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.
Thank you @Tigress. I’m sorry you had similar experience with your oncologist. Thanks for your reply. I didn’t actually realise the low HER 2 meant much to worry about but I haven’t researched it. Presume it meant it was low concern . I’m hoping my consultant will help me understand a lot more when I finally see him.
Thanks for the link. I’ll have a look!
Thank you @Eily. I will do some research into side effect of both. The doctor told me about side effects of the clearance and lymphoedema but nothing about side effects of radiotherapy. My husband is coming with me to appointments and he’s quite good and remembering everything.
Thankyou for the advice with your grandchildren. I’m can imagine mine Will enjoying helping with wigs too if I need it.
Thanks so much for your reply and well wishes.
I had all these same fears - 42 with a 9 year old. No node involvement for me and a re-excision a month after first lumpectomy because they didn’t quite get the margins. The surgery wasnt too bad at all. Of course, I only had primary lymph node taken. Plan was supposed to be 1 surgery and 5 days radiotherapy. 4 months down the line Im waiting for my chemo date - oncology score done on the removed lump said high risk of recurrence.
The changing plans will get you in the brain! The waiting kills. Making a decision then back and forth doubting while you wait to start…horrendous.
There are a lot of different people who make their decision and no one is wrong- mine is the ‘thank god treatment is free on NHS, Ill take it all and no I did all i could to rid my body of nasty stuff’. It has led to tears and fears for sure though. I could just say no and hope for the best. But I decided to write 2025 off, give in to all the appointments and just go for it all.
My daughter has coped better than me. She is excited about wigs. Thinks me going bald could be hilarious (thanks kid!), we chose some chemo hats together from Temu! The consultant advised cold capping which i wasnt going to bother with but ill give it a shot! I proceeded with such caution trying to explain it but she’s been fine. Ive been reassured that theres so much care and extra adaptable medications that it will be awful but only for a few days each round. We’ve laughed about stick on eyebrows if needed, theres microblading but I dont think i want the fuss. I was trying to hide tears on a low day and she held my hands and told me its okay to cry, and that ive always told her that so I should do the same. Kids are incredible.
All in all, let it settle for a bit. If id written this only a couple of weeks ago id have sounded scared and unsure but deciding and time going by, as it does, settles the mind eventually.
I hope you can enjoy the sunshine. Cry if you need. Walk if you need. Sleep if you need. Then keep on keeping on xxx
Thanks so much everyone for all your responses. So I have finally seen ‘my’ consultant again and my goodness what a difference he made me feel. He explained everything so well, even drew diagrams, etc.
We now know that my chemo is just a preventative incase any rogue cells have gone for a wander and I’m so thankful for that. I think I heard chemo and automatically thought my cancer was much harder to treat and that’s how the registrar made me feel. Also considering he was talking about survival rates.
I’m soo much calmer about it all. I’ve done a tonne of research into clearance vs radiotherapy and for my age and having chemo too. I found studies about it and I’ve decided radiotherapy is best for me at my age.
So I’m prepping myself for the next steps and heading into chemo. We have had a work with both the kids but only to tell them at the moment that I need medicine which will make me a big poorly but it’s to stop the bad cells coming back in the future. They were really good about it.
I’m positive and in a good head space now and ready to take it on!
Thank you for all replying and I wish you all the best too. We got this ladies. X
Wow @fancyhooves your daughter sounds amazing and you should be so proud of her. Kids really are incredible. I haven’t braved it yet to tell them about possibly losing my hair. I’m going to cold cap too and I’ll take each step as it comes with them. My 9 year old is a bit of a worrier but she’s better for knowing what’s going on and my 6 year old doesn’t say much about hard stuff but instead try’s to distract by being lighthearted.
You’re very similar to me with the unexpected chemo but when my consultant explained it a preventative it just seemed to sit so much better with me. I agree too, thank goodness for the NHS and being offered the wonderful care.
Please reach out if you ever want to discuss things further as we seem to be going through it at a similar time.
Good luck with your upcoming treatment. You sound like you have the best mind frame too. You got this
Hi was in similar position have a look at optima trial - its looking into if chemo really needed does it help because of cell division or because of menapause. Also ask about if you are suitable for the oncotype test. If this comes back as low advises hormone treatment rather than chemo. Its tricky. Unfortunately there isnt a right answer just a whole lot of statistics. You need to choose according to what will help you move forward without stress andvworry. Really tricky. I ended up having chemo X 2 cycles befor oncotype came back. It was ok and carried on being a mum just with more support from aunts on day 5-9. Discuss your worries with breast nurse and use breast cancer now nurses to talk through before appt.
