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Secondary breast cancer de nova - as first diagnosis

2 REPLIES 2
Kerstin
Member

Re: Secondary breast cancer de nova - as first diagnosis

Dear Jan, 

Thank you for your long reply, I have read it several times now. I have only just started talking to more people about it and it felt good to post here. 

Your opinion on the mastectomy is helpful, I think I understand how you felt about it and that you believe it saved your life.

It must have been hard during Covid to cope with it all! I pro ably had cancer then already but didn't know it! 

I think I need to have more questions answered before I decide and will see what the oncologist and surgeon will say. A possible reconstruction would make a big difference. 

You mention fatigue and that you have mets behind your nose - I hope this is not too uncomfortable for you?

Thank you again for taking your time to reply, I hope your people are there for you when you need them and look after you. You seem a very kind person.

It's true that none of us knows when we will die, but the difference is that we are likely to die of BC and very likely to die sooner than we hoped. Thinking about dying is exhausting. Not thinking about it can be exhausting too. Finding a way to live with it, to learn to accept it and still love life is the way now, and you are right, it does feel lonely and scary at time. 

I have registered for a zoom meeting and hope to find a face to face group, too.

Jan, wishing you all the best support and love and understanding you need in your day to day life, 

Thank you again, 

Kerstin 

 

Jaybro
Member

Re: Secondary breast cancer de nova - as first diagnosis

Hi Kerstin

I suspect many people could identify with your final comments. I have found Stage 4 breast cancer quite an isolating experience as people can’t quite grasp the enormity of the world we now inhabit. They don’t want to think about ‘incurable’ because to them it means death. While you look your normal self, even if you are plagued by fatigue, they will tell themselves you’re ok. You may be juggling with all sorts of side effects from your treatment but I’ve found that, until you lose all your hair, no one is really convinced you are seriously ill.

That’s great because we don’t want to be treated with kid gloves but, personally, I find it hurtful that people refuse to engage with the matter. They have a choice and we don’t. My best friend has often said ‘none of us knows when we’re going to die.’ Were it not for the fact that her husband died of heart failure in his sleep, I’d have blacked her eye by now. I believe it’s important to look around your circle of friends and family and choose very carefully who you confide in initially. It has to be someone who will be able to step back a bit, put their own feelings aside and help you with yours. They can’t help with the cancer, but they can help with the emotions. After that, it should be easier to extend the conversation on your terms. You’re not looking for pity (which you often do get) or for people to try and fix you, just acknowledgement of what you are facing and practical and emotional support as needed.

I found with my primary bc in 2018-19, all my friends rallied round. I had acquaintances asking to be added to my list of drivers! This time (and Covid maybe has a lot to answer for here), no one has offered. I have to reach out to a small number of people who I believe can help. The number is smaller because people’s social bubbles were so restricted and many people are being very slow to extend the circle they grew used to - meaning I’ve fallen off their radar.

It’s great news that you’ve responded well to treatment. For me, having a mastectomy was a no-brainer. It had two tumours missed by a mammogram and an ultrasound and the cancer had spread to 19 of my 21 lymph nodes. I wanted it gone. The operation itself was no trouble, I experienced no pain afterwards (not even a paracetamol’s-worth), just a lot of discomfort because of a drain and then the relentless exercising. The absence of a breast meant nothing to me except I believed I’d saved my life. But I was in my 60s and I’m assuming you are much younger. I’m guessing you might not be offered a reconstruction in your circumstances (it’s unusual even to be offered surgery at Stage 4 so you must be doing well). Personally, I’d ask the oncologist what the benefits of a mastectomy would be - because it’s certainly no guarantee the cancer won’t come back (my secondary bc tumour is behind the top of my nose!). There must be some benefits for them to have suggested it.

Losing a breast can be a huge psychological blow. You need a very empathetic partner to keep reassuring you that you’re the same person as ever. It’s usually resolved with a reconstruction. Ask if that is possible. After lockdown, I’m happily monoboobed - a prosthesis can be a real pain! My greatest regret is that, as a clothes addict, never above a size 8-10, all that’s gone. Lopsided is a restricted look but fortress bars are not for me. I actually wish I’d gone for a double mastectomy for aesthetics, especially as my remaining boob has grown from 34A to 36DD with treatments. So, sorry I can’t help you with that doubt. Maybe if you asked the one question in a new post, you might get more responses. 

You sound like you’re very grounded and, for now, are managing your condition well. Long may that continue. All the best.

Jan x 

Kerstin
Member

Secondary breast cancer de nova - as first diagnosis

HI all, I have just read the thread on this topic and found that the entries were all in 2019, so I thought I would re start the concersation, hoping to find people in a similar situation. 

I was diagnosed on the 4th Feb this year (world cancer day - so ironic). I had suspected it as my lump was quite big although it seemed to have appeared (why didn't I notice, could I really not feel it or didn't I want to?) There was quite a delay between my first appointment with the GP and my referral appointment at the breast care centre.

Within a few weeks I had a diagnosis of primary, then secondary breast cancer.

At that point my tumor was really growing and I was so anxious until I finally was started on my treatment of Zoladex, Letrozole and Ribociclib.

Since then my tumor has shrunk considerably and my mets in the lung and lymph nodes seem to be gone.

Now my oncologist has suggested that a mastectomy might be possible and I don't know if I want this as I would be continuing the same treatment after and am not sure about the benefits. I'm scared of the op, pain, complications and if I can cope with it psychologically. 

This is a decision that I will be facing soon, but apart from I am mostly positive and hopeful...learning to adjust my image of what it looks like to have incurable cancer. I have accepted it, I am feeling well and I have decided to be happy, because I am so grateful for my life, my people and I feel I am growing.

I don't talk much about it though and want to be more open about how my life has changed. Because from the outside it looks like it hasn't and I struggle to make it part of me - scared to open up and shock people, then having to explain etc. So I am avoiding it. I wonder if anyone is doing a similar thing?

Sending love to you all x