Age63-DX 19-ER/PR Pos-stage1-Need to learn from yr experience

Gaamp12

Sorry about the long subject.  I was trying to target those that have lived thru this decision.  I had a bilateral mastectomy. My onc is suggesting only hormone therapy.  My health is in top shape...this was the shock of my life...my last half marathon (walk) was in Sep.  Onc said if I had recurrence it would probably stage 4.  My cancer spreads in linear form.  Surgeon took 3 lymph nodes all clean.  I like to hear from your experience...good decisions and regrets.  This is my personal way to help me make a decision even though that I already told the onc that I would take the anastrozole.

Need your thoughts...no one here to talk to.  Thank you so...so...so much.

Jomama2

I am 61, er/pr+, but had only a lumpectomy with 16 rads, so we had different treatments. I refused Arimidex...am a year out and just got my first post-surgery mammogram...results yesterday were clear. Really just wanting to bump this up to see if you can get some more responses. (You may want to update your account signature line and put all pertinent info there)

SpecialK

gaamp - go to the top of the page and click on "My Profile" and fill in the particular info about your diagnosis and treatment and you may get more responses.  The information about size and grade will help other posters understand why your oncologist made specific recommendations and others with similar stats will respond.  I also had a bilateral mastectomy (BMX) and I am currently taking anastrazole (Arimidex) but I did have to do chemo and Herceptin due to positive nodes and Her2+ status.  I was 54 at diagnosis, but otherwise healthy and active, like yourself.  I have not had any significant issues with the hormonal therapy other than some joint pain, which has been mitigated with a daily Claritin, going gluten-free, and exercise.

Gaamp12

Thank you Special K....added the information to the profile and made it public.  Hope to get some comments on this.  How was the chemotherapy.  I am thinking on doing that...it is so hard to think straight.  How was the chemo?  I am thinking on doing this since my cancer grows in linear form and very hard to detect. 

Jomama2 congratulations on the clear mamogram!  Thank you for writing, I hope more people write.

Gaamp

SpecialK

gaamp - chemo is never easy but if I had to do it again I would.  I went into chemo after having 5 surgeries in rapid succession so I was exhausted and depleted going in!  I experienced relatively mild side effects, of course lost my hair, and didn't start to really feel debilitating fatigue until after the fourth infusion.  I had been receiving steroids only on the day of treatment but I did develop a rash.  I believe it was from the antibiotic I took for a UTI since I am allergic to many, but because they could not definitively attribute the rash to the antibiotic, I had to start taking steroids the day before treatment and for a couple of days afterward.  This contributed to the fatigue, but I still managed to get out and about and do all the normal things I had been doing before.  I learned as time went on how to organize my life during chemo - I usually felt great for at least 10 days before each infusion so I shopped, cooked, paid bills, cleaned my house, did laundry, etc., so that I could rest for a few days and not feel that I had a bunch of stuff that needed doing.  Once I felt better, I met friends for lunch, went to the mall, tried to exercise (not always faithful about that!), etc. and live my life as normally as possible.  I attended a wedding two days after the 5th chemo - had a great time!  Has your oncologist discussed Herceptin with you - I see that you indicated that you are Her2+?

Gaamp12

JO-5 and SpecialK Thank you for your insights...I am sort of frozen right now.  I am going to make an appointment with the onc to talk about chemo.  Might as well take care of all upfront and god willing all will be fine.

Wren44

I've been taking anastrasole (Arimidex) since March. Once I began taking it in the evening, I have had no side effects. When I took it in the AM, I couldn't stay awake.

foxey2410

I am 63 just have surgery, This is so much to take in I have emphzema and have oxygen would cemo be that good for me at my age I had a lumpectomy on feb 6 2013 before surgery I was under the understand from biopsy they would remove cancers had 1 on each both ductal caranoma left lymph nodes  biopsy no lymph nodes in left but yes in right dr and  redioligest said remove bothe masses and some lymph nodes on right 1 on left to check for certain and take out the cancer in the right and the cancer in lynph nodes and 1 or 2 extra could not tell me how many nodes were effected on right til l after surgery. but i would do 7 weeks of radiation after surgery well surgery dr. called said she thinks she got it all no csncer in left nodes and a lot in right 3 rows what ever that means but she thinks she got it all. in all my pain I was very happy with that news, we word she said went to have drain took out said  the word chemo it just took me back  I have been sick ever sense just don't know what to expect or do now. I was having a lot of pain could not sleep chemo is a word i did not expect. to here how long can we live if we say no to chemo and just have raditation what they said befor the operated, I am so confused  any info would help please said left side is stage 1 grade 3  my right side stage 2 maybe 3 and grade 3 they are both ductal caranoma cancers.

ruthbru

Chemo is not fun, but with the anti-nausea drugs now days, most people find it is not as bad as they thought it would be. I felt like I had a mild case of the flu the whole time, but was able to do everything that I had to do, and most of the things I wanted to do too during treatment. Work with your doctor as to what your own personal risk reduction would be with different treatment options and make your decisions made of what will give you the best chance of never having to do this again.

Gaamp, if you are HER2 positive, you will probably need chemo plus herception no matter what your other stats indictate. Keep on exercising, that will help you get whatever treatments you end up doing better, and bounce back faster once you are done.

