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WendB
Member
since
01-05-2012
21
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2
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01-03-2017
05:41
Hi everyone After a few weeks waiting for confirmaton, I have now been told I have secondaries in my hip and possibly chest wall and side of my lung. I've agreed to be part of the SOLAR -1 trial, including Fuvestrant.( Tissue has been sent off so unless they decide otherwise from that I'll start n a week or so.) Is anyone on this trial-or on Fulvestrant? Can you give me any tips? I am hoping to carry on working but have read various horror stories about pain from the injection and being wiped out for days that are beginning to get me down. Is that scaremongering or reality? Thankyou xxxx
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20-12-2016
10:02
That's good to hear- Thankyou. My bone scan isn't until the 28th so I have to wait all over Christmas! But I'm trying to focus on that and treat the scan as " just something I have to do" though my daughter will still be here then and won't miss much! It's such a help knowing that you are all here! Thankyou x
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10-12-2016
01:27
Thankyou Carolyn. That sounds pretty similar to what I think I'm looking at currently. Ironically my Mammogram result came back this morning and is clear! Thankyou for your hopeful words. xx
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10-12-2016
09:26
Thankyou Marion P and Moijan. Middle of the night surfing ( yes I know we shouldn't do it, but we do...!) threw up the information that mucinous cancers ( as both my BC's were) very rarely mestasise. To that I feel a glimmer of hope and then the thought " But how many times have you been the exception?!" Am trying to stay hopeful but realisitic.
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09-12-2016
05:48
2 Hugs
I was diagnosed with Lymphoma sixteen years ago( I'm 56) and spent 18 months having comtinual treatment including RT which hit vulnerable tissue and caused a mucinous BC five years later. I was glad to be alive and accepted this as a consequence. I was assured that mucinous BC's rarely spread. A lumpectomy would suffice. Six years later it returned in the same breast and I had a mastectomy. I was again given reasurances and a bone scan showed a " dodgy hip " but I was told this was more than iikely wear and tear or the beginnings of arthritis. This " artrhitis"-sore hip, groin, limp-has got worse lately so I had an X Ray which has come back " suspicious". It seems that bone mets are suspected. I am slmost at the end of a long-winded , very sad divorce and have recently got back in touch with an old freind, a lovely man with whom I am about to start a new life. We are SO happy and excited and now this.....I am devastated. I don't know how to reassure him or how to carry this as all the info I read gives me such a grim prognosis. My daughter gets married in July....hr teenage and young adult life has been overshadowed by my repeated cancers....and now her wedding day will most likely be too. The combo of all this is devastating...I'd appreciate knowing how others handled this...what kind of treatment awaits etc etc.The idea of yet more chemo, hair loss, debilitation fills me with dread. My partner says he wants to care for me if the news is as is expected, but I just don't want him to have to deal with it. It isn't want he signed up for-thugh he knows the risks...in turmoil frankly.
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29-08-2013
10:35
Your responses ( and the many ' reads' without responses) convince me that I was wrong to post-but thankyou two ladies for doing so anyway. I can assure you that during two ptevious cancer episodes I have been where you are and up until the last few weeks did not believe I would ever get 'back to normal'...so if nothing else draw hope from my present state. Whether my situation is a source of amusement or easily dismissed, it is nevertheless a consequence of living with and beyond cancer, so I had hoped that someone out there might have shared it. Not so, it seems. So maybe I am just going a bit barmy after all... Take care all.
