Shock of new diagnosis

[yorkshire_lad]

11 days ago my 45 year old wife mentioned that she had noticed a new lump in her right breast - in the same location that she had a cyst around two years previously. She also had some discomfort in her right armpit. She was sure it would be another cyst, but made an appointment at the breast clinic anyway. The mammogram came up clear, but the ultrasound showed something suspicious and a biopsy was taken - the radiologist was so confident that it was cancer that he said he would want a second biopsy if the first came back negative. The surgeon was discussing it as cancer before the result came back, so they seemed pretty sure. Initially referring to the size as 3.5 cm.

Then began the horrific wait to see if it was indeed cancer and what the situation was. She since had an MRI and PET-CT Scan (which was a scary process in itself with the radioactive tracer).

The follow-up consultation confirmed it is invasive ductal carcinoma, Grade 3, and much larger than they originally thought from the ultrasound - 5.4 cm in size - he mentioned that it was more of a group of individual tumours in one location, rather than one tumour. On the positive side, it sounded like the MRI and PET Scan did not show anything elsewhere.

The whole thing has been a total shock and now it sounds like we just have to wait till the results from pathology come back. So far they know it is ER+ and PR+ but the HER2 status is not yet known. From what the surgeon has told us, if it is positive, she will be heading for chemotherapy as soon as possible. If it is negative the biopsy will be sent for Oncotype testing.

He has said she would need a mastectomy because the cancer is so large relative to the surrounding breast tissue.

This news has shaken our world, and the uncertainty around results and forthcoming aggressive treatment is difficult to deal with. We are trying to stay as positive and upbeat as possible, especially around our 7 year old daughter. But it is difficult at times.

My wife has always been so healthy, in great shape, eating well, and rarely getting ill. It just came so out of the blue. She is finding it really difficult to contemplate the treatment and is worried about the effects of chemotherapy in the long term in particular.

We are just trying to take each day as it comes at this stage, and just reaching out to others going through the same or similar experiences.

[fp_flint]

I am so sorry that your wife and you are going through this.

The waiting is the worse, for our partners you feel so helpless to help us.

Cancer doesn’t discriminate on health or age.

Like your wife, I went in because of pain in breast..Stage 3, aggressive Matestatic Breast Cancer, my lymph nodes biopsy also positive, I was told straight away that I would have a Mastectomy.

One thing I can say is that the support of those that love us, the love of our partners help us cancer sufferers to have so much strength to overcome this….it will change both of you, but you will find inner strength you didn’t know.

Recommend that you and your wife have counselling, I had as I felt helpless and out of control ..it gave me an opportunity to find ways to advocate for myself and felt more in control..Most private Medical Insurance will provide if not accessible, MacMillan’s can help here, as well as your GP…you go through all the grieving emotions of what was, is and will be..

I am now classed as No Evidence of Disease.. that’s the best news ever!

This forum in Cancer Now, the UK Breast Cancer Support group on FB group https://www.facebook.com/groups/ukbcsg/?ref=share

Have been so amazing in my journey..

Hugs

[demimiray]

Sorry you’re having to go through all this. Just wanted to chime in as I had a fairly similar diagnosis in November.

I’m 33 so no screening, but went in because I could feel a pretty big lump. The ultrasound took ages as he clicked away, it measured around 4-5cm, the only positive thing he could say was there didn’t appear to be anything in my armpit lymph nodes. They did about 3 biopsies and scheduled me for an MRI straight away. Wasn’t told anything, got the diagnosis 2 weeks later. MRI showed it to be 72mm. Huge!

ER & PR positive but had to wait for the HER
to be confirmed as negative. Also had the PET-CT, the waiting for those results was literally the worst part of this so far.

3 weeks after diagnosis I had the single mastectomy - got great clean margins and pathology showed I had only micromets in 1 out of 4 lymph nodes tested - so negative enough but it kept chemo on the table. I never had the oncotype because they wanted to be aggressive. I am now partway through the chemo regimen.

There’s so much information thrown at you that it is overwhelming, all you can do is take it one day at a time. Also so much of the information won’t be relevant - she won’t have all the side effects. Chemo has been WAY more manageable than I expected so far.

I highly suggest focusing on just the next stage, as soon as you know what that is. I was googling too much about chemo and radiation before it was really relevant. You’ll have time to learn and prepare when it’s the next thing on your plate. It’s easy to get ahead of yourself I find

And this community has been very helpful, I started posting here once I started chemo as there are monthly starter threads so everyone is going through the same sort of stage.

I hope you guys can find some balance and it will be easier once your treatment plan is nailed down and you can focus on one thing at a time

[misswoof-88]

Hay there, I’m sorry you ended up here but you are in the right place.

I too was diagnosed with IDC last summer. I ended up with a lumpectomy rather than a mastectomy and a SNB. Thankfully clear margins and nodes for me but it took a while for them to nail down my HER 2 status. It eventually came back as negative/low. My tumour was tested 2/3 times to get a clear result.

My understanding is that there is a very specific treatment for HER2 that, these days, is very effective. The stats for most of us is good.

All of us understand the torture of the pathology wait, but as has been said already, just focus on your next steps and try to keep busy. Normal is vastly underrated!

I have experienced both sides of this. My husband went through cancer treatment before me. And had in fact just finished his radiotherapy when I was diagnosed. So, yes, it felt like a huge slap in the face. I found a lump during HIS treatment.

