TRIPLE POSITIVE GROUP

jh40

elainetherese - yea I think any knife to the brain sounds pretty horrific!

The entire treatment menu also sounds pretty horrific. I’ve known that menu is meant to prevent distant metastasis, but none of it sounds very appealing!

Hoping it will be a kinder path than I’ve imagined it to be.

SpecialK

jh40 - generally the chemo before surgery option is driven by tumor size and/or nodal involvement. About a decade ago almost everyone (myself included) had surgery first for Her2+ breast cancer, followed by chemo and Herceptin, and then radiation if needed. When Perjeta was introduced for early stage patients in late 2013 as an addition to Herceptin, neoadjuvent chemo became more the norm for those with tumors larger than 2cm, or nodal involvement, or some other constellation of high risk. In an effort to spare those with smaller tumors and no nodal involvement the potentially more damaging side effects of multi agent chemo regimens, Taxol and Herceptin given adjuvently is often done. Here is some study info about the success of this approach, and another link that discusses the longer term follow up of this study.

https://www.nejm.org/doi/full/10.1056/nejmoa1406281

https://pubmed.ncbi.nlm.nih.gov/30939096/

In my time on this site I have not seen quite that high a percentage of patients with surprise positive nodes, but that did actually happen to me. I have a history of faulty imaging, and it was one of the reasons I opted for a bi-lateral mastectomy. There are pros/cons to adjuvent vs neoadjuvent chemo - with adjuvent chemo you get the information from surgical pathology and have a clear staging picture. With neoadjuvent chemo you get to see how well chemotherapy reduces or eliminates your tumor, but the extent of staging can be muddy waters. If you have the option of either choice it can become which provides you more peace of mind.

Anonymous

jh40 -like special k, I didn't have the chemo option first, but it does make sense as far as showing if your body will respond. It would probably have made me nervous that something else was going on while I was getting the chemo, lol, but that's how my mind works. I chose mastectomy for many of the same reasons as you did. Had I been younger, I might have done something differently. One thing I really miss is the nerve sensation. That was kind of the hot spot for me and with it gone it has ben challenging in the romantic side of things.

Because I chose mastectomy, I did not require radiation. Had I not, based on my size, I was on the edge of needing it. Taxol was a pretty easy chemo to tolerate as things go. They took two lymph nodes to test on mine, which were clear.

On my ovarian side of things, there was no mass, so that is great news. I do have some calcifications in my right ovary, so they ordered a ca-125 test. based on those results, they may decide on hysterectomy. Currently both the oncologist and the ob/gyn say it isnt needed. But I have to hav another pelvic ultrasound in 2 months. I've decided to be patient until then, which isnt in my nature lol.

JH (I think)-keep a list of all your questions to take with you. I taped a couple of my conversations early on. It is amazing what you miss or forget.

Joules44

Happy Friday all! My oncologist is pushing me to get a Reclast infusion. I had my first bone scan a year ago and I was diagnosed with osteopenia in my hips and parts of my spine. I am on Arimidex and honestly I have a good deal of joint pain and some arthritis now. I am 55 years old. I'm curious if any of you have taken Reclast and what your experience has been. I am so tired of chasing side effects with other drugs that create new side effects. It's never ending!

ElaineTherese

Isn't Reclast a biophosphonate? I was on Fosamax, but it was taken orally rather than via an injection. I had no side-effects from Fosamax

After six months on Fosamax, my oncologist prescribed Prolia, which is a shot every six months. I have no side-effects from Prolia. My bone density has improved from full-blown osteoporosis to osteopenia.

gamzu710

Last August I was in LA visiting family when the pathology report with triple-positive IDC popped into my patient portal. The trip was ruined and I spent the rest of the time in a fog of alternating panic and numbness. Tomorrow we are leaving for LA again, to visit the newest addition to the family, my 2-month-old niece. Seeing the same people and spending a couple days at the same hotel where I opened up my patient portal and the ceiling fell in. 10 months later and I've got a buzz cut and a port and had to schedule the trip around my Herceptin and Zoladex injections and have all kinds of lovely joint pain from the exemestane. But I'm in a sweet spot between scans (MRI in May, f/u diagnostic mammo in August) where the ceiling can't fall in again for at least another month and I am determined to replace last year's bad memories with good ones in the same places.

I'm also determined to argue for a year of Nerlynx but that's a conversation for September.

Nsbrown54

gamzu710 - glad you’re replacing bad memories with good. I’m at the beach with my family Two years ago, they went without me. I was preparing to start chemo the following week. It’s always good to have something to look forward to. Enjoy your trip!

jh40

Hi again All

I had surgery on 6/13, single mastectomy. Recovery is going really well. I have a lot more fatigue then I ever expected but I'm still in good shape.

