TRIPLE POSITIVE GROUP
Comments
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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?
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Not that I’m aware of, although I’m sure there’s a lot of research out there. It’s also information your MO should be able to provide.
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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.
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There's this calculator for 5 year risk of breast cancer recurrence based on subtype and therapies done:
https://www.utwente.nl/en/techmed/influence/nomogr...
And an article about the development of this particular calculator
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"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?
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Take that calculator with a grain of salt; it's from recorded data from patients in the Netherlands, and when I plugged my data in it gave me a way better outcome/ lower risk than my MO gave me. Not sure if that means there are other factors to consider, or we should all be so lucky to live the Netherlands with universal healthcare....
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"Take that calculator with a grain of salt"
Absolutely,
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ITT = Intention to treat
That means everybody
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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 %.
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Thanks for the input ladies.
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"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.
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morrigan- I agree, I also have a love/hate relationship with stats. My MO hasn't really given me specifics and I haven't really asked much because I tend to get a little hyper focused on them in a negative way, especially when my anxiety is high.
I had surgery first (BMX) only because all they could find via biopsy was DCIS, albeit a large area, and they didn't want to make me a “pin cushion" trying to find the IDC. That ended up being a good call because final pathology showed my mass was all DCIS (8 cm worth) and the only invasive part found was 3mm on one of three sentinel nodes taken. I'm a weird case and they still don't entirely know what caused a small part to move to the sentinel node only, but it's was pushed me onto the chemo trajectory.
The waiting for results and wondering if you chose the right path and treatment is so overwhelming.
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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.
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morrigan,
There will be things you will not know, and questions unanswered, even after surgery and pathology results. One sees all these machines and technology and labs and scans, and it can feel like they got this down to a science, but that is not really the case. There is always uncertainty, things that cannot be seen, stuff that we barely understand. Sounds like you have a good plan and your cancer was caught early. The good thing is that, as you say, you get caught in this whirlwind and it all goes fast, and in a matter of months you will be on the other side.
I am a mathematician/statistician by training and by trade, and I think stats are great because they help us deal with uncertain stuff. But we need to accept our ignorance, the complexity of cancer, the uncertainties of life -easier said than done.
LaughingGull
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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.
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Coach Vicky-I get an MRI every two years to check the implants also, but my PS says what he needs to see doesn't involve the dye injection, which would identify more likely any recurrence. I have had him do the dye one, but it doesn't really tell him what he needs to see. The last one I had last year was not dye injection and it specifically said that it was not an evaluation for cancer.
The only mammogram I have had was this year, when I found a lump on the right side. They did an ultrasound and then a mammogram after to double check and make sure it met with their findings. It turned out to be fat necrosis, and I have a couple spots consistent with oil/fat cysts in my axilla area, but no one seems at all worried, so I am going with the flow for the moment. I am one of those people that would be happy to have a PET scan every three years if I could. I know that the day after, I could have something turn into something, and I could just as easily drop from a heart attack, but still...
PTSD is for sure a thing. I'm sure it is for anyone with a serious medical diagnosis.
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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
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fluffqueen0- I have a prescription for cymbalta - even got it filled but haven't started it yet due to fear of SE's. My joint pain from the AI (letrozole) has gotten a lot better except for stiff hands, trigger thumbs and my elbow and shoulder hurt occasionally, I think the elbow and shoulder may be radiation or surgery related. Did you have a lot of SE's from cymbalta? Did it help the stiffness? I have pretty bad neuropathy in my hands and feet (thanks taxol) and I think the AI makes it worse. Waking and hot showers have really helped a lot.
Annie
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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
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I mentioned it to a couple of Drs. Right now it's on the back burner until I get through everything else. There's also shots that suppress the estrogen production as an alternative. I'm not sure which is better/more effective.
If I do end up going the surgery route I'd like to just have everything taken out in one shot (tubes, ovaries, uterus and cervix). However, that's a discussion with my MO for another day.
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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.
