refused all treatment after surgery

Hi Crying. So sorry you are feeling this way but you are not alone in your fear. We all are afraid of the side effects of the drugs but they are really just a short term thing for a long term gain. There are many things that can be given to ease the side effects and many supplements that can help as well.



These boards are full of women who have, with the help of others here managed to get through treatment. Please don't allow the fear to prevent you from doing what is necessary to give yourself the best chance of a long and fruitful life.



Love n hugs. Chrissy

Crying, I think we need a bit more info before we can really help you.

I note that you had a masectomy in 2008, what stage Breast cancer was that classified at, what grade and did you have any chemo or hormone treatment at that time?

According to your byline youve now been dx with Pagets cancer of the breast @ 6cm+ & stage 0? I dont know a great deal about Pagets but stage 0 doesn't sound right to me as that would put it in the class of dcis which is preinvasive. If there is any component of invasive cancer it immediately makes the stage 1 or higher. Grade 3 in any stage is concerning as Im sure you are aware. The fact that its occurred several years after a masectomy surprises me, but then as Ive already said i dont know a great deal about pagets or for that matter, recontructions and the possiblity of recurrances in reconstructed breasts.

What I do know is that at the age of 42 I was dx with dcis, path showed idc and thus chemo and hormonals were needed and im 3 years thus far on Arimidix and living a healthy happy life. Chemo wasnt fun, but it was doable and I have no ongoing health issues from doing it.

There are women who have refused treatment, some have continued living their lives with no further worries, some have lived to regret their choice with progression at a later date and yes some have died too early because of it. Sadly the same can be said for those who have done all the recommended treatments. Breast cancer is a mongrel and while we can take every option out there to keep it at bay, in some it recurs and in others it doesnt and we dont know, other than from the stats available as to what our chances are and most of us put our faith in our surgeons and oncologists recommendations on the standard of care for each of our own particular circumstances. 

I think the best thing any of us can do is way up the factors for and against treatment and make a decision each of us can live with. The points I raised above and also your current age and general state of health and support system are what I would take into account in making a decision if I was you. You may have other factors to include in your decision making process as well.

The one thing I would not recommend is making a knee jerk reaction in refusing treatment due purely to a fear of chemo, radiation, surgery etc. No one can force you into treatment. But take a week or two, get all the facts, ask questions here as to what you should be asking your surgeon and oncologist from women who have had your diagnosis and then make an educated decision that is right for you. You may still elect not to have treatment, but at least then it will be an educated decision based on solid facts and hopefully some good sound advice from women who have been where you are and have come out the other side.

http://www.lifemath.net/cancer/breastcancer/therapy/index.php is a site where you can input details of your dx and calculate the effect on your life expectancy with and without treatment and might help you make a decision, based not on fear but on facts through statistics.

At the very least I hope we here at BCO can help you thru the coming days as you make your decisions. Good luck and please ask us any questions you need to so you are at peace with whatever decision you make.

I agree with the others who have urged you not to deny yourself treatment because of a fear of the side effects.  You really don't know how you will react to the treatment and I think for the vast majority of people the treatment was not as bad as we expected it would be.  None of it is fun and not one of us wanted to do chemo, radiation, etc. but you are young and strong and will get through it.  I remember after my first chemo treatment thinking, "how can I POSSIBLY do this 7 more times?!".  But I did and now it's over, hopefully for good.

If you do end up having a bad reaction to any of the treatment you could always stop but you should do everything you can to fight this disease.

I remember when I first came to these boards, it felt like those who had finished treatment were just stronger than I was and must not have been as scared as I was.  Trust me when I tell you that all of us felt the same way you did when we were in your shoes.  I decided that all I needed to do was show up - didn't need to think of myself as strong or as a  'fighter'.  I just needed to put on my shoes, walk out the door and show up.

I wish you the best of luck.

Rose

Hello Crying

I'm the biggest wuss around. Was terrified of the thought of chemo therapy and any side-effects.

However, I have to say that having an upper left molar out recently was much worse than any breast cancer treatment!

The treatment is very good today - meds in the drip to stop any allergic reactions or sickness - and the outcomes are getting better all the time.

Have a look at Predict.co.uk, which takes into account the effect of treatments such as chemo and Herceptin.

I did have a few side-effects but they were manageable and I'm out the other side. Just on an antibody infusion called Herceptin now.

Do your research, have a chat with the docs and make your decision.

If this wuss can do it, so can you!

Best wishes

Alice

Crying  

  I was diagnosed her2 positive aswell at 42 (young by BC standards).  This is not your typical BC.  Her2 is more aggressive then her2- tumors, they grow more quickly and have the potiental to spread more easily. Do not let this scare you, the good news is that the prognosis for her 2 positive cancer has improved dramatically with Herceptin.  This is why your onc is recommending Herceptin and chemo.  Studies have shown that herceptin works best when combined with chemo.  Chemo is certainly not easy but most ladies here will tell you that you get through it, and when its done it does become a distant memory.  Sounds like your cancer was caught early which is great.  Speak to your doctors, they will be able to give you more information on side effects, risk vs benefit of treatment etc on your particular case with your stats.

please join us on the triple positive thread -Her2 forum - there are lots of ladies of all ages who have gone through or are currently in treatment.  Its a great place to ask questions from people who've "been there"

You asked for opinions, and while the choice is entirely yours, I feel compelled to point out that the most important possible "side effect" of treatment is increasing your odds for survival.

When I was diagnosed, I wanted to know that I'd thrown the book at this disease with no regrets, and no "what ifs". The fortunate thing is that there are treatments to help women who are ER+ and HER2+. If you're feeling swallowed up by statistics and odds, and all the negative side effects, consider that you could easily be one who sails through treatment. You could be one who simply moves on with her life and never looks back. Don't let your mind automatically assume the worst.

I experienced just about every side effect in the book. Was it tough? Sure, sometimes it was. Was I miserable 100% of the time? Absolutely not! The treatment and the fight were central to my life for a while but I feel that in many ways I'm better for the experience.

One of my favorite sayings is, "You never know how strong you are until being strong is the only choice you have." I kept that posted where I would stare at it every day.