Breast Cancer Now Forum

Hi Sascha,   I'm a relative newbie in the C department but, I've been labeled uncooperative and difficult since I listen to what my body and heart tell me and didn't always do what doctors said to.  I started Tamoxifen about 6 months before surgery and lasted about 6 months after then quit taking it.  I was told to stay on it for 10 years --- though would likely change to an Aromotase Inhibitor after menopause (I'm 45 now).  My oncologist ran the odds of recurrence and survivability for me but I don't even remember what my percentages were.  What trumps everything is how I feel now, today.  On the Tamox, my joint pain got so bad, I couldn't hold a coffee cup.  Off of it, I feel more like myself and the joint pain is barely noticeable.  My naturopath told me there are 2 paths --- pay now, or pay later.  If I pay now, I'm miserable in the prime of my life  AND there's no guarantee I still won't have a recurence.  Pay later, I can live my life now, embrace and enjoy it  and worry about any consequences down the road -- if and when they happen, for there's no guarantee that I will have recurrence just because I stopped the meds.  I chose to live today.  The key for me is to own my decision, be comfortable with it and not worry "what if".  Most of the time, I can do this.  Even when I start to wonder if my decision will cause cancer to come back, I realize it's still worth it to me to have today. I like that everyone here is free to share their decisions without the judgment that often comes from the medical community and from those "mean well" people who just don't understand.  My decision is right for me but I so admire and commend those who've stayed their course and endured more than a little discomfort because it was right for them. ... View more

Thanks for the info, ladies... so very helpful and encouraging.  My 2 cents... I was 1 year on Tamoxifen in early July.  The first few months I had almost no side effects.  Later, my periods became almost intolerable -- then gradually stabilized.  I may have had other SE but wasn't really paying attention then.  I was skin and bones, had lost job, legal battle, needle phobia, traumatic surgery experience - my Naturopath thinks this may be why I felt no SE at first... my body was so stressed it couldn't deal with anything else.    A couple months after surgery, I began paying more attention to how I felt.  Was very helpful to find this discussion board and read other women's experiences.  The joint pain was getting so bad and I couldn't figure out how at 45 I could have arthritis so bad.  Ding a ling -- it was likely the Tamoxifen.  I had been taking the Mylan brand late last year but after moving, the new pharmacy gave me Teva.  Recently, my current pharmacy told me they couldn't get Teva anymore and switched me to Mylan.  It makes me $%^&* angry that pharmacies (and drug companies) can switch brands on you and tell you they are the same.  When my SE change or get worse, they say I'm crazy because there is no difference in brand.  Rubbish!! (I agree that different brands affect different women differently so gave up thinking there was a "right" one for all)   I spent the last few months thinking about it and made the decision to quit Tamoxifen.  From what I've read, they say 2 years is the minimum time to take it with the most benefit so I really tried to weigh the choice.  I was told to take it for 10 years.  I've been off less than 2 weeks and I too feel a whole lot better already.  Quality of life is important --- I just didn't realize how this drug was affecting mine.  I had worries about the consequences but recently met with a "life coach" to help with some of the trauma (job, C, etc) and as I get back in touch w/myself I feel more confident in my choice.  At the moment, I'm still too traumatized to see any doctors (can't even get BP taken without panicking) so I read as much as I can and work with the life coach to learn to trust my own intuition and what is best for me.      I know quitting Tamoxifen isn't for everyone but it's comforting to know some of you came to the same conclusion and I'm not the 'crazy lady' who ignores doctors orders.      ... View more

My joint pain is getting worse... mainly my finger/hand joints.  Does anyone know if the pain subsides or goes away once off all meds?  I'm only taking Tamoxifen now but can't grasp a coffee cup (or much else) with my left hand which is my dominant.  It does get better if I can rest them but it's hardly feasible to not use my hands.    ... View more

Hello Lynne,   I have also been struggling with a loss of confidence.  I lost my job right before my first surgery was planned so things were delayed, then post-op I had to relocate due to no income and lost my support system.  Once I was mostly healed physically, I still had trouble facing getting a job.  I couldn't even get through a practice interview without breaking down emotionally.  But here's the good news... it does get better.  I was encouraged to consider worker retraining and just finished my first week of school!  My "school counselor" recommended a specific instructor for a business class who has really opened my eyes.  It's more like a life lessons class than a business class.  It's been a really good step for me to get back into the world and participate in life and people and has really helped with my confidence.  Can I also say thank you?  While I hope and expect you'll soon be back in the swing of your job with supportive co-workers, your post made me feel a little less alone in my own confidence challenges. Best wishes to you, kb ... View more

