Unexpected histology results - had been coping well but suddenly floored by yet more unexpected news

[sap1981]

Hi all

I’m really struggling with unexpected histology results so just writing to share and see of anyone has any advice or reassurance.

As I know is true for many, there have been many twists and turns along the way since I was diagnosed last October with early hormone positive breast cancer in my left breast. I was offered lumpectomy but then found out I have the BRCA2 gene which made me much more likely to get a new breast cancer in the other breast, so decided to go for a bilateral mastectomy. I had this three weeks ago, and the recovery was much better than expected - I have tissue expander implants which have been expanded enough to look fairly similar to my old breasts in clothes and I am recovering well. Until this week I had been generally managing to come to terms with things, and feeling relatively positive, especially after surgery, feeling relieved it went well and less upset about losing my breasts than I expected.

However I got my final histology this week. The histology showed a larger tumour (20mm) plus many smaller multicentric tumors over a wide area, plus 2 positive lymph nodes out of 9. In all my previous conversations I was expecting to be offered radiotherapy and tamoxifen at the most, but am now facing full axilliary clearance surgery, likely chemotherapy and then radiotherapy (plus tamoxifen). I am also now awaiting results of a CT scan, and having a bone scan to check for spread - I had previously not even considered this a possibility, which was probably a bit naive!

This news has completely floored me and I am struggling to cope with this change in what I was expecting. I think the worry about spread and the idea of chemo are the things that are scaring me the most. And just coming to terms with this different picture, when I was feeling so relieved that I thought I was through the worst.

I am 42 and have 5 and 11 year old sons. We have been open with them so far and I had been able to continue being with them and enjoying it, and protecting them from the worst/scariest parts - but since my last appointment I am struggling to be with them and not think about everything. I am so sad to have another surgery as I had just got back to being able to cuddle my youngest in bed.

I have never used this forum before and hope this post is ok. Not sure what I’m looking for really but just sharing in the hope it will help a bit.

Thank you all xxx

[Shi]

Sorry you find yourself here but glad you have reached out take things a day at a time and don’t try processing everything all at once, take it a step at a time and treatment at a time, things can chance each step do be kind to yourself many of us have had changes during treatments and many will have changes during treatments you are doing your best and that’s all you can do so please be kind to yourself if you can do ring the number on here and speak to a nurse and also tge someone like me option both you may also find useful as well as posting as much or as little as you need on here everyone will reach out I think everyone of us has had a wobble through things, you will find your joy and what works for you, don’t let it take your joy, it’ll try but don’t let it Shi xx

[Pollyann]

Sorry that you’ve had to join this forum but you’ll find many people who understand. I was in a similar position of changing diagnosis, from what was originally a non-invasive cancer to post-surgery results revealing invasive cancer and three positive nodes. Going from what I had thought might be just an op and possible radiotherapy, to needing CT, bone scans, axillary clearance and chemo also floored me! I was 40 so similar age to you.
Things to help you cope - lean on Breast Cancer Now - I didn’t access the forum at the time, but I rang the helpline constantly and the patient nurses on the other end of the line would listen to my fears and help explain things/put them into context.
I called the GP and got started on anxiety tabs, I also started counselling which was amazing. Tried every day to get outside moving and keep on with normal life as much as possible.
I really started to feel much better once the surgeries were over and I could move forward with the next stage of the treatment. Then time seemed to pass very quickly.
Wishing you well for the next steps and just take it a day at a time x

[boo1]

So sorry to hear this.I would say take 1 day at a time.We are here if you need to talk about anything .When I was diagnosed we got my 2 lovely rescue dogs.They have helped with the ball of stress I felt in my chest.Walking the dogs in the countryside really helps the stress .Going for lunch with my friends helps as we can talk about normal things too which helps keep sense of wellbeing x

[Nat1984]

