5 weeks; still don’t know full picture & no treatment. Help :-(

FormerMember over 4 years ago

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Hi all,

So, 5 weeks ago I was diagnosed with BC. Two lots of biopsies & an MRI later and I finally met with my oncologist yesterday. I say finally because 5 weeks since diagnosis feels like a long time!! I don’t know if this is normal though?

I have a hormone receptive, HER2+ cancer in my left breast and my cancer is also in a number of lymphs. As the mri suggested the cancer is in a high number of lymphs I am having a further CT scan on Thursday. They are concerned that with the number of lymphs involved, the cancer has metastasised. After the CT I will need to wait 8 days for results, which really feels like a lifetime

Hearing this, along with “if it has, we wouldn’t go with chemo... we would look at drugs to control things for now but there would be no cure and your prognosis will be different” has been possibly the worst thing I’ve heard so far.

So, I suppose I was wanting to ask:

Is the time frame ‘normal’? I know my cancer is aggressive so 5+ weeks and nothing happening yet is driving me crazy!

Is anyone here in a similar position who could give me advice/support? I’m so frightened by this latest twist :-(

All/any support appreciated. I feel like I’m losing hope here....

FormerMember over 4 years ago

Hi,

I’m sorry to hear your news. The waiting is very difficult indeed. It takes time for the various appointments to be allocated then you have to wait again for the results. Thankfully you have your scan booked for Thursday so I would expect you’ll have your results by next week. Can you speak to your BCN to make sure you have an appointment for this? I know it’s really difficult not knowing your complete diagnosis but they want to be sure about everything before determining your diagnosis and treatment plan. I felt my diagnosis was taking an eternity but on paper it actually moved really quickly. It just doesn’t feel like that at the time because we want answers as soon as possible. It’s really, really tough I know, but try and stay strong and do the things that make you happy. Take care x

Charlieandlola over 4 years ago

Hello

My cancer was her2 positive and I had a wait too. I was diagnosed in November and it was January before I started treatment. It showed up on the scan as being in several lymph nodes as well.

However, after my ct scan was clear I began chemotherapy. At surgery my lymph nodes were clear so just because they might look swollen on the MRI doesn't mean they are positive for cancer. The waiting is horrendous and I feel for you. They are just going thru the process of making sure you get the correct treatment. Do you know how big your lump is?

Love julie x

Charlieandlola

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