TRIPLE POSITIVE GROUP
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I had a female tech do one if my echos that way. I didn't think anything of it, maybe because she was female.
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Thank you all. After hearing a couple of these stories and also talking to someone who used to be an echo technician, I think it was legit but just a case of bad bedside manner/patient management. Both in not giving any explanation or orientation and in not considering that somebody might feel uncomfortable/vulnerable with that positioning, especially younger woman/older man. It's one technique but I know from my last echo that there are other options. In looking at Google Images, I also note that there are no pictures in which this particular setup is shown, so any patient trying to educate themselves is certainly not going to come in expecting it. I'm glad to know nothing creepy was going on but I don't think being really weirded out was unreasonable, either.
Anyway, my email of concern was escalated to a few people and I got an apology call from a manager with mention of "retraining" the technicians, and they made a note in my file to only schedule me with female techs. I felt like my discomfort was validated and am happy with the response.
I've still been feeling pretty gloomy lately and have a bad attitude going into radiation, feeling very out of control in this process, which I think is where some of this has been coming from. The radiation tattoos really upset me and I feel like the only "choices" I have aren't really choices at all because the alternatives are all much worse. When I was signing the consent for radiation I refused the section about allowing observers because it was the only non-consequential choice in there and I was feeling petulant.
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I started AI (Anastrazole) after my last radiation and Herceptin treatments
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gamzu710,
I totally understand that feeling of no control! You feel like a ragdoll being pushed around and told what to do, I just try to remember they are working to save my life. I trust my Onc 100% and do what he says, even when I don't want to.
I have echo's every 3 months for 4 years now and I don't think I've ever had a tech sit on the bed with me, I'm glad you got that straightened out.
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Elaine,
I didn't think there was a BC index recurrence test for triple positive. I'd be interested to hear more about that. After 8 years of Tamoxifen I took a break in June and finally just started an AI-- my MO thinks of it as due diligence. If I tolerate it well, she's hoping for 2 years. So now, I'm exploring the world of different supplements, claritin, DEXAs, etc.
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Gamzu, I understand how you feel. I felt like, why do I have to be the one who gets the full bingo card of treatments? It is normal to have moments of gloominess. I was depressed at the tatooing- I was like- really? You can't come up with something that's not permanent? Like a henna or something? But I did read one cancer memoir and the author said she lets herself have up to 3 days of a pity party and then she she's back to living for the living.
Either way, your job is just to show up, not to like it. And you will get through it! It's a marathon, and as hard as it is to believe, you are over the hump. Just take it day by day. It's all exhausting so please rest.
Here's a tip- I used calendula cream on my skin a lot and it really helped- along with the Aquaphor. I also went through a lot of t-shirts-they got pretty greasy at night.
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SpecialK got the Breast Cancer Index test five years ago, and just now, insurance is increasingly covering it. I talked to my oncologist about the BCI test today, and she was OK with ordering it. However, she suspects that the test will come back, saying my cancer has a high chance of recurrence. Oh well.
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momwriter - there is not a BCI test specifically for triple positives, and the multiple trials Biotheranostics used did include Her2+ patients. The language used by Biotheranostics for eligibility for the test does not exclude Her2+ patients, the inclusive criteria is HR+, positive lymph nodes 1-3, early stage and recurrence free. The logic followed by my MO in ordering the test was that a Her2+ driven recurrence would have likely happened by the time five years on anti-hormonals had elapsed, the test was providing information on a hormonal driven recurrence after the five-year point. That said - I did end up on the bad side of the stats with a high recurrence risk, and a low benefit from anti-hormonal drugs - happens in about 10% of those tested.
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Elaine and Special K,
Thank you for the clarification.
Since I was so highly ER+ and PR+, and highly Her2+, and I had positive micromets in lymphs, I'm sure I'm high risk. Also my tumors were multi-focal and a mix of all kinds of nastiness like micropapillary, as well as mucinous (which isn't bad) and others. As I write I realize Yikes- I'm so lucky to even be here! My MO thinks additional hormonals provide more insurance against recurrence- .
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momwriter - sure! I know what you mean about feeling lucky to be here - I do too, every day! So grateful for the advances that have allowed us to be successfully treated. I had a 2.6cm tumor that was highly ER+ and highly Her2+, but with low PR+, which is a marker for more aggression, and potentially affects the way anti-hormonals work. I had more than micromets in the nodes, so I wasn't surprised at the high recurrence risk either. What was unfortunate for me was the low benefit of anti-hormonals, but my MO asked me to remain on letrozole if I could, which I did for another 2.5 years. We did decide on a PET to check status just in case the aromatase inhibitors I had been on were not offering protection, and the result was bi-laterally abnormal on both sides of the chest! This scared everyone for a minute - mostly me, of course. I was already scheduled for a reconstructive surgery a week later so my PS biopsied a number of areas, in consult with my BS - all of which came back as a large suture granuloma and several types of inflammatory process - but no cancer, thank goodness.