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For those with trigger fingers/thumbs, I got relief from using coban wrap (like what they use after you have a blood draw - the stick to itself stretchy stuff) on the trigger joint, tight enough to allow a little bend, but basically immobilizing. It took about a month of doing this and the trigger resolved.
vijiya - chemo drugs suppress the immune system and inhibit healing - you wouldn’t have enough time between now and your start of chemo date to heal enough from surgery. Most who have an oopherectomy do it after chemo is finished and the discussion about treating the ER+ aspect happens
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Here is an analysis on the long term effects of ovarian removal. I got my ovaries removed and I am happy about it, but I also had ovarian cysts and constant pain. The biopsy of my ovaries found a bit of endometriosis too. I made the decision after discussing with MO and oncologic ob-gyn
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vijiya - for me the plan was to be chemo/herceptin, then tamoxifen. Now that has changed to herceptin/tamoxifen. I am 52 and have been in pre-menopause for the last 3 years, I get to like 10 or 11 months with no period and then have one in the fall. First time that happened we did a biopsy, second time I refused the biopsy because it was on time, in the fall and felt like a regular period. The third year same thing - difference was my estradiol jumped super high (I had been in the teens and it went to the 40's) and I got my BC diagnosis.
My MO is taking the approach that we will do tamoxifen for two years and see where I am at with the whole menopause and from there decide when to do a hysterectomy but both he and I agree all the female pieces and parts are going to come out at some time.
I am meeting with a new Gynecologist who will help us keep track of what's going on down there and if need be we will do surgery sooner.
I do think sometimes in the rush we move so fast we don't stop to think, fear plays a big part in that. I am comfortable waiting and giving the meds time to settle in my system and for my body to heal from one surgery before I move into another.
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thank you very much for all the quick responses. Guess I can wait till the 3 month chemo is done before thinking about removing my ovaries.
have a nice day everyone
BTW...I am from Malaysia, so my postings will be at odd hours
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Good morning then Vijiya! Going to bed. Take care.
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"I do think sometimes in the rush we move so fast we don't stop to think, fear plays a big part in that. I am comfortable waiting and giving the meds time to settle in my system and for my body to heal from one surgery before I move into another."
Yep. I read about Ovary suppression as part of my initial research and presented to my BS as a question (can/should we do this and, why not just rip them out rather than more drugs?). I never stopped to think about the long term results, just cut it out, cut everything out that could lead to cancer (Tamoxofin has a 1% chance of causing Uterine Cancer? - Let's take The Uterus out?).
I've started to calm down and focus on getting through Chemo and Primary Surgery before looking at the road ahead. It's not always easy, especially if I read something on the board that sends me down a rabbit hole.
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Re: Ovaries removal...
I was diagnosed almost a year ago at age 49 with 95% ER, 90%PR and Estradiol was 302 Ovulation ... I was like Wait, What ... I had the ablation done 2010 and partial hysterectomy 2015, kept my ovaries for health benefits, no periods since.
At first, I too wanted everything gone. chop off my breast and total hysterectomy!! Thank goodness my doctors new better. I kept my breast and no oophorectomy.
Chemo put me into menopause and I had my Estradiol checked again Jan 2020, last chemo Sept 2019, it is now at <5pg Postmenopausal (ChemoPause). I am not on AL yet, waiting til after my DEXA scan.
Meanwhile I take 20mg of melatonin at night as there have been studies showing it decreases your hormone levels. Hot Flashes are hard, going to try the SGB, stellate ganglion nerve block, to see if it helps, supposed to help with my migraines as well, fingers crossed.
Hang in there! Here are just a few links, hope they work.
https://www.hindawi.com/journals/ije/2018/3271948/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC55036...
https://www.sciencedaily.com/releases/2016/08/1608...
https://www.naturalmedicinejournal.com/journal/201...
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I keep getting confusing reading the soft and text trials. I am on AI + ovarian suppression. Is this the most effective option for triple positives? It looks to me like tamoxifen + ovarian suppression was more effective. But maybe not when you take overall survival into account? Can you even look at overall survival as an end point on an 8 year trial these days? I feel like our odds are so good as triple positives that you'd need a 10-20 year study to be finding difference in overall survival vs. disease free survival (which I guess is why they use DFS). Maybe it's time to quit reading studies. I see my MO again in June when I finish Nerlynx, I'll see what he has to say then. I certainly do not mind not having periods anymore. I can't believe I lived like that for almost 30 years!
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Hapa,
May I ask if you took Arimidex and Nerlynx at the same time? My MO started me on Kadcyla instead of Herceptin and Perjeta after completing 6 rounds of TCHP and DMX in November. I just learned about Nerlynx, and I’m curious if I would be a candidate.
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