Caught between getting a node biopsy or not.

It’s tough being faced with potentially worsening news. My lymph nodes were clear, but I had grade 3 TNBC, which is very aggressive. Hormone blockers aren’t offered with TNBC, but I remember strongly feeling that I didn’t want chemo. I was persuaded largely because I didn’t think I could live with myself if I didn’t have it, and something went wrong. So the question is can you live with the uncertainty of not knowing whether it’s in your nodes? 

Hi there, it's so very difficult with all the choices and totally overwhelming.   You might think about giving the lovely folks at Macmillan a call to chat things through as sometimes it helps to speak with someone who has the knowledge but isn't involved. You can reach them on 0800 808 0000. Best wishes 

Well put it this way: Alzheimer’s and Parkinson’s disease with Lewy body dementia runs pretty strong in my family. I asked AI what percentage do I have developing either of these diseases. It said 40-50% of the first disease and 20-30% of the second disease. It strongly recommended I go for genetic testing.

Do I want to know I have a gene that I have a strong chance of getting it?

Absolutely not.

My aunt had uterine cancer and I have a 5-7% chance of getting it, my chances of getting it increase by taking tamoxifen. 

so we will all die of something eventually. Is my way of thinking making any sense? Probably not. 

but I decided to try tamoxifen out and do the radiotherapy. But I’ve got to draw the line of constantly checking for something because the deeper one checks the more chance eventually one finds something. 

my farher had dementia with lewy body disease, he died of a heart attack, not from the disease. 

I don’t recommend anyone follow my way of advice, it’s probably illogical. Experts might even say I’m over thinking this. 

The logical thing would be to get the biopsy but I won’t have chemo. So I’m being illogical for now. 

Ok, I went on a long winded rant last night and 8 hours later I’m thinking less like a nutcase

Here are my current thoughts:

The doctor said if I already know I won’t have chemo then there’s no point to have a node biopsy.

But hear my reasoning:

right now I’m saying I won’t do chemo but I don’t know how I will feel if I’m put on the spot and find out I have it.

Hypothetical thinking and real time thinking are very different.

So I don’t want to remove my options just because I strongly believe right now I don’t want to do chemo.

Maybe I change my mind when presented to me in actual fact.

Maybe not.

But I didn’t remove my option.

My second way of thinking is the dr estimates 80% chance those invasive cancer cells from my breast didn’t spread.

But if I split my chances further:

40% it didn’t spread -

30% it only spread to one or two nodes and I got them removed and can just have radiation and hormone therapy and no chemo -

30% change it spread further than two nodes and I need chemo.

So if I decline the biopsy I miss the chance that I could have prevented it from spreading to 3 or more.

so I will do the biopsy. 

Hi Romance writer  

It is a whirlwind of decision making and so difficult to process everything so quickly. We are all different but my view is better to have all the facts and make an informed decision. I understand your concerns about your risk of developing other hereditary illnesses but at the moment the fact is you don’t have those but you do have BC. 
You may get good news with the nodes or it may be only in the first one. The other advantage is that may influence the radiotherapy treatment (so they would include the axillary area if cells are found in a node). Also if it hasn’t spread to the nodes you then may feel more informed about taking tamoxifen. 
I think getting the biopsy is a good decision - good luck x 

I am glad you are doing the biopsy. Ultimately information is power. Negative, and you have put your mind at rest. Positive, you can make a decision. 

Hi bobof, thank you for that. I think I will do the biopsy and decide from there. I want to keep all my options available. I started researching chemo cold capping and places near me that offer wigs as well as whether health insurances pay for it. It sounds silly to do this from now without knowing if I need chemo but I don’t act well with surprises (see my rant here from last night) I tend to go a little haywire with unexpected issues. I’m not a naturally calm person. I suffer from hypertension because of it. 

I don’t think you are being silly - you are information gathering and it’s a brilliant coping mechanism - once we know what we are dealing with, it’s much easier to think things through. I tend to gather info and then put it to one side as I can only cope with one thing at a time. 
don’t forget to look after yourself - I was diagnosed early October but am still in shock / trauma / fire-fighting phase. This is a tough journey but if you look across this forum there are plenty of examples of fabulous people working their way through this - you are one of them ️

take care x