Histology results not good

Recently had a breast cancer diagnosis (hormone positive, HER2-). Was initially told on scans that it was multifocal with several lesions and all lymph nodes looked clear. Had surgery a few weeks ago and received the histology results yesterday and they have absolutely floored me. They said that due to overlap it appears to be one big tumour rather than several smaller ones, measuring 9cms in total which is much bigger than thought. And all 3 nodes have tested positive with deposits ranging between 2.1 and 2.3mms. Now I have to have a CT scan to check for spread, further surgery to remove all nodes and chemo which I’d been told was unlikely due to an oncotype score of 16.

I’m absolutely terrified now that its already spread. I can’t eat or sleep and struggling to function.

Anyone else been in this position and can give me any hope?

I feel so so sad and can’t believe this is happening to me.

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Hey @tinkerbell4

My story isn’t the same in terms of diagnosis, treatment etc., but I can relate to the feelings you’re going through.

I was diagnosed with stage 1, grade 3 TNBC back in November 2025. An ultrasound showed no evidence of node involvement so the plan was a lumpectomy and sentinel lymph node biopsy with chemo and radio to follow as measures to prevent recurrence. I had the surgery in December and received the news the following month that the margins and the five nodes they had taken were clear.

Chemo started in April but just before this I’d been back to the breast clinic as I was having problems with some increasingly painful thickening under the lumpectomy scar. This was initially thought to be fat necrosis, however was biopsied to be safe and unfortunately, just five days after my first chemo session, was confirmed to be a recurrence of the cancer. My initial tumour had been 10.5mm and I now had three of them totalling 36mm.

This triggered off more tests including a CT scan to check for distant spread. I was absolutely terrified and was convinced I would be told that it had spread everywhere and there was nothing they could do. So much so that when they told me the CT scan was fine apart from a dark spot on my liver that needed further investigation, I was actually relieved! A subsequent MRI of my liver showed that the dark spot was a benign hemangioma.

My treatment plan was changed to neo-adjuvant chemo with surgery to follow and to my absolute amazement, a breast MRI in mid-July showed that the tumours had gone completely.

I still have a long way to go and I’m certainly not counting those chickens just yet, and maybe never will, but I really hope this gives you some hope that things might not necessarily be as bad as you think and that turnarounds are possible.

All the best to you with whatever happens next. x

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Hello @tinkerbell4 . I am sorry to hear about your diagnosis and that you have had this unwanted news following surgery.

Your diagnosis/path and timeline sound very similar to mine and I am in the thick of it all currently. Therefore I can only offer a virtual hug/handhold and solidarity at the moment. I started my own thread last week and the amazing women here have helped me to see glimmers of positivity in dark moments when I have felt none.

Keep talking here. I had my first ‘post result’, follow up with the radiologist yesterday and just being in the presence of a (very lovely) doctor who intends to help me felt calming. Hopefully you won’t have too long between appointments?

Wishing you all the best xx

I sincerely sympathize with your feelings and situation. We’ve all been there. feeling confused, frightened and apprehensive about the future. That’s normal. That’s fear. Don’t let it control you or your choices. Go forward one step at a time. And you’ll survive and thrive.

While your surgery is complex, an Oncotype score of 16 indicates a low risk of cancer return, meaning the numerical benefit from chemotherapy may be small.Standard hormone or targeted therapies might play a larger role.

Remember, as you kick fear to the door, everyone is on your side. You’re never alone.

I think they’ve changed the management because of the 3x positive lymph nodes that were unexpected. The pre surgery scans of armpit had been normal so this has been a massive bolt out of the blue. Originally they had said because of oncotype score 16 I would only need radiotherapy. All of a sudden im now having a CT staging scan (absolutely terrifying :sleepy_face:), full node clearance and chemo. I’m truly devastated atm and it feels such a lonely place. If the CT is normal I know i can get through the horror of the treatments, im just so so scared that its already too late

Have you talked to your doctor about using alternative streatents rather than Chemo? If he/she insists, get absolute clarity on WHY they feel it’s necessary. Remember that ld saying: “sometimes the cure is worse than than disease” Wishing you the best!

