TRIPLE POSITIVE GROUP

AngieB92...

Did you do any chemo other than Perjeta? Our stats are really close. I was considering asking to add it since I had to discontinue Taxol.

I had a super bad reaction to the Taxol and only got one infusion. Perjeta was taken off the table after my surgery as my MO did not feel my stats and the side effects warranted adding it at that time.

I am still doing Herceptin every 3 weeks and starting Tamoxfin this week.

Just curious...

Good Luck Angie!

AngieB92...Oh, I get get it, you did neo-adjunct chemo. Gotcha, that's the difference.

I was offered TCH-P prior to surgery but opted for surgery first. After surgery based on my tumor size the C and the P were deemed not necessary. I was scheduled for weekly Taxol but reacted badly so that got taken off the table. I am down to the Herceptin and Tamoxfin as treatment options right now.

I did not do any reconstruction so I don't know about that type of surgery but I did a BMX and it was not awful. One really super helpful thing my hubby did for me was to get me a small flashlight. I kept it near me at night. It was so much easier than trying to reach a light when I couldn't sleep.

I am sure you will do well!!

Hi Dragonslayer, this site is a little confusing until you know how to find your way around, but there's a wealth of information! You can browse topics related to hormone therapy (& side effects, & choosing to not take it) by going to the "menu" button at top right, then click "all topics", and under the heading "tests treatments and side effects" you'll find the topic "hormonal therapy, before during and after" (I'll attempt to share a link directly to that page:

https://community.breastcancer.org/forum/78

You can post your own new topic question ("start a new topic") to this area, or read thru the other topics posted to find others who are either declining hormonal therapy, thinking about doing so, or discussing side effects.

It's also helpful if you go into your profile, fill out your diagnosis and treatment info and set privacy to public, so that others can see your relevant info (like stage, HER2 status etc) to better assist you. (That's the part that shows up at the bottom of our posts) Good luck!

ingerp - thanks for that link, I've never seen it before. That is actually kind of promising for my 15 year survival rate, assuming I did it right.

Is there was a tool like this for recurrence rate?

Here is a better picture of the Perjeta results at the 6y mark. Since I am both hormone positive (HR-positive) and lymph node positive (LN-positive), this gives me hope.

"It's also information your MO should be able to provide."

He gave me a number when I first met him and it was probably based on experience but, I was looking for some sort of data or calculator. I'm a numbers person. 😁

I'll also ask him again, the first time I saw him was 2 days after my diagnosis so I was a lot overwhelmed. 😊

"There's this calculator for 5 year risk of breast cancer recurrence based on subtype and therapies done"

Thanks for the link, that's an interesting calculator, according to that if I do Chemo+radiation it cuts my 5 year risk in half. My MO, said I wouldn't need Radiation with a BMX, I'd go on Kadcyla after Surgery if I didn't have a CPR.

I want to ask him about that again. I think you can only do radiation once, so I wasn't sure if the smart move was to do Radiation even with the BMX or save it for a possible recurrence.

@LaughingGull -Those numbers look very promising. I will keep sending positive thoughts your way. Just out of curiosity what does the ITT line stand for?

"Take that calculator with a grain of salt"

Absolutely,

Well - I kinda like that calculator HeartShapedBox linked to - according to that my chance of reoccurrence in 5 years is something like 2.5%. I will also take that grain of salt.

I have a love/hate relationship with stats - my MO is not a big fan of them so the only stat he gave me was that without treatment after surgery my chance of reoccurrence/mets was around 20% - more toward mets because I had mastectomy which lowered my risk for local reoccurrence. Then every treatment I did reduced that risk till I was in the 90% for survival at 5 years. I was to do chemo, herceptin, tamoxifen. When chemo was taken off the table he did not even venture into statistics again. When I asked he said that the only stat I should worry about was the either/or - either it comes back or it doesn't. He said you really don't know which treatment is going to be the one that works or what combination is going to work. He went on to say that it really hits home when you have the same tumor presentation in two women, treat them exactly the same way, one responds the other doesn't. He really feels strongly that folks get caught up in the stats instead of living their lives. He has a point but I liked the stats when I lost one of my treatment options - it at least made me feel like I was not losing alot of %.

"I have a love/hate relationship with stats - my MO is not a big fan of them so the only stat he gave me was that without treatment after surgery my chance of reoccurrence/mets was around 20% - more toward mets because I had mastectomy which lowered my risk for local reoccurrence. Then every treatment I did reduced that risk till I was in the 90% for survival at 5 years."

My MO was basically the same, he said 20-25% without Hormone therapy, 10-15% with Hormone therapy but, I had asked long term not 5 years. I will have to clarify with him next time I see him if he meant 5 years or 10. I will also ask about what adding the BMX into the mix does for my longterm odds.

The ultimate downside for me (they don't see it that way) is that we don't know how much is IDC vs DCIS. According to 3 MOs and my BS my breast could be all DCIS with a little IDC or all IDC with a little DCIS (and anything in between). They treat as if it's the worst (all IDC) but, don't know so the odds they're giving me are worst case.

I hate not knowing what is really in there. All I know is that there's no mass (Mammo, Ultrasound, MRI and clinical exam). When I asked my BS he said that eventually the little pockets of IDC would grow and, link together to form a mass but, right now they're just small individual pockets.

