Choosing not to do hormone therapy

Linda.

I hear you!  It was a ton of money for me too, out of my pocket.  And after it was done I have something on my lung which they called "ground glass" from the radiation??  I am not going to say that rads is not a good idea, maybe it is.  I had to go in twice for the lumpectomy , because I didn't get clean margins.  I felt in a fog as well thru this stuff, and really rushed thru it all.  Don't beat yourself up.  What's done is done and we need to move forward from here.  Get the spot checked out that you have concern over.  My plans from now on is to go things much slower, and explore all my options.  I am not so quick to go get scans and xrays anymore.  For one thing, the expense, and I also do not want to subject myself to so much radiation, and it is a proven fact that radiation can cause cancer all on its own.  So, while it may take longer to figure out what's going on with me, I make any additional radiation my last step.  As always, I don't knock or judge what anyone else does.  It is such a personal journey.  We can only support each other thru it and take away what we will.  Let me know how that spot turns out OK?

g

Louise,

I just found this thread, and may I say, thank you!!!

I know what you mean about feeling some women got 'cross' with you for making this decision.  I too broached the subject of not feeling like rads and hormone suppression therapy was right for me, and felt like I was supported by many to do what I felt was right for me, but also had a lot of comments about at least giving these things a try and stopping if the se's were too bad, or throwing everything at it or having regrets, or not questioning what the medical professionals are saying as they are the experts, etc... 

I know that this is an individual choice for every woman, and I know that asking the question means being willing to accept all the feedback, which I did gladly as I respect everyone's  personal journey.   I know that those who weren't cheering me on to my intended choice were only showing their concern for me considering the number of women who don't survive bc, and for that I am truly grateful.

I too have decided to approach this more naturally with good healthy foods and excercise. I just finished chemo three weeks ago and have started the process of eating more healthfully etc.  I'm still working on being more active...energy level is still low...but it's also a new habit I need to get into. I'm taking pharmaceutical grade supplements found at womenforwomen. One of the Drs who founded the site, Dr. Dixie Mills, is also associated with Dr. Susan Love.  She's all about balancing hormones and promoting the Schwartbein way of life as part of that process.

Have you read Dr. Shwartzbein's books?  She's an endocrinologist who really advocates healthy eating, moderate exercise, quality sleep, relaxation, eliminating/dramatically decreasing toxic chemicals like alchohol, caffiene, sugar, processed foods,OTC's, ect.... Hormone balance, all hormones not just the female hormones, is the key to health she states.

Again, thanks for this thread. 

Take care,

SIS Kimberly 

I chose not to use hormone therapy (tamoxifen which is an estrogen receptor mixed antagonist/agonist or any of the aromatase inhibitors which block estrogen synthesis occurring via aromatization). I did try tamoxifen for a short time, but I handle fluctuating hormones very poorly - headaches, nausea, mood swings. I gave it up quickly, never looked back and decided to listen to my intuition. However, some women have a high tolerance for hormones in many varieties and may tolerate tamoxifen or arimidex (and other RXs). What I think is important is to BELIEVE in your decision and move forward and allow others to be happy with their TX choices. Believing in your treatment is a major part of the healing - (statistically not just metaphorically). By the way I am a molecular biologist and did study my options thoroughly before feeling positive about the decision not to use hormone treatments for breast cancer treatment (referring to estrogen antagonists/aromatase inhibitors and not HRT).

Native,

I can't make the distinction between evidence and emotion because after all these years looking at the so-called evidence, there is not much there for taking hormone blocking therapy. It's a simple as that.

Women taking hormone blockers get more diseases (heart, bone, colon cancer) and may die sooner. We forget more women die of osteoporosis than breast cancer.

So I don't see it as an evidence vs. feelings choice.

Anom

I am er- & pr- which means that I CANNOT take the drugs, but I don't think I would take them anyway.  My cancer is DCIS <.02 cm, clean margins, but Grade 3.  I don't even want to do the radiation, but dr. feels since I'm so young (54), er & pr-, that I really should do the full breast radiation.  I have to make a decision soon - although I am looking into partial 3D conformal or the Canadian 4 week radiation - but it's still putting toxins into my system (yuck).  Does anyone know what makes some people ER-& PR-?

I made 2 emotionally based treatment choices:  to refuse chemo, and to change from tamoxifen to lupron and arimidex.  I refused chemo because the studies all say, in small print near the end, that the benefit of chemo for early stage bc is uncertain.  I, personally, felt that the side effects were not worth reducing the chances of recurrence from 7% to 3-4%.  After watching my Dad go through chemo for stomach cancer (which I am at high risk for myself) I promised myself I would NEVER allow myself to be put through that torture. 

After lumpectomy and rads (if rads is a "piece of cake" compared to chemo, chemo would have killed me, but that's a horror story for another time), and finding an onc whose office wouldn't keep 'losing' my records, I started taking tamoxifen.  I also take Prozac, which inhibits the enzyme pathway that changes tamoxifen to the active form.  I had NO side effects.  NONE.  I kept reading studies showing that women who don't have hot flashes with tamoxifen have a higher recurrence rate.  Both my surgeon and my onc told me that not having side effects from tamoxifen is common, and not to worry.  I worried anyway, to the point of having panic attacks, nightmares, and being convinced that no one would pick up a recurrence because everyone thought I was protected when I wasn't.  At my last appointment with the onc, I brought the subject up again, in tears, and told her that I knew it wasn't rational, but I could deal with taking something that probably wasn't working.  So she offered me the option of having my ovaries removed, or having them shut down with lupron, and switching to arimidex.  I chose the lupron route as I don't want more surgery, and the blood test shows that I'm borderline menopausal anyway.  My onc says I'm the first woman she's ever switched off tamoxifen because of a LACK of side effects.  Still, I feel like this treatment route (lupron/arimidex) I can have confidence in.  It's probably crazy, and certainly all in my mind, but I couldn't see going 5 years in total fear when there was an option. 