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27-08-2013
02:16
I feel a fraud with such a 'problem'. So hopefully I will give you all a good laugh reading this and redeem myself. First, the boring stuff...I had a mastectomy eight months ago and have been on Tamoxifen for seven. I am twelve years post menopausal ( but only 53-chemo for another cancer gave me an early menopause.) I have had very few side effects to speak of-a few hot flushes lately and a bit of memory loss. But what I wasn't expecting was the INCREASED libido. For the past few weeks I have been like a mad thing. My husband works in London all week, which is probably just as well or he'd be dead from exhaustion by now! I know I should just enjoy this, but it's actually getting to be embarrassing. I think of little else and any mild flirtation gets turbo charged in my imagination: I really wish the heating engineer who has just replaced our radiators wasn't so cute...and as for one of our uni lecturers....who I'll go back to in a fortnight...sigh...will I hear a thing he says while gazing at his wrists ( anybody else get that one too?) Even listening Vivaldi turns me on! All my senses are heightened and I feel as if I've just fallen in love for the first time. It is distinctly weird and it would be comforting to know I'm not the only one who's had this effect and that I won't be locked up soon! Gosh..the things we admit to on here...tell me I'm not odd, someone, please! And feel free to howl !
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21-01-2013
05:18
Thankyou all-a really helpful mix of replies about Tamoxifen and studying etc. Makes such a difference to share things doesn't it?
I must admit Jane, I did think I'd be on Letrazole/Femra types and did say that to him-but I am now wondering if he's remembered I'm post menopausal. He may have just looked at my age and assumed. But surely he should check?!
I think I will check things out a bit more before I go ahead-I probably will take it-your advice is wise' Try it and see' but quality of life is SO important for me now. Having said that my aduly children just want me alive! Difficult balance to be achieved .
Thankyou all for yourk ind words
Lots of lovex
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17-01-2013
07:10
I had lymphoma in '99 , breast cancer in 2005 and have just had a mastectomy for another breast cancer. I had just embarked on ordination training to become a hospital chaplain-ironic eh?!
Have just been told today that I must take tamoxifen.
Expected to take this news in my stride but am feeling really angry. Looking at the side effects ( and I appreciate that might get lucky and not have any !!!!!) it seems that this move will mess up my studies ( confusion? Inability to concentrate?) and any normal life.
At the same time am feeling guilty -I'm alive, I'm lucky, I'm able to turn down chemo.
BUT this is the third time and I'm SO furious. I want my life back!
Roller coaster eh?
How much will Tamoxifen blow things for me? I'm post menopausal ( first lot of chemo did that for me at 39) and doing a very demanding post grad course with practical placements.
Here I was trying to do somethng useful with my life , and...
Yes, I know this will be useful! But been there, done that!
Gggrrrr!!!!!
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21-12-2012
03:20
You are all so lovely-thankyou. Yes, I suppose i am expecting a lot of myself. But I think I am just trying to keep going because I don't want this to interrupt my life again or to get behind and do badly as a result. I will try to stop until after Christmas and will put my books away. I am too sore to concentrate anyway. I am going back to the clinic on Monday to have the seroma drained so I can talk them and to BCC. The trouble is, they all know me so well they kind of expect me to know the ropes and cope!! I guess we never really know ourselves or what we really need , do we? Thankyou xxx
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21-12-2012
09:58
I am three and a half weeks post mastectomy. I did really well the first week or two, very little pain, but tired from the anaesthetic, but I am now really sore (no infection, have had a seroma drained once) but the worst thing is the tiredness. Too tired even to reach cross my bedside table to pick up my tea. SO want to feel better for Christmas and for my kids. Has anyone else experienced this? Am I being unrealistic? I have essays to do and revision for exams in January and want to keep going. People keep telling me to rest but it's driving me mad to look at everything that needs doing and it doesn't help anyway!! This is the tihrd time I've had cancer ( lymphoma first then BC in 2005 and now BC again and a mastectomy. I am beginning to feel bl***y fed up !! Sorrry-am voicing my frustration and diappointment! xx
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27-01-2007
11:32
Thankyou! Thankyou! I will certainly look out the Linseed Oil capsules-was having linseed on top of my seed rich Muesli before the phyto scare, so I can see sense in that. Somebody else recommended Co Enzyme Q10 for energy and antioxidants too-you might like to try that?
I have just asked my husband across the table 'I look 70 don't I?' and he said, tactfully, 'Well, you don't look well.' Bless.
