No Hormonals??

Newtothis2011

Hi everyone,



I'm very confused and just looking for some feedback. If I am 60, diagnosed stage 1with micro invasion and had a lumpectomy and radiation, shouldn't I still be placed on Hormonals? Medical oncologist says its not necessary. Choosing treatment is so important and I want to make sure I make the right decision. Anyone on here similar to me? I would o everything the doctor recommends to prevent metastasis, but he isnt recommending this for me. Any thoughts?



Thanks in advance for the help.

pupmom

Are you ER/PR positive? That is what usually determines whether one gets hormonals. Those who are ER/PR negative don't benefit from hormonals, those who are ER/PR positive do. If you have your pathology report it will tell you this. Otherwise you should definitely ask your doctor. 

Best wishes! 

Newtothis2011

Thanks so much for the reply Yorkiemom. Yes, I am Er+/Pr+ and Her-. The medical oncologist says with cancer caught as early as this, and the chance of reoccurance so low, his standard recommendation is not hormonal. Of course it is ultimately up to me, and I am just trying to make sure the right decision is made.



This is so hard.....

dogsandjogs

Do you have IDC or is it the "in-situ' type? Maybe that makes a difference.

Newtothis2011

I have IDC that is a 1 mm micro invasion.

dogsandjogs

You might consider a second opinion. I have the opposite scenario. Onc wants me on Aromasin and I want to get off it because of bad side effects. I'm thinking of getting a second opinion as I'm 75 and don't think I need hormone therapy

dogsandjogs

Oh, that is really small. Mine was 9 mm.

barbe1958

New, I didn't get offered hormonals either and I am ER+/PR+ as well! I look at it this way: I've avoided SEs like bone and joint aches and pains, and IF I get a recurrence, the hormonals will be my first line of defence before any harsh chemos!! So...I'm kind of okay with it.....I'm 54 by the way.

ruthbru

I'd get a second opinion. Anti-hormonals are ER positive ladies best weapon to prevent recurrence!

peggy_j

Another vote for a second opinion. BTW, did he tell you your risk of recurrence with and without taking anti-hormonal meds? My MO uses a standard database. I think it's Adjuvant Online. 

Newtothis2011

Thank you so much for all of the responses. It was grade 1, and the MO stated less than a 1% chance of reoccurance.

Newtothis2011

Bump

Blessings2011

Newtothis2011 -

I had multifocal DCIS (two areas), with a microinvasion of IDC.

We're talking MICRO here. I had two areas of IDC - 1.5 mm, or the size of half a grain of rice, and .5 mm, or the size of a grain of salt.

I had a BMX (cancer on the left, prophy on the right), no lymph node involvement, and all margins were clear.

My MO said without medication, my risk of recurrence was 1 - 2 %.

She also prescribed Arimidex for the next 5 years. I'm 61.

I really don't want to take the AIs, but in exchange for promising her that I would at least try, I also got her word that she would trust me if I told her my QOL was being badly affected by SEs, and she would then try another drug, or just take me off of them completely.

ruthbru

Do you have any other health problems that could impact your decision? If not, it could possibly something you try, but you also could feel pretty comfortable quiting if you have SEs.

Also do you know how positive you are for estrogen? If you are only mildly positive that would be different than if you were, say, 90% positive.

Newtothis2011

You sound so similar to me Blessing. It just doesn't make sense why yours is encouraging you to take them, and mine isn't.



I know I was strongly positive, but don't remember the exact % ruthbru. I'll have to look.



I can't believe how much anxiety this is giving me.

ruthbru

If you are strongly positive, you should try it.

bluepearl

No need for hormones. Recent large Dutch study showed that women 60 or older with small, (1 cm or less) ER+/PR+ Her- , no LVI, clean nodes, have the same mortality as women the same age with no breast cancer. Given some of the risks associated with hormonal treatments, the risks outweigh the benefits.

Blessings2011

bluepearl - do you by any chance have a link to this Dutch study?

