Hello, everyone; I am just dropping in to let you know that my Bone Scan was clear, so my oncologist is not likely to order another one. She felt that the hospital where I had it done has been exaggerating the "possible" metastases bit. I also got the results of my Vit. D test this a.m., and they are good, so was told not to increase my intake. It has been hard to deal with not consuming anything with calcium in it, and that is a long list, but I will do anything to get the blood calcium levels down. One thing I realized yesterday is that I finally am back to the strength level I was at in the spring of 2017. I can go up and down stairs without having to stop and rest, and no longer ask my husband to carry stuff for me, unless it is really heavy. Yesterday he commented on me taking five water bottles (3 cups each) up at one time.

In case I don't make it back on before Xmas, just want to wish everyone Happy Holidays and a Great New Year. We have a lot of coming and going here for most of this month.

Helenlouise

Thank you. 

Pebblesv

Thank you, when I made a list of pros and cons all I got were mostly cons. More so after the oncologist said only a 30% chance of reducing the risk of reoccurrence. I probably stand a better chance making lifestyle changes. I definetly need a fix on the right and I still feel he put too big implants so I hope they fix it up. I'm not hoping for miracles just reduce the freak show on my chest that exists now.

Rosebella 

Your lucky your oncologist is seeing you every so often. Mine was one and done. I no longer see her ever again. Apparantly that's the thing they do here, one your treatments are over (or in my case choose no more) your file is closed.

It breaks my heart how ostracized I feel by the medical community because I am not following conventional treatment. Pretty much abandoned really but It is what it is.

Blessed be all.

Amyisstrong

Some of us are not as strong as you, after damn over  a decade of life ruining chronic illness, just to find a solution and develop another chronic illness bandbox then cancer sometimes we just have enough. I don't want to go through 5 years of side effects and there will be side effects cause even if the pill doesn't cause anything too severe it's going to aggravate oneof my chronic illnesses that is GI related (all medications I take cause issues which is why i try to avoid taking any) to the point where I will kill myself just to stop the constant suffering.

I don't think diet and exercise is a miracle cure but neither is a pill that only gives me a 30% chance of not having a reoccurance that will make me so sick I will wish I was dead anyways. Every person on here is different, their experiences and lifestyles are different,how they deal with things is different. You got through it, your life is better. You are very lucky.

I'm glad that these treatments are available for you and others and that they can be successful but it's not for everybody. Not all of us will get over it if it's going to cause so many issues we can't even get through it. I'm one of the people who's just had too much and can't take anymore and that includes the misery that taking tamoxifen for five years will give me. If I get sick again.i get sick again there are no guarantees pill or not.

Thank you

AmyIsStrong - thank you for posting a survivor story, and that you went through everything and came out fine on the other side. It's very encouraging to hear from others who have gotten through this with no recurrence!

Jadedjo - I think you're doing the right thing and making the right choice for you and I'm here supporting you and cheering you on with the diet and lifestyle changes!

I heard someone say that we're all snowflakes and different and have to figure out what works for us. I believe that.

For me, I go back and forth, seem to change my mind every day re: tamoxifen. I haven't started yet as I was going through the radiation treatment and radiologist didn't want me to take tamoxifen at the same time even though onc said it was OK. So I got a temporary reprieve. But I just got done with radiation treatment and now tamoxifen is supposed to be the next step! So... 😮

I know you are not feeling any silver linings in this but I thought of one for you - being on your own, you have full independence to make the decision that you believe is right for you and no one is holding you back from that. I might actually decide to take my chances with diet and exercise and not take tamoxifen if it was just me and I didn't have any pressure from my family!

I've read enough now to really believe that diet and exercise go an incredibly long way towards healing, and I'm so scared of the potential side effects of tamoxifen. Plus we did the surgery and all the studies and reading say that's the most curative thing. Everything else is just odds after that. But since my oncotype score means tamoxifen was my ticket out of chemo, I KNOW there would be hell to pay if I told my parents, my sister, my husband that I was going to forego tamoxifen and try a natural route. So I actually feel my hands are tied a little bit in that, and the best I can do is figure out what I can do to avoid or minimize the potential SEs as much as possible. You - your hands are free, and that's a huge thing.

Sending hugs and healing and hope that we all get through this with our chosen paths

Jadedjo - It's so interesting that you say your decision might be different if you had someone... my family factors hugely into my decision-making process, which I know is a positive and a negative all in one. Funny how we see this differently, totally true! A little bit of grass is greener on both sides.

