Mastectomy and SNB done
Already knew it was invasive lobular, initially told it was 11mm.
Results say:
11mm
One sentinel node affected with macrometastasis and extracapsular extension.
Axillary node clearance planned, waiting for appointment for CT scan.
Gutted.
Feel like it’s all pointless, death is certain from this so why bother with any treatment - my feelings.
Have kids - adults - they want me to go through it, get fat, bald, ill, for what?
14mm now not 11mm
Dear Macky,
You sound like you are in a very dark place at the moment. Do give our Helpline another call in the morning to talk over how you are feeling. They are open from 10-2. (0808 800 6000)
Take care
Janet
BCC Moderator
Hi Macky
I’m sorry you’re feeling so bad at the moment. You’re still in the early days when things are terrifying and cancer fills your mind constantly. I’ve done things like look on the Internet for a ‘nice’ wicker coffin, look to see if there’s a ‘nice’ green burial site anywhere nearby, planned how I would like my funeral to be and worked out how to go, of my own choice and where. However, I’m still here and, although those thoughts are still lurking at the back of my brain, they don’t come to the forefront very often. I think you need a bit of distance from the shock.
In terms of treatments, don’t feel too down about it. Yes, losing your hair and basically feeling rubbish (to put it mildly) for quite a few months sucks, big time. But it’s a temporary circumstance in the scale of your life. You won’t believe me right now but bear with me … you’ll suddenly find you’ve reached the end of treatment and day by day things will start to feel a bit better, your hair will be growing and so on. Whilst on chemo people used to say to me things like, wow, you’re half way through … just 3 more to go! My idea of 3 more was somewhat different to the way they thought about it because they didn’t know how it felt. There was no ‘just’ about it. But I got there. 10 days after my last chemo I walked up my first fell since I’d started treatment (albeit a small one, but nevertheless it was exhilarating). 6 weeks after my 8 months of treatment (2 ops, chemo, rads) I cycled the C2C (143 miles) in 3 days and raised some money for cancer charities. I find it hard to believe now that I managed it, but that shows how doable the whole thing is.
Modern treatments have advanced such a long way - including medicines to stop you feeling so ill. But also, it doesn’t always have such a bad effect. I know someone who’s reaching the end of chemo and she’s been working almost full time, walking big fells, and generally getting on with life without many bad side effects - and there’s no reason why you wouldn’t be like that. So I would say, what would be your survival chances without treatment compared to with - your oncologist will tell you that.
I hope you can begin to see that you do have a future. You have a family who love you and want you to be around for a long time - that’s lovely. You must wonder why on earth I’m bothering because I’m on my own and don’t even have children but I somehow have a survival instinct to want to throw anything at the cancer to stop it.
Please keep talking about how you feel because I do think that helps to…sorry…get it off your chest! And DO phone the helpline, they’re really very good when you’re in that dark place.
I feel like saying, “Take care” but not sure if that’s a bad saying, so I’ll say good luck and best wishes.
Love from
Flo
X
Dear Macky,
I’m so sorry things look so black for you at the moment. Perhaps you could ring the helpline in the morning (Saturday from 10.00 onwards I think) - they are very knowledgeable and caring, and you could ask for straight talking from them if that’s what you need at the moment.
Hugs, Jo x
Hello again Macky,
I couldn’t sleep and came on here to see if you’d been on again - and you have! I can understand why you’re in the depths of despair, but you’re crying out for more information.
I know it’s no good me telling you not to worry too much without knowing more, but it may be that it’s not as black as you’re imagining. I’ve heard of others with exactly that diagnosis, who have gone through treatment and carried on with their lives afterwards.
You’re going to have a CT scan and the nodes cleared and then they’ll decide on the best treatment for you. They’re going to give you exactly the treatment that will have the best results - and that isn’t the cheap option.
Do ring the helpline tomorrow (no, it’s today now!) for information as you, who can tell you what happened to her, how she felt about it and maybe feels now.
They might also be able to put you in touch with a woman who has had the same diagnosis and can tell you how she felt about it. what her treatment was and how things are with her now.
Love, Jo x
Hi Macky
Just thought I’d check in on you - would have done it earlier but I’ve been alseep and out and about … so you see, life does regain normality in time.
Regarding the extracapsular extension; I fully understand how you feel because I had that too, along with other bits and pieces. And it’s difficult to find much information about it. My consultant surgeons don’t tend to give me much information and I only found out about it when I read the oncology report - I thought I’d got over the shock of the initial diagnosis but that shocked me all over again. It was only from finding that swollen lymph node that alerted me to the fact that I had a problem in my breast, otherwise I don’t know how long it would have gone on before I’d realised.
