TRIPLE POSITIVE GROUP

ElaineTherese

gamzu,

Glad to hear you're joining some support groups! Yeah, you're too young for breast cancer.

Radiation was a bit dehumanizing for me. I felt like a piece of meat on the table while the techs kept shoving my body around until it was in exactly the right position. You're right, though, it's way shorter than an MRI. That should help.

Yep, it seems like it never ends. Here I am, seven years out, and I still visit the oncology clinic every month to get Zoladex (so I can take an AI, as I'm pre-menopausal). But, there's a light at the end of the tunnel -- my oncologist has ordered the Breast Cancer Index test to determine whether I can stop hormonal therapy in February. Yay.

((Hugs)) It will get better.

Anonymous

Hi all,

tests turned out clear! Lymph nodes on the right side were almost back to normal. They did a ct scan also to get to the deeper nodes they can’t see on an ultrasound. That was good too.

The test I flunked, however, was gallbladder. That is coming out Thursday, unless I chicken out. I’m worried whole I might feel better on some things, other things may now be an issue.

was just reading up on the Neuvax vaccine, since special k and I did that study. Pretty interesting!

Hope your new year is starting out strong and healthy

ElaineTherese

Yay, fluffqueen! I'm glad to hear there's nothing going on in your nodes!

I had my gallbladder removed 17 years ago, and I don't miss it. I can't each super-rich foods anymore (think of sauces made with heavy cream), but I don't really need those foods in my life anyways. (If I do eat such foods, I tend to have explosive D.)

It was an easy surgery, but I remember feeling more tired than usual for about a month. Then, I felt normal. ((Hugs)) It's one thing after another, isn't it?

Nsbrown54

Hi Fluffqueen01 - I had my gallbladder out 10 years ago. It was done laparoscopically - 4 small incisions. It was outpatient. I went back to work a couple of days later. Low fat diet works best for me. I hope,it goes easy for you. Take care

TriplePositiveP

Hi @ElaineTherese, my insurance doesn't cover the Breast Cancer Index test, but my oncologist said sometimes the company will offer a coupon or discount so he ordered it anyway. Apparently it is still considered "experimental" for HER2+

I read some negative reviews of biotheranostics on Better Business Bureau implying bait and switch tactics. I am curious if your insurance covers it or if the company has contacted you about payment issues.

You can send private message if you prefer, thanks

ElaineTherese

Hi TriplePositiveP!

My oncologist has figured out how to get my insurance company to cover the Breast Cancer Index test. She's actually good about that; she managed to get my Prolia covered as well.

gamzu710

I've debated for a week whether to post this question and have decided to just go for it. I had my repeat echo last week. Something about it felt "off." Last time, I was on the exam bed while the tech sat on a stool at the computer next to the bed and had me lay on my left side (which had me facing toward her). This time, the setup was "upside down" so when I was on my left side, I was facing the wall and the tech had to reach over me with the wand. I think it was the exact same room as last time so I'm not sure why it changed around. The computer was on wheels so I have no idea why it wasn't just moved to the other end of the bed so I wouldn't have to face the wall.

Last time the tech was a woman. This time it was a man probably in his 50s, much older than me. He sat on the exam bed with me instead of on a stool at the computer and we were touching hip-to-hip with my waist and one arm basically trapped in his armpit while he leaned over me with the transducer. This is only my second-ever echo in my life, so I don't know what's normal and I didn't say anything. He didn't grope me or anything but having him basically sitting on top of me felt off. Is this how it's supposed to be? It definitely wasn't that way the first time and something about it made me uncomfortable. But this cancer process has been so filled with unfamiliar things that make me uncomfortable and that I'd rather not be doing but have to anyway that my radar for what is genuinely not as it should be is all messed up. Has anyone else had an echo like that? I don't want to make a big deal of anything and would be happy with just not seeing that tech again, but if that is how some echoes are then whatever. Just another thing to grit my teeth and get through.

AlwaysMeC

Gamzu, I went from HP to Kadcyla and have had 4 echos. I'll have another three I think before active treatment is done.

Your experience is definitely outside of the norm compared to mine. The room set up sounds the same. At my hospital, there is a table/bed. The tech has me lay just a little bit on my left with my left arm raised up. I get three monitors (stickers) on the left and right of my heart near the shoulders and one below the rib cage near my abdomen. The machine is on a small cart in front of where I am facing, and there is a stool for the tech to sit on. Near the end of the procedure, depending on the tech, he or she might drop a section of the table to get to that area below my ribs.

At no time does the technician ever hover above me. In fact when I was adjusting myself, I was about to just take my whole top down because I thought the tech was being too delicate about it. The tech (guy) said it wasn't necessary and he was trying not to be rude. He was attempting to cover up my breast so it wouldn't be exposed to him while making the adjustments. That's why he was being so delicate.

I hope this doesn't distress you, but that whole situation sounds shady to me. Hopefully someone else will chime in and correct me.

1946Taco

Sounds totally inappropriate to me. I'd report him to HR and your primary and oncologist. You don't know how many other women have also had this experience and have kept quiet. He NEVER should sit on the table with you.

morrigan_2575

The first place I went to had me lay in my left side and that faced the wall, the tech (female) had to reach over me. I did that place about 3 times all in all (COVID and insurance changes forced me to go to another place). I've done laying in my left side, facing the person as well, which I prefer because I get to look at the monitor instead of the wall. Mostly I've had women but, there was a male tech in training at one visit and they asked if I was OK with it. I agreed because, I don't really care anymore.

It may not be the "norm" but it isn't unusual either. Might just that this is the best way for that tech, or what they're used to.

If you feel uncomfortable I would suggest you bring it up and you can certainly request a female tech if that makes you more comfortable. However, I've had it done both ways so I would say the exam was legit.

gamzu710

Thanks to all of you. Morrigan, did the techs sit on the bed with you? Reaching over me would have been fine (though I would have wondered at the dumb setup, with the computer on wheels) but sitting with me on the bed with my butt basically pressed up against his side and pinned under his armpit was pretty weird to me.

I just sent an email to the cardiology office sharing my concerns and requesting either a female tech for next time or to have a second person in the room. Frankly, if that is a "normal" way they do things, to have male techs sitting on the exam beds pressed up against female patients while alone in the room with them, I am astonished that they don't explain that in advance or see any way it could make someone uncomfortable or be misconstrued.

morrigan_2575

@gamzu I went back and reread your post and yeah, that is how she did it. I remember her hip being up on the bench next to mine. This actually happened with 2 different women techs at Lakeside (facing away). I don't think the 3rd tech did it and I remember wondering if she was doing it right.

While your experience matches mine, it did make you uncomfortable and. i think you should mention it to the place. If nothing else just to make sure you don't have him again.

Redcanoe

I had a female tech do one if my echos that way. I didn't think anything of it, maybe because she was female.

gamzu710

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.

Jstarling

I started AI (Anastrazole) after my last radiation and Herceptin treatments

BigPeaches

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.

momwriter

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.

momwriter

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.

ElaineTherese

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.

SpecialK

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.

momwriter

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- .

SpecialK

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.

momwriter

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.

bearytriplepositive

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.

ElaineTherese

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))

1946Taco

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.

morrigan_2575

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.

bearytriplepositive

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.

ElaineTherese

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!

1982M

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.