Hi Vonka, I'm 45 and just started summer school classes Monday.  Will you be getting reconstruction?  That was in my plans though things have gone a bit off-track.  Even though I'm sort of on hold with it, I always knew I'd never feel normal until I was "put back together" so to speak.  I know it's another ordeal but in the long run it can make you feel so much better about yourself.  And there are lots of options available.      ... View more

I had to go through a legal mediation 2 months after surgery and the mediator was a retired judge who also happened to have had breast cancer.  When I explained about my surgery and the expected recovery (given by my surgeon) her eyes popped open and she said, "Really?  I was only off work for two days."  Boy, did I feel like a complete loser.  It didn't occur to me that perhaps she had a simple lumpectomy with no reconstruction, chemo, etc.  Maybe she was just naturally blessed with super-woman qualities.  No, all I felt was judgment: how I'd made a muck of my life, was a complete failure and weakling for not getting up and over the whole business.  Even someone who's supposedly been in our shoes really hasn't... they've only been in theirs.  Our experiences may be similar but they are not the same.  I so appreciate finding this forum and all of you who share because even though it seems like everyone has cancer these days... we all have different ways of dealing.   Also, I used to see an Acupuncturist who did acupressure for my anxiety and after surgery helped with recovering range of motion, etc.  Anyhoo, he told me it could take a year or more to recover from the physical trauma to the body including the surgery itself.  Yes, we may heal in a few months but internally there is still a lot going on even if we don't necessarily feel it.  And the emotional/psychological healing, it all takes time.  Sleeping 10-12 hours a day would not be abnormal and he urged me to listen to and honor my body.  I should mention he had testicular cancer some years ago so can relate to some extent.  I've always been a terrible sleeper but definitely feel like I need more sleep sometimes.  My problem is I can't turn my brain off... ... View more

Here here, Feistyflora...   I agree 100% on the humor and thank you all for the funnies.  ... View more

Hey Feisty,   So sorry about the insensitive friend.  Can't imagine what she was thinking.  But to join this rant... I hate pink (always have), and I am also feeling overwhelmed by unwanted reminders everywhere.  Internet ads, magazines promoting the next best treatment center for cancer, television -- it's everywhere.  I know it helps to raise money but I have mixed feelings about this too... I read long ago (pre-BC for me) that many cancer organizations have more money than they can spend on research so it is invested.  I guess that's why I got this stupid envelope filled with "support group fliers" and a handkerchief with a pink ribbon embroidered with note saying some crap about crying.  Really?  Really?  Just made me feel like punching the idiot who decided on that campaign.  How about spending money on things that make a difference?  How about providing rides to treatments, how about reimbursement for costs not covered by insurance?  How about paying for complimentary care like nutrition classes, massage, counseling, reiki or yoga, acupuncture --- there are so many options and I get a hanky????    As for friends... I have learned to be very selfish about who is allowed in my "inner circle" and it sounds like you're learning the same.  Focus and treasure the real supporters and distance yourself from the emotional drainers. ... View more

I dropped more than 20 pounds between diagnosis and surgery which was almost a year - having done a naturopathic regimen to begin with, then work issues, etc.  I've been on Tamoxifen for almost a year now and gained same 20 (ok, 23) lbs but I was quite thin from the stress of everything so I'm back to a good/healthy weight.  Last year I did Dr. approved fasting (5-7days), cut out nearly all sugar (everything white) and lost my taste for meat so was eating mostly veges.  After surgery I needed to gain weight so the 'diet' went out the window for awhile but I'm back to a more moderate version --- keep sugar to a minimum -- but not sweating a splurge now and then. I'm not big on carbs so I don't mind giving up pasta, rice, potatoes, etc.  Lots of cruciferous veges (broccoli, kale, brussel sprouts, spinach) and meat in moderation.  Dark chocolate and red wine have anti-cancer properties too so it's not all bad!  There is a great, easy read book called "Food to Fight Cancer" by Richard Beliveau, Ph.D and Dr. Denis Gingras, Ph.D.  Also, "Healing Spices" by Bharat B. Aggarwal, Ph.D.  Ultimately, for me, the most important thing I do with respect to diet is eat real food -- it's the chemicals in the processed stuff that can really wonk up your system right down to cells and DNA.  Of course I'm not perfect --  but I always think about the consequences of my choice which helps me limit the bad and keep up with the good.   btw... I'm all in for a gin and tonic occassionally (and I know the tonic has gobs of sugar!!)  Be happy with your choices whatever they are.  ... View more