I still have that fear of - what if I took the tamoxifen to placate / please my family, and then ended up with the much worse endometrial cancer that could have been avoided entirely if I just didn't take tamoxifen? Trying not to go there but I have thoughts like that sometimes. Which is why I say that if it were entirely up to me, I wouldn't risk it, and take my chance on diet and lifestyle to keep the breast cancer from coming back or metastasizing.

Then when I try to steel myself up to take tamoxifen, I have to think well the risk of the endometrial cancer is ridiculously low and probably the risk of the current cancer coming back greater, so I'll take the tamoxifen to reduce that risk...

Honestly, starting this process, it's kind of amazed me (not in a good way) that the treatment for a very beatable breast cancer with extremely high survival odds (90%+!) is so debilitating. For what's supposed to be a slow growing, very beatable cancer, women have to go through surgery, radiation, around 6 MONTHS of chemotherapy and 5-10 YEARS of hormone therapy. All of it comes with life-altering side effects. Much of it changes a woman's identity. In the meantime, a work colleague of mine had prostate cancer and he did surgery, then monitors his blood levels every few months. That's it. No chemo. No radiation. No pill for 5-10 years. My other friend got a recurrence of a much more aggressive melanoma in his ear, and while he had to go through multiple surgeries to remove it (because they kept not getting clear margins) and reconstruction on his ear, there's also no follow up for him. No chemo. No radiation. No pill for multiple years. Just see the dermatologist every few months to make sure it's not back. Sadly, my mother-in-law had stage 4 lung cancer - but the treatment for that was 4 sessions of chemo. It's just weird to me that treatment for Stage 4 lung cancer is about 2 months of chemo, while treatment for Stage 1-2 breast cancer is 6 months of chemo! Plus surgery. Plus radiation. Plus hormone therapy. It's not like the side effects of chemo are any less - there's still neuropathy and losing hair and damage to heart and lungs etc. I guess that's why they've come up with hormone therapy as an alternative to chemo for many? It seems like the medical community is starting to realize they've over-treated women for breast cancer for years, and they are pulling back some now, but who knows, maybe 10 years from now they will actually prescribe diet and exercise and not all this crazy stuff we are told to go through!

OK, that's my rant. On another side of things where we feel opposite, I know you mentioned you feel left behind a bit with the doctor's not wanting to follow up since you said no to chemo. I'm so sorry they did that to you and for your sake, wish they'd follow up just a little bit with you. For me however, I prefer less follow up. I want to be done and set free on my own after this surgery and radiation treatment is finished, come back in a year for simple tests just to show I'm in the clear, and that's it! I don't want to have to meet with the doctors every 3 months. I'm so afraid that when I meet with the oncologist this Friday he's going to want to do all these scans again (and if so, I'm going to ask why when I just had CT and bone scans a couple months ago), I think because there was cancer in my sentinel nodes they are going to want to do more scans more frequently and not give me a CHANCE to heal. So I don't know what I'm going to do if they want that, but in my opinion they are being TOO vigilant. I did the surgery, I did the radiation, I will take the tamoxifen, so I want to be left alone to manage this MY way and do the diet and exercise I know can make such a difference, and give me a year to do it and let my body heal!

Anyways, I do know I'm fortunate to have my husband (who juices for me!) and the little pup pups who help put this in perspective so much, and even my family even though it's pressure. And I can't even begin to understand what you're going through... so I just want you to know that in a way, you have me and all the other women in this community that you've been chatting with and we're there for you. I want you to survive, I want you to succeed with your chosen path of diet and exercise, I want you to get to the point where you can look back on this one day at one of the most challenging times of your life and say, "Wow, I persevered and beat that and came out OK."

We will keep one another posted on our respective paths! Your cheering section is here (plus Domino of course). Hugs and healing. And thank you for the well wishes for my path that will prob include tamoxifen. Fingers crossed for us both!

It’s our bodies, our lives and our decision how to or if we go through the entire prescribedprocess.

I am on the other side about treatment and meds. I had radiation and took Tamoxifen for 5 years. I had little problem with either one. There are women who suffered debilitating side effects from both but there are also many others who didn’t.

I was frankly afraid not to go the conventional route. To me it was like playing Russian roulette with my life. I never once considered doing otherwise. I am a poster person for worrying and I didn’t want to second guess myself or look back and wonder what if..

I am 7 years out last August. My BC was Stage 1b, Grade 1 IDC. I did have the Oncotype test because I had a micromet in my SN. My score was 11. No chemo as a result.