I too am a non smoker/drinker and have always been fit, active. Cancer really does not discriminate. My personal trainer also has breast cancer- stage 4 metastatic. Trust me, there’s a lot of us out there! And we all go through the same early fear (2am googling etc). It can be a lonely place for patients and for their partners.

Advice: take one day at a time. Accept help from friends and family when offered and get a pad & pen to make a note of any questions that you have-and take that into your follow up appointment. It can be difficult to absorb detail when we are bombarded with medical stuff and trying to get our heads around it all. Making notes really helped me.

We all feel how we feel. There is no right or wrong way to react. Anger, fear, lack of control, feeling like the rug just got pulled: all of these are frequently spoken of on here. We all get it.

But, there is light at the end of the tunnel for the vast majority of us. Just follow the treatment plans, one step at a time. There will be bumps in the road, but your wife will get through it and you will be there for each other. Reach out if you need help. MacMillan are great and there is help on here too. Your wife will have gotten an info pack and you’ll have contact details for the breast cancer nurses in there. Mine was fantastic. I had some post surgery issues and she was always there- above & beyond. Amazing lady.

Deep breaths… head down and push on through.

FYI: to give you a bit of perspective, which may or may not be helpful, the lady I mentioned above, my personal trainer, She was diagnosed with incurable stage 4 breast cancer two years ago. Yes, shes had some rough times, but she’s full of life and refuses to be defined by her diagnosis. She is an athlete that also just happens to have a medical condition that needs controlling (that is her take on her own breast cancer). She keeps taking the pills and doing the PET scans and, well, so far- so good. In fact she is running a half marathon next Wednesday! She’s awesome. So, as I say, there is always light. The word “cancer” is scary as hell, there’s no doubt. But, for most of us, it’s treatable and you will be able to get on with your life. Yes, you are never the same. It changes you. But you ARE still you.

There is always help on here if you need a bit of support. Both of you. This place got me through some dark days. I got talking with a few ladies on here that were going through their surgeries at the same time as me. We not only supported each other - we had a good laugh too. I particularly remember our “tips for hair washing post surgery” debate. It got a bit silly, but it was good to have a giggle at it all. It made us feel normal.

All the best to you both.

[yorkshire_lad]

Thank you so much for your kind message.

Sorry to hear that you have been through this with an aggressive form of the disease.

You are right - the waiting is horrendous and does make us feel powerless.

Thanks for the recommendation regarding counselling. We will look into that.

All the best.

[yorkshire_lad]

Thanks for your reply and for sharing your own story.

It does sound scary when the MRI results come back as a much larger tumour. One of my colleagues at work who had breast cancer warned us to expect this, but it still came as a shock.

Thanks for your advice about the way we approach this and taking one day at a time. This is what we are trying to do, but it is difficult to completely block out major aspects of the treatment which feel inevitable.

Thank you again for taking the time to reply.

All the best.

[yorkshire_lad]

Hi, and thanks for replying with your story and advice.

You are right - normal is vastly underrated! (Trouble is, you don’t know how much until you are living through something like this).

I am so sorry to hear that you are going through this and that your husband too has been through his own cancer experience around the same time.

Your advice, and the advice of others, seems to be consistent around taking each day as it comes - so we will follow this as much as we can.

As for your personal trainer - she sounds like an incredible person.

Thanks also for your advice on the breast cancer nurses and MacMillan - we may need more support, and we will reach out to them.

I will encourage my wife to join the forum too - I am sure it will help.

All the best.

[misswoof-88]

Indeed you don’t. Our particular type of critter and the journeys we take to get it out if us is individual, but the waiting for results and the sleepless nights is a theme we can all relate to.

My tumour was also ER and PR positive. From research I’ve done, the progesterone side can be helpful. Recent research seems to indicate that the progesterone has a slowing down effect on the estrogen receptor. Over the years they have noticed that ER/PR + cases tend to have better outcomes. Of course, with all cancers, the important factor is early detection. The quicker it’s caught, the better and if she is HER2 positive, that may explain the size of the tumour area. But, as has been said, it’s the pathology of the tumour that will give them the information that they need to plan her next treatments steps.

There’s so much to get your head around this early, that is often not helpful to be bombarded with data. But you’ll end up with a much clearer picture once your wife’s tumour/s gets to the lab.

It’s not an easy wait. Keep as busy as possible. Most of agree that the wait after surgery for pathology results/node biopsies is just horrible. But, you know what, regardless of the outcome: knowing is easier. It somehow makes it better to have a defined path. And by the time you get the results, they will already have discussed your wife’s results within her MDT (multi disciplinary team- ie her surgeon/oncologist etc). You are presented with the pathology -and- a treatment plan to give her the best possible chance as getting her life back. And the vast majority of us do- node involvement or not. It might mean more treatment but you’ll cope. What’s the alternative? Somehow we all find the strength to just push on. We all want our lives back. Most of us get there eventually. And even my trainer with metastatic cancer, lives with it. Yes, She won’t get rid of it. But as long as the meds keep it under control, she’s living a ‘normal life’ - long may it remain so.

Look after each other and all the very best to you both. (I’m originally from Yorkshire btw - we are made of strong stuff )

[yorkshire_lad]

Thanks so much for the positive messages - as you say, there is a lot to get our heads around. This week has been more of a waiting week - waiting for results and waiting for information on the treatment. We are just trying to focus on our health - sleeping well, eating well, getting some exercise and meditation. We figure that there is not much else we can do right now, and it should help to have a positive mindset.

Thanks again!