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Special K,
Those scans are so stressful, and the callbacks or biopsies (I've had my share) are really tough. Thank goodness those biopsies were negative. Yes, I can see why the hormonals were probably less protective for you, but good for you that you kept on them for a while anyway. Thanks for always explaining and sharing everything so well! That knowledge is so helpful for everyone.
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Hi All...
I've been on the website reading various topic threads about breast cancer when I came across this triple positive specific topic, and finally decided it was time to throw up my first post.
I was diagnosed on January 13th. It has been about three weeks now and I feel like everything has been moving so slowly. Is this how it always is?!
I expected to get an official treatment plan on 2/1; however, because my MRI showed some spots on my liver (which they said is likely nothing), it has delayed any talks about treatment until my next MRI, which isn't scheduled until 2/11!!
It's extremely frustrating. I am a planner and just want to know what I need to do to get this out of me and over with.
On the other hand, I feel like I'll never be 'over it'. I haven't even started treatment and I am TERRIFIED of a possible reoccurence.
I'm still shocked that this is even happening.
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Hi beary!
Most of us are shocked to discover we have BC. It's totally normal! As far as how quickly things go, I was diagnosed in late June of 2014 and didn't start my chemo until July 23, 2014. In the meantime, I was doing lots of scans and the like, just as you are. I had an MRI, a PET scan, a fine needle biopsy of an enlarged lymph node, a heart scan, and my port inserted for chemo.
Triple positive breast cancer is a marathon, not a sprint. It's helpful to just focus on each stage of the plan before worrying about the next. For me, that was five months of chemo, surgery, radiation and then Herceptin until December 2015. Now, I've completed seven years of hormonal therapy (Zoladex + Aromasin), with the possibility of three more years.
Do I worry about recurrence at this point? Not so much. HER2+ breast cancer is most likely to recur in the first 2 -- 5 years after diagnosis. After I hit the five year mark, I began to see my oncologist only every six months. I do a mammogram every year and a dexa scan (bone density test) every two years (hormonal therapy can thin the bones). Otherwise, I live my ordinary life.
Everyone responds to breast cancer in their own way. There is no right or wrong way to respond. However, if you need help, don't be afraid to ask for it. ((Hugs))
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bearytriple - with a BC diagnosis it feels as if everything is happening and nothing is happening. It will be hard to plan until you get a more complete diagnosis. If you have one, put it on your profile and make each item public. If you are TP, you will have chemo at some point. Your chemo regime will depend on what they find out about your lump and whether there is lymph node involvement. I had rads immediately after surgery but most people don't. Hang in there and ask all the questions you want. Someone will chime in. I'm five years out and live the life I would have lived without BC.
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welcome bearytriple+ sorry you had to join the club. I was diagnosed in 1/7/20 and started Chemo 2/5/20. I did 6 rounds of TCHP, BMX, 25 radiation and 14 rounds of Kadcyla. I'm also participating in a vaccine trial and finally made the decision to start Nerlynx in March (if insurance will pay for it). Kind of went a little overboard, my MO doesn't think I need the Nerlynx but, will let me try it.
Anyway my first month from biopsy to Chemo was packed with all kinds of scans, echo to make sure I can handle the Herceptin, PET-CT, port placement, etc etc. I was overwhelmed and felt things were spiraling out of control, moving way to fast. I thought I'd have a meltdown by the time I started Chemo. Yet, once I had a plan and started, I calmed down. I hope you get a plan/schedule soon.
I agree with ElaineT, it's a marathon instead of looking at omg I'm getting treated for a year (or more) just look at each step. Also (and this is big) don't be surprised by changes, you might skip a week because of bloodwork, they might lower your dose, etc.
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Thank you, Elaine, 1946Taco and Morrigan! I appreciate the time you all took to respond. It is helpful to hear from other people who have gone through this. I felt extremely alone when first diagnosed as I don't have anyone close that has had it.
If reoccurence is likely to happen within 2-5 years... But I take the meds (that docs said I'd be taking for at least 5 years), it sounds like the likelihood of that happening is pretty slim?! Which is great news.
I did update what I know of my diagnosis and made it public. Thank you for the recommendation.
Because my tumor is 2.1cm, I was told I was borderline so they were saying it could go either way. Surgery first or Chemo first... They asked what I would prefer. Initially I said get the chemo out of the way and hopefully have it shrink enough to where the surgery isn't as bad, but the more I think about it, the more I think I just want this thing out of me ASAP.
Curious to know what others thoughts are on this and what you had? I realize for anyone with larger sized tumors, it wasn't so much of an option.
Trying to take this one step at a time.
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Hi beary!
I did do chemo first because my tumor was big (5 cm + lovely satellite tumor). But, I'm glad I did chemo first because it showed that chemo worked for my particular tumor. After five months of chemo, all of the active cancer in my breast and compromised lymph node was gone. If you do surgery first, you will never know if chemo was that effective. Plus, today if you have residual cancer after chemo, your doctors will offer further treatment. Of course, chemo before surgery is relatively new. Members who have been here longer than me (e.g., SpecialK) did surgery first and they're doing just fine. Good luck, making your decision!
