Surgery pathology result today. I can’t process this

I was diagnosed with IDC er and pr positive , her-2 negative back in May. Biopsy and MRI revealed two (probably separate) grade 2 tumours of under 2cm each. Lymph nodes didn’t look suspicious. I am 3 weeks out from mastectomy and DIEP flap and got my results today.

Was prepared for some revision of the diagnosis but this has totally floored me. Tumour was more than 7cm and grade 3 and one node (of 2 taken has macrometastis).

Everything is turned on it’s head. I know the terror of finding widespread metastases everywhere is what I have to deal with next as well as a gruelling treatment plan.

I am so scared and I am angry. How did I not know? Why did I stupidly let myself relax a little and believe that I would walk away from this relatively lightly once recovered from the surgery. I don’t how we will get through this as a family. I don’t want to leave my children without me, but it feels like it’s all just leading to this inevitable conclusion now. I don’t think I can do this. I feel broken

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Sending my love xxxx there is no way of knowing please please don’t be hard on yourself. Speak with your BCN or consultant asap and ask them direct what the plan is for you. Write everything down that’s in your head and have it ready for when you speak with them. Xxxx take care

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@derry1 Oh lovely, I’m so sorry. :heart: I can completely understand why you feel utterly floored by this. You went into surgery thinking you were dealing with two small, grade 2 tumours with nodes that didn’t look suspicious, and instead you’ve been handed a completely different picture. That is an enormous amount to process in one go.

Please don’t be angry with yourself for letting yourself relax a little. You had every reason to believe the information you’d been given. You weren’t being stupid or naive — you were trying to get through something frightening and allowing yourself to believe that perhaps the worst of it was behind you. None of us can prepare ourselves for information we simply didn’t have.

It may also help to know that it’s actually quite common for the diagnosis and staging information to change after surgery and positive lymph nodes do not mean a definite diagnosis of secondary breast cancer .

I know many women who have had lymph node involvement and they are still here, it hadn’t spread

Biopsies and scans can only give the doctors a picture of what they can see and sample before surgery. The pathology from the whole tumour and the lymph nodes gives them much more information, and sometimes the size, grade, lymph node involvement or other characteristics turn out to be different from what was initially thought. It doesn’t mean you did anything wrong, or that you somehow should have known.

My own diagnosis started as multifocal DCIS with a tiny 1mm grade 2 invasive tumour and I was told after initial assessments that I was unlikely to need chemotherapy.

But after my mastectomy, the results were different , it came back as multifocal high grade DCIS with five separate HER2 positive tumours, and suddenly there was no question at all: I absolutely needed chemotherapy, along with a much more intensive treatment plan than anyone had expected. It was a huge emotional whiplash, going from thinking I might avoid chemo entirely to being told it was essential, I did cry like a baby because I’m an absolute wimp and the worst patient ever !

I was terrified at the prospect of chemo and targeted therapy

I remember feeling terrified , just like you’re experiencing now but .. I finished all my treatment a year ago, and I’m still here.

And please try not to let your mind jump to thinking “ this is going to be a terrible outcome “

I know that fear is incredibly powerful, but you don’t have that information. Even when things turn out to be more extensive than expected, that does not automatically mean a poor outcome or a shortened future.

Right now you are grieving the future you thought you were going to have after surgery, and you’re terrified because that future has suddenly been taken away from you.

Let your family look after you. Cry, be angry, be frightened. Get through this one appointment, one treatment and one day at a time.

And please remember that your pathology results are not the same thing as a prognosis. There is still a lot of information to come, including the full treatment plan.

For me , while everything was still in the planning treatment stage , I felt stressed and anxious, but as soon as I as treatment began .. It felt better knowing that things were happening

Your children need you, and right now your job isn’t to figure out how you’re going to live without them… I remember feeling the same at the time, I wrote myself off without knowing the facts

let your HC team work out how best to treat you and to get through the next step.

Sending you so much love. Please be very gentle with yourself xx

Please do contact the breast cancer now nurses if you really need to speak to someone. Xx

:star: Arty1 :star:

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Nothing I can add to @arty1 fabulous response but adding a hug and positive thoughts.

You get through it one step at a time with support from your team and those you love.

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Hi @derry1 I am not suprised you are shocked that is a much different result than you were expecting and I am so sorry its been thrown at you. I am 2 weeks post double mastectomy and I havent had my results yet but I know I will also be floored by anything unexpected.

I just want to say please dont beat yourself up so harshly :heart: You didnt know, how could you have if even the radiologists got the measurements wrong!? And how could you have let yourself relax? You are my hero for even being able to relax a little bit after a cancer diagnosis and such a big operation!

