How did I get here?

Question

Hi everyone, what do I say…I am in shock! I felt it was time I reached out to the community as I’ve been reading all your posts the past few weeks and now I really need support and reassurance.

I am 56 and have a wonderful husband and three beautiful 20 something children. I had a routine mammogram in April (12 monthly due to Mum and sister both having BC in the past - both early and doing fine now) and diagnosed on 13 May with invasive carcinoma with micropapillary features, 17mm in size, ER/PR+ve HER2 2+equivaocal from biopsy and ultrasound/3D mammogram. A further weeks wait for HER2 ISH testing which was negative before surgery options were discussed.

As I have size G breasts and the lump was apparently so small I opted for WLE with oncoplastic breast reduction as my Mum and sister had both had good outcomes with lumpectomy so I was confident with the reduction they would get good margins. Surgery was performed on 30/5 and I’ve recovered well.

Here js the kicker…I went back for the surgery and sentinel lymph node biopsy results and first the surgeon tells me the tumour was 64mm not 17mm! Then he tells me there were mega metastases in the lymph node which was removed. On the pathology report it say ‘the lymph node is almost completely replaced by metastatic carcinoma with similar histological features’. The sentinel node was 28mm. Does this mean I have metastatic cancer?

I am reeling…how did they get it so wrong??? And what now? The surgeon has said the next step is an auxiliary dissection which he has booked me in on 30/6 to do…20 days away! He said he needs to wait for things to settle properly after the last surgery with reduction. Meanwhile this cancer is travelling all through me…

I am booked in for a PET with CT scan on Thursday which I guess they are looking for more metastases. Should I also be asking for a bone scan? I have not been referred to an oncologist yet, apparently that is after the next surgery but I really don’t understand why they wouldn’t be thinking to get me started on that now rather than waiting even longer.

I just can’t comprehend the results I got yesterday. I have so many questions and I just feel like the surgeon is following a routine but I don’t understand why. After a sleepless night of anxiety through the roof I would love some words of advice from this amazing community. Thank you x

leanneo · Answer

Thank you so much Kristen for your excellent advice. It has taken me a while to log back in as I did get bogged down reading all the doom and gloom online and thinking the worst - my husband told me to take myself off ‘online’ for a while until I had a clearer path forward and had moved past the highly anxious stage of testing and full diagnosis.
I had my further axillary surgery on 17/6 and a further 4 nodes out of 16 had macro metastases in them - so 5/17 positive. I started chemo on 14/7 and am now just over 8 weeks into a 20 week treatment plan which will be followed by radiation and hormone blockers.
Thank you so much for sharing your positive story Kristen, it is so reassuring to hear that you are 18 years since diagnosis with Stage 3 (like me) and are doing fine!
Thank you again and best wishes x

muccilli · Answer

Sorry to hear your pain and frustration. I too have just been diagnosed and will be having a double mastectomy on the 2/7. &nbsp;I’m just putting my faith and trust in the doctors that they know what they’re doing. &nbsp;Take one step at a time and trust the process. &nbsp;I too have felt frustrated and annoyed but they do this every day. &nbsp;Take a breath and one step at a time. &nbsp;Everything will become clearer. &nbsp;I opted for two lumpectomies until they said no more now I have to do bilateral mastectomy. &nbsp;Nothing is ideal about this situation for any of us. &nbsp;But trust in the process. &nbsp;Best of luck to you. &nbsp;I’m 59 and have two kids and a wonderful supportive husband. &nbsp;Lean on those you love. &nbsp;🥰&nbsp;

kristen · Answer

No it doesn't mean you have metastatic cancer. That can't be determined until cat scans and bones scans happen.&nbsp;
It is very very normal to find different things in suregry, and the pathology after wards than what is seen in biopsy and scans prior to surgery.
&nbsp;It is very normal to have a second ,even third surgery . They try to take the least tissue and leave healthy tissue if they can. But it can be hard to get good margins on all sides of weird shapes.
it is very normal to wait between surgeries and scans . They will sort it out, but it is hard to have to wait. But this will go on for months, its a marathon not a sprint, so try to mediate and&nbsp; do things to self calm, relax and heal. Everything revolves around medical apointments .&nbsp;
I just looked back at my old patholgy report after my mastectomy and it says&nbsp;
"Four of eleven axillary lymph nodes show metastatic carcinoma. Two largenodes show extensive replacement with tumour emboli in capsular lymphatics.No extranodal extension is seen."
That was 18 years ago, i was not metastatic, just Stage 3 ,grade 3b, since it was in my nodes. I am fine, had my chemo , radio , and herception etc .
yeah i used to think it was travelling all around me, i was diagnosed&nbsp; mid/late dec, but surgeon said ok to wait until after christmas for surgery .Then all the months of chemo later in jan to mop up any cancer cells. then radiation to zap any more left.
I think sometimes its best not to read those medical reports before you see the doctor. We have to trust them, or we drive oursleves crazy.Trust the process. they are the cancer experts, not us.

iserbrown · Answer

Hi!&nbsp; No doubt your family history has always been at the back of your mind.
Oncologist comes into the picture, as a rule, once surgery pathology reports are in!&nbsp;&nbsp;
The links within this post will help you gain some insight and formulate questions:- Understand your pathology report- Lymph node and armpit axilla surgery- Types and subtypes of breast cancer
It is all very daunting but most importantly it has been detected&nbsp;
Take a deep breath
Best wishes&nbsp;

leanneo · Answer

Thanksiserbrown​ for your reply. I’ve read all those pages thank you. It’s so overwhelming :(

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