Foxey, if you need chemo, the 'good' thing about grade 3 cells is they are the most easily killed by the chemo drugs. Remember, chemo is NOT the enemy, cancer is. Chemo drugs are working FOR you.

czpugi

I started arimedex in November 2012.....I also couldn't stay awake when I took it in the morning.....now that i take it before i go to bed.... I am just fine....though I do get hot flashes....

Musicmomjv

I was diagnosed in June2012 with IDC ER+PR+. I had a bilateral mastectomy.

My onc test showed me in the low risk range. I am on tamoxifen. With chemo it only would lower the risk of recurrence by 2-3%.

I am glad that I made the decision to have a bilateral mx. My onc told me that that the risk range that I was in did not warrant chemo or radiation.

Sistercoyote2

hi...I am 63 in march.  Lumpectomy on December 17, stage 2, no node involvement.  My oncotype score is 19....trying to decide on chemo or not, then radiation and then tamoxifen.  Hate the thought of chemo or the drugs.  Have led a healthy life with no major illnesses and get exercise regularly.  I cold never take  birth control pills so afraid of the drugs.  

rosie9037

How do you get an oncotype score?  I didn't see one on any of my reports.  I have had a partial mastectomy, no node involvement--currently in radiation.  When I finish I will be on exemestane (Aromasin).  Really, really hate the thought of that.

Sistercoyote2

the oncotype test is one your MO can request for you.  It compares your diagnosis, etc. with many other people.  It is a company out of California and the test is quite expensive.  Takes 2 weeks.  They will need part of your tumor to examine. 

Sistercoyote2

I hate the thought of the daily medications too....I never have had good luck with any type of medication...birth control pills and prempro....could never take any of these. 

rosie9037

It is not just taking a daily pill (at 78 that is not news).  The side effects worry me.  My hospital is having an information session on hormone therapy on Jan 30, and I plan to be there to ask questions.

sandilee

Hi Gaamp,

  I'm 63, although I've had my cancer since late 2007.  I've only been on hormonal therapy, as my oncotype score was low, predicting little help from chemo, even though I am grade 3.  While mets showed up in 2011, I've been stable on a hormonal for the last 2 1/2  years, with no real side effects.  

  I must say that when it works, the hormonal therapy is a godsend.  With ER+, grade 1, 0 node involvement, it's not surprising that your onc is recommending hormonal therapy rather than chemo, which is much harder on our bodies.  Why use big guns which often cause collateral damage when a smaller one will do?    Side effects from hormonals vary within each individual. If one doesn't agree with you, there are others to try.  While taking a pill didn't work for me, getting monthly injections of Faslodex works great. There are a lot of options. 

  Good luck to you. It's a good thing to explore all the possibilities, as you're doing, so that you have confidence in your treatments. But do remember that you can change if they're not working for you.

Momof4gramof3

Gaamp, I too am 63 and just diagnosed last December. I chose lumpectomy, due to the size and negative MRI, and radiation. My DX score was 18, ER/PR very positive and HER neg, and my MO said no way did she think I needed to have chemo. As a stage one with clean nodes and margins, I did 18 radiation treatments and have just started on Arimidex. I'm not so thrilled with some of the side effects but hoping that I'll find a way to manage them and/or they'll subside over time. That being said, I'm still in shock. It seems totally surreal that I got breast cancer. 
This is only my second post on the site and I, like you, am in need of support.
We're all in this together.

Sistercoyote2

Your diagnosis, etc. is so similar to mine.  One major difference is that I am facing 34 radiation treatments.  I have four more and they have been brutal.  I am also still in shock that I was given this diagnosis.  I am such a healthy person and still can't believe that they were talking about me....I am anxious to get back to my exercise, my life and no more 8:30 appointment every day.  Not looking forward to the Arimidex portion of this journey and not going to start that until May.  And, I will be scared to go to that first Mammogram when it is required for me to do.  Also, worried about going for the Colonoscopy that I have to schedule this spring.  Also, facing a MOUNTAIN of medical bills which I have no idea how I am going to tackle...My work performance is not normal and that has been difficult also.  My home life so far seems okay, but worried that my boyfriend is going to get tired of his sick girlfriend.  Sex is difficult since I am so sore....and I am afraid that will get even worse when I start the medication.  I am noticing a slight difference in him.  We have been together for seven years, but he is much younger than me and is extremely healthy...Good to get this off my chest...Worried, tired and sore........and feel all day like I need a good cry....

Momof4gramof3

Sistercoyote, our diagnoses are VERY similar. My MO and RO felt that because it was a grade 2, stage 1 with no nodes, clean margins and an Oncotype of 18, that the Canadian fractination, a shorter course, higher dose of radiation would would work for me. I also live about 100 miles, one way, from the treatment center. That meant that I couldn't work as long as I was having treatments. I had to stay there during the week and go home on the weekends. I know, though, after I finished I took another week off of work and then went back but I no where up to my optimal work performance at all. I am still so very tired. I had to use all my FML and some leave of absence to keep my job. The arimidex isn't great. More hot flashes. Vaginal dryness, which makes my sex life virtually non-existant at this time. I think I'm just really scared. Pain and bleeding isn't something I've found a way around yet. But having experienced it makes it more difficult to consider it again. Never mind that my breast is still VERY tender, too.
I think we're still at the crying at any given moment stage. I don't about you, but it catches me at really unpredictable times, sometimes, and I'm bawling. It's got to get better......

ohiofan

What does pT1c mean???  Just got my labs online.