My story is, in many ways, similar to yours.
I was 38 (Dec 2022) when I was diagnosed with breast cancer in the left breast. Despite the initial shock, I held on to the “positives” - lymphnodes looked normal, it was ER+PR+, grade 2, and despite there being a large area of DCIS, the invasive bit was under 2cm. The plan was mastectomy (my breasts are really small and tumour was in a difficult position, under the nipple), potentially followed by radiotherapy and defintiely tamoxifen. I was very positive, and was really relieved when the breast was gone. Recovered well, mentally and physically. 3 weeks later, I was told the 2 sentinel nodes were cancerous, it was now grade 3, and the DCIS had several sites of microinvasion, so they took the whole area (12cm!!!) into account, making me stage 3. I was rushed to have a PET scan. The wait were the worse days of my life. No eating, no sleeping. Looking back, I should had taken something for the anxiety. That came back all clear. Biggest relief ever. 3 weeks later I had the axillary clearance. Recovered well. I had seroma and cording, but both went away after a few weeks, doing the exercises religiously. I have full use of my arm now, I go to the gym, and so far no lymphodema. I was then given what felt like excellent news - one of the nodes had micrometastasis, but the other 7 were clear. At this point I found out I was a carrier of the BRCA2 mutation. This affected my chemotherapy plan, as Carboplatin was added to the mix. Make sure you ask your doctor about that - my initial oncologist was not onto it, but when I probed, he colsulted with colleagues and was advised that for BRCA, Carboplatin should be added to the usual EC + Paclitaxel regimen. Chemo is scary, but was not too bad for me. I managed to keep working (I worked from home) at reduced hours and taking care of my children (4 and 2 years old). I kept most of my hair by using the cold cap, so didn’t need to go into details with my kids (too young anyway). It all went really quickly, it feels like a distant dream now. Radiotherapy was, again, not too bad, just time consuming. I’m now on Zoladex, examestane and zoledronic acid. I’m considered high risk, so they are throwing everything at it. Physically, I’m really well at the moment. Mentally, I have dark moments, but also many good ones. I’m also on a target drug called Olaparib, taken for a year to reduce the chances of recurrence in BRCA-mutated patients. It is a recently-approved, high-cost drug, so you need to fit specific criteria, on top of being a BRCA carrier. On the NHS, I think you need to have at least 4 positive nodes. I was lucky to have my insurance cover it. When I finish with this one, I need to have preventative surgery. I hope you won’t be so high risk, so won’t need any of that, but I suggest always being informed of these things and asking the oncologist many questions.
From my experience, the stage you are now in is the worst, not wonder you are anxious. I send you hugs and hope for the best possible outcome. If you want a chat, feel free to message me!
Also, I don’t know where you are based, but in Kent there’s a group called BRCA Kent that is amazing. We meet regularly. They have a nice website and Facebook group too, where we support each other. xx

[sap1981]

Thank you so much for this. I’m so sorry you had to experience this too, but it is so helpful to hear of others with similar experiences. What was your treatment in the end?

Hearing from people on this forum has really helped and I saw some friends today which helped me stop ruminating at least for a short time! Xxx

[1980]

Really glad you reached out. Please keep using this forum as from personal experience I know it helps. I’m sure all of us have similar breast cancer‘journeys’. You get your head around one bit then something else crops up and feels like another punch in the stomach you have to deal with. I’m currently having some counselling free counselling from bupa through the MacMillan cancer website and it does help. It really does help to know we have each other and can relate to the rollercoaster avalanche of feelings that go along with it all. Lots of love being sent your way xx

[Pollyann]

Glad the forum is helpful, I wasn’t ready to access it when I had my diagnosis, but I wish I had!
After the surgeries I had 8 rounds of chemo (once every three weeks), which were 4x EC plus 4x taxol. After that I had radiotherapy, then I started on hormone therapy for 10 years of which I’ve done 2.5 years so 7.5 to go! The chemo wasn’t pleasant, but do-able. I wasn’t offered any genetic testing as there is no family history of BC in my family, but worth asking if you’re eligible.

[jnra]

Hello all, wow reading this is like what I experienced today. I was initially diagnosed with IDC grade 2 26mm but found out a few months later I had PALB2 gene which is like BRCA gene. So a month ago I had double mastectomy with implants. Today I went for results. Was told I had two tumours (multi focal) 22mm and 65mm and one positive lymph node - they removed two. So now I need scans, axillary clearance and likely chemo etc etc. I’m now terrified it’s spread, I just don’t know how to process it all. It would be great to hear how you are all doing now (hopefully well) and what I should expect…thank you oh and did any of you use a cold cap? Xx

[rosa1]

This is similar to me although when I was diagnosed chemo and surgery was mentioned at the start. I ended up having a mastectomy and lymph node clearance at the same time as the MRI I had and biopsy showed at least 2 suspicious nodes. After the surgery I was told all the lymph nodes were cancerous and the tumour was bigger than expected which really floored me as I was pregnant and had a 2 year old at home. As it’s grade 3 I’ve had chemo, will have radiotherapy and hormone treatment after. I just found it easier to hold onto the fact that even if it spread many people live for many years. Now I try and not think about it coming back as so far there’s no sign it hasn’t.

