Just needing to talk

[chromodoris]

Hi all,

I'm new to this, living in rural Ireland (although planning to move back to UK next year), and have recently had mastectomy and axillary clearance for stage 3a multifocal breast cancer. It seems that although my tumours were all small (largest only 11mm) it is abnormally aggressive grade 3 and all my nodes were involved.

Saw the oncologist last week and his plan is to throw everything at me - doxorubicin/cyclophosphamide 4 cycles, taxane 12 weekly cycles, radiotherapy, 6-monthly bisphosphonate infusions for three years, and anastrozole for ten years (if I survive that long...)

I am a bit undecided. At first I thought I should take it all on, but at the moment am wondering if the extra time I get will be worth the potential disability from all the treatment. I'd be interested to hear of others' experiences and decisions.

I have no family, and don't want to burden my friends too much with all this, so here I am.

[HollyR]

Hi, it’s a lot to take in at the moment. I would personally go ahead with the treatment. I didn’t have chemo but am on arimidex. If your oncologist is talking about you being on it for ten years then I would look on that as a good sign. Everyone here will give you good advice, give yourself time to think about it. Choose a friend you can confide in I’m sure they will be a great support to you and you won’t feel so alone. Xx

[chromodoris in reply to HollyR]

Thanks for your reply. I think the oncologist was merely quoting the current recommendations so don't place much emphasis on the ten year thing.

I have been confiding in a good friend, but feel less comfortable about it now as it is putting a burden on my friend as well. Having lived on my own most of my life I'm not great at sharing stuff like this...

Arimidex is a long way off for me, but how are you finding it?

[HollyR in reply to chromodoris]

The ladies on here will be a great support to you. I felt so guilty putting my family through the worry. They never knew what to say to me, so I just asked them to listen if I needed to talk. I have arthritis with one new hip and the other needs doing, so I don’t know if the arimidex or the arthritis is the cause of the bone pain. I can cope with the other side effects. Keeps us posted. Best wishes to you xx

[chromodoris in reply to HollyR]

Thanks.

I know what you mean about the guilt. One of my closest friends lost his wife to breast cancer in her early 40s. It was very tough telling him about my diagnosis, but I couldn't lie to him. I felt that guilt at causing him to relive the past.

[Lainey66]

Hi there I can understand how you feel. At times throughout my treatment I would think ‘If I had no children or family I would have refuse this treatment ’ However now that I am through the other side and at the moment doing ‘ok’. I am happy that family and friends supported me through this. I have had to retire early from a career I absolutely loved, but I have taken up so many hobbies, I travel more, I am aiming to visit all 32 counties in Ireland - going to number 15 for a few days tomorrow. I have a cruise booked for next year, to Bali, Singapore, Bangkok and Vietnam. In the past I would have put any extra money off bills and the likes but now I have what I consider a second chance and I intend to make the most of it. Unfortunately the doctor told me the other day that there is sadly a high chance of this cancer returning (Triple neg, lymph nodes contaminated too). I had chemo then double mastectomy followed by a further 6.5 months chemo and 25 sessions of radiotherapy. I was on anastrozol now on aromasin. I have to visit liver clinic as my liver has been damaged by the chemo and there is concern that it may become cancerous, the same with issues in my arm too. However right now it is not cancerous and right now I aim to make the absolute most of enjoying my life. My priorities have changed and my outlook is brighter and happier. I have shed negativity and toxic people. I am so much happier. If this ever comes back - yes! I would fight it again. I hope that helps you.

I wish you so much luck and clarity in making your decisions. Only you know what you think will be good for you, I hope you make the best decision. In the meantime grab the world by the proverbial balls and make the most of it. Sending love and light.

Lainey 💐💐💐💐

[chromodoris in reply to Lainey66]

Thanks Lainey. You are one tough cookie! I'm still pondering but leaning towards accepting chemo again now. Not fully decided, but perhaps getting there.

And yes, I am grabbing the world. Currently in a rented villa in Mallorca for a week, hoping to get away without having to get my seroma drained before I get home...and as treatment not due to start until late November I'm madly trying to reorganise an African trip that I had booked for December. If I can squeeze it in before chemo I don't care what it costs!

[chromodoris in reply to Lainey66]

Which county is next on the list? I'm in West Cork.

[Lainey66 in reply to chromodoris]

Limerick is next, I’m in South Wicklow. I hope you can rearrange your African trip. That will be a great one. I’m having to sort out passports and visas for next year at the mo 🙄

[squeezebox in reply to Lainey66]

I did not have chemo or radiotherapy. I was told I didn't need to. I had a mastectomy and tamoxifen. I do not feel equipped to offer any advice on chemo radiotherapy.

I do agree with Lainey66.

I have got removed negativity and toxic people from my life and feel very positive and happy. I still work full time but in a different field.

I have had alot of other procedures and scares but all good at the moment.

It is only you who can decide on your treatment but this site will help you, no doubt.

Sending lots of love xxx

[carolinenailsea]

I was very sad to read your post. Its really difficult making such huge decisions when you are still reeling from the diagnosis. As you say, existing networks can find it hard and you don't always want to burden them and talk cancer - you are more than cancer but its almost impossible to get it out of your head right now. One thing I found was that you make new friends through this journey. You meet lots of other people at various clinic appointments that are also going through this horrible journey - and I found they are really pleased to 'be together' in this.

My only advise to you is keep asking your oncologist. He will be able to give you survival statistics for your cancer, age etc. The side effects vary from one person to another, for some people it seems to be hugely debillitating, but for others its very do-able. I am 5 months post chemo and the memories of the short term side effects are less and less vivid - for me, they were very do-able.