From what I understand your particular brand is very treatable. You’ve had surgery and the cancer and lympnode has been removed, its gone. Next will likely be chemotherapy. There’s no need to go into the details of that just yet but there are many of us here with you that can reassure you that it is manageable and will support you all the way through. You might be offered radiotherapy which will target any nasty cells directly. And your cancer being hormone positive is really encouraging because they know exactly what to shut off to stop any cells from growing. It might not seem like it now but once you get your full treatment plan you will feel much better. All this unknown is the worst xx

As @arty1 says please dont write yourself off so soon. I have had the same thoughts as you about leaving my girls and it was awful but I am certain there has been no talk from your doctors or nurses about you leaving anyone just yet. Try not to let yourself go down that hole too far. Take it from me and my family that you and yours will get through this. I had 2 lumpectomys, 8 rounds of chemotherapy and a double mastectomy alongside a husband that didnt know the vacuum needed emptying and tried to clean our toilet with a flannel and 2 teenage girls that wanted to start embracing their teenage years to the max. Of course it has been an adjustment but its not forever. You will all get through this together :heart:

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I honestly cannot tell you what your kind, and calming words mean to me this evening when I am feeling so physically and emotionally drained by the day (my hospital is a 4 hr round trip so it’s taken it out of me too).

Thank you to all of you for giving your time. I am truly grateful

I am waiting for my oncology appointment to come through and the various scans. The way the doctor talked about using scans to stage now just shifted the whole tone and terrified me to the core.

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Thinking of you @derry1 . I can’t add anymore than the wonderful @arty1

My journey wasn’t straightforward and had its own hurdles. Just know that your team will have a treatment plan for you.

Keep sharing.

:smiling_face_with_three_hearts:

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You don’t say if they have told you your treatment plan yet - I assume not. I had my path results yesterday. My tumour was 5+cm, they took 13 lymph nodes and one contained cancer cells - I already knew this as they did a biopsy before surgery. I assumed I would definitely need chemo, the full works. But that is not necessarily the case, they are doing an Oncotype DX test first to see if chemo is necessary as only one lymph node was involved it may not be. Obviously I can’t know for sure but I would imagine there is a possibility they made do the same for you? I will definitely need radiotherapy but that doesn’t seem as much to cope with. Please don’t assume the worst at this stage - although I’m a fine one to talk as I was doing exactly that! Let us know how you get on x

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Sorry you are joining the club, none of us wanted to be here. Try not to be too hard on yourself, we all hope that results are going to be good and expected after surgery but that is not always the case. Before surgery I was told that it was highly unlikely that I would need chemo, but that changed after surgery. There was evidence of Limpho vascular invasion and both sentinel nodes they removed had micro metastasis. I had a lymph node clearance which revealed 8 out of 21 lymph nodes were positive. I therefore went through chemo (not nice at all but it is doable) Rads and then letrozole for 5 years and then Tamoxifen for a further five years. Now, ten years on, I am living life as normal. What sounds like a devastating diagnosis at first can be broken down into doable segments. I really hope you are as lucky as me, and you easily could be.
Try to stay positive (easier said than done I know) and you will get through this. Use this forum for support (I know i did and it was a life saver) and try to stay strong.

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I have a similar size diagnosis and it was seen so I am

Having chemo before surgery and I didn’t have spread. My surgeon. Said it was unusual for it to have spread . I still

Spiralled but know the chances are small

. I’m sending you so much love and I am here if you need someone x

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Thank you so much to hear happy outcomes x

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Thank you. I feel less alone here.

I don’t have my formal treatment plan yet, but the surgeon has said it will be chemo and possibly radiotherapy.

If it was micromets in my node I don’t think I would feel so pessimistic about my future, but with the macro and the sheer size of the bastard thing all I see is being told no chemo and poor prognosis. This knot of fear in my stomach is getting tight and tighter.

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No I get it and i as searched the internet for good stories . Please let u know how it goes and i am

Having positive thoughts for you xxx

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So first of all, you can and you will do this! I was in a similar situation tumour was small and no lymph node involvement when I had my biopsy and initial ultrasound etc. Results after surgery were unclear margins and macrometastis in one lymph node so full clearance needed and further surgery as it was invasive rather than just DCIS. Roll on second lot of surgery, five sessions of radiotherapy to come and letrozole. No chemo needed because my score was below 26. Try to think positive because so many of us have been in similar situations and coping and you will too. Its such a difficult journey but there will always be support here if ever you need it. Hugs coming your way x

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Thank you both.

@philippa74 I am sorry to hear this, but thank you for sharing, it is really helping me. I have an appointment with the radiology consultant next week and CT booked. Still nothing from oncology.

