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TSR
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01-05-2012
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09-03-2016
02:19
4 Hugs
Those of us who have managed to skip out of the Woods (with our fingers crossed) like to check in occasionally. I just wanted to share my 5 year clear MOT. I like to call it an MOT, as like the motoring variety, I am aware that there are no guarantees, and that I might break down tomorrow! It is 5 years since my grade 3, HER2+++ tumour, and all my lymph nodes were removed (most of which were affected). I am happy and grateful to be here, and sharing this with you all. Hopefully it will be of some comfort to a few of you who are newly diagnosed xxx
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07-06-2014
03:05
1 Hug
Hello to All. An early Woodie here. In fact New Years Eve 2010 I have just noticed. Karen (SCACO) and I became friends outside the Woods, as have a few of us, and we all still miss her. So raising a glass in the JM seems obligatory. However, my main reason for the quick visit is like Supertrooper, just to say there is a world beyond these deep, dark woods. It's not easy leaving the Woods behind- partly because none of us can ever be sure we will not need to return- but slowly I found a 'new normal.' One that whilst acknowledging that fact- does not dwell on it too much; at least not most days. I will scoot round the perimeter, blasting any gremlins I see on the way- wishing you all health and happiness xxxx
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13-03-2014
09:30
Thanks Moorcow. Primrose - you will get there- we all have our weepy times. Have you thought about any further help? Counselling was great for me- and the BCC peer support service can link you up with someone with a similar diagnosis who is perhaps a bit further down the line? Lots of love.
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07-03-2014
05:38
I know how slavishly I checked for positive HER2 threads when I was diagnosed, so I thought I would share. I passed my 3year MOT today. I was diagnosed in October 2010, and had chemo before my MX, hence this being the 3yr mark now. Oodles of nodes involved too, which I know can also be very frightening at the beginning. Good wishes to all x x x
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28-03-2013
08:46
Morning All.
I vividly remembering feverishly scanning posts for any positive posts after finding out I was HER2+++. Two years is a big milestone, and one I feared I would not make. Milestones are funny things, the only comparison I have is being pregnant, and thinking, 'if I can only get to 3 months,' and then of course quickly overtaken by 'if I can only get to 6 months' and so on. And that's a bit how I feel now- looking forward, with fingers and toes crossed for the next one! It almost feels like tempting fate to post, but here goes!
I was diagnosed in October 2010, and 6 rounds of chemo, along with my herceptin starting followed, before my MX and full clearance in March 2011. I then had radiotheray, completing hereception in January 2012 and an oophrectomy and recon followed. Zoladex, tamoxifen and Arimadex were also thrown into the mix.
There were times when I thought I would not make it through to the end of the month, let alone 2 years! The HER2 factor terrified me when I was first told (yes, I googled it- stupid, stupid......), but as time went on, I came to see it as 'another string to their bow' in terms of what the oncology team could arm me with.
So, for all of you out there still feeling sick, and floored by a diagnosis, I hope this helps. It get's easier xx
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18-09-2012
09:28
Raising my glass to you as well Scaco. Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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14-06-2012
08:39
Hi Shadders,
I'm 42, and finished my rads this time last year. I'm ER+, and went on tamoxifen, but also Zoladex for 6 months, before having my ovaries removed earlier this year. The Zoladex injections shut your ovaries down completely, and my Onc wanted to see how I felt, before a more permanent solution.
I've been very lucky with SE's so far, I just find it more difficult to regulate my temperature than I did pre-menopause! For me, the worst of the hot flushes disappeared within about six months. There are many women on here who have been prescribed mild antidepressants to help with SE's though- to greater or lesser success. I can't remember which thread it was, and I still can't navigate round this new site, but it was fairly recent. I also found a 'Chillow' very helpful at night,
Best of luck x
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13-06-2012
08:07
Grumpy,
Sounds like someone has a teeny bit of a God Complex........? Have you asked for a second opinion?
Tracey
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01-06-2012
08:24
Hi Roseric,
I too was taking Tamoxifen, and then had zoladex added in to the mix!
For me, it was fine. My chemo ended mid feb, and then the zoladex started in May. I am 42, so well before menopause, but didn't have a period in between. I don't think my hormone levels had a chance to pick up after the Tax, before I started on Tamoxifen and the Zoladex.
I am very prone to headaches, but the zoladex did not make that any worse - better if anything, with less oestrogen flying around. I did find I would get a little tearful/moody round the last week of the 28day cycle, and I do know a few ladies on here have felt they were badly affected in terms of mood swings.
The following year I had an oophrectomy (sp??), so I am back to just the tamoxifen at the moment.
The good thing about Zoladex, is it is not permanent, so you can stop at any time if the SE's are bad. Best of luck with it xx
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31-05-2012
08:20
Hi Grumpy,
I had my recon 3 months ago. I had an LD with implant, and a risk-reducing mx on the other side, so completely different to you. It was a year since my radiotherapy, but the healing on that side, was no different from the non-rads side. I healed very quickly, with no infections. I did take high quantities of arnica, which helped, and previously had kept it well moisturised. The only issue my surgeon mentioned with healing, was if there was any oedema when he did the op - he would have not been keen under those circumstances.
I hope you get what you want x
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29-05-2012
08:44
Ruth- I had LD, but, on the 'good' side, they just put in the same size implant, using my chest wall muscle and the extra skin (I was a DD, now a C). Don't know if that is relevant now!
I have had my ovaries removed on the advise of my Onc. My decision to have the risk-reducing mx was mine. I was very clear when I raised the idea with the surgeon, that I knew in terms of my 'mortality' it was whether I go on to develop secondries. But I still felt that it was a bit of a time bomb strapped to my chest, and as I said, cosmetically I felt it would give a better matched result as well, with the recon I had chosen.
