Stage 2-recurrance percentage % risk?

Late Risk for Recurrence with Estrogen Receptor–Positive Breast Cancer

http://www.medscape.com/viewarticle/812513_3

https://community.breastcancer.org/forum/73/topics...

Hi ... I have just started back to breastcancer.org after laying low for a bit but really finding I'm needing the support. I hope you won't mind me joining your group. It spoke to me , I just had my yearly mammogram and can totally relate to those stressed feelings and utter relief for s normsl mammogram. This year they added a new twist and after physical exam the Dr had found some thickening so off to US I go. I am hoping my low oconotype score pulls me through...the waiting is so hard. It so good to see similar diagnosis and that you all have stayed healthy for so long. I really need support of this group as I live in a small town and don't know many people and certainly no one who can relate.

Have a happy weekend 👩❤️👩,Teresa

Snowgirl63, it is too bad that you don't have any women to talk to who have also walked the walk. I have not yet started any treatment. Just been going through that anxiety, dread, inner turmoil and despondency that flattened me. It was talking to other real, live women that pulled me through and helped me along. I was shocked by the willing generosity of ladies who barely knew me to give me their names and number, jotted in a hurry on a scrap paper that they pressed into my hand and said, call any time. And they mean it! THAT ... that reaching out. There is power and healing in that. No healing for the cancer, but healing for that feeling of falling through space alone. Nope, others are on the crash course too.

Does your local health centre have information on support groups? Maybe you could be that person who puts an ad in the local paper and start something that reaches out to other women in your small community? But yes. Real people (men too!) are that needed connection.

Teresa, I see that we have a similar diagnosis, and you were diagnosed a few months after me. Unfortunately, the fear of recurrence will always overshadow us. My doc told me that my risk of recurrence is in the single digits, and that is pretty good odds. I belong to a group of BC survivors who row, and it is so wonderful to be with people who understand. Some of them have battled cancer twice. One woman just celebrated 22 years of survivorship. The good news is that the docs are watching us carefully, and new treatments are being developed all of the time.

As for a support group, is there a social worker at your hospital that you can talk to? Perhaps she/he can put you in touch with other survivors

Snowgirl:

Rescue Remedy is great stuff! It certainly will not harm you. I keep a bottle next to the kitchen sink for quick access. A lady I know locally mixes up custom Flower Remedies for people either in distilled water or brandy as a base. I always choose brandy because, well, brandy.

If you are interested, the Bach Flower Remedies (of which the Rescue Remedy is one) are interesting to learn about. Something to take your mind off the bad thoughts and worries.

I am upset reading about the doctor brushing you off. That just makes me mad! I have a prescription I've had since 1992 when my daughter was born. I went a little bonkers and became CONVINCED that she was going to die in her sleep and it would be my fault for being a bad mother and I could prevent this if I checked on her every 15 minutes, all night long, every night, to make sure that I never missed being there if she needed me to save her ... And when I went to my doctor, pretty much a zombie, all twitchy and bleary eyed he said whoa, lady, take a pill!

All these years later I still have that bottle of pills and over the past years I have taken a few to get me past the very worst moments in my life when crippling anxiety made me curl into a ball, cry, shake and throw up. But mostly just knowing I have them if I really need them has even been a help. Somehow knowing they're there makes me feel a bit more able to face things. And if I can't face things, can't deal, I take one and say, tomorrow is a new day but for now I need to check out. Go back when your regular doc is in town and say you need something. (and tell him to stuff his book up his...)

As for books, there is one I suggest to people who struggle with anxiety. It helped me through a very bad time in my life. Hope and Help For Your Nerves by Dr. Claire Weekes. It is old and might be out of print, but if you can get a copy used, I found it explained how I was feeling when no one else seemed to grasp it. And feeling understood was a big help to me.

I am sorry you are hurting. This is a terrible thing and has a way of making us feel isolated and cut off, different from everyone else in our lives, set apart somehow, even as we share a forum with tens of thousands of other women who are in our shoes. There is no way to describe it. I hope you find some peace.

well you guys after all that worry comes great relief for me...I got an all clear with no signs of anything Just scar tissue is what the dr felt during the exam and the redness she was concerned about is because of my lymph flow. Omg what a relief. I wish this feeling for each of us at ever new mammogram. So that's 3 years clear now. Time flies when you not even having fun. So I better get out there and have some!

Time to start making goals and making plans to achieve them!

And so much for the breast health clinic helping me, apparently I'm discharged from the program, even though I had diagnostics that went unchecked and I thought that was the goal of the clinic to make sure I dint fall through the cracks. I sure hope this mix up doesn't happen again!

Hugs to you all ....Teresa

thank you Hopeful I shall do that ... I think it will take time to sink in for sure. How are you doing?

Hugs,Teresa

I'm doing well, Teresa, thank you. Up and down but happy to have some good weather recently so that I can putter in my garden and plan some outdoor activities after a very long, cold, wet winter and spring. Finally!

Worst moment, in a series of bad moments, was my appointment to get results after surgery. I was numb, terrified, drained. I,too, didn't react to her news.

