Suggestions Please
I had a bilateral mastectomy including immediate reconstruction with tissue expanders. When this began, I was told I would need no chemo and no radiation but would need hormone therapy. 48 hours ago I received my oncotype DX results. Higher than expected--put me at high end of intermediate. Now the recommendation is chemo. I am in shock. My little sister just finished 2 rounds of chemo and will begin radiation. She had horrible horrible side effects and hair loss. The choice is mine---I can still opt for Tamoxifen however, chemo is recommendation. The onco test gave me 20% chance of distal recurrence with Tamoxifen and 12% chance with chemo. I take into account my sisters experience--weighs heavily in my decision. I am also not satisfied with the 12% with chemo--and no guarantees of no recurrence--hair loss guaranteed though. I am seriously leaning toward Tamoxifen treatment and NO chemo. Please---any suggestions. Has anyone else been faced with this decision and chose Tamoxifen. Any info would be appreciated.
Comments
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Personally, if my MO suggested I do the chemo, I would do it. My Oncotype score was 16. My MO was 90% sure I would need chemo, but then was at first 50/50 because of the low score. I decided to go ahead with it. Anything to up my odds of not having a recurrence I will do. She agreed. She said if it were her, she would do it to. She also has me doing "only" 4 rounds of TC. She said if it were a secondary cancer causing chemo or heart damaging chemo, she would recommend I skip it all together. Everybody's chemo experience is different and chemo regimes are different. I had my first treatment 8 days ago, and relatively few SE. A lot of achiness, some bone pain (got that under control with med) no nausea or vomiting, a little tired, but I wouldn't say I'm fatigued...
Ask you MO what chemo he/she recommends, how many rounds, etc.
I felt that I had one chance, at the beginning of this awful journey to his this cancer hard, so I'm going at it full force. That's what I need to do psychologically to move forward and through it. -
Sorry for the typos. It's my iPad
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luve2runn, when I first learned that I had BC the first words out of my mouth were "I'm not doing chemo" This was based on my Mother's reaction a long long time ago. Luckily, I did not need it. After finishing surgery and radiation I will do antihormonals for 5 years. After reading the boards, I have come to understand that it is a short period of time compared to the rest of your life. I would do it now if recommended. If you are worried about your hair look into Penguin Caps. on the board, They can sometimes reduce hair loss. I am sorry you have to go through this. You could get a second opinion, but even now, I have lingering fears of relapsing and my prognosis is very good, so I'm glad that I did everything that I could. I initially said no to radiation too, but am glad that I did it. .I wish you peace of mind with your decision .
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luve2runn, Both my BS and my MO recommended chemo for me because I, too, had a positive lymph node. I agreed with them because I wanted to do all I could to prevent a recurrence. For me, chemo was not so bad. The side effects were controllable with meds and there were periods between rounds of chemo when I felt fine. I am sorry that your sister had a bad experience with chemo, but everyone reacts differently. As for losing my hair, of course, I disliked it, but it does grow back.
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Definitely check out the cold caps thread. I bumped it for you so it is now in the active topics list.
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I opted for chemo. It was four months out of my life. It was difficult, but I worked as an elementary teacher the whole time. I did lose my hair...it was a bummer, but it is back. Before I was diagnosed, I would have said that I would play the odds but once I knew I had cancer cells in my body, I was willing to do anything, even if the improved odds were small. I was 43 with two girls who need me. I wanted to do all I could, so I could look back with no regrets. It's a personal decision , of course. As for the cold caps, my onco strongly recommended I not use them. Again, a personal decision, but she asked why I would not want the chemo to course through my entire body, including my brain tissue. I HATED it when people told me, "It's only hair", when I lost mine. I finally asked someone if they wanted to shave their hair with me since it was no big deal.
. Hair loss is hard emotionally. It does come back, though. I found a human hair wig on Ebay, of all places. My stylist cut and colored my existing hair to match the wig. When I started wearing the wig, no one knew. I would encourage to not let hair be your determining factor. Discuss the pros and cons with your onco and make the best decision for your health. Best wishes with your decision, whatever it may be -
Good post demiller4.
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Do you know what your ER percentage is? The higher it is the more Tamoxifen may help but if it is low Tamoxifen may not be as effective.
In your situation, with a positive node, I would probably do the chemo but get different opinions as some courses are shorter than others.
I have seen people here with lesser cancers than yours progress to stage 4, I'm sad to say.