Or can you tell me how to find it?

Thanks...

dogsandjogs

Maybe this is the study (Danish, not Dutch)

http://health.usnews.com/health-news/family-health/cancer/articles/2011/08/31/some-older-breast-cancer-patients-can-skip-hormone-therapy-study

bluepearl

Yes, that was the study and sorry about Dutch instead of Danish. It is also in pubmed.com too as a science journal publication. I have those qualifications and the oncologist said hormone therapy was of modest benefit....no chemo and no radiation (because I had mastectomy). However, I decided, based on other studies regarding lower tamoxifen doses to take half (10 mg) because I am too worried about strokes (I have rare -but- there atrial fibrillations..been five years since the last one and only have had two). I also take a half dose of metformin (250 mg. at my largest meal). I'd take aspirin if I could, but can't...and changed my blood pressure med from an ACE inhibitor (possibly increases breast cancer recurrence) to an ARB (which possibly reduces it). We try what we can that has the least risks!!! Thanks dogsandjogs for the correction and placing the link (I don't know how to do this).

dogsandjogs

I also have atrial fibrillation and am on a blood thinner.  Have an episode about once a week.  I had more when I was on the Aromasin (but maybe just a coincidence?)

Today Medco called me because I hadn't refilled the Aromasin.  I explained I had decided to do without a hormonal.  It is nice they take the time to call you when an RX hasn't been filled in a timely matter. I was impressed!

PS I am also on a BP pill and two drugs for the Afibs: metropolol and flecainide.

My internist does not like that I'm on a blood thinner, but the cardiologist disagrees.

I also worry about a stroke, so I'm staying on the blood thinner and just being extra careful when I go jogging.

Blessings2011

I am SO opposed to going on Arimidex in the fall....but I promised my MO that I would at least try.

I'm doing so well on the Optifast....most of my fibromyalgia and osteoarthritis symptoms have disappeared and I don't think it's due solely to the weight loss. I also believe it has to do with eliminating the white sugars, white flours, and gluten from my diet.

I was living with severe daily chronic pain, and now I can get out of bed without limping and being all hunched over for the first hour or two. I'm back at the gym and out riding my bike. I have energy. I've already had most of the side effects of the Arimidex in my life - without ever taking the drug!

But here's the deal: the Oncologist's job - their ONLY job, really, is to make sure that their cancer patients either NEVER have a recurrence, or should they have one, get the best treatment possible for their cancers.

Right now, even with my 1% - 2% risk of recurrence, my MO wants it even lower. She says that the AIs will lower that risk by 50%, AND - losing the weight and excess body fat and working out will lower it by another 23%. You can't get much lower than .3%, unless it's zero, which of course, she can't say....

Here are the problems with all the research studies on AIs so far: the results deal solely with mortality. What my MO is concerned with is risk of recurrence.

Granted, I could live just as long as my non-cancer peers if I don't ever take the Arimidex.

But now we factor in the possibility of a local or distant recurrence (mets) and all the ramifications of THAT diagnosis. I think her position is sure, I can live just as long, but would I rather do it WITH a recurrence or WITHOUT?

There just aren't any right or wrong answers. I think the best we can do is listen to the professionals, try to understand their reasoning, trust them if we believe they are listening to us and understand our positions, and ultimately, make the decisions that feel right for us.

I have deliberately stayed away from the "AI Side Effects" threads because I'm already freaked out. But what if I'm one of those women who don't have side effects, or have SEs that are manageable?

I keep hearing my mom's voice (a 26 year BC survivor) in my head: "Honey, you won't know until you try."

