Am I being overtreated ?

Anonymous · August 2012

I don't know if this subject has been discussed or if this is the right place to post, but that is how I'm feeling two years into the 'journey'. I get the strong impression whenever I visit with my onco that he is insecure and to compensate is overtreating me.

At my last visit, I told him that I did not wish to be overtreated. He wanted me on Lupron shots just in case chemo and 18 months of Tamox did not throw me into menopause. I'm 56 for God's sake ! and my gyn is positive I'm menopausal based on hormonal panel.

Short of switching onco, I don't know how to deal with mine and wonder if all oncos are the same ? Should my onco let his personal insecurities interfere with my treatment ? Or he is afraid of being sued if he doesn't cover all his bases even if it means overtreating ?

In any case, I feel this is detrimental to my wellbeing and I will be the one paying the price with insurmountable SEs, if I am not many steps ahead of him. I think I'm losing confidence in his objectivity, really wishing I could wholeheartedly put my trust in him. I really need to feel confident that everything I am doing is working for me and not against me.

How does one gauge their situation and know they are doing the right thing ?

I know this is a delicate subject, but would really like to share with those who feel the same way and would feel terrible if we could not freely do so, as I need to resolve this issue and can't think of a better sounding board

Thanking all the wonderful ladies for their support

exbrnxgrl · August 2012

We are the same age and my hormonal panel indicated I was menopausal. My mo used this to guide tx recommendations. There was no "just in case", especially if would involve a very strong drug like Lupron (which I had many years ago for a non bc issue). If you have the option, could you change MO's? I changed early in my bc journey because unless I am totally comfortable with my doctor (any doctor) I know I will have no confidence in what he/she recommends. What a difference it made when I switched oncologists.

Caryn

comingtoterms · August 2012

Hi, Ruby! This thread dovetails on the one I started! Bloodwork for hormone levels is notoriously unreliable. I was told I was menopausal when I was in chemopause but ended up getting my period again. I have heard that one year w/out a period means you can safely assume you are through menopause. I wonder if you are being over-medicated, as well. Unfortunately, women reccur even when they have taken every possible precaution. That's what sucks about BC. Good luck...... Tammy

Anonymous · August 2012

I know, when he proposed Lupron, I told him I would look it up and when I read the SEs I said no way can I do this. I am presently dealing with so many SEs right now, I'm at a breaking point. This neuropathy and what looks like lymphedema have crept up on me just recently when I'm dealing with so much already from chemo, rads and Tamox. Some ladies appear to be breezing through with no problem whatsoever whereas I seem to have all the SEs in the world and some Cry I so wish they could test us for sensitivity to meds like they do for food and environmental intolerance. I'm allergic to everything under the sun ! food, airborne, chemical, etc. and here they are giving me these extremely toxic meds to which I react so strongly. I'm at my wits end.

Other than feeling insecure and hiding it under an arrogant cover, my onco has otherwise been concerned and very supportive with my getting disabiity and for that I am very grateful. Switching onco so far into my history might be a good thing, but then it might not. I just don't know what to do anymore. I think the hard decision would have to be made if (heaven forbid) I recur.

Hi Comingtoterms ! I've not had a period in more than two years (yeah ! after second round of chemo, that was it) yet the onco did not want to take that into consideration when he said I needed the Lupron shots.....I think he may also like playing God a little, Lol

comingtoterms · August 2012

Hi, Ruby! This thread dovetails on the one I started! Bloodwork for hormone levels is notoriously unreliable. I was told I was menopausal when I was in chemopause but ended up getting my period again. I have heard that one year w/out a period means you can safely assume you are through menopause. I wonder if you are being over-medicated, as well. Unfortunately, women reccur even when they have taken every possible precaution. That's what sucks about BC. Good luck...... Tammy

dlb823 · August 2012

Ruby, I don't know why you would have to switch oncs to get a 2nd and even a 3rd opinion. If your insurance will authorize it, simply make appts and talk to another onc or two. They may disagree with your current onc, in which case you will be supported in your choice, but can stay with your present onc if you like him; or in the process, you might find one you like better and decide to change. But it sounds like you need a second opinion, not necessarily a new onc.

My other thought is that a Complete Hormones Assessment (24 hour urine test) is a far more reliable tool than a blood test for determing not only the amount of estrogen you have, but the ratios of good to bad estrogen. You have to find a naturopathic doc for this, and they're not inexpensive (as you may know), but that's what finally gave me the peace of mind to trust my gut and refuse an A/I or Tamox.

Sorry you're going through this, but I think your gut instinct is well worth listening to in this instance. Deanna

AlaskaAngel · August 2012

Ruby,

Making decisions based on menopausal status is still very much just a rough guess on the part of medical providers, as they still have lots more homework to do to define it. I admire those doing the study (see link below) for finally addressing it rather than continuing to just act is if anyone actually can say for any given individual. Using blood levels, or cessation of menstruation, etc. may tell only part of the story. They know menopause happens, but like chemo they can't predict yet who is truly menopausal or when they have achieved full menopause, and it may be that in some instances some may bounce back and forth while becoming fully menopausal. Studies have shown some women still are not fully menopausal even as late as age 70.

