So I’ve just been diagnosed at the age of 38 and trying to get my head around everything.
I have been told me cancer was a 12 x 14 mm grade 2 invasive ductal carcinoma ER8, PR8 and HER2 low. My axilla looked normal on ultrasound. Consultant said lumpectomy, radiotherapy and hormone treatment likely needed.
I had my lumpectomy and they removed 3 lymph nodes.
I’ve since had a follow up appointment with a registrar and not my consultant and he was awful . All fine with lump removal and margins clear but 2 of 3 lymph’s have cancer cells in. My consultant has been really positive and this guy just dropped in I would need chemo and I needed to decide between another operation to remove the rest of my lymph nodes or radiotherapy. It’s big decisions and he was just telling me statistics to try help me decide which one.
I’m booked again to see my consultant as I need to understand my options from him.
So… I’m wondering if anyone else has been the same? Would you recommend lymphnodes removal or radiotherapy? I’ve read on here comments about not being able to have radio again in that area?? I might be wrong.
I’m very worried about the chemo. Mainly because I have two young kids and I don’t want them to see my ill. I want to be strong for them and not worry them.
I feel lucky this has been caught early. I’ve had wonderful care (apart from the registrar). But I feel I’m limbo about the next steps and how things are going to be.
Thank you for taking the time to read and comment 🫶🏻
sorry you find yourself here do ring the number on here and speak to a nurse there is also the younger women’s group in breast cancer now and in the forum do look at that too and when rest of your plans in place do look at joining all the threads you might want to we’re all here and breast cancer now’s got you others will pop on too, ask away Shi xx
Hi @hanb1 I also had a registrar oncologist for the first and second appointment, presumably because my histology was quite straightforward. She was pretty useless. I had a list of questions all of which she shut down without answering and in a surly manner, I assume because she didn’t have the experience or knowledge at the start of her career to be able to answer them. It’s annoying but I eventually got answers to most of them by asking nicely to speak to the head honcho. Don’t give up until you get the answers you need to take treatment decisions. I guess the low HER2+ complicates things a little.
This is the category that the lovely @Shi was referring to. Just click this pink link and you can chat with other women facing the same issues as you. Younger women - Breast Cancer Now forum. Good luck with moving forward in your active treatment.
So sorry to hear what you are going through. Life seems very unfair sometimes.
I’ve had two separate primaries. I had all the nodes removed with the first one, and radiotherapy afterwards, because the initial histology at lumpectomy was awful (that was 17 years ago) With the second, I just had sentinel nodes out. I never regretted the full node removed as they found 2 more nodes with macro metastases.
The first arm/shoulder is always a bit uncomfortable and I need to keep it stretched, but it doesn’t stop me using it for anything. I have had no problem with lymphoedema on either side.
I think it’s hard when you are asked to decide the issue yourself. I hope you had someone with you to take notes because you can’t take everything in yourself at these appointments. The BC nurses at your hospital would surely do a recap for you afterwards too. Before the next appointment, try and do some reading about the various side effects of each approach, so you will be better informed when it is discussed again. You can order booklets on both surgery and radiotherapy treatment for BC on the BCN website
As far as children are concerned, my grandchildren were very upset at the time we told them, but before long were happily trying on my wigs, and arranging different styles for me. You will get lots of advice on dealing with the kids on the younger women forum pages if you follow the link Tigress sent
Sorry you’ve had to join the group.
I think if you have any nodes involved they will nearly always suggest chemo just in case the cancer has spread to more nodes or further. Generally they will give radiotherapy to that area too.
Having another surgery to remove remaining nodes will just give information on staging but not necessarily reduce the need for more treatment.
Chemo is hard but not as bad as you think. There are so many preventative treatments now that people don’t get as sick as years ago. Your children are probably tougher than you think and will take it all in their stride.
Hi,
At 38 with 2 lymph nodes involved I think chemo may be recommended. Nice have clinical guidelines which the oncologist follow and if you are younger and premenopausal I believe from reading others posts on here chemo is usually offered. Nice guidelines will be online so you can check as I am no expert.
I am also her2 low with 2 of 3 lymph node’s found to have cancer in them after lumpectomy. Prior to surgery like yourself I was told treatment plan would be radiotherapy and 5 years of hormone therapy. My cancer was Er8 Pr 5 and a grade 3.
I was diagnosed in Jan 23. At this time the NHS didn’t offer prosignia test to women of my age(61). This test analysis your cancer and gives you a risk score. If post menopausal and have a risk score above 26 chemo is recommended. I believe now this is offered to post menopausal women on the NHS with 1-3 cancerous lymph nodes as many are found not to need chemo. However I’m unsure if the prosignia test is offered to younger women as they are recommended chemo with a much lower risk score of around 15, but again I’m not sure about the exact risk score number and you will need to check this. Sorry I’m deviating from your question but I decided to have a full node clearance so I had as much information as possible to make an informed decision. I had a further17 nodes removed which were all found to be negative and I was then offered to take part in the Optima trial which half the women were given a prosignia test and the other half were in the control group. You don’t know which group you were assigned to but I was allocated chemo. Following chemo I had 5 sessions of radiotherapy and the 5 years of hormone therapy was changed to 10 years and as my cancer was a grade 3 with 2 lymph nodes having cancer I was offered Abemaciclib for 2 years. As you have a grade 2 cancer and you are premenopausal your plan will be different. I just wanted to show how it isn’t uncommon for treatment plans to change as more information is available.
Understanding breast cancer isn’t straightforward as individual treatment plans are affected by so many factors. Hopefully after speaking to your consultant oncologist decision making will be easier for you, but your medical team are on your side. They want to provide you with the best possible treatment that will give you a cure.
. All fine with lump removal and margins clear but 2 of 3 lymph’s have cancer cells in. My consultant has been really positive and this guy just dropped in I would need chemo and I needed to decide between another operation to remove the rest of my lymph nodes or radiotherapy. It’s big decisions and he was just telling me statistics to try help me decide which one.
sorry you find yourself here do ring the number on here and speak to a nurse 