There’s been bits of research about extracapsular/extranodal extension and from what I’ve seen it doesn’t seem to be a significant factor in prognosis. I think the thing to note is that they are aware of it so they will take plenty of the surrounding tissue to make sure it’s all removed during surgery. Then chemo, and radiotherapy (which I expect they’ll give you to make sure they’ve fully sorted that node), is the belt and braces to make sure it’s fettled. Mine is triple negative so I don’t have any backup treatments, unlike the ER+, PR+ and HER2+ people.
I’m glad you’re conversing here because it helps to prompt us into giving you more information from the point of view of those of us who’ve been through it. There’s so much practical advice we can give, as well as moral support, so don’t despair, we can help you through it all. Also, your children are keen to keep you around for a long time so lean on them and let them help you with practical things that will make it easier for you to cope.
Keep talking. Bye for now. I’ll check in on you later.
Flo
X
Hi Macky
I am so sorry to hear about your experience and I hope you have managed to get the information you need. I had several nodes invaded including a node with macrometastasis and extracapsular spread but thankfully my CT scans came back clear. My final diagnosis was a big shock as originally I was told that my prognosis was very good based on the original biopsies and that I might not need chemo at all. I think the number of lymph nodes affected is more significant than it growing out of one node. If you are not happy with your consultant you can ask for a second opinion, some may be better at giving information than others.
I am going through chemo now and it’s not nearly as bad as I thought it would be. I have had two rounds and am managing to work full time, taking a couple of days off for chemo and recovery and working from home when I need to. My medical team recommended sticking to my normal routine as much as possible would help me through chemo but if it gets too much I will cut back to part time. I’m lucky to have a very supportive employer. Also doing the cold cap and still have a most of my hair. For me the first few days have been hard as my team are still trying to find the right anti nausea meds for me but in weeks two and three I was out and about seeing friends and doing the things I enjoy and plan to do the same for this round.
Px
Also meant to say when I was first diagnosed I was told the stage you are at now is the worst part of the whole process and once you have your treatment plan it does get better.
Hi Macky - it’s good to hear you’ve managed to get up and have something to eat. I know when you’re feeling really low it’s difficult to motivate yourself to do anything but getting a bit of exercise will benefit you both physically and mentally. Try to get out, even if just for a 10 minute walk - it really does help. Think about things to pamper yourself to make you feel a bit better; try a warm soak in the bath before you go to bed - maybe get some epsom salts to put in it as this will help to relax you.
Your oncologist will give you an idea of prognosis statistics, but they are just that - statistics. My consultant said the quote, “Lies, damn lies and statistics”. They’re not specific to you so don’t get too hung up on them. Also, the stats are based on old data. The treatment you are getting is more up-to-date and more targeted. Plus, there are dozens of research trials on the go all the time which are improving our chances of disease free survival.
I hope you get a good night’s sleep.
Take care.
X
Hi Macky - I hope you’ve got on okay today at the hospital.
I share your frustrations regarding the MRI scan. I had a scan after diagnosis to establish which surgery I needed. The scan came back clear so I had a lumpectomy and WLE. When I got the histology following the op I had satellite tumours as well as the main tumour so I ended up having a MX a month later. If the MRI had shown the satellite tumours (which I would have expected it to based on the size of them) it would have saved me an op. Unfortunately these things aren’t always so clear cut. I have a friend who had a clear mammogram only to find a couple of months later that she had a 5 cm tumour which appeared after she injured herself.
Don’t get too stressed about the statistics; try to focus on getting through treatment because statistics aren’t you individually. They’re just a guideline to help the medics decide what’s the best course of treatment for you.
Let us know how you’ve got on today.
X
You and I have many similarities, Macky. I wanted to know my prognosis but in my head I was thinking I’ll get good stats and that will make me feel more positive - which I had been until the MRI scan let me down. However, for me the stats were not great and it was like the shock of diagnosis all over again. I really struggled with being positive after that, although for a long time I didn’t share that information with other than 2 close friends. Sometimes it’s better to just go with “it’s very treatable”, which my consultant kept telling me, rather than delving deeper, which didn’t happen till I met with the oncologist. And my NPI (Nottingham Prognostic Index) just made things even worse. The onc didn’t explain it, it just said NPI 6.5 on my report and I didn’t know what it meant so I Googled it. That really stuck in my head!
Try to get as good a night’s sleep as you can. Although anaesthetic isn’t great I figure it’s time when my brain gets a chance for a proper rest from it all! Do make sure you do the exercises to get your arm working again. It’s hard at first so don’t overdo it but I did mine 3 times a day and got if fully funcitioning quite quickly.
Best of luck with the ANC and keep us updated with your progress. We’ll be here when you’re feeling ready to chat again.
XX