If they would spend more time doing studies to better understand our endocrine, exocrine, and metabolic systems and define our actual individual menopausal status they could target treatment much more effectively. We are way behind in the learning curve because treatment teams don't have anyone on them who studies those body functions in depth, and all of our treatment decisions instead are being made by surgeons, radiologists, and oncologists.

http://www.ncbi.nlm.nih.gov/pubmed/22795229

Anonymous · August 2012

Thank you Dlb, that is very sound advice. I did go for a second opinion re chemo 'choice' I got and he confirmed that he would have done the same thing. I then wondered whether those two had just played golf together the previous weekend....oncology is a small world in my city and wonder how much they cover for each other

I also need to get my b*m to a naturopath, in the process of screening and putting finances together. I don't want to be teaching to one but learning from one

Gut instinct, best advice sister, thanks !

pamelahope · August 2012

Ruby, I saw your post after researching for hours about Femara and reading about women who have to take pain killers and cholesterol medication. I am thinking about five years of poor quality of life when I am healthy besides bc.

I have been asking myself am I being overtreated? I think the answer is as simple as what is your risk for reoccurence. Then you make the decision to take on a treatment or drug based on your chance for reoccurrence.

Pam

coraleliz · August 2012

Ruby-I asked my MO about Lupron(or Zoladex) when I started Tamoxifen. I was almost 53 & not yet menopausal. I had been on Lupron for non BC issues 20 years ago. I actually liked it. I didn't have bad hotflashes on it, just wasn't cold all the time. Also like that the periods stopped. My MO said not unless my GYN had good reason to put me on it. I didn't persue it further because it would mean going for monthly injections & I was tired of going to doctors. Ovarian supression is used more frequently in Europe than here in the states. Chemo is used more frequently here in the US. That's what my 2nd opinion MO told me. Perhaps someone can dispute that.

I haven't had a period since starting Tamoxifen. I have a sister who is almost 57 & not yet menopausal. I definitely don't want to switch to an AI, with hormone panels being unreliable.

I know what you mean by "oncology" being a "small world". I feel the same way. All the oncs, where I live, have joined forces & all 6 of them are now partners. My 2nd opinion was 2 1/2hrs away.

Natkat · August 2012

I am one of those people who NEVER finishes the full 2 weeks of antibiotics - even though doctors always warned me of all sorts of dire consequences like the bug coming back stronger and making me sicker. Never happened.

What made me sicker was FINISHING the full 2 weeks of antibiotics always gave me a yeast infection. I found I could just take a couple days of antibiotics, knock-out the sickness, and skip the yeast infection. Then I quit taking antibiotics altogether ...

this has NOTHING to do with cancer ... just sayin ...

Anonymous · August 2012

Sorry ladies, I have written out two very lengthy replies only to lose them Yell

will try again later

Anonymous · August 2012

AA, isn't it frustrating when studies cannot be accessed unless we cash out $$$

I totally agree with you that there must be a strong connection between the endocrine system and BC. Our body is extremely complex and all parts are inter related. I am not my breasts. I've uncovered tons of research on DIM for thyroid cancer and other cancers and am getting frustrated not to see the same for BC

This study refers to Tamox as endocrine therapy....???

It states: "whether a pharmacogenetic profile should be obtained prior to initiating tamoxifen therapy is currently a matter of debate, although summing up all the scientific evidence available on this issue it appears that the genetic screening would be a useful support for clinical decision making in selected patients"

Well, as mentioned in my OP, it would certainly appear so in my case and not just for tamox but for all drugs, especially for us cancer patients !!

http://ukpmc.ac.uk/abstract/MED/21917382

ER detection in Thyroid Tissues: Comparison of Various Studies (old)

Molteni et al. (1981) 07 SDG* (3 fmol/mg) 2/7
Clark et al. (1985) 15 SDG (0.2 fmol/mg) 14/15 10
Chaudhuri et al. (1986) 45 SDG (1 fmol/mg) 23/45
Marugo et al. (1989) 30 DCC (3 fmol/mg) 37/60
Miki et al. (1990) 88 DCC (1 fmol/mg) 20/88
Frolich et al. (1990) 23 IHA 0/23
Diaz et al. (1991) 80 IHA 32/80
Metaye et al. (1993) 42 0EIAS 29/42
Hoeven et al. (1993) 135 DCC (1 fmol/mg) 61/135
Giani et al. (1993) 34 ICA 0/34
Jaklic et al. (1995) 11 IHA 0/11
Bonacci et al. (1996) 48 EIA (1 fmol/mg) 18/48
Present study (2001) 50 IHA 0/50

http://repository.ksu.edu.sa/jspui/bitstream/123456789/3363/1/Estrogen receptors in human thyroid gland: an immuno histochemical study.pdf

And we've not mentioned the very important role that adrenals, parathyroids, pancreas, etc. etc. most likely play in BC
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PamelaHope, yes, recurrence rate sounds very logical. Unfortunately for me, I'm not a great believer of stats and I sometimes feel silly for not wanting to know what my rate is. All I know is that my providers refer to my case as ‘high risk'

And I agree that what is not logical is taking more and more meds to address the endless carrousel of SEs inherent to each drug.
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Coraleliz, I think I remember reading that you opted out of chemo, it struck me because of our somewhat similar dx. I may be mistaken, in which case I apologize. But if that is the case, then I understand why you would want to stick with Tamox as long as you can
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NatKat, I'm the same Lol - As far as I'm concerned, I got the best out of Tamox, as it is known to work best the first two years. What about the other 3 then ?

Am I being overtreated ?

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