Forum Discussion

Sam09's avatar
Sam09
Member
9 years ago

Taking control of your diagnosis

Recently I was diagnosed with BC along with all the other lovely women on this forum and I guess felt the same shock and horror as every one else too!  Four months on and following a lumpectomy which was not at all a bad experience I feel great, after a recent pet scan revealed no cancer in the lymph nodes ( as I had opted not to have a sentinel biopsy due to not wanting the chance of lymphedema) I felt great relief.  I know that taking charge of my own body as I don't have much faith in the medical fraternity as many people die from the treatments in which they believe will help them, has been overpowering to me. Although I felt the same sadness after my surgery and felt despair, I now feel happy and content with my decision. I hope many people that read my post will before jumping into maybe in some cases unnecessary toxic treatments sit back and take charge and research and research and do more research until they are sure that the treatment they are being offered is absolutely going to be the best treatment for their body and not just the "Standard of Care" treatment that is generic to cancer Slash Poison Burn every one.

I am astounded at the treatment of early bc as this standard care and when my early bc was removed by lumpectomy and my wonderful surgeon informed me I had a clear margin I made the best decision I believed right for me and declined the chemo radium and herceptin  and the surgery completed my treatment. I will do my own tests every 3 months, I have a wonderful GP who supports me as her mother died from the chemo and she will keep on top of these tests and support me. I am in the same boat as people who choose to do other treatments that  I don't believe in now and hope and will keep on my vegetarian organic diet with loads of daily exercise. I am slim and healthy and cancer free right now and hope it will stay this way......  No one has the right to give their opinions if you choose to defy the Standard of Care  but the scariest thing to me is overtreatment and the terrifying side effects of these treatments and drugs they hand out. Most people don't even research what these treatments can actually do to you they just take them. 

I have made many friends at my oncologist appointments in the past few months and seen them go from healthy looking people like my self with hormonal cancer and most early cancer to pale sick hairless women who can hardly walk. How does this fight a disease in the body when the immune system is the very thing we all need to fight it....  I have learnt from my experience we appear not to know anymore about cancer than we did years ago and put everyone in the same boat. How sad!!!! I do hope other women like myself do the research and look at the stats is it worth it.... 

chemotherapy
lumpectomy
  • RNSW's avatar
    RNSW
    Member
    9 years ago
    Hi, we all make the decision we think is best for us. I did do all treatments but mine did spread to nearby lymph nodes.  What sort of testing is your gp doing every three months? I have started taking tumeric tablets and thats something you may be interested in. I wish you all the best xo
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Absolutely so very individual and so very personal, and everyone has the right to choose, no rights or wrongs. Having personally been on this journey for 5yrs now, I am thankful for the honesty of my Oncologist. I chose treatment 2011, lumpectomy and radiation and tamoxifen, all that was aggressive treatment for DCIS so my Surgeon says. Inspite of it all it came back 2015, yeah I was angry...but I hate to think how much worse it could have been, in fact I do know how much worse. If it werent for the vigilance of my Surgeon in 2011 I would have slipped through the cracks with all the tests, scans and biopsy they couldnt even hit the spot! Nothing is definitive without a lumectomy and pathology. I didnt want to do Chemo at all, I dont think anyone does. Did an abundance of research, even argued with the Oncologist LOL. I use alternative therapies in conjunction and Im even a Reiki Practitioner, BUT none of these things for me personally took away my need for Medical assistance. Whether you do treatment or don't, its a gamble either way, no guarantees in anything. So trust your gut, do what is right for you at the end of the day. Everyones diagnosis is different and so are their choices. 
  • SpeckG's avatar
    SpeckG
    Member
    9 years ago
    Thank you all for your thoughts, I am off to the Oncologist today with an improvement of 2% at five years and %4 at ten years if I go with Chemo. Already on the hormone suppressant and finding it OK. I am afraid of what I have read about Docetaxel! In any case I am thinking of saying no...

  • InkPetal's avatar
    InkPetal
    Member
    9 years ago
    So true. The last thing any of us need is to feel judged for our choices or to feel pressured into anything. :heart:
  • Afraser's avatar
    Afraser
    Member
    9 years ago
    I wish you well and support your right to get the treatment you think is best for you, but as this forum says so often, no-one is exactly the same. Many people do research the treatment recommended, and weigh the pluses and minuses. Depending on the nature of the cancer, how aggressive it is, and what other factors may have to be taken into account, optimal treatment will vary. Some people also react less badly to some treatments than others. 

    I was well enough on chemo and Herceptin to work full time, and looked perfectly healthy. 4 years on I feel healthy and well, have just returned from a 2nd overseas trip and walked miles each day. 

    So yes, let's all take control but accept that different people and different treatments are part of the story.
  • HIT's avatar
    HIT
    Member
    9 years ago
    Hi Sam
    Yes doesn't the treatment suck.  I can understand the docs point of views but being involved with many people with disabilities, I know there are a lot of people on disability pensions as a direct result of side effects of chemo and some other drugs.  I did try to reduce treatment but when they say - if you don't you will probably die - it is a big incentive to have it!!!  But some ladies do have a choice, and they are saying should I or not, chemo will reduce the risk by whatever, (and some are very small percentages) I feel like writing and saying no no no don't do it.  But on the other hand some people get over treatment very well.  Oh well.  Wish you all the best too Pam
  • Mira's avatar
    Mira
    Member
    9 years ago
    Hi Sam,

    I am kinda agreeing with you about the amount of treatment they throw at it.  I was diagnosed in march last year and had a lumpectomy, radiation, and am now on tamoxifen.  I was lucky that it hadn't spread.  My last 3 oncology appointments have basically consisted of me waiting, then going in and the registrar asks "do you have any problems".  I say "no", she goes to get the oncologist.  Then the  oncologist comes in and says "do you have any problems" and I say "no" (and we all sit around awkwardly), and they say "see you next year".  In total I am in there less than 5 mins (including the wait time while she gets the oncologist).  It seems like such a waste of everyones time, and it doesn't give me any faith in the oncologist at all.  They haven't done ANY tests since the operation other than the mammogram and ultrasound.

    At least the breast gp & radiation oncologist take a look at me!
  • socoda's avatar
    socoda
    Member
    9 years ago
    Hi Sam,
    Congratulations on doing your research and making an informed decision that you feel happy with. I reckon that it's one of the best things that anyone can do - having a say in their treatment or non-treatment. Certainly gives a slight feeling of control on an otherwise oit of control sitiation Wishing you all the best Xx Cath