I'm very grateful for your help.Lots of love.
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25-01-2007
03:22
Missing oestrogen? Inadvertently posted my query on the wrong 'page' so sharing it again.
I had long term treatment for Lymphoma in 1999/2000 resulting in an early menopause and an unrelated BC in May 2005, followed by lumpectomy and RT. Turned down hormone treatment as lower risk of BC recurrence and because I had heard so many horror stories.
Am finding, having been very well for 18 months , that I am suddenly noticing very dry lined skin ( do not go in the sun v much) running to loo, sleeping badly etc-all the signs of post menopausal ageing.
I was taking soya and lots of phyto-o's to help balance things, but as the jury is now out on whether they are safe for us or not have stopped. Now I suddenly feel 107 instead of the fit 'healthy' 47 I had recovered to become- and am beginning to look it too. Has anybody else experienced this? Are there any safe ways to make up for the necessary and drastic reduction of oestrogen? I want to live life to the full as the mid 40's energetic maniac I was-not at half pace. It's making me feel very low as I feel I've missed so much of the last few years due to the two cancers anyway. Am keen to 'go for it' while I can!
Any ideas?
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25-01-2007
03:13
To Jan Thanks Jan...helps to know I'm not alone but not sure of the solution. Decided not to have hormonal treatment as told 'off the record' that side effects may be worse than benfits-but last few months I have wondered!
P.S. Couldn't find this at first and then realised that this post should have appeared in the section above-'after treatment has finished' Sorry for taking up space girls! I'll try the same post there. Lots of love to all of you.
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22-01-2007
08:15
living without oestrogen Hi-it's some time since I've been here!
Had an early menopause following treatment for lymphoma in 2000, then had 'unrelated' breast cancer in 2005. Was taking plenty of soya and phyto-oestrogens to try to guard against osteoporosis and to cope with post menopausal symptoms/ ageing.
But as the jury is still out on the benefit/harm decison of phyto-oestrogens for BC 'patients' I have stopped them , but am finding that I seem to have all the symptoms of creeping old age-at 47! Going to the loo a lot, very dry skin, poor memory, hot flushed, bad sleeping,poor memory etc etc.
Has anybody else had this ? Are there any ways to deal with what seems very unfair after all we've been through? I want to live my saved twice life in top gear-not with a zimmer frame!
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28-06-2006
09:08
Thankyou..from Mrs Angry! Thankyou for your kindness and advice girls.
I have just finished a whole run of work and should be able to take things a bit slower-give myself time to think. Am seriously considering counselling, but don\'t want to get \'me\' obsessed.
Think it\'s the anger that\'s worse. I am angry at everything!!
My husband lightheartedly calls me Mrs Angry, but it\'s so uncharacteristic that it obviously bothers him...I say maybe it\'s best to get the anger out than keep it in?
Feel so guilty that I have friends who are still in the thick of it and here I am moaning.Yet there are still issues....I don\'t know. Even writing this makes me feel as if I am self pitying and pathetic. What\'s to do eh? Holiday in Barbados maybe ( I wish!)
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09-06-2006
07:45
Why a year on and well am I SO low? Diagnosed with BC April 05 , had treatment and am well with good prognosis.Last Mammogram few weeks ago clear.
But I am on an emotional roller coaster. Swing from fine to angry to very low.
Had lymphoma five years ago and long period of treatment-unconnected to the BC-so I should be used to all this.
Have dreadful survivors guilt having lost friends to BC-yet that should make me want to live life to the full.I do-but I get so frustrated when I can\'t get on with it.I feel as if I must be here for a purpose and work my socks off but feel as if I am hitting a brick wall.
I feel a fraud writing this because being alive should hardly be a problem!
Always seem to be in tears and wondering what it\'s all about. I hate self pity so it\'s all beginning to get to me and I am angry with myself.
Is there anybody else out there feeling like this?
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