[eb13]

Hi Everyone,

Thanks you so much for sharing your stories. I hope everything is going smoothly for all of you. It is such a rollercoaster coaster
I was just wondering at what point you were offered gene testing.
I was diagnosed a year ago at the age of 42 with IDC grade two er+ and pr+ her2-. I have had a lumpectomy, radiotherapy and am on Tamoxifen plus Zoladex ( my oncotype was 17 so my oncologist recommended the addition of Zoladex). However, I haven’t been offered any genetic testing. I am now wondering whether this is something I should request. I also had an aunt who had BC in her early 50s.

[SL255]

I had gene testing after first diagnosis and ordered it myself on color. All genes came back clear yet I got a recurrence two years later! So it’s useful to rule or BRCA gene but otherwise I wouldn’t put a huge amount of faith beyond that.

[rosa1]

I was tested when I was diagnosed. They offered it to me at the royal Marsden due to my age just to rule it out. Luckily I don’t have the gene x

[sap1981]

Hi @jnra, I’m so sorry you’re going through this. I remember so well how I felt - when I got my BRCA result it was such a shock (no breast cancer in my family) but I came to terms with it and was pleased I could opt for the mastectomy - but then when I got such a worse histology than we had all been expecting, it was probably the worst part of the whole thing so far. Waiting for the bone scans etc is horrific, and honestly the best advice I got was ask your GP to prescribe you something to help you sleep/relax to get through the next week or so. My team also said to be it wasn’t that they expect the cancer to have spread, but just that the additional scans are protocol when there are positive lymph nodes, to make double sure. So fingers crossed there is no further spread.

I ended up going on the OPTIMA trial, which is to see if genomic testing of tumours can predict if pre-menopausal women with a low number of positive lymph nodes will benefit from chemo. My tumours were tested and came out in the low risk group so I didn’t have chemo and went straight to radiotherapy, tamoxifen and zoladex (ovarian supression). Radio was fine, it has made one of my implants a bit smaller, but that can be addressed when they are exchanged for permanent ones. So far hormone treatment has been fine for me, some mild hot flushes and maybe feeling a bit irritable sometimes - but that could be the whole breast cancer thing!!

Lots more to say but I think for where you are now the most important thing to know is that this part will pass, you will get a definite plan and then you can do it and get through it with the help of the medical teams. When I look back I can eemember how awful I felt, but I don’t feel like that now. Please feel free to reply or DM me - I found it so helpful when a couple of people who had similar experiences responded to this post.

Lots of love xxx

[sap1981]

hi @eb13 I was offered genetic testing after diagnosis, I think it was routine but also I am Jewish so in a high risk group. I would mention to your oncologist about your aunt in case that means they will test.

[eb13]

Thank you so much for replying. I was treated privately ( through insurance my husband has with work). I am wondering why I wasn’t offered the genetic testing. Can I ask how old you were when you were diagnosed?

[sap1981]

Yes of course, I was 42

[eb13]

Thank you- that’s the same age as me.

[flower5]

I’m also 42 and a couple of months further down the same road as you - good early prognosis based on size and clear nodes on scans, but turned out to be larger with 3 positive nodes. I’ve since had the CT and the axillary clearance which found one more positive node and I’m starting chemo on Wednesday. I too was blindsided by the pathology report, and it made me feel a bit naive, like I should have considered these possibilities. However, when I look back, I was rightly given infomation about likely treatment based on the facts available at the time, so there was nothing to prompt me to think about worst case scenarios. My CT found a couple of small things that are probably benign but need to be monitored. I now know this is commonplace so be prepared for that possibility. The clearance surgery was ok and recovery was similar to the first surgery. I feel positive going into chemo, so I hope that once you reach the same point you will also have come to terms with the change of direction. Feel free to message me if you have an specific questions.

Editing to add that I have 8 year old twins, and they now know as much about my treatment as I do, because I wanted them to be prepared for me feeling rough and potentially losing my hair. I’ve taken them to meet my consultants too. They have had a couple of wobbles, I think in part because as my situation becomes normalised people are less careful what they say in front of them, which makes me angry, but is probably unavoidable.