And the surgeon got very angry with me. "It's good news - clear margins. I got it all. Your cancer is gone. Why aren't you happy? You should be happy. What's wrong with you."

Oh, the empathy!

FWIW, Runor, my OnctotypeDX was 24, and I had a 16% chance of recurrence with Tamoxifen alone. It should say on your report what your recurrence percentage is with Tamoxifen on the report. I was told chemo would get my recurrence percentage down to below 10%, and maybe as low as 7%. Mine was ILC, and it's sneaky, so I took that into consideration also in deciding on chemo, and I'll also take the AI when chemo's over.

My cancer is 100% ER and 100% PR. As I understand it the onc said hormone blockers will starve this out. He said that chemo will not improve my situation one bit. Zero.

My lymph nodes were clear. No LVI. No necrosis. The cells look pretty much like breast cells, they had not gone all wild and hairy, weird and terrifying. They feel the lumpectomy got clean margins. I will be having radiation.

So I'm kind of wondering, what is it that we're going after? Is it assumed that there are rogue cells in my body, despite all this? Are these rogue cells going to take 5 years to starve out? God knows I'd drop dead if I go more than 10 hours between meals, but it's going to take 5 years to starve out cancer?

I see there are some basic pieces of information that I do not grasp.

Fe_Princess:

Under NCCN guidelines for the treatment of breast cancer (Version 2.2017), "Reasonable criteria for determining menopause include . . . Prior bilateral oophorectomy . . . "

BarredOwl

Hi Runor:

Re: "Is it assumed that there are rogue cells in my body, despite all this?"

Yes.

General Information:

The main rationale for systemic drug treatment (chemotherapy; HER2-targeted therapy (for HER2-positive disease); and/or endocrine therapy (for hormone receptor-positive disease) as indicated) is the risk of distant (metastatic) recurrence.

While node-negative ("N0") status is a favorable pathologic finding and is generally associated with a lower likelihood of suffering distant metastatic recurrence. It is not a guarantee that no cells have left the primary breast tumor and reached distant sites. Even with node-negative (N0) invasive disease and no lymphovascular invasion ("LVI"), it is still possible that in the years before surgery, a few rogue cancer cells broke off from the breast tumor, and moved to distant sites via the lymphatic system or via the blood stream.

A few rogue cells or clusters of cells at a distant site(s) are a form of "micrometastatic" distant spread that is NOT detectable by conventional tumor staging procedures (lymph node biopsy) or whole-body scans. Thus, such undetected distant micrometastases may be present, even when scans are negative, nodes are negative, and there is no LVI observed. This is because these methods are not 100% accurate in determining whether any tumor cells have moved to distant sites, and cannot exclude the possibility.

The risk that current undetected micrometastases may grow and become clinically manifest as recurrent metastatic disease at a later date provides the rationale for systemic therapy:

>> Pantel, J Natl Cancer Inst (1999) 91(13): 1113-1124 - [parenthetical notes added by me]

>> "Because the goal of [post-surgical, systemic] adjuvant therapy is the eradication of occult [undetectable] micrometastatic tumor cells before metastatic disease becomes clinically evident . . ."

Whether such treatment(s) is warranted or not in the individual case depends on estimated individual distant recurrence risk, based on standard clinical criteria (e.g., age) and pathologic criteria (e.g., tumor histology, tumor size, lymph node status, hormone receptor status, HER2 status, etc.), and optionally, information from prognostic tests such as Oncotype (if indicated).

The Oncotype Test for Invasive Disease "Assumes" Receipt of 5-years Endocrine Therapy:

Be sure to obtain a copy of your Oncotype report for your review and records.

The Oncotype test and reports were designed for use in certain hormone receptor-positive, HER2-negative patients in whom distant recurrence risk warrants consideration of or a recommendation for chemotherapy, and therefore whom would also receive a recommendation for endocrine therapy under current clinical consensus guidelines for the treatment of breast cancer.

The risk information shown in the Oncotype reports reflects risks determined in clinical studies of patients who were all assigned to receive five years of Tamoxifen (either Tam Alone or Tam plus chemotherapy). This type of information goes to question of whether or not to add chemotherapy to endocrine therapy. Thus, the risk information provided by the test "assumes" or "reflects" the level of risk in those receiving five years of endocrine therapy. A person's risk would be higher than shown in their report if they were to decline endocrine therapy. Those who wish to better understand the potential benefit of endocrine therapy alone versus no additional treatment in their particular case should discuss this question with their medical oncologist.

BarredOwl

Hi Fe_Princess,

I tolerate it fairly well. I won't lie, the muscle and joint pain are NOT fun. And it is constant. That said, I still walk 3-4 miles 5 days a week ( if not more) and play golf 5-6 days a week. I do have pain but I push through it. It helps to keep moving. I take two Tylenol a day to help with the pain. I also do massage and acupuncture every three weeks and that helps a bit. But nothing really makes it go away altogether - I just deal with it. It helps to know that doing this this gives me the best chance to not have to revisit this disease ever again🙏🙏🙏