TRIPLE POSITIVE GROUP
Comments
-
I’ve been searching for survivorship plan specifics - types of proactive scans and / or testing other than blood work, PAP, colonoscopy, DEXA scan, mammogram and breast MRI that should be considered? I had a full body scan, but am wondering what else should be considered and how often? Since I had mastectomies, mammogram and breast MRI are out, just checkups every 3 months. Or should I only get scans when I have issues?
0 -
I have a similar question! I met with my surgeon today for my first follow-up since active treatment. I was referred for a 6-month MRI due to a couple of BIRADS 3 things identified at my post-diagnosis MRI in August (ok, 6 months give or take). I have that on May 1. My MO and my surgeon both referred me for another diagnostic mammo in August, which will be 1 year after diagnosis. My surgeon said that pending these upcoming MRI results, the survivorship plan from here on out is to continue with OS + AI and then have a diagnostic mammo every year and a clinical breast exam every 6 months in coordination with my PCP. I asked if it wasn't supposed to be imaging every 6 months, and she said no. Her hedge was that this depends on these upcoming MRI results, and also if the mammograms identify too much dense tissue, then maybe we talk about more MRIs, but that's not the base plan.
I was surprised by this, though I guess I can see it. My real fear is distant metastasis anyway and a mammogram is not going to catch that, nor is a breast MRI.
0 -
gamzu710 - My MO recommended that if I have issues that come up to see my primary care physician. I can get an appointment quicker with her. I mostly see my orthopedic doctor and have PT for joint issues. June 2020will be 2 years since diagnosis and I was NED when I had my mastectomy in November 2020, but the fear of recurrence is something I deal with. Support group helps.
0 -
Hi Gamzu and cardplayer,
My survivorship plan is yearly MRI's and yearly mammograms alternating. I think I get the yearly MRI's bc of my breast density and probably my family history of cancer/breast cancer. So every 6 months they will check out my left breast and once a year MRI both. I don't think my variant of unknown significance played into it, but maybe it did.
I hope my breast density decreases with tamoxifen and I can let go of all the intense testing.
0 -
1982m - My mammogram always had the disclaimer “Consider adding yearly screening breast ultrasound as a supplemental screening study for a woman with heterogenously dense breast tissue on mammogram“. I didn’t do this since I always had a breast MRI. Kind of wish I had an ultrasound since they found my BC on my breast MRI in June 2020 and saw nothing on my mammogram 6 months before in Dec 2019.
0 -
Cardplayer- I have little faith in the mammogram. I got a mammogram bc of symptoms but they never saw anything on the mammogram. Actually the mri wasn’t great either- it was ultrasound that was best at visualizing my tumour.
I’m hoping the tamoxifen and aging decreases my breast density.
0 -
Hi Everyone,
I have not been on here in a while. I had to finish my TCHP. I had surgery on Friday and just got my results today. I did not have a PCR. I had micrometastasis in 1 out 8 lymph nodes. I’m beyond devastated. I was really hoping that I would have a PCR. It’s like being diagnosed all over again.
I and so scared. My little boy is only three😭.
Sorry be a downer…just need a little support from someone that understands what I’m going through.
Thank you0 -
phelps - I understand your fears - we all do. Did you have residual tumor in addition to the micromets in the node? Keep in mind that the majority of those with a TP diagnosis do not get a pcr with neoadjuvent chemo - it just doesn't happen for the majority, so you are not alone there. That said, it is important to maintain perspective on what that really means - while there is a DFS and OS advantage, the studies that indicate this include patients across stages I/II/III, so that represents a lot of different tumor sizes and nodal statuses, subtypes and hormonal receptor types. If you are strongly ER+ you still have anti-hormonals to count on, and, at a minimum, continued Herceptin for the balance of the year. Has there been any discussion of adding post-surgical targeted therapies like Kadcyla or Nerlynx?
0 -
Thank you Special K! We are so lucky to have you❤️
I only had micrometastasis in the one lymph node (1/8), no residual tumor. At initial diagnosis, I had one confirmed LN with 1 cm tumor and breast tumor was a little under 2 cm. I was 90% estrogen and 99% progesterone, her 2 3+. Not sure yet what the micromets are from my surgery.I am going to try to get on an open label study of Enhertu vs Kadcyla. If I get on Kadcyla arm,I am going to try to get on that vaccine trial.