I think the important thing is, that we are all allowed to be involved in the choices that are right for us in terms of our treatment, rather than just being 'told' what is going to happen. It is impossible to 'move on' otherwise.
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25-05-2012
08:40
Ps My friend was also in that position, and she is 4 years NED this week!
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25-05-2012
08:39
Hi Debbie,
I was the same. It's unsettling isn't it? But then my surgeon went on to say, after the pathology had come back, that the results were 'as good as they could be,' and that he would be pleased if he were me.
You have to remember that many people have their surgery first, and so never know what effect the chemo has had, or not had.
You obviously have responded very well to the chemo, and the surgery will remove the rest - that's why we have it!!
Hope you are ok, x
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24-05-2012
08:26
Hi CoachK,
One thing that you realise on the forum, is that everyones experiences are slightly different!
Little things that I found helpful in hospital were: loose, open fronted tops - leggings or pj bottoms (it's nice to be able to retain SOME modesty). Also my iPod with music, and a couple of audio books, hand cream and lip salve are always welcome in a dry environment. Wet wipes are good too, when you can't get to wash your hands. Maybe some biscuits and juice? If you just can't face a hospital breakfast, then a biscuit can be enough to put something in your stomach to help cope with the painkillers.
When you get home - lots of pillows, AND DO THE EXERCISES they give you! It's very disheartening at first, but really does get easier, and you will reap the benefits.
Best of luck, and wishing you a pain/infection free procedure x
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21-05-2012
02:42
Hi Ruth,
I have actually just posted about my experiences - in the 'surgery,' section I think. Although having just logged on, I have found it hard to find with the new forum layout - AND I NEW IT WAS THERE! Lol.
I can only say what was right for me. I opted for a risk reducing mx at the same time as my LD delayed recon. I felt that my 'good' side was a bit of a 'time bomb.' But in addition to that, with the type of recon I chose, involving an implant, I felt that would get a better cosmetic result having both done. I had visions of, especially as time went on, having one very pert, firm breast, and one looking like a spaniels ear!
I am very pleased with the results, but it is not the right thing for everyone. You will face a longer procedure and greater recovery time, and also perhaps mourn the loss of your 'good' breast as much as your did with your original surgery. You may also lose the other nipple, or lose sensation in it - and this is another considerstion. I don't know - only you can decide. My advice would be to ask as many questions as possible, and look at photos of the results you can expect from both ops.
Good luck with whatever you decide xx
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18-05-2012
08:57
I just wanted to share some positive feelings for all those facing a MX or considering reconstruction. I know I have been guilty of using this forum constantly during my active treatment, and inevitably, as your life moves on, you post less.
I had a MX in March 2011, with delayed recon. It was tough emotionally, but physically, surprisingly easy to recover from. I was fortunate to have no complications, and although I later developed mild lymphoedema, the scar healed very well, and was trouble free. As time went on, I actually found it quite reassuring in some ways, not having an immediate recon. I had a very large tumour, and I felt that any initial recurrence could be picked up more easily without an implant in the way (a personal feeling I hasten to add- not a medical one!) My rads were also fairly trouble free, without a breast or implant to move about and pull the skin.
I chose to have an LD recon, with implant, in February. I also opted to have a risk-reducing MX on the other side, with immediate recon. It was a long op, and I was very uncomfortable when I came round. But I had fabulous nursing care, and I was home on day 5, and feeling a lot better by about day 10.
I love having a cleavage again, and my new breasts are a great shape. Having lived with only one breast for a year, maybe I appreciate the 'new model' more, rather than comparing it to my old breast. My new breasts are completely different - much firmer, smaller- and so far without nipples - I don't look the same as I did pre BC, but for me, that is ok. My partner has adapted and coped. What can I say? Life moves on doesn't it? And this is helping me move into the future, rather than mourning what I have lost. I know recon is not the right choice for everyone, but it has been for me.
It can seem like an impossibly huge mountain to climb, especially combined with other treatments - but small steps get you there. Best wishes to all - whatever stage you are at,
Tracey
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18-05-2012
08:15
Hi Liz,
We were in almost exactly the same situation. Like 1J, I used several pillows. You might also find it helpful to make sure you are sleeping with your MX side at the outer edge of the bed, and then you can put your drain on the floor. I had full node clearance, so found I had to rest my arm on a pillow too.
Good luck, it IS do-able,
X
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23-04-2012
01:57
Hi Tracey,
I just left the fluff - and a bit like baby hair, it was just gradually replaced by thicker, more 'normal' hair. In fact the hair itself got stronger and stronger, so that as it grew, it just looked like I had 'frosted' tips to my hair. Six months from my last chemo, it was fine,
X
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16-04-2012
09:31
Hi Kate,
It seems to me that quite often it is the 'peripheral' things connected with BC that upset us so much - the hair loss, hair growing back grey or curly, weight gain and serious conditions such as lymphoedema and osteopenia. When you have been so much it seems like the final straw.
I am taking a calcium and vit D supplement, and despite having my ovaries removed, am staying on Tamoxifen at present, to try and help my bones. They will do another dexa in 18 months. I was very interested in what Welsh Girl wrote - sound like very wise words, written with the benefit of hindsight. I know I have had a very 'devil may care' approach to the osteopenia, on some level thinking perhaps that I would be delighted to live long enough to develop osteoporosis! But if taking yet more pills is distressing, think how much worse fractures, physio and severe lifestyle restrictions would be.
I was also interested in what you say about delaying your coffee. Is that after the supplement? I have not had any advice about avoiding food or drink for 1/2 hour.
I am developing a different routine and lifestyle these days (lymphoedema and osteopenia) but I try and see it as a positive thing. Enjoy your Sundays, and the decades of Sundays ahead,
Tracey
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