I did chemo and the hardest part was waiting for my hair to grow back. -
Luve2runn - with a positive node, my suggestion is to do chemo. It's not a walk in the park, but you can get through it. There is a pill for every side effect except hair loss and fatigue, really there is. I know that sounds crazy, but it's true. I felt like my body was a chemical waste dump while I was doing chemo. But I cried tears of joy when my PET scan showed me to be cancer-free.
I don't work so I didn't have that stress. But I had treatments on Wednesday and my DH and I went out to dinner every Friday night except once when HE was not feeling well.
Remember that you can start chemo and if it's just too unbearable, you can stop. It's always your decision.
Hugs,
Michelle
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My erp is 90%. I checked out the polar caps and printed out info. Thank you soo much for that link and suggestion. I appreciate your feedback and everyone elses. I am really torn. I was told that after this bilateral mastectomy I would not need chemo or radiation. Oncotype test came back with surprising #'s. My onco says my case is complicating because everything about it falls on the border and makes things somewhat difficult. However, before the oncotype results the recommended tx would have been tamox. My node status is weird. I was told it shows something but is considered negative--so, the positive node was a mis-post I need to fix. So, that also plays a part in my decision.
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Luve
when I was dx- we all thought no chemo--it was simple-- lumpectomy and radiation and some sort of hormonals.... the oncotype came back in the intermediate range--- My BS and MO, when asked what they would recommend if I was their sister, both said, chemo. I had no nodes--but there I was.
So, I did 4 rounds over 8 weeks--- worked through most of it--- and I will tell you, it was indeed all about the hair....I was really angry that losing my hair would really be the indicator that I was a cancer patient. I found a hairdresser who did human hair wigs, had them buzz my beautiful thick hair, then put the wig on and wore it for the next 6 months..... did not love it, but it really worked---I did not tell many people about my situation- and the wigs helped me keep it under wraps...
No one can tell you how you will react to chemo-you will only know if you go..... your sister's experience is hers, you may have a different one. Not trying to tell you you should or shouldn't.. we all know what a hard decision this is. But know that we get it on the hair----
I had one of those cases where things were in the gray area all around--- but for me, I knew that if I did not do chemo I would likely always wonder. I was in pretty good health going in and seemed to tolerate it well--but that is not the experience that everyone has.....
In retrospect, the hair thing was not such a big deal, but at the time, it really was the one side effect I had that I really hated and was the most upset about. For what it is worth, I have a full head of beautiful hair again and I had fun with it as it grew out in the most amazing head of curls.....
good luck-we know this is tough--- but if you sit with all the information, the right answer will definitely come....
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You've gotten some great advice here. It is a tough time--knowing that your decisions may affect the rest of your life. Of course, no one can tell you what to do, just tell you what we did and why, or what we think we'd do given your dx. I say do the chemo. I know it's scary saying yes to something you know is going to be hard, but you also don't know yet just how strong you are.
I thought the hair loss would be really awful, and y'know what? I was really okay with it. I had my days (I had to do 2 rounds of chemo, so I lost it twice and I'm still bald now) where I (and still am) sick of it, but it is temporary. I mean, you may not feel great (but hey, the meds they gave me made chemo really not that awful--again, everyone's experience is different), so why not go for it and not look great now either.
Get it over with, and then come back sexier than ever. That's my plan. I'm 9 months out from dx, 2 mos out from last chemo treatment, and I've got new boobs and 3 new sexy bras...and a little fuzz on my head. I'm on my way back to sexy! I have 2 friends with alopecia, and it really helped me to remember that this isn't a forever thing with my hair. It will come back. It's been humbling, but not the horror story I thought it would be.
Good luck. Whatever you decide, we're here to support you through!
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I totally understand your dilemma. The other thing that might help in your decision is to get a second opinion. Or, I have read some posters say they had their case looked at by the 'tumour board' at their cancer centre. Yes, definitely get another opinion.
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luve2runn, if you're at the high end of intermediate, that's high enough that most women in your situation probably would do chemo. Have you checked the Oncotype-DX "Results Interpretation" information here on BCO? (On the black bar at the very top of the page... click on Symptoms & Diagnosis. Then, in that search box, put in Oncotype DX, and it will bring up some really helpful information.)
There are also threads here called Oncotype-DX roll calls, where women have indicated what they chose to do based on their Oncotype scores. Use the search box for the Discussion Boards to the upper right and maybe search for "roll call" to find those threads.
