CALLING ALL STAGE I SISTERS
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Welcome ladies..
Unfortunately nobody knows
I did good with my first diagnosis over 10 years
Second diagnosis was a new primary had BMX more chemo 3 years later still doing okay.
Hugs to everyone ...any specific questions just ask. We're all here to support each other 💛
Sheila
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What are the 15 year survival rates for Stage 1?
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Kathy, the 15 year survival rates depend on the hormone profile and grade of your tumor etc. You can have a look at this tool which gives estimates https://www.predict.nhs.uk/tool
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Stage 1 ER+ Her- multi-focal. I have had my LX but now I wait for my OncoRX #.....and wait.....they didn't send it out until I had my follow-up appt post op, So my first MO appt got pushed back a week, although the kept the RO appt next week. I try not to obsess, but in my mind that is all I do. My friends ask how I'm doing, I tell them I'm doing OK. But I don't want to tell them everything. They all think everything is OK since my path report (which I did share with them) had clean margins, neg nodes. Whoopeee!!! But I'm still obsessing. I look at the other Stage 1 treatments and outcomes, and I'm sure I am overthinking everything. What about this or that....I have two IDC tumors within 1 cm of each other occupying a space of 4.2 cm with a DCIS thrown in the mix. The graded the larger of the two at Grade 2. I guess that is good.
But I guess, I should count Stage 1 as a blessing and the ER+ HER- (which the Nurse Navigator stated is the "good type" to have) really??? I just worry because I am the bread winner, husband is retired with only SS income. Oh well, back to the real world and put my happy face on for tomorrow.
Thanks for listening to my rant and rambling. Think I need to get it off my chest HAHAHA....
Jules
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JulesSM59 - I so get what you mean about people thinking everything is good, and inside I'm like what NO! I was SO relieved when I learned it was stage 1 initially. I kind of wish I hadn't shared that with people now. I mean, stage 1 is better than later stages, and I wasn't wrong to be relieved. But it's not like an ear infection and you take surgery/radiation and it's gone. Some people are saying, oh it's six months of terrible and then it's fine! And I think they mean well, and it's either ignorance or wanting not to dwell on bad things, but it's getting irritating.
People say ER+ and especially both ER+ and PR+ are good types because they are more responsive to hormone therapy. From what I can see, they have better early outcomes, i.e. we are less likely to die in the first 5-10 years. Which is good! But whoever survives the first 10 years, regardless of tumor pathology, at that point the chances sort of even out. And it's possible to have an initial cancer that's hormone receptor positive, take care of it, have it never come back, but then have a new occurrence that's triple negative, or triple positive, or just Her+.
I don't want to borrow trouble, and I'm so glad I have a place to talk about it with other stage 1 people, because I'm sure that to more advanced stage people it seems like a great problem to have. But I still have to wrap my mind around it somehow.
My surgeon also didn't send my samples to the oncotype lab until after my first follow up. Initially my surgeon was being very confident that I wouldn't need chemo, but then apparently they decided to send it off.
My surgeon came recommended and I think it's possible she was a really great surgeon, but there are definitely things in her office communication that I wish were better. And her office is also telling me she won't write a medical note for me once the initial surgery recovery is done, even though it's weeks until I meet my next doctor, which feels like BS to me. Cancer is a global thing, not just a surgical thing, and theoretically it's all under the same hospital and a treatment team, no? But then, I haven't actually got to speak to the surgeon since before the surgery - follow up was with her NP. Which also feels like BS. I think I need to be more insistent, but who has the energy/time for that!
It's taking everything I've got to keep showing up for work!
Wow, I haven't even realized how much I've been needing to vent. Thank you for reading!
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Kathy,
Playing with it, for me it says: 85% survival with surgery only, 88% with surgery+hormones, 90-91% with surgery+hormones+chemo. That's as opposed to 96% survival for the average woman of my age with no breast cancer.
But I'm not seeing where that calculator considers radiation, or if it's included with surgery only? I don't have to time to play with other calculators just now but I will later.
But you have to put your own numbers into it. I'm 39 (young-ish) and my tumor is 1.8cm (large-ish for stage 1). And I don't know about the oncotype yet to see whether chemo will actually be recommended. It looks like your tumor is smaller and your numbers will be better.
I can't wait to meet with my medical oncologist. These numbers, they're hard to digest. Is a 3% improvement rate worth 5-10 years of hormone altering drugs? I mean, yes if there are no side effects, and some women have no side effects. But, if I have side effects?
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Good morning Ladies!! I'm so glad I started this thread back up. We need each other for support.
moth I checked out your link for survival rates. It was interesting. With my surgery, chemo & Tamoxifen looks like I have a 82% chance of surviving 15 years. I recently bought myself a Survivor necklace from Choose Hope with the year numbers. I bought all the years through 20!! I want to be optimistic!!
