Stage 2 Sisters Club
Comments
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I have been reading and learning so much from everyone, but this is my first post.
Need some advice. Very confused what to do. Does this timeline seem right? Concerned not doing any treatments after surgery will be 6 weeks this Wednesday. Trying to educate myself since the doctors only seem to give info on what you ask them.
I was diagnosed on Dec. 11th, surgery January 7th, but since then everything seems to be moving in slow motion. Seen MO two weeks after surgery and he ordered Oncotype test. I was concerned about treatment starting as soon as possible and asked about starting Tomoxifen and was told not until after Chemo was ruled out. Received Onco score of 18 emailed to me after hours on Friday, Feb. 6th with the message "chemo is option but benefits uncertain, will schedule to meet next week" no other info. Didn't get to meet until yesterday Feb. 14th and still don't have any idea what to do. 12% recurrance rate, reduced to 10% if switch to AI. MO said chemo benefits uncertain, but if I want to do it would be okay and would be T/C x4 with MAYBE a 2-3% additional benefit. I addressed some concerns about the side effects and then he said okay not to do. Ugh. I asked if this could be reviewed by the board of Onocolgists at hospital and he agreed to try.
Don't want to make the wrong choice but the info I have doesn't seem to make the choice clear. Is this normal? Not sure what other questions I should be asking to get answers to help with decision. I have learned more on this board than from my doctors. (i.e. I didn't know ovaries could be shut down medically with out removing - and MO didn't even mention it to me just surgery to remove them - I mentioned it after reading it on here)
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Daisy, we were in the Mesa area. It actually rained a couple days (which the Arizona people were thrilled about), but got nice, mild, sunny days on both ends of our trip. A nice break from all the hats/gloves/boots/coats & other winter paraphernalia!
Beach, of course we are not doctors, but you will want to get the show on the road. PRESS your doctor to get that second opinion taken care of. You may have to be a call every day, or go sit in the office, pest! What are your stats? Are you IIA or IIB? Node negative or positive? What grade was your tumor? How estrogen positive are you? And what about the PR.....positive (how much?) or negative? I am assuming you are HER2 negative or they should be pushing chemo. What is your age? When you are stage II, all those factors should weigh into your chemo/no chemo decision along with the Oncotype score.
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Thanks everyone for your good wishes. Today is the first day in four weeks that I haven't been to the hospital
kept myself busy by starting to redecorate my daughter's bedroom. Was great to be busy as makes me feel normal and even forget breast cancer for a while. I feel absolutely fine and full of energy. These treatments we get are designed to 'cure us' and we have to believe that we are cured. I believe we have to live each day the best we can, do the best we can health-wise and just keep busy 0 -
BeachbumNJ, I was in the exact same dilemma. Our dx is similar except I had one positive node and I am post menopausal. My oncotype score and recurrence percentage are the same as you: 18 and 12%. MO gave me information about a trial that I qualified for where a computer would randomly choose chemo or no chemo. All treatments would be standard care, in other words, no experimental drugs, just usual chemo treatment. I knew from the time the BC was discovered that I wanted to be aggressive. But the risk to benefit ratio was iffy and Onco score was calculated on no node involvement.
I could not make up my mind. I really started changing my mind as soon as I thought I had a decision; over and over again. (Also being 99% ER+ and 90%PR+ hormone therapy should be very effective for me - and for some that is enough tx.)
So I left it to chance and the computer chose chemo. I honestly was relieved and hugged the trial nurse when she gave me the news. I was happy that the decision was made and I was relieved that it was chemo.
Yes, this decision is a difficult. Our intermediate Onco score really does not make it any easier. You can ask for further testing, such as a mammoprint. Or you can get a second opinion. There is time. (I did not start treatment until Week 11.). You can leave it to chance and flip a coin. Or you can keep researching (but no Dr. google) until you find the answer that is comfortable and appropriate for you.
Best wishes. This is the hardest part of this journey. I know you will be relieved once you reach your decision.
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Beach, I just noticed your stats in your signature line. Did you just add them or did I miss them before? One of the things that would flag me toward chemo is the ILC, which a sneakier cancer.
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Hi Ladies,
I have posted this in a few threads to raise awareness of this petition, as I think it's an important cause to all of us. But response has been slow and has basically stalled. I am wondering if many people are not seeing it, so I am now posting it in some of the active threads. I hope you don't mind me doing this. If so, I will delete it.