Any one try Enhertu on here? I’m sure that there will be side effects. I’m just tired 😔
0 -
Phelps128,
The evidence is clear, class 1 (ie nearly PCR, like you) has comparable outcomes to PCR. So good news! 😊
I had lots of residual disease and 5 nodes pos.
At the end of the day we don't know if we'll be on the lucky or unlucky side of those odds. We just have to live our lives as best we can! But all to say... your outlook seems pretty good if you look at the research. 😊
0 -
thank you justkeepswimmin! I know it could be worse:( I appreciate you taking the time to reply
I missed the vaccine trial by one spot today. What are the chances? My onco said Enhertu is probably too much for my case, so I guess it will probably be Kadcyla moving forward.
0 -
Hi All!
Does any one have experience with having their HER 2 status change to equivocal after neoadjuvant TCHP? I am waiting on my FISH test, but my understanding is that if it comes back HER 2 negative that it may mean that herceptin will not work.
Any thoughts?
Thanks again everyone!Farrah
0 -
Hallo ladies, I just wanted to pop in and say I am still alive and cancer-free. These "survival posts" use to mean the world to me so now I can maybe give back some hope to someone else going threw treatment. I see some familiar names and would like to send a huge thank you to all the help and comfort you gave me while I was scared and though I wasn't going to make it. One day at the time but still doing well. Lots of love, Kattis
0 -
phelps128, I haven't had that experiance myself, but I always thought unless you are HER2 positive, Herceptin is not an option.
0 -
phelps: my HER2 status changed after chemo. It was actually negative on my first biopsy. I was enrolled in a trial for neoadjuvant Ibrance but failed out based on the results of a later biopsy which showed me to be HER2 positive (barely, on FISH test). It changed back to negative based on the post-chemo surgical anaysis but my MO kept me on Herceptin for the remainder of the course. I also did Nerlynx after that and have been taking AIs. I hope this helps!
0 -
Phelps - I prefer to think of it as if you aren't HER2+, you don't NEED Herceptin. Kattis - good for you. Five and a half years for me but I have stuck around. I too remember how much I needed these groups.
0 -
Thanks everyone for your replies!!!
Hapa- Did your MO give you an idea if it is a good thing or bad to have HER 2 change to negative? There was not enough tissue to do the FISH testing, so not sure what the final HER2 result is0 -
Thanks Kattis894, we need some HER2 positive good stories and posts to come on to this site more often.
0 -
Katiss!
It was great to hear from you again. Glad to hear that you're doing well!
0 -
Stress and anxiety have been ratcheting up steadily for my upcoming MRI ever since I made the appointment. Getting bad flashbacks to the terror and uncertainty of last August and knowing everything could be thrown upside down again just when I feel like I'm getting my feet under me is doing my head in. I know i have to learn to just deal with this.
My current fixation is that biopsy clip that fell out last year when I had that MRI-guided biopsy that went a bit wrong and left a big open wound from which the clip emerged a few days later in a gelatinous mass like the movie Alien. It's totally healed now but has left a small visible deformity. I can only imagine what it looks like inside. Will they be able to tell what the deal is even without the clip? My fear is of getting a different radiologist who reads the images, sees whatever internally scarred mess was left without a clip, and goes, "What's that? Better biopsy that!" and I get stuck in some dystopian merry-go-round. I'm not giving them enough credit, right? Right???
0 -
kattis - good to see you again!
gamzu - is it possible to speak to the radiologist (maybe on the phone?) who will read your MRI in advance of the imaging? I would want to make sure they have the whole previous story. You never know what documentation they have and will consider when looking at the results, and there could be information gaps. One good thing is that because MRI shows slices it is more dynamic imaging than mammo or US.
0 -
Not sure where to post this question. I got my port out in 9/2021. Been having pain in area where my port was located. I mentioned it to my PS (was being checked for recent implant surgery). He said I had scar tissue where my port was located. I’ve been using arnica cream to see if that helps alleviate the pain, but didn’t know if there’s something better for scar tissue. I see my breast surgeon in 2 weeks, so I’ll ask her about it as well.
0 -
Y'all I just found the most amazing Holy Grail of a website that I wanted to share with you. You're probably already aware of it but it's new to me: https://foodforbreastcancer.com/
It has a breakdown of recommended foods and foods to avoid, both during treatment and afterwards. It is chock full of the science behind how each food affects our bodies. I am so happy and I wish I had known about it during my chemo. Hopefully it will be of help to you all. Enjoy! I'm gonna go eat some carrots!