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Hi beary,
I did a blended approach. My tumour was estimated to be 1.5cm. Did surgery first and actually the invasive component was only 8mm and not 15mm. However there was DCIS aim the margins. I went on to chemo before cleaning the margins.
I really appreciated knowing where I was starting from- since I had the surgery before chemo. I liked not having a tumour in place and worrying if it was working, but then on the flip side- nothing to monitor to make sure treatments are working.
I did stress about the DCIS. However I had another surgery after chemo and turns out after chemo and Herceptin they couldn't find DCIS in the re-excision margins! So treatment worked for atleast that I know.
It's a personal choice for sure. I'm happy that I got the bulk of the tumour out first. I'm glad I was able to get more info on the tumour before starting treatment since somethings change (like stage and grade) from surgery. I was original estimates to have a larger tumour and grade 1, but ended up with a smaller tumour and grade 2. It wasn't worlds of difference but I liked having the information from it prior to treatment.
With your tumour estimated around 2.1cm knowing before hand could potentially de-escalate treatment if it turns out smaller…however, it may also be bigger then estimated and make breast conservation harder.
Good luck with your choice and treatment Both can be good choices, neither is wrong.
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Morrigan, keep us updated on the Nerlynx. My doctor talked to me about that back when I finished HP and I didn't do it. I've come back here occasionally and see there are folks that make it thru it okay. I'm trying to get thru my anastrozole, I'm almost thru year 3.
Beary, I did chemo first and it shrank it so much it wasn't there when I had surgery. I know everybody is different, and you may hear that so much you get sick of hearing that, but it's true. And don't write anything down in pen. I had to skip two chemo treatments because my counts were too low - it is not the end of the world (although you may think that when it happens). Try and eat well because your body needs those nutrients to keep your counts up. It's hard to eat when everything feels like it makes you sick, so use small portions so you can eat something.
I read this on here, when I first came here, and saved it in case I need it later: "I will never be grateful for cancer. But I am thankful for the lessons I have learned. For those just beginning your journey hold on. Reach out. Be tough. Be weak when needed. And know it gets better."
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Has anyone had a full body scan? Just wondering about the process. I had my 6 month checkup with my oncologist NP recently and asked about scans. I wasn't sure she was going to request one for me. We discussed scheduling my DEX scan in August. Got a phone call this morning to schedule the injection and then the scan. It'll be good to have a baseline and hopefully reassurance.
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nsbrown - like a chin to knees PET? I have had several - pre-chemo, post-chemo, then one at 5 years.
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SpecialK - it’s a full body bone scan. Does a PET scan look at bone or just tissue and organs?
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The PET I have had is with a CT overlay so it is looking at tissue, organs and bone, but is limited to the physical area scanned. I believe a nuclear bone scan looks at more of the whole body - if ordered that way, while the scans I have had did not include the head or below the knees.
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Hi morrigan_25… How is the vaccine trial going? I should be having surgery beginning of April, so I am hoping there is still space (if I don’t have a PCR). I will push for Nerlynx too when I get there. I hope it goes okay for you!
Hi All! I am getting my butt kicked from TCHP cycle # 5. Last one is on 3/2! Any advice on BMX versus just lumpectomy (had one confirmed lymph node)?
Thanks again for being here! I check often:)
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hi @phelps - the trial is going well. I go for my final booster 3/22 and, then it's just monitoring/check ins. I believe I have to go in for a 30 day checkup and after that they said it would be calls/emails for 2 years.
As far as I know there are still spots available.
My Chemo Brain is so bad. I've been bitching to everyone that my MO hasn't responded to my email 2 weeks ago to linae up Nerlynx treatment starting in March. I just logged into the Portal today to poke them and I NEVER sent the email 🤦🏻
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Last night I had a spine MRI to follow up on something that showed up on bone scan done for back pain.
That spot shows something "likely inflammatory or infectious" BUT they did twice as many images (yuck) AFTER the radiologist looked at the first images, and there is something that looks like lung mets or possibly pneumonia.
CT tomorrow. I am ... not doing great.
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hugs Yeslama I'm sorry you're going through this, I hope it turns out to be pneumonia (scars)
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yeslama - I have had three scares over the last eleven years - all thankfully benign findings - but I totally get what you're feeling right now. Sending positive thoughts that this is radiation fibrosis, benign nodules, or some other incidentaloma finding. We are here for you.
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CT this afternoon, and results just came back -- they did upload the images from my local hospital of CT from 2 years ago for comparison -- the pleural nodule on the MRI is stable, and from lung surgery I had 30 years ago, in college. The mets vs pneumonia" seems to be post-radiation changes, most likely.
A huge wave of relief!
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So happy to hear and glad they got back to you so quickly. Sorry for the added stress but, glad it turned out to be a non issue
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