Hi @tinkerbell4

I was diagnosed in May 2024. I found a lump the size of a plum in my armpit while I was in the shower. The GP found a 3cm lump in the breast as well. I hadn’t noticed either before :see_no_evil_monkey: I had grade 3, hormone positive, HER negative BC.

I had chemotherapy first to shrink the size of the 4cm axillary lump and reduce the risk of damage to surrounding tissues during surgery as it was so large. It shrank to 1cm. The chemo had no effect on the breast lump. I then had a lumpectomy and full axillary clearance, 1 of 7 nodes were affected, followed by radiotherapy to the breast only. I’m on hormone tablets and Abemaciclib.

The treatment I had was what was suggested at the first appointment.

After diagnosis I waited 3 weeks for my CT scan to see if there was any spread. By the time I got there I had convinced myself that I had cancer in every cell of my body and could well die before the treatment even started. The CT scan was totally clear, as was my first post treatment mammogram, and a bone scan.

The terror and feeling of unreality is very common and completely normal, especially when the goalposts are suddenly moved as they have been in your case. In a way once the final decision about treatment is made, and especially once you start it, then you will feel better as something positive is happening to deal with the cancer.

If chemotherapy is mentioned then only you can decide whether you have it or not. I felt that I wanted to have every treatment offered as I knew I personally couldn’t live with the ‘what if’s’ and regrets if I had a recurrence. All you can do is weigh up the options offered, inform yourself and choose the treatment you feel comfortable with.

Do you have a Maggies Centre near you. I dont but I’ve heard that they are wonderful and that they will talk through everything with you. There’s always people on the forum to talk to and the nurses on here are great too.

Hugs to you :people_hugging:

Hi @tinkerbell4

I was diagnosed with Hormone positive Invasive Ductal in April (8/8, 5/8 and HER2-ve), like you ultrasound and MRI had not shown anything other than the primary tumour.

It was like having the rug pulled from me when two of the sentinel nodes were found to have macromets - one 5mm, that had gone beyond the lymph node and one 3mm. It changed my treatment plan completely, from surgery and radiotherapy to chemotherapy, more surgery to do axillary clearance, then ratio therapy plus a CDK4/6 inhibitor and Letrozole for 7 years. I’m 52, but they said the level of treatment is because I’m young, could handle the treatment and they have a good chance of making sure it doesn’t come back.

I went strait to chemo - the oncologist talked me through my predict scores and what each treatment would add to my 5,10 and 15 year survival rates. That was enough. We have gone straight to chemo - 4 cycles every 2 weeks of EC and 4 of Paclitaxol. It’s not fun, but doable and every one done is a step in the road out of hell.

I asked my oncologist how they would know if there had been any cancer in any of the nodes treated by chemo - apparently they will likely have some evidence of scarring or a few left over cells.

Wow, this is a long reply! But I also used to be a psychologist who specialised in working with cancer patients. The level of treatment they have for breast cancer is phenomenally different to what it was 25 years ago when I started. Night and day. More and more things are coming on line all the time. I suspect in 10 years we may even be passing the need for chemo and shifting to immunotherapy. Your team will want you to live a long and happy life and will work with you to do the best you can make that happen.

In the meantime, acknowledge that this is terrifying, that you don’t want to be hear, but that everything you are going to go through is to give you back your life. It will change you undoubtedly, but that won’t necessarily be for the worse. Many people. One out of this feeling a clarity of what they want from life and a desire to live fully but not sweat the small stuff. Take all the support that’s offered, it will be practical things that help the most. Food people bring, baby sitting, pet sitting, food buying, popping in for a cup of tea in your good days. You will find strength you didn’t know you had, side by side by vulnerability, fear and sadness. All of these are good, all will help you even if they feel terrible at the time. Take very good care x

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