Hey guys , I’m so sorry we are all having to go through this ,I have recently had 2 surgery’s , 2 small lumps removed - eostregen driven (not sure if that’s spelt right ) grade 2 ,margins cleared and 1 lymph node came back with traces in it - out of 14
Was always told this would be radio and hormone therapy, now chemo mentioned because of this one lymph node - I suffer from severe anxiety so as you can imagine this has me in a bad way - if they had have taken less lymph nodes and not found it , it would still be radio and hormone therapy, so what would have happened? . Is there anyone that’s been in my situation and still went for the radio and hormone and it been ok
Oncologist left me to make a decision but I’m scared
I’m sorry you find yourself here. I think I’ve read your post to the ‘ask the nurses’ section and they have replied about double checking with your team.
Over the past few years I have read a few posts where doctors have asked the patient to decide if they want certain treatments. For me, even though I will research, I want their expert opinion. They do this day in day out, the oncologist and breast surgeon looks at the data and make the decisions on that. As a patient our feelings come into it as well. There is a balance of over or under treating and the balance of risks and benefits of the treatment.
The doctors will have used the Predict tool, see link below, there is two versions with the newer one including extra treatments. It is advised to do this with a health care professional to get context.
Please look up Dr Liz O’Riordan on social media who has covered the tool. She states that data used is 10/15 years old and that treatment has improved and therefore percentages are ‘probably’ more than stated.I had two tumours, one in each naughty boob and the tool says it doesn’t take into account bilateral ( one in each). My team based my treatment on the larger and higher grade of the two using Predict.
https://www.youtube.com/watch?v=XixPPR0Ln0Q Menopause and Cancer charity have a great oncologist called Dr Claire Macauley, she talks about the Predict tool on the above video at 13 minutes. I found this explanation very helpful. I know this video is about hormone treatment being unbearable, for some it is ok and others it’s a struggle. You won’t know until you start and there is options to try different brands and types of medication.
I hope you are able to contact your breast care nurse and chat through your options in details until you are happy. Don’t hesitate to ask for another appointment with the doctor if you need to talk more.
Can you ask for an oncotype test? If not, one way to figure out whether chemo would be beneficial is to look at the amount of estrogen and progesterone plus how strongly it stained in your tumor. For example if pathology says you had 95% estrogen and 95% progesterone with an intensity of 3 then chances are excellent that endocrine therapy would be sufficient. If you tumor had 60% estrogen and 40% progesterone with an intensity of 2 then you probably should consider chemo because your tumor might not be as responsive to endocrine therapy. Your age is a factor to consider, too. When you’re done with endocrine therapy will you be in menopause? Or are you young enough to regain your period and the estrogen that comes with it.
I think it’s really hard, and almost unfair when patients are left to decide their treatment plans. As others have said there are tools and tests that support treatment decision plans, but ultimately I think the oncologist should really advise you, they are the experts. I was similar to you with 1 lymph node with a few pesky cancer cells in it. I was in that situation once with my oncologist. I really had little knowledge of the drug he said I could have as it was so new, he also said I didn’t have to have it. I asked him what he would advise a family member to do, he said have it, so I did. That was what swayed my decision. I was one of the first women to have herceptin for a primary cancer, previously it had only been offered to women with secondary cancer.. What I will add it I am still here, many years on and super glad I took everything that was offered to me. I hope you get some support from your team and can make the right decision for you soon. Best wishes.
I had chemo 6 x EC. Herceptin 17 doses at 3 weekly cycles, 20 x radiotherapy sessions and tamoxifen. Things have changed abit now, as it was years ago. There are different chemo drugs and better drugs to manage the side effects. My Mum was diagnosed at 80 and she had more lymph node involvement, but she coped really well with chemo. Her treatment was 16 years after mine and despite her age, she did very well. Best wishes.
I had same oestrogen driven cancer diagnosis but just one lump, and also one lymph node affected. The lymph node being affected meant I was offered an Oncotype test. Are you in England? If so, that is standard NHS protocol. If not, could you ask for it?
The score from that can help you make an informed decision about whether chemo would be beneficial. I was extremely anxious, like you, but from that result knew I should have chemo even though I dreaded it.
I have got through it somehow and it wasn’t as bad as I feared and there is some comfort in knowing that I have thrown everything at it.
It’s a horrible time though but things will become clearer and you will feel better than you do now.
