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need to share experience/feelings - would welcome advice

16 REPLIES 16
KathyF
Member

Re: need to share experience/feelings - would welcome advice

Golly, Birgit, your experience mirrors mine very closely. 6 years from end of treatment to recurrence, only 2 years of Tamoxifen because of eye problems, recurrence more aggressive than primary. It just shows that we can't predict or control what will happen, but just do the best we can and pick ourselves up again when sh*t happens. Hope your surgery has gone or will go well, Deni.

Kathy

Birgit
Member

Re: need to share experience/feelings - would welcome advice

Hi there. I too am in the 'recurrence' club. I was NED from 1999 until 2005 and had just been discharged from the breast care clinic when I found a new lump on the reconstructed boob. Turned out to be far more agresive then first time round with wide spread. Obviously I asked my surgeon whether anything I did or not did would have influenced the outcome. He categorically stated that it would not have made any difference and basically they just don't know! At least that was honest. I only took Tamoxifen for 2 years and was taken off because of serious eye problems, but nobody would or could say whether this made any difference . As I did not have total auxillary clearance first time round, some cells may well have 'hidden' away in other nodes and not been visible. I think as long as we all try and live a reasonable healthy lifestyle - drinking in moderation and eating not too many fatty foods, we should be ok. Just sensible advice irresepctive whether you've had CA or not. I personally never took to any of the alternative diets or looked to seek out other treatments etc., just put my trust in my local hospital and the very good oncologists working here.

Very best of luck Deni, and hope your surgery goes ok, have you got a date yet? And remember, we are all here to support you.

Birgit

billybob
Member

Re: need to share experience/feelings - would welcome advice

Hi

I am have an appointment on Tuesday and I have found another lump, nearly two years since my first diagnosis...it gives me great strength to read your posts, to see how positive you all are. thanks. As for Kaon Keating, I got her book just before I was daignosed and I only picked it up and starting reading it a couple of weeks ago...it is a very good book, some of the feelings and anxieties she experienced are common to us all but I really connected with some aspects of it. Especially Gloria describing how she dealt with and experienced it from a mother's perspective...give me a deeped insight into how my mam would have felt although I do know as we were very open with each other. Unfortunatley my mam had to watch her sister go through this the year before me so you can imagine the shock she felt when I was diagnosed.

We will come though this, we just need to keep fighting and hope that research progresses.

Lots of love to you all

Claire x

ForumMember
Member

Re: need to share experience/feelings - would welcome advice

Gosh, I keep reading about Caronn Keating but have not read the book. How very sad, can only echo everything you say Jane. We all have more than enough to deal with if we have breast cancer without piling on the guilt, feeling we (or anyone else) is to blame, or that we are being punished, or any of the other terrible things that people sometimes getting into their heads. It's a disease. It happens. We don't know why some people get it and some don't (apart from the genetic link). We didn't bring it on ourselves. There is lots of good, well researched treatment available, there are lots of charlatans out there as well. Most of us will come through this, sadly for some they will have to live with active disease for the rest of their life. We need more facts, more research, more honesty! And we need each other! Sarah

JaneRA
Member

Re: need to share experience/feelings - would welcome advice

Caron Keating refused tamoxifen after a lumpectomy and radiotherapy for a small (and I think not very aggressive) lump. A couple of years later she got a recurrence...grade 3, several lumps. She did then have chemotherapy. Subsequnetly got mets.

She also chased round the world looking for alternative treatments and saw a number of dodgy therapists. She kept her cancer secret and became convinced that she was to blame for getting cancer (blamed her mother, her partner, her diet etc, other relationships.)

I find her story tragic...not just because she died but because of her self blaming and self delusional approach to living with cancer.

Who knows if her cancer would have returned if she had taken tamoxifen...probably yes...with aggressive cancers treatments often/usually fail in time. So very sad that someone became so obsessed with self curing and self blame. She didn't ignore conventional treatments but I can't believe her search for alternatives made her happy...but them we are all different.

Jane

lizziecee
Member

Re: need to share experience/feelings - would welcome advice

I thought the reason Caron Keating didn't survive was because she refused chemo - is this correct? I've never read anywhere that diet,alternative/complementary treatment or exercise can keep cancer in remission, or indeed, cure it. I do wonder why she refused chemo. Would love to be enlightened.
Liz.

horace
Member

Re: need to share experience/feelings - would welcome advice

I recently read Gloria Hunnifords book about her daughter.Caron Keating.Caron tried every diet,alternative remedy and exercise regime after her dx and none of it made any difference at all.Admittedly that was post dx but I think the only thing that predisposes us to breast cancer is having breasts!Dont ever blame yourself honey.xx

KathyF
Member

Re: need to share experience/feelings - would welcome advice

Hi Deni,

No, didn't have chemo the second time either, as the tumour was very highly hormone-dependent (ER 8/8 and PR 5/8) and also didn't have a reconstruction. My super breast surgeon doesn't do them and I really haven't wanted to have more surgery afterwards. As far as Arimidex is concerned, I've found it much better than tamoxifen. Some hot flushes to start with, but these are pretty rare and mild nowadays. I've also escaped the bad stiffness and joint pain some people experience, though I can stiffen up a bit if I stay in one position for too long, but it wears off very quickly. My main side-effects have been impaired memory and concentration (lack of oestrogen) and also tiredness, but I've learned to live with these (more easily now that I've retired).