I wish you all the very best and am sending lots of positive thoughts to you. Hugs Caroline xxxx

[chromodoris in reply to carolinenailsea]

Thanks Caroline. I had more or less decided to ask for another meeting with the oncologist. Although I had questions for him last time I didn't ask them all as there was so much to take in and I wanted more thinking time to absorb things. As I have a medical background I have a pretty good understanding of a lot of it, and I'm not sure if that makes it easier or harder to decide. Although in theory I am curable, I think the nature of my cancer means it is ultimately likely to come back, but who knows when...

But I have lots of distractions now Going to view a property for sale next week in Scotland (had already decided to move back to UK before all this transpired) and trying to get that last holiday before chemo, if I decide to go down that route!

[Hidden]

Hi

It is a tough one , and I think everyone's personal details play a part , your age , if you have dependants etc. They do say that surgery is the "cure" and also can't identify if there are small undetectable cancer cells in our bodies , if the chemo kills them all off, if they just lay dormant for some people, what then triggers them to start to grow again - they just don't know and that is the quandary for me, you can have all the treatment and it can still come back. But having said all of that , the treatment does work for the majority of people , but it can affect people's quality of life , I am a patient representative at my local hospital and the big issue at the moment is fatigue , a lady on the panel with me is only 60 but has had to give up work as she is so fatigued , two years since all her treatment.

Have you used the predict tool ? It gives you details of how much the different treatment will affect your survival statistics, you could look at that and perhaps pick and choose what you have ?

It is fantastic that there are so many treatments , but as you say , at what cost ?

Good luck with your decision

Jo xx

[chromodoris in reply to Hidden]

Spot on Jo. Yes, I've looked at Predict and it does show a significant benefit from chemo, especially at the 10 year survival level. But as you say, at what cost? And stats can also be a bit misleading so they are only one bit of the jigsaw.

I'm 61, already retired, so I guess I could tailor my future life to whatever I am capable of. Question is, do I want to have to do that? Probably yes, but still undecided.

Pondering continues...but today's job is to arrange to get my seroma drained tomorrow. Was hoping to wait until I get home next Monday, but it's not playing ball...

[anne-57]

Hi, as others have said this is a lot to take on. My experience has been very different to yours so I have nothing first hand to add. However, if you are still undecided perhaps there is an alternative way to view things? Stats only go so far and there are always exceptions. If you start treatment you can always stop it again however there will be a point beyond which, if you delay starting, it is too late.

Meanwhile I agree that the way to live is planning and doing all those things you want to do. Enjoy your holidays and good luck with your move. X

[chromodoris in reply to anne-57]

Good points anne. I am always wary of stats, because they do not provide information for individuals. Exceptions both ways...But yes, I can start treatment and opt out before completing it if I really want to. Although I tend to finish stuff I start...

Wonder if there is anyone on here who plays the piano. I fear that peripheral neuropathy may take that away from me.

[blessedmother in reply to chromodoris]

I can relate to what you are experiencing! I have my 3rd recurrence! At 69 I am still here with these other beautiful ladies. I start chemo next week. My prognosis is similar to yours and my doc said no worries you will survive! You will also and with a good quality of life. I also am single. Here are some tips to help you that I have learned from this forum and others. Yes I had a little neuropathy from chemo 5 years ago-same drugs you are getting. This time I will ICE to avoid it. Just Google it-showing great results. Also started taking L-glutamate. This also helps stop it. Cell Stop will destroy the cancer cells. There are so many excellent supplements that can help you get through chemo and help destroy the cells. Organixx is a good company with pure abd,absorbable supplements. Come on and fight with us! We need you !

[Chrissie2 in reply to chromodoris]

I play the piano and yes peripheral neuropathy has taken some of the pleasure out if it but I am hoping that if I keep trying it will help in some way to strengthen my fingers. I also have arthitis which doesn't help

[chromodoris in reply to Chrissie2]

Thanks for that info, Chrissie. I hope you still get some pleasure from playing.

[Chrissie2 in reply to chromodoris]

I still do get pleasure but haven't been able to play so much recently as I haven't been well. However now feeling a bit better so fingers crossed x

[chromodoris in reply to Chrissie2]

Fingers crossed here for you too. x

[josiemarie]

Hi, l'm also living on my own in West Cork... so if you need an ear and a cup of tea. I took all the treatment they could throw at me 14yrs ago. My TN was stage 3+ and grade 3+ It had spread to my nodes with vascular invasion which was off the richter scale... l wasnt expected to get through chemo without it returning. Had 4xFec and 4xTax and six weeks radio. I didnt find the treatment that difficult to get through and apart from a few numbish toes have no lasting side effects.

Josie x

[chromodoris in reply to josiemarie]

Wow Josie, that's good news. Glad you coped with it. Just came here to say that I felt close to making the decision to accept all treatment, and your post is an encouragement. I'm near Drimoleague. Do you mind saying where you are?

[josiemarie]

Between Skibbereen and Ballydehob.. I used to live in Drimoleague.

[chromodoris in reply to josiemarie]

Might take you up on that cup of tea one day then

[josiemarie in reply to chromodoris]

Will look forwatd to it

[chromodoris]

Right. After much internal brainstorming I've opted to give the chemo a go. I head home tomorrow after a lovely week in the sunshine in Mallorca, so good for the soul. I've a busy time ahead, as I'm going to view a property in Scotland next week, and have managed to book a last minute short trip to Africa the following week. Then back home with just under three weeks to go before treatment starts. I'm going to face this head on, and just see what transpires. Fingers crossed...

[Debster2016 in reply to chromodoris]

Thank you for this thread and Wishing you all the best in the world with the treatment/s chromodoris. Please let us know how you are

Xxx

[chromodoris in reply to Debster2016]

Thanks Debster. Will do.