Some of you might be familiar with Ann Silberman's great blog "Breast cancer...but doctor I hate pink", which has chronicled her journey from diagnosis to metastasis. I know many of us share her concern that Pinktober madness does not necessarily help towards BC research for a cure. She has started a change.org petition requesting that more fundraising dollars be allocated to finding a cure rather than just raising awareness. I am posting the link here, hoping that we all can support this cause, by signing the petition and sharing on social media. Thank You !!
https://www.change.org/p/keep-a-breast-foundation-...;
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Deb - thanks for posting link. The issue of limited funding for stage IV is a topic that elevates my cortisol levels and blood pressure! I signed up and did a bit more. Best wishes to you. Hugs
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Thank you everyone.
ruthbru: Sorry I am learning how to use the forum and noticed my stats didn't show and corrected it. I am concerned about the ILC also. BS told me 1 - 2% risk for other breast, but MO said 3 - 4%. I was diligent about my mammo, went every year for 10 years. This cancer did not show up on mammo, this was only caught by accident when they did MRI for lump on right which was benign. My biopsy results says I am 90% ER+ and 60-90% PR+. I just turned 50 and aside from BC and a little extra weight am healthy. I wish I had found this site prior to surgery, I have learned so much here.
Sweethope: I made quite a few calls today to try and get second opinions, but with the 18 Onco I am worried I will get the same opinions. I really didn't want to have to make this choice, keep second guessing myself. Don't want to have regrets, but with breast cancer there are no guarantees any choice is the right one, just gotta pick the one I can live with. Was told no to Mammoprint from MO, he said wouldn't help.
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Beach - no choice about BC is easy. But whatever your choice is, we are going to be here to support you. Hugs, Nisa
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Deb, thanks for all you're doing to get that petition going.
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BeachbumNJ, I have a similar diagnosis to yours. However, there is a key difference - your cancer's grade is 2 (and my slow growing tumor spread to my nodes...). That means that your cancer is slightly more aggressive than mine. My OncotypeDX was 9. This is key because I was advised not to do chemo because my non-aggressive lobular might not respond well to chemo. Chemo is generally more effective against quickly dividing cells - do you know your ki rate?
I have been treated with Tamoxifen, Lupron, Zometa, and Palbociclib (for 6 months only). I have been having monthly Lupron shots to shut down my ovaries. (Started with chemical ovarian suppression to make sure that I could handle the SE of menopause.) For the most effective shut down of estrogen, I will have my ovaries removed in March and start taking the AI Exemestane. The SOFT trial results indicate that this is the most effective approach for me, per my oncologist.
I think that there are many choices to make and no clearcut answers with some cancers. Lobular is tricky. It is lumped with Ductal hormone positive cancers; however, it often responds differently to treatment. There is limited research on Lobular. Regardless, your oncologist should provide you with several options and his/her recommendation, as well as reasons.
You are smart to ask for the tumor board review. I would also get a second opinion, to be able to speak with another oncologist and have more questions answered. I received 2 different opinions from 2 different tumor boards. In the final analysis, you will have to make the decision. Getting answers to your questions from professionals will help. This is the most difficult time emotionally. It will get easier!
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Ruthbru, I wish that I could join my husband in Tempe on his next trip... more snow tomorrow... and a big storm again on the weekend. Hope your snow is melting.
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Ruthbru, Good catch. I did not notice the ILC. That does make a difference.
Happy Mardi Gras to everyone.
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Just got email from MO. He said strong consensus from Oncology colleagues that chemo doesn't add much and they recommend hormonal therapy. Tomoxifen w/ovary suppression and then A/I after removal.
daisylover: I am still going to get the second opinion from another hospital. I was told this was slow growing even though Grade 2, so I am asking more questions. Ki67 on biopsy shows 40-50% but nothing is reported on my surgical pathology report. (before biopsy was told 7 tumors, largest at 1.9 cm, but after surgery only 5, largest at 3.2 cm) so not sure what biospy Ki67 is match to.
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Beach, in the end I think you will have to go with the decision that gives you the most peace of mind. Will you be able to let it go if you don't do chemo?
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ruthbru: That is what I am struggling with. I am not sure. But also very concerned about doing chemo if not really giving benefit.
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Nisa and Hopeful: Thanks for your support. Unfortunately the mods says it's against the rules to post in multiple threads so they have deleted my posts. So I guess more people on BCO will not become aware of it.
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Beachbum, one thing to remember is that you really don't know, one way or the other, what the chemo's effect is. Some people say 'well, I'd want to know that I did everything I could, so that if it recurs I won't blame myself' and I think that's assuming that the chemo actually had an effect. If you decide against chemo, I think it's important to know and remind oneself that doing chemo in some cases is just as much of a gamble as not doing it, if that makes sense.
