successful but they were only able to take a small margin.
I got over that pretty quickly considering that I’m 72 and have no support, but then I started feeling ill again, chest pains and difficulty breathing. Blood tests were done and I’ve just been diagnosed with Leukaemia.
I’ve been told that there’s no need for treatment yet but I feel so ill, constantly in pain and unable to breathe.
I had a CT scan to check on the first op and there is something growing in the region that was operated on. Doctors said they are not sure what it is yet but likely it’s the thymoma returning.
I keep wondering what’s the point of struggling on, I’m carer for my daughter and finding it very hard to do the things I used to do.
my next scan is in January to check whether or not the thymoma is back
Thank you for reading if you’ve got this far, I have no one to talk to as family have more or less walked away.

This is awful OP, how can they say you don’t need treatment, if you have cancer?

Blood results say it hasn’t progressed enough yet but then why am I feeling so ill. I have an appointment to see the consultant again in January to review, but everything is so slow. I waited 7 weeks for the results of my CT scan! ☹️

This is absolutely shocking, I don’t understand how they just not treat you.

Some of the low grade chronic leukaemias are not treated until a certain stage as the side effects of treatment are more dangerous than the disease. Chronic leukaemias can go on for years without needing treatment. I don't have any experience of thymomas. I think they're quite rare

Yes Thymoma is rare. I was classified as an unusual case. And because of that and the interest of several consultants I was treated quickly.
I understand that the blood results for CLL have to get to a certain point before treatment but how long have I got to be feeling this ill ? 😪
Ive been through chemo with breast cancer 10 years ago and don’t want to repeat the experience! However, it might be the lesser of two evils. I want to stay alive for my daughter.

I just wanted to send you support and to let you know I’m thinking of you in dealing with all this awful news. I too am on ( well my 4th cancer) in 16 years. I’m currently juggling two incurable cancers and I don’t know if I’m flying a bike or riding a kite!! Horrendous.

Sending gentle hugs 💕

Hello. I am so sorry to read about what you are going through.What has the GP said? Is there anything they can give you for pain in the meantime? Sending a gentle hug and handhold

Thank you so much! Sending hugs back 🤗
it’s so hard isn’t it. I hope you get the treatment you deserve!

OP have you been checked for myasthenia gravis?

It's very commonly associated with thymoma and affects your breathing. It comes up as a search suggestion when you google thymoma.

Most people I've met with CLL are basically asymptomatic, especially at the level that doesn't need treating so this may be a red herring.

Myasthenia gravis can be an emergency condition so please get in touch with your treating team ASAP and explicitly tell them about the breathing and weakness and that you are worried about myasthenia.

I’m on cocodamol 30/500 tablets with oramorph for night time use. I’ve now been referred to the pain clinic.

Thank you for mentioning this, it’s not something I’ve heard of before. I’ll do some research and bring it up with my doctor the next time we speak.

Please don't wait if you aren't speaking to your doctor soon.

From your description you need to speak to your consultant secretary/ specialist nurse ASAP.

Your GP has probably never seen anyone with a thymoma before and never will again as this is such a rare and specialist area.

I sometimes feel like I’m being a bit of a nuisance when I keep ringing the surgery to tell them I’m still in pain. Doctor told me I was on the highest dose of co codamol. Maybe pain clinic will help.

Well you've had a massive operation.

And pain is one of the symptoms of myasthenia gravis...

And I appreciate I am banging on here but you need your consultant not your GP. Tomorrow. Problems breathing is not something that can wait.

@Anniegetyourspoon You are NOT being a nuisance. You aren’t well ! Does your GP know you have breathing problems ?
I don’t think it would be out of order at all to get in touch with your consultant tomorrow as @AnnaMagnani suggests,
sending you best wishes

Don't even think of it as being a nuisance! The squeaky wheel gets the grease and you have to advocate for yourself. Sorry you are dealing with all this alone. You sound very strong. I agree that you should not just have to put up with breathing problems. 💐

I'm so sorry xxx

while you wait for appointments and follow up have you looked into estate planning being that you are a carer for your daughter?

Here’s hoping your pain clinic will help. Do they have palliative care doctors in the uk? Mine gives me Percocet with acetaminophen for pain. Palliative care is not hospice. I think (in the US at least) it’s for helping the patient live their best life.

@BreakingBroken what is estate planning? Forgive my ignorance!

Hi OP. Estate planning is looking after your affairs. Working out who will care for your daughter, your will, financial implications of her care etc.

And I hope you've taken the advice of the pp and rung the consultants secretary. Best wishes.

yes @Anniegetyourspoon besides the items mentioned by @Justputsomeyoghurtonit in the event you can't go to the bank designating someone to manage day to day bills on your behalf. Lots can be done automatically now but often once a year things like home insurance car insurance are not set up.

💐💐💐