Don't worry about askling questions - always glad to help.

Good luck
Kathy xxx

deni1960
Member

Re: need to share experience/feelings - would welcome advice

Hi Kathy, thanks for your response. Did you have chemo after your second op and how's the arimidex treating you and did you have a reconstruction? Questions questions, questions!!! I really convinced myself I was cured and it would never come back... hey ho, like you say it's a sneaky and unpredictable disease. I'll hopefully get a date early next week - Monday or Tuesday, just want this bit over and done with.

Deni xxx

KathyF
Member

Re: need to share experience/feelings - would welcome advice

Hi Deni,

So sorry to hear about your new diagnosis and wanted to say how familiar your reactions felt to me. I had a small, Grade 1 tumour in late 1998 and after WLE, ANC and rads was put on tamoxifen and given an excellent prognosis. Over 7 years later, in summer 2005 I found a new lump (Grade 2 this time) under my ANC scar and like you chose to have a mastectomy because I really wanted rid of a breast I felt I couldn't trust any longer. I too had to have all the scans before surgery because it was a recurrence, but thankfully they were clear and I'm now on Arimidex. It's so easy to torment yourself by thinking of all the things you could have done differently or better (lose weight, exercise more, don't drink, etc, but it's totally unproductive and just made me feel worse. Since my second op I've tried to eat more healthily and I'm at present trying to shed some of my excess weight, but realise that even if I do all the recommended things, there are still no guarantees with this sneaky and unpredictable disease.

Hope you get your surgery date soon

Kathy xxx

deni1960
Member

Re: need to share experience/feelings - would welcome advice

Having not used this forum before to respond to your comments, I hope I've done this right!

Thank you so much for you encouraging comments - Anne, Amy, Vermont, Irene and Lucy, you have made me feel better by sharing your similar experiences (and good advice) with me - it's just comforting to know there are other people out there who really understand how I'm feeling right now, makes me feel less alone. I've spent the weekend telling friends close to me - playing it down by honing in on the fact that it's so small, how lucky I am they found it, etc.... at one point I thought what am I doing worrying about how they will cope with my breast cancer! Amy, good luck for this Friday, I will now be thinking of you - your advice re the work thing was great and yes, like you, I think I've earned my stripes - if not with my new line manager then at least with the board who decided on my secondment.

Right now I'm feeling more accepting of what's happened and you are all right - we can only make so many life changes without feeling like every day is a day of sacrifice - so I had a couple of glasses of wine last night! I'm also feeling impatient, waiting for a date to go in for surgery - I'm concerned that if it is as aggressive as the first one then by the time they get round to it - could be after easter - it could have become a bigger risk. Now I know it's there, I just want it out - I am sure you know what I mean.

Once again, thank you all for responding to my plea for help!

Deni xxx

amdamc
Member

Re: need to share experience/feelings - would welcome advice

Hiya Deni

Your story sounds very familiar - I was first diagnosed at age 38 in 1996 then again 11 years later (to the date, unbelievable!), My first one was Stage 1, my second it turns out to be another primary, Stage 3. Please don't blame yourself, I know I had 11 brilliant years after my first dx, not worrying about what I was drinking, eating etc and am so glad I didn't waste time worrying (not tooo much) about stuff, but enjoying the time I had. I am now at the stage of having finished chemo, all my scans have been clear and I'm getting on with my life again, determined not to let this bloody disease take over any more of me than it has to.

You did this once and you will do it again, medicine has moved on so much, even in the last 5 years, just take each day as it comes and treat yourself when you have the opportunity.

Cheers
Anne x

Amy30
Member

Re: need to share experience/feelings - would welcome advice

Hi Deni

I'm going through similar although it sounds like your original diagnosis was more aggresive than mine. I'm 32, career girl, always put that first, not particularly unhealthy but like a glass of wine, don't exercise much and don't always get my 5 a day. I've also found the reoccurrence difficult - could I have done things differently? Should I just have had a mastectomy the first time round and possibly avoided this? Got to have a bone scan Tues, liver scan Weds then being whisked into surgery for mastectomy & immediate recon on Friday - too fast for me to think about it too much which I'm grateful for.

With regards to work, I too had just changed jobs internally. I've been overwhelmed with positive messages from the office but you can't help worrying stupid as it seems. I keep reminding myself that I got the new role because I had already established my credibility and was doing well - I'm sure you are the same. If you've earned your stripes they will be patient I'm sure. I knew my company sick policy wouldn't cover much but I'd also heard of people being treated well when serious illnesses and injuries occurred so I asked directly regarding what cover I could expect. I said 'I expect you need time to reflect on this so I don't need an answer right now, but I need to be able to plan my finances whilst I'm sick so I'd like to understand what financial support the company can provide'. I think this was a good tactic as they called me back the next day to say that I could have up to 3 months off paid (much better than policy) and then they would review the circumstances if I needed more time off. I know from some unfortunate circumstances that happened last year that if someone has a terminal illness whilst they stopped paying sick pay, they kept that employee on the books unpaid so that the life assurance would pay out. (I know we don't want to think about these things but it's one less worry if you know that). Also remember cancers are covered under disability discrimination laws.