To this day, especially when the lymphedema pain is especially severe, I regret having a lumpectomy and rads rather than a mastectomy.  I had 1 lymph node removed, was told that I had almost no chance of getting lymphedema in my arm, but was never told that 1/3 to 1/2 of women who have sentinel node biopsies, lumpectomy and rads develop truncal lymphedema. So I will have swelling and pain for the rest of my life.  Wouldn't have happened if I'd had  a mastectomy, since the breast wouldn't be there to swell and hurt and there would have been no radiation with the claustrophobic panic attacks, third degree burns, severe pain, scars and deformity.  But I tried to be rational and make a decision based on 'evidence' that "saving" the breast was just as good as "deforming" surgery.  So now I'm deformed anyway, plus have constant pain.  Not my idea of a "better" or even "equivalent" outcome. 

So, that's my story.  From now on I listen as much to my feelings as "facts" and statistics.  Sorry this is so long, but you did ask!  

native,

One third to half of all women who have SNBs get truncal LE? Really? This does not ring true for me...Can you point me to some literature to support this?

I think it's interesting to see what people "choose" in their treatments. I chose no chemo, because of my low-stage cancer, and the prognostic indicatiors were good. But I chose hormonal treatments because I understood the risks vs benefits, for my type of cancer. It pretty much boiled down to my personal values system.

I'm usually amazed that people (not just here on this board) will chose aggressive chemo for an early stage cancer (risks far out-weighing the benefits. We're talking months of poison here!) and then opt-out for the treatment that supports the notion of cancer as a chronic disease. But that's just me, and no cyber-slaps of any sort are intended here. It truly is a values choice, and that's OK.

And, sadly, for all the good outcomes, there are some bad ones. We all need to be aware that bad outcomes happen, and factor that into our decision-making, yet don't let that become the rule. Don't let emotion and fear make the decision.

I suffered a truamatic nerve injury during my implant exchange surgery. I don't know yet if it's permanent or temporary. I knew that post mastectomy syndrome can happen, but rarely during an exchange. And knowing that, I still went ahead with surgery. Both surgeries. Now I'm dealing with the aftermath of my choice. It sucks, but I wouldn't change my decision to have the surgeries.

Anne

Anne

The word, lymphedema, is often inaccurately used only to report swelling. They measure the circumference of the arm. But lymph node surgery often causes, mild to extreme pain, numbness and weakness. Those factors are often not recorded so, as you said "lymphedema" is underdiagnosed.

And if cancer is in the nodes, removing the nodes provides NO SURVIVAL ADVANTAGE.

I know, I know, it sounds like it doen't make sense to leave cancer in the body. But they have known this since the 1950s, that no survival is conferred by removing nodes. Technically, node surgery, even SNB is a "prognostic" procedure, not a "therapeutic" procedure.

This information was in the American Cancer Society's Manual of Clinical Oncology two editions ago. In recent editions they don't even address survival.

Anom

Sorry about the messy post--I didn't realize the tables wouldn't copy correctly, and can't seem to edit them out, either.  The link will take you to the report, which has tables and graphs, which are much easier to look at, but I couldn't copy. 

Ruby,

You had a very knowledgeable and honest oncologist. Most oncs lead you to think that because radiation reduces LOCAL RECURRENCE that it will increase your survival chances. Wrong!

If somebody does rads because they think it will increase survival that is a complete waste.

In fact, no matter which side they radiate, your chances of damaging the coronary arteries INCREASES death rates from cardiovascular disease ten years or more up the road.

We need to ask questions about "overall survival,"  not just survival from breast cancer.

Anom

After reading this thread, I am now thinking twice if I should continue with Arimidex. My onc gave me a 30-day trial which ran out last Saturday. So I have not been taking it for 4 days now - and I can feel the difference.

Like some of you, I dreaded the time that I have to take each pill. I have had persistent muscle and joint pains ever since I took it on May 2. My fingers are numb, my shoulders hurt, my arms fall asleep at night, can't walk straight -- this is worse than chemo! I'm 45, chemopaused, and vaginal dryness got worse with this pill!However, I have Stage 1, Grade 3 and is supposed to be aggressive. I have an appointment with my onc tomorrow, and I don't know what to tell him. I'm scared. I'll pray about it tonight.

I finally had the tamox metabolizing test this week.  The lab screwed up the first test and I have been dragging my feet ever since. 

Tried arimidex and femera with too many SE's to continue.  I am post menopause.  I will try tamox but if the SE's are too much, I will decline future attempts at hormone treatment.

My recurrence rate was 13% without hormone therapy and 6.5 % with it.

sometimes I feel the same way you all have been expressing Anom, Linda and native, I'm on the tail end of rads and it has been plain the there is much damage to good cells. and i get sick in the head just thinking I should just not take any more rad....then there is the tamox decision that I battle daily over...I read of others who after fininshing the 5 years have a recurrence or metastasis, or all the side effects...Hormonal therapy seems to help curb the beast and yet te drug can be a beast too!

I am going to have to stop worrying and just start to trust and pray for the Lord to intervene here....He has made things clear before and my head is so foggy now, I need His hand to take me through the heavy fog.