Given 3 treatment options. looking for experiences and opinions

sacaba

Hello,

I was diagnosed with breast cancer in February.  I have since had a double mastectomy and lymph nodes removed.  There was cancer in the sentinel node biopsy but none found in the remaining chains.  All body scans came back negative.

The oncologis today gave me a few choices in treatment and I would value everyone's experience and input.

1. Chemo for 3 months and a 5 year long treatment of Arimidex

2. Arimidex only for 5 years

3. Do nothing at all.

 Also, if anyone has gone through Arimidex treatment and gone back to work after, I would like to know how that is going.  I am 64 yrs old and am very conflicted as to what to do.

Thanks.

Fearless_One

Can you start with the chemo and then buy yourself a few more months to think about the Arimidex?   I definitely would do the chemo, at least.

Pawprint

That is a hard decision. I would do something since cancer was in one node. Because you are post menopausal i would take the Arimidex. It would be great to have a oncotype score to determine if chemo would even benefit you at all....I say go with Arimidex and continue to follow up with tumor marker tests and occasional scans. I wish you the best.

asmd

There are predictive models to suggest your risk of recurrence-oncotype, adjuvant online (I think that's the name). It seems like you're lacking enough info to make a decision and that maybe your oncologist is being a little cavalier. Either you need chemo or you don't. How can he suggest do nothing or chemo/arimidex in one breath?

sacaba

His reasoning was that I am in one of the lowest risks for recurrence.

ruthbru

If it's in the nodes, you need chemo. Arimidex is the estrogen positive woman's biggest gun against recurrence, so you would want to do that too. I had chemo; not fun but doable and I have been on Arimidex for nearly 4 years with no problems.

JacquelineG

I would be agressive and do chemo and Arimidex. I've done both and also haven't had any problems on Arimidex!

Patriotic

Unfortunately, I don't think anyone can make any solid promises about the risk of recurrence. I would first advise getting a second opinion, if you haven't already. If you live anywhere close to one of the top cancer hospitals or a teaching hospital, I would go there ASAP. I know they do say LCIS is sometimes not as responsive to chemo but, every one is different.



I think doing nothing is out of the question, as your cancer is ER+. What about radiation to the axilla? If you are otherwise in good health, I would do the chemo/Arimidex, to be safe. Good luck. Nothing about this journey is easy.

ruthbru

Make sure you get all your numbers/reports etc. from your doctor. Go to the home page of BCO and print out the 'Understanding Your Treatment Options', read it, take it with you and have your doctor go through it with you point by point. Make sure he/she knows that you want to be an informed member of your team.

dlb823

sacaba, have you had more than one opinion?  One thing you will find is that not all oncologists think alike, nor do they communicate alike, and sometimes it's just hearing that one shred of evidence oncologist #1 never mentioned that can help you to solidify your thinking.  If I was in your situation, I would absolutely get a 2nd and probably a 3rd opinion -- preferably from oncologists who see a lot of breast cancer, so will have seen many women with dx stats very similar to yours, and will have that firsthand experience to draw on.  As asmd said, I don't think you have enough information yet to make an informed decision.

Another website that may or may not be helpful to you is this one:  www.cancermath.net, where you can put in various tx scenarios and compare projected outcomes.  Of course, these stats are general and may not be your outcome, but it may give you some additional insight re. the percentage of reduced risk each potential tx will gain for you.  

Good luck, and please let us know what else you find out ~  Deanna 

LtotheK

There is information missing.  What is your overall health?  64 is young.  If you "do nothing" the chances of return are high.  If you are in good shape, I'd do chemo. That is one person's opinion.  Cancer in the nodes = circulating cancer cells.

I got three opinions, because two were wildly divergent.  Get as many opinions as possible.  It's a pain and so much extra work, but this is not a "do over" situation.

peggy_j

I agree w./ Deanna about getting a 2nd (and possible 3rd) opinion. My understanding is that if it's in the lymph nodes they usually suggest chemo. 

coraleliz

I was given the same options(except tomoxifen instead of amiridex). I was told that if I did nothing I'd have a 25% chance of reoccurence. Took Tamoxifen x5yrs this rate would be 15%. Took Tamoxifen & Chemo this rate would be 10%. He told me that I'd have to weigh the pros &cons of chemo to decide for myself. I think this is a weak recommendation for chemo. He also told me I could quit chemo if side effects became too much for me. I'm 52 & no other health issues (would like to keep it that way). Quality of life is impotant to me. My parent both died in their 70's. Quality was missing from their lifes in their last years.

Some people will say that they need to throw everything possible at this disease or they will regret it if the cancer returns. I'm "thinking" I could say, it would have come back anyway....I'm still undecided...

toomuch

sacaba-Have you seen a copy of your pathology report? LCIS is insitu cancer which does not metastasize to lymph nodes. If you have 3/3 positive nodes there must have been an invasive component. Did your doctor order the oncotype test? This test predicts your recurrance risk and it can be used on patients with up to 3 positive nodes. Patients with LCIS have the option of doing nothing but surgery. I don't think that many oncologists would recommend doing nothing for patients with ER positive BC that have positive nodes. I agree with everyone else that you should seek a second opinion.

blondie45

I would do everything you can for it including chemo so you have no regrets later on.

ruthbru

It is disturbing me more and more that your doctor even gave 'do nothing' as a choice. I think you need a new oncologist.

coraleliz

I think if I called my MO & told him that i chose to "do nothing", he would try to convince me to pick one of my other choices. If I chose to skip chemo, I think he would be OK with it. He actually told me it "wouldn't hurt his feelings". He admits to being biased & believes 10yr non-reoccurence isn't good enough. 

Where the danger lies, is that I'm frustrated being a patient. Appointments, family life, etc. I only open my bills once a month because it will cause me sleepless nights. I or someone in similar(or worse) shoes may chose to just walk away & do nothing. As a former hospice nurse, I had a patient that just walked out on her own medical care. Her daughter was killed by a drunk driver, husband left her after her initial surgery for colon cancer. She said "screw it" & never went for follow up. Two years later she was recieving ongoing counselling re: dtrs death & she mentioned to her therapist her cancer. At that point she was redirected back into medical care. She did die & perhaps timely chemo would have helped her....

Currently I have no appointments scheduled. I could walk away, do nothing & have a 75% chance of 10 yr non-recurrence. I'm not going to do this. I can understand why someone else might.

CoolBreeze

Your sig doesn't make sense compared to your post so I'm confused.  LCIS is not cancer - it is abnormal cells that may or may not turn cancerous - it is a tumor marker.  It is impossible to have it invade your lymph nodes.

Did you mean to put ILC?  How big was your tumor?  What stage are you? 

You must have some invasive cancer for that to happen and for them to recommend chemo.

You also put down that you are ER+.  Have you had an oncotype dx?  That will determine how much chemo will benefit you personally.  I would definitely ask my doctor about that test.

Chemo isn't as difficult as you are imagining, but you don't want to do it without some sort of benefit to you.  That's where the oncotype comes in.