Earlier in the week I felt so out of control and just couldn't stop crying but as I'm getting clearer about plans and getting answers to questions I can feel my strength building. I hope you find the same. Good luck with everything & big hugs.
Amy xxx

Jackson2
Member

Re: need to share experience/feelings - would welcome advice

Hi Deni

You are not to blame!!!!! I think the media has a lot to answer for in making us feel guilty with the constant articles telling us what we should or shouldn't have. The opinions change every week. I too have gone through the 'wondering if' stage - regarding the diary/juicing/exercise etc etc. Five years ago we were all being told soya was the best thing possible for those of us with breast cancer - now we're being told it could be one of the worst things.

I recently read some old threads on the secondary cancer posts about diary versus soya. So many different women posted, each one of whom had cut things out of their diet/lifestyle or had added things in. The final outcome was that it hadn't made any difference. Cancer doesn't care who it picks.

I know it's really horrible when everything feels up in the air. When it gets like that for me I stop myself thinking about the future and only think about the day I'm in. In a few days time you may feel a lot better and be able to think more clearly.

Best wishes to you meanwhile.

irenebo
Member

Re: need to share experience/feelings - would welcome advice

Dear Deni

Please don't blame yourself and no, you haven't failed. It's not as if there is an A-level in breast cancer that we either pass or fail, is it?

This must be a really hard time for you, particularly as you've taken on a new secondment in your work and no wonder you're thinking about that also.

I'm sure that every woman who reads your post will be rooting for you.

Best wishes from Irene

ForumMember
Member

Re: need to share experience/feelings - would welcome advice

Dear deni1960

Welcome to the forums, I am sure you will receive lots of support and advice from your fellow users very soon. There are a couple of Breast Cancer Care's support services that might be of interest to you. The first is Breast Cancer Care's telephone support group. It's a chance to get together once a week to talk with people who've been there. Linked together by phone in comfortable surroundings, you can express your feelings and discuss the practical and emotional impact of living with breast cancer. The groups will be particularly useful for you if you feel isolated. The groups are completely free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK.

There is also Breast Cancer Care's peer support service. The telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding. For more information about these and our other support services available to you please telephone our helpline on 0808 800 6000 (Mon-Fri 9am-5pm and Sat 9am-2pm) or email:

info@breastcancercare.org.uk

Best wishes
Lucy

deni1960
Member

need to share experience/feelings - would welcome advice

I'm new to this website and reading the comments have left me in tears - it's the first I've really cried since receiving results last thursday, been feeling numb! So many brave people out there making me feel very humble - words of encouragement and words of sadness/acceptance. I was originally diagnosed in 2001 at age 41. The tumor was aggressive and had spread to 5 of my nodes and one in my mammary chain - the prognosis at that time wasn't that good. I had aggressive treatment - 4 ops (latter two ops were cosmetic - my breast looked like a walnut whip!) chemo (TACT trial - 8 sessions of FEC/CMF) rads, zoladex and finally tamoxifen after treatment finished. 6 years on you kind of feel you're on the right side of the statistics and you're on the last leg to that 10 years 'cured' stage! Over the years, I've managed to lose some of the weight but not all and have learnt to accept my changed body shape and everything else that accompanies the premature menopause.

My last mammogram showed something new and a needle excision biopsy was taken, results indicate cancer. Strangely, I feel I've failed and wonder whether I could have done things differently which would have helped avoid recurrence - perhaps I should have drank less wine, eaten less dairy, exercised more and worked less or even continued 'juicing' - silly I know. I also feel disappointed, angry and sad. On the bright side.. it's only small - approx 3mm and I should be thanking my lucky stars that the mammagram detected it so early and I really do appreciate, having read the comments, that there are so many wonderfully brave ladies out there who are dealing with a lot worse than me. I've decided to have a mastectomy and immediate reconstruction and am awaiting date. Consultant says it was too small to do a core biopsy so don't know the grade - I didn't think of asking if they knew if it was likely to be a new primary or part of the original cancer.... not sure which would be the most favourable - perhaps someone out there knows?? He also said, wasn't sure if I'd need more chemo. I do know the original cancer was HER2 positive but don't know if it necessarily means this one will be... he did mention Herceptin and that it would be wise to have all the scans again and now every little ache/pain/twinge is exascerbated as I feel it may have spread everywhere! You know what its like, the abnormal becomes normal and you lose sight of how things should be/feel.

I guess I could be termed as a career woman and am concerned about taking time off work having just started a new secondment - I know this should be the last thing on my mind but work is a big part of my life - workaholic, no kids. I have a mortage to pay and no critical illness or life insurance and rely on my pension policy at work that pays out a death in service sum which would help my partner should the worst happen ..... I feel so much is up in the air and would really welcome comments/words of encouragement from anyone who has been/is going through similar.