Just seen your update. Get in there lady, you sound solid and upbeat. You might wobble…if you do we’re all here. I know I’m due one and thank you for the support in return! Xxx
Hey, I was a bit similar with the change in treatment so was in a rollercoaster if emotions. Initially the confirmation was hard and was upset, then next meeting was told would need surgery, radiotherapy and hormone therapy so felt relieved after that one, then after surgery, when they found more, to be told needed 2nd surgery and chemo as well afterall, I was so upset again!
I’m 42 with a 6 year and I downloaded the book ‘Mummys Lump’ to read to her, like the other lady’s kids, she found it quite funny at the thought of going bald and getting wig to the point that i got upset and told her that it wasn’t a nice thing to happen to me. She’s fine though and knew to be careful after I had the operations etc. Speak to their school to ensure the teacher looks out for any changes to behaviour or anything but tbh she’s been absolutely ok. Also, i did my first round of chemo over a week ago and i thought i would have horrendous side effects especially as mine is dose dense (they told me as i was young, fit and healthy so i could take it!) And apart from the first few days, ive been fine.
I’m so sorry you’re going through this and sending you so much love and strength. I can’t help much on lymph node removal, but I can give a bit of advice on chemo. I had a mastectomy back in November at the age of 42 and had the one node removed. I got told I would most likely only need radio and hormone meds but I was waiting for 2 tests to confirm the chemo, One being the HER2 which came back negative, and the other being the Prosigna test to determine risk of recurrence. Because everything else had come back as good as it could have done I had it in my head that I wouldn’t need chemo until I got told very casually at my new treatment hospital that I was high risk of recurrence and would need chemo…
So I feel your pain when you’re not expecting it, and some consultants / oncologists have no idea how to deal with people. My initial reaction was “NO, I don’t think I want that!!” to mortified faces, they bought in another consultant and the BC nurse. Anyhoo, to cut a long story short, I ended up having chemo and am 5 out of 8 treatments.
I found the first 4 EC not too bad, but my 1st Paclitaxel did bring me down a notch, I’m hoping its because it was my 1st. I am cold capping (save the hair), or though I have lost a lot of hair and can just about get away with headband and ponytail, I do still um and argh if I will shave it… Have wigs and clippers on standby!!
See what your consultant says, and what options they bring up, for sure you will need hormone meds after as you are hormone +. Chemo is shitty, but it hasn’t been as bad as I thought it would be. I do a daily up date on laugh_a_lottie on insta if you wanted to follow and I’m honest with how I feel. I was more upset being told I needed chemo than being told I had cancer which makes no sense!! All I would say is - I know you don’t want to worry your children, but you also want to do as much as you can so it never comes back again and you’re there for them through the years.
Hi Charlotte,
I am just about to move onto EC after 4 x Abraxane ( I had a reaction to paclitaxel)
Did you find the EC okay? The abraxane/paclitaxol has given me a lot of bone pain.
Mine was a 2cm lump found in screening, with 2/3 lymph nodes affected.
Jan
I’m sorry you had a reaction to Paclitaxel, that can’t have been nice. I did find EC ok but I know a lot of women do struggle with it and find it the harder one out of the two. For me, I felt very nauseous the night of treatment and the first cycle I felt it up until 6pm the following day, the other cycles it was only mild the following day and with all cycles it continued very mildly for a few days. Didn’t stop me eating and I was never sick, I would advise you take the anti-sickness meds they give you to help with it all.
I had to take 7 injections from day 3, to help increase white blood cell count. These can give bone pain, I only had it mildly in my lower back and was more like spasms. On day 5 or 6 I did feel wiped out, this lasted a day or two, body felt very heavy and tired and I just felt low. The odd ulcer here and there (get some mouthwash prescribed to you if you get them) my eyes were and still are very watery when I go outside and felt grainy from them to time. I was very constipated due to the anti sickness meds, so get some Lactolose prescribed to you to help with this. I think that’s about it!!
I was hoping Paclitaxel was going to be good to me, but the 1st cycle wiped me out a few days after with bone pains and spasms in the legs and then lower back and I felt so tired and low… But today I am back to my upbeat self and have my energy back.
Let’s see what the next cycle brings on Friday. Here if you have any other questions. Hope it goes well xxx
Thanks for your detailed reply.
I have to have the injections day 3 for 7 days too with the Abraxane.
Hope the remainder of your paclitaxel journey is as gentle as possible xxx
. 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 
. I’m hoping my consultant will help me understand a lot more when I finally see him.