0 -
phelps - He didn't say, but the dude never says anything is a bad sign, he'll only point out the good signs. I assume it being HER2- means the TCHP worked on the HER2+ stuff.
Now I'm freaked out. Either I have started getting my period again 4 years PFC or something is going terribly wrong down there. I messaged my MO but of course won't hear back until Monday at the earliest.
0 -
In the first good news I've ever had from an imaging study since this all started, my 6-month follow up MRI results just came in and are clear. We're continuing to follow a BIRADS 3 probable internal mammary lymph node but the report says it's unchanged from the previous study. No mention of any mess at the missing clip site.
Starting to get some joint pain from the exemestane and it's doing my head in a little bit; I've got this sore spot on my spine that I think is muscular and due to the exemestane because it just feels like stiffness after I get up (like after I sleep) and I can stretch it out by hyperextending and bending forward a few times and then it's gone in a minute. But how do you know what's side effects and what could be bone mets? This is on my list of questions for my MO because aches and pains is very much a known thing with exemestane and I'm sure I'm not the first patient to ask.
I also became an aunt over the weekend, as my brother and his wife had a baby girl. Multiple people, including my brother, have said she looks just like me, and I definitely see it! My brother and I look pretty similar so it's not too surprising. Given that having my own biological children may be a pipe dream, I am ALL ABOUT this baby and am thrilled to be an aunt and that my parents have a grandchild. We're going out to visit next month. The last time I visited them was when I got my cancer diagnosis, so we're trying to replace those memories!
0 -
gamzu710- congratulations on becoming an Aunt! How exciting.
I’m on anastrozole and usually assume my joint pain is from my AI drug. However, if something feels unusual from my usual aches and pains I head to the doctor to get it checked out. I feel like a hypochondriac but I usually end up getting an X-ray or MRI, doing PT and the pain improves.
0 -
Also want to say congratulations on becoming an Aunt gamzu! I’m on tamoxifen so can’t help you with the anastrole. I’ve been on tamoxifen for 7 weeks and it’s been good. I did have some hip pain/hot flashes but they already have disappeared! I’m hoping this continues on. I don’t even really know I’m taking anything so far.
0 -
gamzu - congrats on being an auntie! Yay! As far as the pain, I would question any pain that resolves fairly easily being mets - most likely stiffness, especially if it is rising from sleep.
0 -
Thanks, all! My niece is the first grandchild on both sides so the spoiling is going to be ridiculous. I've become That Person that whips out my phone to show off pictures to everyone and it's only been 5 days.
SpecialK, my line of thinking is similar and is what has kept me from meltdowns so far. Also the fact that I had bloodwork last week and my calcium levels and everything else was fine. I notice it when I'm lying or sitting in certain positions for too long and it fades once I stretch it out and start moving again. I expected pain and stiffness (also noticing in my knees, elbows, neck, etc.) with exemestane; I just want to have a conversation with my MO about what to expect, what she's seen with other women, and how to keep my sanity when facing these particular side effects!
The side that was irradiated is also very tight because I was dumb and didn't keep up with stretches. And I'm just tightly wound in general all the time now; I'm constantly catching myself all tensed up with my shoulders hunched and horrible posture!
0 -
gamzu - I think it is cute about the phone! We have some good friends who just became first time grandparents over the week-end and they are doing the same thing - although half the time they are just gazing at their phones and not even showing anyone else the photos, lol!
FWIW, I had a lot of joint pain on letrozole and anastrazole over the 7.5 years I was on anti-hormonals. Particularly knee and back if I sat too long, and ankle/foot with those first steps out of bed. I had a minor knee injury - seemed like nothing at the time - that actually ended up requiring a cortisone injection, and the orthopedic surgeon felt it was definitely the meds. Two things I found to be true - for me - the more I moved the less pain I had, and eating an anti-inflammatory diet helped both the joint pain and my lymphedema. A lot of that pain went away when I stopped taking the meds, but not all of it. Contributing factors are that I am 7.5 years older, and had some pre-existing arthritis, degenerative lumbar disks for the last 25 years, a hip injury during letrozole, and knee surgery in college.
0