But I do I worry about other cancers. Every little ache and pain I fear is another cancer. I had a colonoscopy earlier this month. It was clear!! So that's one less thing to worry about!!
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Salamandra ...I don't think the other risk calculators Ive seen have a seperate question regarding radiation either ..I think it's just a given that we have had either a lumpectomy and radiation or a mascetomy .
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I was just reading something on invasive ductal carcinoma that I'm finding a little confusing. I never thought about it until just now. It's probably a question for my doctor. But what I just read said that invasive ductal carcinoma starts in the milk ducts and refers to cancer that has broken through the wall of the milk duct and begun to invade the tissues of the breast. My question is for my case specifically. I had an intraducal papilloma removed in 2000. In doing so they removed all of the milk ducts on the right side. I was diagnosed in 2017 with invasive ductal carcinoma on the right and then later the left side. I'm confused because I didn't have any milk ducts on the right side for 17 years when I was diagnosed. Is it possible to develop invasive ductal carcinoma without any milk ducts? Does anybody know? Any thoughts?
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CRAP - I had not seen the new Predict model. My ki67 was 22% and I never knew what that meant. My % of survival dropped 10% from what I thought it was.
I’m gonna lean hard on my low Oncotypedx, K?
Aargh
You know what? Carpe Diem. That’s all we’ve got.
Woah Oceanbum very interesting about the duct removal.
Hugs all around.
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Shoot! Farmerlucy, that is not welcome news! Good thing I don't have my KI-67 number. I do have Oncotype envy! I’d cling to that one too.0
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I also didn't get a KI-67 number. Which pathology report does that come with, and is it possible some of us just don't get it?
Thanks for the info about radiation. I wish I understood cancer better. I have so many questions! Like, wouldn't a reoccurrence in the breast be better than a reoccurrence in the breast wall? Are they completely unconnected?
No one I mentioned it to yet has been very distressed by my new lower life expectancy. I don't really know what to do with this information. I mean, I'll keep saving for retirement.
I feel like my breast surgeon really glossed over the long term mortality part. Is that a surgeon thing? She really made it sound like cut and radiate and done, back to normal life. She also didn't warn me about the nerve pain from the lymph node biopsy procedure. But apparently she's really good at the cutting, so hopefully it's for the best.
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I’m not so sure they do the Ki-67 much anymore. My onc said “meh” when I pointed out my high score. Apparently it is subjective to the pathologist. Yeah- I’m going with that.
Yep surgeons cut to cure,and they usually do. The rest is mop up.
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Hi ladies! Good to see so many of us are doing well. I started off with a stage 1 dx and it was “upgraded" to stage 2 when everything was all settled and all the reports and pathology came in. I have to admit, I got freaked out all over again. But... life goes on. I had nipple reconstruction in August and on Monday I am getting my tattoos and hopefully I'll be done with surgical procedures for a while. I'd like to actually recover from all this before we start talking about hysterectomy. Tamoxifen has not been fun, I have strange se like foot pain. I go next week to an orthopedic to see what he has to say about my pain. If it's not a se of tamoxifen then something else is up. Bleh. Not going to worry just yet.
Hope everyone is ready for the colder weather. It does make the hot flashes a bit more bearable. And even tho it's been rather cool here at night I haven't turned on the heat. I heat enough myself thank you very much. lol
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Those of you who tried Predict and want to compare stats with another calculator can have a look at Lifemath as well.
http://www.lifemath.net/cancer/breastcancer/therap...while surgery is the biggest bang of course, for many of us significant benefits accrue from the rest of the treatments, esp when you look at 15 years out & I think for most of us, we're hoping for more than 15 yrs.
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Moth, thanks for the link. It's strange that this one says that hormonal tx really only lengthens my life span by months! I know that is just an average, but wow I'm struggling with Anastrazole, it needs to do way more than that, lol.
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Hello to all. Jules - Understand your rant completely. Here's my "story"/rant. Only at 1st post-op when surgeon mentioned Oncotype DX did the possibility of chemo rear its ugly head. Waiting for Oncotype results & chemo/no chemo determination was god awful. Results were in the "gray" area & surgeon stated due to early detection, small tumor size/grade, clean margins, no nodes, ER+/PR+, etc. he was comfortable with no chemo. That was good enough for me!
However, surgeon (a male) + his female PA very unsympathetic about time off from work to recuperate. Believe they trivialize the impact of the lumpectomy. What do you think the surgeon would feel like if he had a chunk of penis excised? Only authorized 1 week off, & was still feeling very rough. Luckily, was able to leverage Christmas and New Year's Holiday time off + company allowed use of FMLA sick time + working from home to stretch return to office out. Did not return to my normal 8-10 hour day, though. Was able to continue working 5 - 6 hrs a day throughout radiation therapy (+ FMLA sick time to reach 40 hrs). Radiation was 16 "all over" + 4 boosts to tumor bed and my skin held up incredibly well. Did radiation therapy at the end of the work day since treatment center was on the way home, only a 7 minute drive from my front door.