Originally I was hoping for a Lumpectomy so I was OK with the neoadjuvant treatment now that I'm firm on BMX I wish I had insisted on surgery first.

Of course everything moved so fast I was very overwhelmed, biopsy 1/2, MRI 1/14, DX 1/20, Echo 1/29, Pet-CT 1/30, Port 1/31, 1st Chemo 2/5.

The 2 weeks from DX to Chemo was so filled with tests and, DR meetings (2 second opinions) I barely had time to think and absorb everything.

Ah well, nothing to do now but, hope and pray.

morrigan - Your plan was my original plan too but when I got a second opinion more options were offered. I always wanted surgery first because in my mind that gave me the biggest bang for my buck as far as survival rates. Plus I just wanted the cancer out of me. Downside is that I will never know if a certain treatment would have worked - the benefit of neo-adjunct treatment is seeing the chemo shrink the tumor/mass.

It is crazy the amount and weight of decisions we have to make in such a short period of time and then the endurance we have to have to get through treatments. It is no wonder some of us end up with PTSD after all this.

I try to rest in the knowledge that I made the best decisions I could and try to leave it behind me and move forward. Its hard for sure anyway we go.

Angelsgal-I had to skip a couple pages, but in case no one mentioned it, consider trying Cymbalta. My first oncologist had done research on breast cancer patients using it for joint pain from AIs. I take the lowest dose and it made a huge difference within 2 days. Since then my PCP said he prescribed it for a patient with back pain who told him it is the only thing that has worked for him. And I learned my sister-in-law takes a high dose for back pain and says it is the only thing that works for her and she will never quit. So...you might look into it. It helped immensely with my knee and hip pain when I stood up after I first started taking it.

Elaine there-funny you mentioned right side pain. I have an area on my right side in the area of my ribs that is painful. Has been for several years. It has been ultrasounded, ct scanned etc. Nothing shows. PCP thinks it is something nerve related from the surgeries. I was convinced he was wrong forever, but might be coming around lol. It is not a joint pain feel.

Bali was lovely. Such kind people. But oh my gosh....hot, hot hot. And humid, humid, humid. I carried a usb chargeable fan with me everywhere! And even that didn't help a lot. We couldn't lay out because the sun would feel like it was burning our skin. It was either in the water or under an umbrella. I think it must be because it is so close to the equator. It was an intense sun. I never had a vacation where I looked so bad the whole time lol. Gave up any semblance of facial makeup. It just melted. My adaptor broke and I just thought WTH. Doing my hair is a huge waste of time. So it was straight and pinned up the rest of the week. In the monkey temple, we were following all the rules to avoid antagonizing the monkeys. As we were walking, all of a sudden, I feel this thud on my back and shoulder. Froze in place. Monkey has leapt on. Proceeds to check my hair for insects, lol, sticks his hand on my hose and then swings off. I whip out the hand sanitizer and thank heavens he didn't scratch or bite me. The pictures my husband got are hysterical.

Morrigan and Laughing Gal- Here's my take on stats with health related things. You are either zero or 100 percent. Either you have it or you don't. Every time a doc threw a stat out there that was toward me being less than 5 or 10 percent that it would be anything, I ended up on the wrong side. In my interview with what turned out to be my first oncologist, he threw out a stat and I said don't bother with it, as I am on the wrong side. Later in the conversation, I said "what are the chances that..." He looked at me and said "I thought you didn't want statistics." I knew we would get along immediately.

I'm jealous of the Bali trip, it's on my To Do List. I'm supposed to go to Africa 8/14/21, keeping fingers crossed I get the OK.

@LaughingGull - Mentally I'm there, emotionally not so much. Maybe in a few more months I'll get to that point.

@FluffQueen - I hear you, even with stats that say 5-10%, I can still be in that 5 out of 100. Something I think I just need to learn to live with. I hope this will come further into my journey

Hi Ladies,

triple positive newbie here. ER+ > 90%. Will be starting paclitaxel and Herceptin on 3/3 (next week). Given that my ER+ is more than 90%, was discussing the option of having ovaries removed, I am 49 years old. Didn't get a positive response from my onc. Have any you done it to reduce estrogen levels? If so, did you do it before chemo starts? I will have chemo followed by radiotheraphy and only after that will start tamoxifen.

thanks in advance

Vijiya

Re: ovary removal....

I was 47 when I finished radiation and began ovulation suppression (Zoladex) + Aromasin (AI). My OB/GYN wasn't too keen on ovary removal because she says that women who keep their ovaries live longer. She prefers to remove ovaries "with problems," like painful cysts.

At 47, I thought I was fairly close to going through menopause as the average age of menopause is 51. So, I agreed to do ovulation suppression, thinking I could stop once I was menopausal. Well, last spring, I did a Zoladex vacation, and I still wasn't menopausal. So, here I am, entering my fifth year of ovulation suppression and my AI.

I don't really mind OS + AI. I had some mood swings at the beginning; my MO prescribed Celexa, and those went away. Perhaps the worst side effect has been osteoporosis. Since being on Prolia, however, my bone density has improved to where I now just have osteopenia.