Posted on: Nov 6, 2009 02:34PM - edited Apr 7, 2018 12:42AM by sheila888
Posts 15001 - 15030 (15,232 total)
Apr 8, 2018 10:58AM chronicpain wrote:
Welcome, pjh! We are here to help, and your fuzzy Maine coon cat companion is too (apologies if your kitty is no longer around). They are the sweetest cats who seemed to know when I was upset.
We are all happy we are Stage 1 and not something worse, though no BC at all would be better.
It can seem overwhelming at first, but once you know your plan of care options, you will feel more in control.
Apr 8, 2018 11:00AM sheila888 wrote:
Welcome to our sisterhood pjh.....
We're here to listen I'm sorry about your unexpected diagnosis once the treatment plan is in order for some how you start feeling little better.
Apr 8, 2018 11:02AM sheila888 wrote:
We made it ........
Apr 9, 2018 11:37PM Lucy55 wrote:
PPjh...Sorry you are going through this ..We all know exactly how you are feeling ..come and chat any time !! ...I was first diagnosed with DCIS ...and was also upset to discover that pathology after mascetomy found IDC as well ..which hadn't shown on mammogram or ultrasound either ..Try and live one day at a time , and be gentle on yourself ...Know that you will get through this , and back into living again .Time is a great healer ..
Nov 7, 2018 03:49PM - edited Nov 7, 2018 04:01PM by Oceanbum
15,000 posts and then it just stopped!! So I'm giving it a bump to get it started again!!
How's everybody doing? Just checking in.
I had my last surgery (fat-grafting) April 20th. I finished up my 12 cycles of Herceptin May 25th. Life has returned to the new normal. I am back to work full-time. I still get very tired by the end of the day. And I found this weekend that I am not up to walking and climbing stairs at a football stadium like I used to be. By the time I got to my seat I felt like I was going to pass out!! I definitely need to do some training for next year!!
Nov 7, 2018 05:08PM Lucy55 wrote:
Ocean ...yeah ..it's a good thread ..it would be great to get it going again. Glad to hear your through your treatments ..and it definitely takes a while to get back to normal .. emotionally and physically ..
Nov 7, 2018 07:57PM Salamandra wrote:
I just got diagnosed maybe six weeks ago now. I already had my lumpectomy, waiting to hear whether radiation or chemo is next.
I love that the 5 year survival rates are so high for stage 1. But I can't help but look at the 15 year survival rates, and they're not so high. And I can't find anything about 20+. I haven't met my medical or radiation oncologist yet. I feel like the information is very clear that radiation reduces the rate of recurrence in the same location, but it's not so obvious to me how much it actually improves mortality/extends life.
I was so freaked out at first I went along with everything the surgeon said. But now I've had time to read and think more. It's so hard to wrap my mind around.
I'm trying to work through this time to conserve my paid sick leave for chemo/radiation, but my focus has been terrible.
Nov 7, 2018 08:17PM GreenHarbor wrote:
Salamandra, I totally relate to your thoughts about the long term survival rates. It’s one of the little voices in my head in the middle of the night.
I finished my radiation treatment a week ago. Skin’s a little itchy, but not too bad. I’m really noticing the fatigue, especially in the afternoons. I’m still try to figure out my new normal (I don’t like that phrase; none of this is normal!). It’s great to connect with you all
Nov 7, 2018 08:50PM sheila888 wrote:
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 💛
Nov 7, 2018 11:15PM moth wrote:
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
Nov 8, 2018 12:33AM Julesm59 wrote:
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....
Nov 8, 2018 07:13AM Salamandra wrote:
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!
Nov 8, 2018 07:25AM Salamandra wrote:
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?
Nov 8, 2018 09:52AM - edited Nov 8, 2018 09:53AM by Oceanbum
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!!
Nov 8, 2018 12:38PM Lucy55 wrote:
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 .
Nov 8, 2018 02:41PM Oceanbum wrote:
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?
Nov 8, 2018 05:38PM farmerlucy wrote:
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?
You know what? Carpe Diem. That’s all we’ve got.
Woah Oceanbum very interesting about the duct removal.
Hugs all around.
Nov 8, 2018 06:13PM Pi-Xi wrote: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.
Nov 8, 2018 06:26PM Salamandra wrote:
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.
Nov 8, 2018 08:02PM farmerlucy wrote:
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.
Nov 8, 2018 08:04PM - edited Nov 8, 2018 08:05PM by TaRenee
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
Nov 10, 2018 10:47AM moth wrote:
Those of you who tried Predict and want to compare stats with another calculator can have a look at Lifemath as well.
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.
Nov 10, 2018 11:27AM Wised wrote:
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.
Nov 10, 2018 01:46PM CeliaC wrote:
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.
Nov 10, 2018 02:27PM Salamandra wrote:
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.
Nov 12, 2018 01:17PM CHB87 wrote:
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