One thing that I found surprising - lack of understanding/empathy for BC & all it entails from co-workers. Not one "get well" card from the office, or other communication. However, when co-worker was facing hip replacement surgery, big "wish you well" breakfast celebration & 2 get well cards a week sent from the office. Could not help but have a "sour grapes" feeling about how BC was trivialized.
Oh well, guess I better stop my rant - thanks for the sounding board! Gentle hugs and healing thoughts to all in need.
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CeliaC,
My breast surgeon was also incredibly unempathetic with time off. It makes me wonder whether there are stats collected that count against them or something. Fair enough if I also had the option of a medical oncologist to turn to. But Sloan Kettering set it up so I only met my MO a full month after my lumpectomy. And yeah, part of the delay is due to waiting for oncotype results that my surgeon initially said would not be needed if my lymph nodes were clear, and then the office didn't even send out until after my follow up appointment with the surgeon's nurse practitioner.
I have another week to wait. In the mean time I'm reading a lot about radiation and starting to read about tamoxifen. And Monday likely going for a third time to get a seratoma drained at the site of the lymph node biopsy.
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Celia ...My HUSBAND's work sent me flowers , but MINE didn't 🙄
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So I am not sure if this will be my home or if I will be moving on to another stage.
So far I am "clinically stage 1"
I am 31 and I was diagnosed on 10/19
Breast tumor is 9mm in size. Er positive (95-100%) PR positive (80%) grade 2 (low mitotic rate...a 1). Her 2 negative. Negative for BRCA. Lumpectomy and reduction scheduled for tomorrow and it will include a node biopsy. MRI did not show any node activity but I have heard that can happen and you can still have positive nodes. (hanging on to the 80% that don't light up and come back negative). Hoping for some good news after tomorrow
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CHB87....I know the stage your in now ..without your final path report ..is always the hardest ...Hoping everything goes well tomorrow for your surgery , and you can get your results quickly .
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Hi CHB87
I'll be thinking of you tomorrow and keeping you in my prayers. I hope all goes well with the surgery and you get good results. Stay strong...you've got this!! Sending hugs your way!!
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Hi CHB87, good tomorrow and may all of the results be good results!
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CHB87, I hope your surgery went well and you are not in too much pain, and able to rest!
CeliaC- Rant anytime you feel like it! But I must say I had a little giggle about the penis comment, and how very true that would be! I am glad you were able to adjust your work schedule during radiation. I am going to try and convert mt FMLA to intermittent when I start radiation, but not sure if the RO will sign for it. I am sure it varies but how tired were you during RADS?
I am wondering how many of you have had a PET scan? I have not had one, but am going to my MO tomorrow and asking if I need one. My positive nodes, with extranodal extension worry me that this is lurking elsewhere in my body. Any thoughts?
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Danni ..I didn't have a Pet scan ..but I did have a CT Scan and Bone scan ..
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Danni
I did not have a pet scan either.
Dsgirl
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Dani, this is my 2nd cancer and I have never had a pet scan.
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Hi CHB87,
That all sounds like good news!
I was a wreck waiting for my tumor & sentinel node pathology to come back, but in the end it confirmed my surgeon's clinical diagnosis. The tumor was larger than indicated on previous imaging, but still came in under 2cm, which is the magic cut off for Stage 1. This stuff... some of it seems so arbitrary!
Good luck with your surgery and keep us posted
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I'm beginning to think the term "lumpectomy" trivializes the whole situation. It's the Rodney Dangerfield of surgeries, it gets no respect. Maybe we should go back to the more technical "partial mastectomy" so people instantly understand exactly what it is. I have to admit, I thought a lumpectomy was more like a little melon-ball scoop-out, not lopping off a third or more of a breast.
On the other hand (or body part of your choice), when I had a complete hysterectomy due to cancer, and a co-worker had breast cancer aspirated in her doctor's office with a needle, she got all the "Ooh, breast cancer!" love and drama, and I got zilch when I got back to work after major surgery. But she went full-out Disney Breast Cancer Experience with pink shit out the wazoo, and kept it as obvious as possible, more or less demanding attention and sympathy. My innards were out of sight, out of mind.
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We all deal differently. I'm sorry you didn't get more support from work though, if you wanted it.
My bill said "partial mastectomy", not lumpectomy. I did a double take at first. In retrospect, yeah, it makes sense. And I think I would have felt more comfortable taking more time to come to work, if I had thought of it that way.
I don't think I lost so much of my breast, or at least it doesn't appear that way so far. But the healing from the lymph node biopsy has been a slog. I had to get a seroma drained twice. I went back a third time, they couldn't get anything. Nurse thinks maybe it's clotting. She's not worried but there's nothing to do but live with the discomfort, and a 'veronique' band that constantly reminds me of the cancer.
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