So I will. To a point. And my MO understands this.

bluepearl

dogsandjogs: I think hormones have everything to do with some atrial fibs...I got mine during menopause. I have what they call premature beats and they are often increased during menopause (ie estrogen depletion) and a 'run" of them can initiate an A-fib. I also have A-fibs that are caused by vagal nerve disturbance which means that beta blockers such as the one you are on, causes more problems with A-fibbers like me than solves them. I went on an ACE inhibitor that research indicates helps A-fibs but because of recent research suggesting they increase breast cancer recurrence, switched to the ARB. I don't know the cause of yours or your age, but if you have no heart valve problems etc. you might want to consider an ablation which can cure the problem and is much better than drugs. All of the hormone drugs have clot risks with tamoxifen the highest and AIs have their own issues with heart problems. My internist didn't seem all that concerned about my infrequent A-fibs and tampxifen, but I am. Exercise is good for you. I know a woman who briskly walks at least 5 Km a day and has permanent A-fibs AND is 86! 

Blessings2011: right on! My friend is on AIs and has NO problems (stage 3)..the risk to benefit means alot here. Your read stuff and get scared but nobody hardly writes about their good experiences with drugs. I was scared stiff about SSRIs and wouldn't try them until I felt it was necessary and now I feel better with very little SEs...the 10 mg a day tamoxifen doesn't seem too much of a problem, nor the metformin. 

dogsandjogs

Bluepearl: Thanks for posting this, especially about the 86 year old woman. I am 76 and a former marathoner who jogs now at a slow pace. But it is every day with my dogs.

I have the occasional Afibs - the doc says people over 60 can have trouble with the heart's electrical system so that's me I guess. I also have a 1 degree left bundle block. Today I had an episode of long pauses between beats which almost made me pass out. My BP was also really low, 98 over 65.  Anyway I called the NP, they want to put me on a month-long monitor again.

How did they determine that you have a vagal-type afib?

bluepearl

both times I got an A-fib was drinking something too hot and too cold. The vagus nerve extends through the digestive system. There's a site called A-fib report...tells you the differences. A BP of 98/65 is actually good for most people. I might add that beta blockers which you are on also inhibit breast cancer recurrence as does your exercising. You have excellent prognostic factors! (vagal induced A-fibs make you pee alot....and I did...) so all-in-all you are doing everything right for both conditions. If you jog slow, then for one minute jog fast, then keep jogging slow until your breath comes back, that's interval training and is REALLY good for the heart and lining of arteries. Keep on going girl!!! (I'm only on "brisk walk" altho I used to go 4.5 mph on elliptical for four years and attribute that to perhaps why I had such a slow growing cancer...but who's to know eh! Makes us feel better anyways!

barbe1958

bluepearl, if you say you don't need hormonals, why are you taking Tamoxifen? That's a type of hormonal.....

bluepearl

I used to take 10 mg....not anymore.....went off a couple of months ago.

bethhoul

I am really conflicted about taking the hormone I've been perscribed (Letrozole 2.5 mg.).  I am 65 years old with ER+/PR+. HER2+.  I have waited almost 3 months post-radiation to start because I'm just not sure if I need it at my age; also, I'm concerned about side effects.  Well, today I started it; I guess I feel better safe than sorry.  I'm still just not sure.  My Oncotype score was 16.  Anyone have any comments?  Beth

Cindyl

Beth, for what it's worth, one of the oncologists at the practice I go to feels strongly that for Highly ER+ patients the anti-hormonals are more important than any other treatment.  He says you can skip rads if you must, but take the pills.

ruthbru

For me, chemo lowered my chance of recurrence 20%, anti-hormonals lowered it 40%......that is HUGE! I was thrilled to have this option, because I can't think of too many SEs that would be more awful than having to deal with cancer again.

loriio

I have similar diagnosis to the original poster. A 1mm micro invasion of ILC was found in my PBMX. It was so small my MO felt strongly tamoxifen would have more risks than benefits based on how small the cancer was. He advised me to work on muscle tone (once I've recovered from the surgery). I am also seeing a nutritionist to change my diet to include the right kinds of foods to limit estrogen naturally. He is a well respected MO in our area and I was more than happy that he didn't recommend tamoxifen.