Lastly, how about a second opinion? You don't need to switch oncs, but maybe just get an opinion for a 2nd one and even a 3rd one, to help you make such a big decision.
So sorry you've had this happen, but it's not uncommon, and far better to get the complete picture re. future risk so that you can make an informed decision. (((Hugs))), and let us know what you decide. Deanna
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I can't thank you enough for your reply. Everything about my results puts my stuff on the borderline of everything. Even my onco said that my case is difficult because of that. I am so glad to hear that my "hair concern" isn't just vanity. And, thank you for telling me to sit with this for a bit. I do--this is just so much at the moment and overwhelming. Thank you for your input and support and I wish you a year of health and happiness!
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With the difference of just 8% chance better that is a very hard decision! I can't say which way I would go.
If you do go with chemo keep in touch so that we can advise with side effect treatment. Proper treatment of side effects from chemo can mean the difference of making it to work or not. There are a lot of oncs that do not treat side effects very much.
My hair grew back thicker. Some insurance companies cover hair prosthesis.
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I can't thank everyone enough for taking the time to reply to my post. These last couple of days have wreaked some havoc on my brain. It means alot to hear others thoughts, opinions, suggestions, and words of support. May I say, I wish cancer would get cancer and die! However, here we are--supporting those we don't know. That is a gift that I hope that I can pass on when things settle. I read every ones posts and am grateful for all of your feedback!
I wish everyone a New Year filled with much Happiness & Health!!!
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Thank you for your response. That 8% is really hard for me. I wish there was more of a difference. Yes, I will keep you posted. My head and 1/2 of my gut is shouting Tamox but I just want to feel like I am making a wise decision that I am comfortable with. I also was told that if I do choose Tamox that cancer treatment and recommendations are always in the works if, God forbid, something "turns up" years down the road. Thank you for taking the time to provide me with feedback. I am grateful for every ones support!
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If the difference were 1% I'd do it. I left everything in the hands of the experts. I totally trusted the center I went to - Dana Farber. I was slated for a lumpectomy and the day before surgery they changed it to mastectomy because final test resuts they had just received indicated that was the better option.
I had neoadjuvant chemo of herceptin and navelbine, mastectomy, A/C, 33 courses of radiation, an additional year of herceptin, 6 years of arimidex, a prophylactic mastectomy of the second breast, and finally reconstruction. I breezed through all of it because my goal was to live and I was willing to do anything I needed to in order to get past the "temporary inconvenience" of breast cancer. (Plus they had great meds to help me out!) I didn't miss a day of work when I was on chemo. I wouldn't change any of it, if I had to do it all over again. As I once said, I would crawl on my hands and knees to get some treatment if I knew that treatment would increase my odds of living.
I'm 8 years out and grateful for every minute of treatment I received. Would I do the chemo if my onc suggested itt? You betcha.
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luve2runn ~ Perhaps I'm not 100% clear on the 8% difference, but I guess I'm not seeing your situation the way you are. If your onc told you you have a 20% chance of a recurrence with Tamox alone, that means 20 out of 100 women would have a distant recurrence. That's pretty significant, isn't it?! And are they saying that drops to 12% then if you add in chemo?
At the risk of sounding a bit harsh, which I don't mean to be, especially because I know you're still in shock about this, as I was when it happened to me... but it seems to me that you might be minimizing what that 8% represents, which (if I'm understanding the way you've presented the stats) is that by doing chemo for a few weeks, an additional 8 women out of 100 will not face a distant recurrence, which means a lifetime of chemotherapy and other treatments.
I agree that you need to take your time making a decision about this, and I strongly think a 2nd and even a 3rd opinion might be very helpful. Deanna
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The percent is based on my oncotype results. My score was 30. Puts me at high end of intermediate on the graph. Results say that I have 20% chance of possible distal recurrence on Tamox only. Not even guaranteed that there will be recurrence. 12% possible chance of distal recurrence with chemo followed by Tamox. Not guaranteed that there will NOT be recurrence with the chemo followed by Tamox. I wish that the 8% was a higher # and then I would have a easier time with this. 8% doesn't sell me on the chemo. I think that also, before the ocnotype results, I was told that it looked very much like Tamox was going to be the treatment. It took me a while to even get comfortable with the idea of the Tamox. The side effects turned me off and scared me. I finally get to the point of accepting the Tamox and then, "Bam!", it's now chemo.
