Hello everyone,
I was diagnosed with advanced breast cancer (ER positive, grade 3, with suspicious looking nodes) last month right after my 37th birthday. Since then, it has been an overwhelming and emotional journey, with moments of confusion, frustration and uncertainty.
I made the mistake of sharing my “news” with close friends and coworkers and now I feel overwhelmed by the daily flood of messages. As someone who enjoys my independence and solitude, it’s been tough to navigate this…
I underwent a lumpectomy and partial axillary dissection along with senitel node biopsy. My initial axillary node biopsy came back non-cancerous. I don’t understand why, if my lymph nodes are deemed suspicious on both and ultrasound and CT scan, do they not opt to remove them fully? Also, my lump was 34mm, why they thought lumpectomy is enough? And why surgery before chemo??? They don’t really want to answer my questions. They uncertainty surrounding these decisions makes it hard to feel confident in the course of action.
I’ve been feeling isolated and misunderstood. My mom, who lives far away, struggles to discuss reality of my situation and my friends and coworkers look at me with pity (I am not dead yet!!!). No one truly believes in my remission and it’s hard to stay positive.
I just need support and encouragement from someone who has walked this path himself because I think I am losing my mind.
Apologies for the long post and thank you for reading!
Much love,
Nat
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Where has your cancer advanced to? Did they tell you it is advanced. I’m just a tad confused as, if you have negative lymph nodes, it wouldn’t be advanced unless it has used another route to metastasise - not impossible. Advanced is when you have metastatic cancer that has spread to another part of the body, in which case, you would be right in saying usual route would be chemo first. The way you describe it and the treatment sounds like grade 3 stage 2, which is not advanced, so maybe you are being more pessimistic than you need to be?
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For early breast cancer a lumpectomy followed by radiotherapy, has equal results to a mastectomy. Your age and size of area removed, compared to the total size of your breast would have been taken into account. Rest assured that, while the size wasn’t small, it wasn’t huge either, so is very treatable.
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Thank you for taking the time to reply.
In the letter to the MDT it’s described as ‘locally advanced left breast cancer which is grade 3, ER positive and we are awaiting FISH to determine if she can have NACT or else they plan to perform WLE and possible TAD.’ This was before my lumpectomy and targeted axillary dissection (last week). Regarding the lymph nodes, the ultrasound and CT scan showed a suspicious node, which led to the targeted axillary dissection (even though the biopsy came back negative). I am finding the process overwhelming and confusing and it feels like the waiting is dragging. I apologise if I am not using the right terms. I know I am not the only one feeling stressed, but it’s so hard… It feels like I gave up before I even began to fight 
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I feel your upset, its understandable. Thankyou for the further information, that makes it a bit clearer. Have you had your results meeting yet from your surgery yet or got a date? That should make things clearer and more difinitive than biopy results and scans can give.
Its not surprising you’ve picked out the ‘advanced’ part, but you’ve, missed a crutial aspect of it being ‘locally advanced’, which is a big difference, in a good way.
It’s all a bit of best guesswork from scans and biopsy as to details of a cancer. They are vital at establishing a treatment path, but it’s the results of the surgery that are definitive, and its not uncommon for treatment to change according to what is found, for better or worse. This is why the time waiting between surgery and results is usually the worst time and mentally draining. Its normal for people to want to jump to the results and work it all out themselves beforehand, but there are no shortcuts on that, which makes it so hard, I empathise.
So far it looks like your FISH test was negative for Her2, which is why they have proceeded to surgery- that’s your fist bit of good news to hang onto. The next of importance, is the lymph node results from surgery. Biopsy results are encouraging on that so far, so I hope you get a good outcome on that. Whatever the results, this forum is a great support.
Focus on the positives if you can meantime. I found exercise a useful distraction, or whatever keeps you occupied to avoid dwelling.
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Hi @nat_story. I’m sorry to hear your story so far, and yes the waiting is horrifically difficult.
I had locally advanced her2- hormone+ left breast cancer. Surgery first is the most common start to treatment. The results of your surgery will determine next steps which will normally be radiotherapy and endocrine therapy, possibly with chemo too.
Whatever the next steps are, we’re all here to support you. It’s a huge shock and you are young at 36. I was 46 when diagnosed. I’ve had 4 surgeries, a reconstruction, chemo, radiotherapy and endocrine therapy all in last 17 months, whilst managing work, 3 kids and having a social life…You can do it!
Breast cancer now has a younger women group which you may find helpful:
As @entropy says, locally advanced is different to advanced. Sometimes the vocabulary used by medical professionals sounds scary. If you’ve had your surgery, the results will determine what’s next, but if you have clear margins, you may already be cancer free! The next treatment is to reduce risk of reoccurrence and mop up any stray cells.
When is results day?
Keep us posted and best wishes. Xx
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Hello @nat_story
I can see that you have had some very sound and informed advice in reply to your post.
I just wanted to add a couple of things:
- It is sometimes quite hard to get heard by the team treating you. I have found this to be the case. But you have every right to have your questions answered and feel that you are given the information you need to understand your options and why they are following a certain treatment path. So, if you feel you need more answers get back to them by email and say you have questions and want them to be answered in a meeting. Write your questions down and go prepared. And if you still feel like you haven’t been given the answers or your concerns are being overlooked, then contact the PALS service at your hospital to ask for support.
- This has been an awful lot for you to take on board and you are struggling emotionally. Ask your team what mental health support there is and how to access it and get yourself on the waiting list for it. Also, remember that Breast Cancer Now has support available that you can access. I recently accessed their Someone Like Me service and it really helped me with a particular issue I had - talking to someone with the same experience as me was so reassuring.
- Your mum is probably struggling to come to terms with your diagnosis. People don’t always react to it in the way we expect them to. (One of my close friends pre diagnosis has totally cut me out of her life since I got it and I have been told by a third party that she just can’t handle it because she’s had so many friends get cancer that she’s convinced herself it’s her turn next and is scared. I understand that). A lot of people don’t know how to support someone with cancer, especially from a distance. Perhaps this is something you can discuss with a Breast Cancer Now nurse or volunteer. They will help you find a way to tell your mum gently that you need her support and how she might give it.
I wish you all the best and am sending you a big hug. Xx