I keep replaying the appointment over and over in my mind and just seeing the sorry and serious looks on their face. I felt like a dead woman walking out of there. I just want a doctor to give me something to grasp onto, to tell me they can help me.

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Hi derry1

I had lumpectomy and 2 nodes removed, er8 pr8 her neg. Both nodes contained cancer one micro and one macro. I had a full clearance and it wasn’t found in the others taken. I went on to have an oncodx test which came back at 11, which for me meant no chemo (I was 58 at the time).

I went on to have 5 days radiotherapy where you have a ct scan before hand at your planning appointment, this picked up something on one of my kidneys so I went on to have a ct scan with contrast dye, from that I was told I had a large cyst on my kidney.

These were the only scans I was given whilst having treatment. Now on Letrozole for 10 years and ibandronic acid for 3 which I’m tolerating well, stiffness being my main issue but if I move around it’s much better and of course the annual mammogram for five years.

Please try not to think the worst, I think we all go there, I am nearly at my 3rd annual mammogram now.

Have a lovely weekend and try to enjoy a bit of sunshine while we still have it. I live in the south and it’s very hot here.

Sending Hugs to you

:hugs::hugs::hugs:

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I had a total flip in my plan which was originally one surgery and 5 sessions of radiotherapy and after surgery ended up being a second op, 5 months of chemo and 15 sessions of radiotherapy. I can understand how totally thrown you are feeling, I think it’s largely because we focus on the initial plan and prepare for it, expecting that’s what will happen so we get side swiped when it changes (I certainly did!). What I’ve learnt along this journey is that I have to let go of the control and go with it as cancer is unpredictable. I’ve coped better emotionally when I’ve considered the maybes and not fixed on any one thing. There have been so many ups and downs over the last year, but I have appreciated the people around me so much more and I made it through the active treatment. It’s hard, but you’ll do it. Try to take one day or week at a time rather than looking at the enormity of the plan when you get it. Everyone wants you to get through and your friends, family and hospital team will carry you when you need them to. Sending you love, strength and positivity - you’ve got this :heart:

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Hi, I wish I had come across a thread like this 15 months ago. @arty1 has given a very clear response. @derry1 my situation was quite similar 15 months ago. After the initial surgery, I thought I would have 5 sessions of radiotherapy and endocrine therapy. Tumour was 7cm larger than expected- ductal but a lot of lobular patterns making it harder to see on imaging. Had ajuvent chemo, full node clearance, letrozole, 15x radiotherapy and ajuvent targeted therapy. Er/Pr positive her2 negative. I understand what it feels like when pathology results throws the unexpected at you and it’s difficult to navigate. It feeks like a lonely place. But as @millyd rightly says cancer is unpredictable and what I found difficult at the beginning was not having any control. Once I accepted the situation and learnt that there are lots of treatments, I started to relax a little. Not saying that it’s easy but things do get easier. It’s a mammoth journey but there is light at the end of the tunnel. We are fortunate of knowledgeable and experienced clinicians and well researched treatments. I wish you all the best. You can do this :flexed_biceps: xx

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Hello and so sorry your going through this right now it can feel hellish I too went from being told it was 7mm and early to 6cm tumour node positive and needing chemo radiation targeted therapy and hormone suppression I was a lot to take in. I think it’s totally understandable where your at and I hear the fear it’s all terrifying but try not to control it all trust your team and surrender to it even just a little you will get through this but you have to try and sit with it today not the future we are so used to controlling everything especially when we have children but we have to accept the uncertainty and we can only control

What we can take each day as it comes as you already now some will be easier than others you will get through this sending love and strength to you x

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Have literally just joined this forum this second & your post was the first that popped up which is quite ironic as im kind of in exactly the same boat as you.

Had BIRADS 5 from initial mammogram etc after finding a small lump (that I almost never got checked) Had biopsy taken. Was told 95% chance of cancer (but of course I prayed I was in the lucky 5%)

That was 10th July -got results in 29th July (I went on holiday as planned in between wanted to stay normal and didn’t want to tell my children) Was told DCIS with suspected microinvasion. Booked in for surgery following week had therapeutic mammoplasty with slnb as precaution (lymph nodes looked fine on first ultrasound at biopsy) …il add here mine is HR- ER- Her2+ grade 2

This week my final pathology is back - no DCIS atall just a full 67mm tumour IDC with 2 positive lymph nodes. I’m told the lymph nodes show micro traces of cancer and both show no extra capsular spread which I’m told is a good sign but now I’m obviously so scared for my upcoming PET/CT scan :sob::sob:

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