( My brain is on overload with all of this. Thank you for your feedback. Blunt is good. -
Okay, you asked for blunt. Distant recurrence means that you will have metastatic breast cancer. While women (and some men) are doing better all the time and living longer with mets, it is a lifelong battle. It's not like oh this next time I'll try chemo. It would mean that it has spread to other parts of your body...your bones, your organs. (Someone correct me if I'm wrong here) No one has a crystal ball, but I thought of my Facebook friends. Out of 100 friends..way 12 could get it. Now, add 8 more friends. Which friends? I think that's what Deanna was getting at above.
I'm pretty sure that a score of 30 would get you a recommendation for chemo from most docs. Get a second opinion, and then you may be convinced to trust that these docs are telling you this for a reason. (All that said, some people decide not to do chemo for other reasons...and we'll respect your decision. We just want to make sure that you have the whole picture before you make any decisions.)
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I am actually upset that my treatment was changed to no chemo. I want to nuke it with everything there is. I can understand not wanting to do it, but want to or not, I believe that 8% or 80% makes no differance, it is still that much more of a chance that it wont come back.
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I hope my last post came across with all the love and best wishes I intended.
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My score was low but my onco told me the benefit of chemo has to be cut in half for the risks of chemo right off the bat as far he is concerned. I think I would want to get more info before rushing into chemo myself.
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My Oncotype type score came in at 16, with Tamox that's a 90% chance of it not recurring. However, how does that Oncotype test know that there are no stray cancer cells in my body right now? That part I don't get, regarding that test. And I had negative nodes and no vascular invasion. It was a bit of a tough call deciding to do chemo. I asked my MO if I did the chemo, would it bump it up to 95-98% chance? She said there's no way to know for sure, but would expect to add 1-4% to that 90 if I did chemo. And she advised me that she would do it herself if she were me. And I agreed. Funny, on our way home that day in the car, my husband and I were talking back and forth about it and I asked him his opinion (he had cancer 4 years ago and is fine) and he said, "honey, I'd cut off my left nut for 2%" and he's been on both sides now....
If I were older, say over 65-68 and my Oncotype score was 16, I might skip the chemo, maybe, but I'm a type A person....
But at 43, with 3 kids (16,9,7) a loving husband and marriage, a great support system, I'd do anything to boost my odds and have that peace of mind, even for a few percentage points. -
It did.
No worries. The "30" all comes from the oncotype test results. Plus, the lines separating the 3 areas (low-intermediate-high) are not definite. That means the lines could be a little to the left or right. So, it could throw me into the high risk or lower intermediate risk. When looking at the graphs it is much easier to understand but, doesn't always make the decision easy. Thank you for your feedback! -
Thank you for that response. I am not trying to cheat myself out of any life by any means. The oncotype DX test result was the deciding factor in my treatment. If this test had not been done, my onco had the tamox as the treatment. He did warn me that his decision could be affected by the test results. And, they were. Thank you for your feedback.
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I was 45 last year when I was DX. Oncotype was 17 but I had angiolymphatic invasion and clear nodes. My son was only 4....I got to opinions. One said no chemo and the other said I may benefit from chemo. I was concerned about angiolymphatic invasion.....making the decision on the chemo was worse than deciding on a BMX! I agonized over it but chose the chemo.
Many people do very well through chemo...>I was one of them. I felt pretty good and did an hour of exercise 5 days a week all through chemo....never skipped a day. I used cold caps to keep my hair. My son didn't even know I did chemo...he still doesn't know. I finished chemo in May and went back to teaching my aerobics classes in June. My class never knew I had BC or did chemo. I never needed one pill for nausea through all 4 rounds of TC. Not everyone has horrible side effects.
I was glad there was chemo as an option.....I am glad I did it. No regrets. I am on tamoxifen now and glad I have that as an option too.
This is a very personal decision but in the end you need to make a decision that YOU can live with without regret. Hugs
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Luve2run...I didn't mean to infer that you or anyone with BC would try to cheat yourself out of life. I'm sorry if you took it that way... I just fine it helpful to hear others thought processes about how they came to have lumpectomies, BMX, UMX, chemo, no chemo, etc.
My MO told me that with a score of 16 (grey area) I wasn't wrong to decide not to do chemo, but, she couldn't say with certainty that I would be right.
I've had my first of 4 TC's treatments last Thursday the 29th. It's not pleasant, but definitely doable. It helped me to read the threads of women that were think into the process...like Chemo november and chemo December, so I could see what the potential SE were.
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