I do think you'd want to verify what your Ki-67 was on the surgical pathology. It sounds to me as though you need more solid (or more complete) information and more time with your MO. Sometimes, too, it helps to just give yourself a break from trying to make a decision, whether it's for a few days or whatever.
Good luck - as a libra who is seriously decision-phobic, I really feel for the position you're in.
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Deb - Mods have a hard job. I'm spreading the word via FB. I am supporting the concept of increasing funding for stage IV research and not necessarily the person at the helm of this project as I have not seen what she does or plans to do with our donations. Nonetheless, the effort is admirable and deserves attention. Thanks for doing your share.
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Nisa, thanks for spreading the word. However, just to clarify, you do not have to make a donation on the link I posted. It's just a petition that you sign. She is not raising funds, she is trying to get a petition signed to present to the big fundraising entities like Komen, that they use more of the funds that they collect towards research for a cure.
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I am sorry, I did not mean you did anything wrong. A link asking for donations is what shows up after you sign the petition. It is almost always like that with Change.org. I'm fine with people asking for money. And I often give a little with no questions asked. A clarification of how it will be used and what the plan is usually gets me to give more. Hugs
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beachbum, I'm facing a similar decision. Our stats are the same except I had IDC. Oncotype 15. Onc says no chemo, hormone suppression only. I'm terrified not to have chemo but terrified to have it. Can't win.
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Hopeful8201: I am also a Libra and am terrified to make the wrong choice,I hate that this disease doesn't give us clear right/wrong answers. I second guess myself all the time so I know I will be beating myself up either way. I have asked my MO for the Ki-67 information, and have the first of two second opinions tomorrow. Hopefully that will help.
Shelleym1: I understand. This is a horrible decision and I hope we can both make the best decision for us and have no regrets.
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Shelleym1 and BeachbumNJ: I'm in a similar situation. Oncotype 16. Meeting w/ the MO this Friday to see her recommendation although I think it will be no chemo. I'm grade 1, so that is slow growing and from everything I've read, chemo isn't as effective on slow growing cancers. The wild card is that I actually had a second breast cancer in my left breast (thought I was just having prophylactic mastectomy in that breast, but post op pathology showed cancer there too), so I don't know if that will change anything with the recommendation. Was hoping for a really low Onco score so I could have a lot of confidence about no chemo!
Good luck with your decisions...it's tough!
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RuthBru...I read your posts faithfully. You appear extremely well-informed.
I'm curious about something: My ER is 90% but PR approx. 5%.
Feedback appreciated, and love your positive attitude!
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Thanks, jilly. I am a teacher, so research (and passing along what I learn) is in my blood.....which can be good, or drive one crazy!
The higher both your ER & PR are, the more effective anti-hormonals seem to be ( although they don't really know how the PR works into things yet). I was only mildly estrogen positive & PR negative. For that reason, plus the fact that I had a grade 3, big aggressive tumor which I found myself 6 months after a clear mammo, I did do 4 rounds of chemo followed by the 5 years of Arimidex. They didn't offer the Oncotype 8 years ago, but for my stats I think chemo was a smart thing to do no matter what number the Oncotype would have shown.
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fralaliso,
My BMX results showed cancer in my prophylactic breast as well. My recommendations for treatment did not change. No chemo. You may not get a different opinion. Once you make the decision, you will feel much more relaxed.
Hope you hear soon.
Beachbum and Shelley,
Hope you are able to decide soon - moving on will help you to embrace your decision. Best Wishes
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Shelley and Beachbum, just remember that chemo carries no guarantee - and I mean that in a rather neutral sense. We can, unfortunately, have a recurrence regardless of whether we do chemo or not. I know that you both know that but it's easy to lose sight of in the strain of trying to discern the best choice.
The Oncotype can help us figure the likelihood of recurrence but it's not a crystal ball. (If it were, it would cost even more.)
I wish you both expert, caring guidance as you grapple with this.0 -
And I have to add that chemo can also be dangerous ... I was prescribed 6 sessions of chemo. After the second session, I got pneumonia and almost died. Managed to finish the other 4 sessions and two weeks later, had a pulmonary embolism which almost killed me. I don't regret doing the chemo at all, but I was one of the so-called 10% that win the embolism lottery and didn't die from it. We have to weigh so many decisions!
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I too enjoy Ruth's posts!
SoLinda I am so sorry you had such a hard time with chemo.
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