Good luck ladies!

Diane

Diane - thank you for sharing your story. As someone who is probably going to take tamoxifen, it's really encouraging to know that you got through it with little trouble. Do you have any advice on how to best avoid SE's? Did you do a hysterectomy or not? I know a lot of women do but that's not on the table for me unless there was a dire need, I really do not want to remove more of myself to get through this.

I had little trouble with radiation. I am worried about tamoxifen though. Any natural ways to avoid side effects? Diet? Exercise?

Thx much for your insight too!

I had 2 appts today back to back. One was a diagnostic mammogram taken on the affected side. Last one was taken prior to radiation 6 mos ago. The results today were good. I was so excited. Then, I went to see the MO. My original MO resigned right after I finished radiation. Right at the critical decision making time for anti hormonals. Since then, I've seen 2 different substitute MOs. All of them hit the drug issue trying to convince me to take them. Today was no different. I have a Masters degree in Public Health, but they still think they have to give me the same statistics everytime and explain what they mean. I'm sick of it. Everytime I see a doctor now, it ends up being a fight. I may not go back. It blew my day. I've been depressed ever since. Now I have to go do battle with the RO tomorrow. I had a whole list of things to check. That took about 5 minutes. Those questions were brushed off quickly. But, the next 15 minutes or more was spent rehashing the same info about drugs.

hi pebbles:

Sorry I haven’t responded til now. Thank you for the links! Yes I was very lucky. My Surgeon (30yrs in practice) told me that I didn’t need the oncotype test. She said with the testing I had done grade stage that she knew it would be very low. She said it’s a very expensive test and said my numbers would more than likely be very low. So she didn’t see the purpose of doing it. Yes I was very lucky. So far so good!

I’m trying to be very careful with my diet and trying to back off any controllable added stressors. Not always possible but I try. lol

On a side note....I did genetic testing because my maternal aunt had breast cancer dx two wks before I did my maternal gma had breast cancer twice and died from it I was all negative so it’s interesting how one can have so much cancer in their family and be negative on the gene testing I’m not complaining tho!😉🎄merry Christmas!

Thanks, Jon Girl.

Yes, the appt with my RO yesterday was very surprising, in a pleasant way. She listened and talked with me for a long time. I felt like I was chatting with a good friend. Funny too, because she and I got off to a rocky start. I stuck with her because everyone told me she was great. I also stayed because she knew things weren't right and she made an attempt to correct it. She has turned out to be my favorite. I'll stay with the group until they find a replacement for my original MO. But, I told my RO about what happened and I said I didn't want to go back. She talked me into going back and she helped me with what to say to get them to understand I've made up my mind not to do the drugs this time around.

I know you didn't do radiation. I was scared, but it turned out fine. I had the hypofractionated shortened course. I'm glad now that I did.

You have early stage BC but Grade 3 and the intermediate Oncotype score are concerning.

Idk if you are being naive but FYI I also had Stage 1(b) but I was Grade 1. I had a lumpectomy and 33 radiation treatments. My Oncotype score was 11. I took Tamoxifen for 5 years. I was 7 years out last August.

Healthy living is ideal and we should do that anyway but it’s not the only recipe to prevent a recurrence. There are countless women who lived the healthy lifestyle and still got BC to begin with.,

It’s your call but IMO you are playing Russian roulette relying on Tamoxifen and healthy living to keep a recurrence at bay. There are no guarantees of course but I never considered not doing radiation and my grade and Oncoscore were lower than yours.

Diane

Cat 5, I had clear borders, stage 1 no node involvement. Had oncotype of 27, which took everyone by surprise. Had lumpectomy and hypofractionated radiation after a breast reduction to reduce the risk of complications due to radiation. I skipped chemo and so far am not taking anti hormonals, and probably won't. But, I was told and have read that lumpectomy plus radiation is as effective as mastectomy at preventing recurrence (local). If you had a second opinion, sounds like you had some concerns. But not doing radiation is probably why the second doctor suggested mastectomy.

I never considered not doing radiation. But, I know most would probably say I'm nuts for not doing chemo and antihormonals with an Oncotype score of 27. Maybe I am nuts, but, this is my situation. There is still a chance they'll talk me into antihormonals. But, I'm at peace with not having the chemo. Not this time anyway.

Yes, I know your story Meow13.

Did you do radiation?

I asked if you did radiation. Then, I looked and saw that you did, Meow13.

thx sala! good luck to you sister.