My surgeon called me yesterday and told me that the final path says the tumor was only 1.9mm and both lymph nodes were clear. This is obviously excellent news, but I'm shocked at how it could go from 11mm down to 1.9mm. My surgeon suspects that the radiologist got it wrong to begin with and that the tissue surrounding the tumor was not cancerous but appeared to be, and thinks it wasn't 11mm to begin with.

I remember also asking prior to surgery if there was a chance the tumor could be smaller because of what was removed during biopsy, but both my surgeon and oncologist said biopsy tissue isn't very consequential to the overall size, and if anything I should expect for it to be slightly bigger. The biopsy sample sizes were noted in the report and the math isn't there for 9.1mm of tissue.

This is a significant difference in size, and I'm just wondering at this point if anyone else out there has had this experience before? Should I ask for the images to be reviewed again by different radiologists?

jh40

I've gone from great news to unexpected news. Met with my surgeon yesterday to be told there was a typo in the final pathology and the tumor was not 1.9mm but 19mm. There was DCIS in there as well but it was negative for EIC. So it went from 11mm to 19mm. 1 single cell isolated cell in 1 lymph node, nothing in the 2nd, which my surgeon says means that they're still classed as negative.

Is there anyone else out there with this sort of experience with imaging? Should I be asking for multiple opinions? I know imaging is not perfect but it's surprising that it could be this far off the mark.

Joules44

I did not have an experience like this with imaging but I did with pathology. I was initially told my tumor was HER2- but my oncologist insisted I send my sample to a second lab which came back with a portion of the tumor being HER2+. My tissue sample was passed around for so long, like weeks and weeks if not months, that I'm not even sure that the tissue pathology didn't change in the lab. It's frustrating to have to shift gears emotionally during a really stressful time. I'm sorry you're going through this. I don't know what advice to give about second opinions on the imaging but I feel you on the frustration. Wanting concrete answers around your health is a pretty basic need.

ElaineTherese

jh40,

In my experience, different imaging can produce different results. The ultrasound said that my tumor was 3.9 cm; an MRI said it was 5 cm with a lovely satellite tumor. Because my lump was close to the skin and could be measured with a ruler (so high tech!), my MO assumed it was closer to the 5 cm size. I will never know for sure what the actual size was because I then did chemo before surgery.

jh40

joules44 & elainetherese thanks for sharing. It's unreal to me that imaging and tests performed so often can be so inaccurate. We can send astronauts into space but somehow we can't manage to get this right? It really is frustrating.

It's comforting to know that I'm not alone in this sort of experience, with everything coming down to millimeters. I'm supposed to follow up with my original oncologist tomorrow, and my surgeon recommended a 2nd opinion, so I'll see what they have to say.

LaughingGull

Hi jh40,

What you are going through is extremely common, imaging is only indicative, and the final staging is determined by the results of surgery. I understand your shock and frustration. I had a lot more cancer than the imaging predicted, so I can relate. Very, very common.

Please take solace in knowing that your tumour is still small, early stage, and your nodes clear, which is excellent news, and indicative of a very good prognosis!

Keep us posted of your next steps -and if you share the details of diagnosis and treatment, that would help others give advice.

Best

LaughingGull

SpecialK

jh40 - my regularly scheduled mammogram showed no masses and no DCIS, but I did always have multiple palpable lumps, so often my mammo was followed by US. The US a few minutes later showed something with a slightly irregular border, along with the usual multiple smooth bordered cysts that had been seen and monitored for many years. Biopsy showed DCIS and IDC, with the measurements during the US backed up by MRI later. MRI indicated cancer only in the right breast, clear nodes. Because I image so poorly, and had a 20-year history of problematic cysts, I elected a bi-lateral mastectomy. Surgical pathology showed DCIS/IDC in the right breast with cancerization of the lobules also, and surprise ADH/ALH in the left breast. Cancer side SNB was initially clear in the OR, but later in the more thorough exam in the lab I had isolated tumor cells. My surgeon and oncologist insisted on ALND surgery five weeks after BMX (because of the Her2+) and that showed a much larger tumor in the additional nodes removed. It is indeed frustrating that we do not have better tools, but progress is always being made. Not particularly helpful in the now, but hopeful for future patients. Hang in there!

jh40

laughinggull- thank you for sharing your story. It does make me feel better that I’m not alone. I do still wish imaging was better but I guess if imaging was faulty enough we wouldn’t have such good survival rates. My oncologist said the same thing: keep your focus on the fact that it’s small still, and the prognosis isn’t any different.

specialK - it concerned me about the single isolated tumor cell in the one lymph on an IHC stain. Nothing in the second lymph. Should I have asked them to dig deeper? I know your situation is different to mine but is yours unusual? My surgeon took a conservative approach - which I appreciate - but I certainly wouldn’t want to miss anything.

My path showed IDC (no special type) clear margins (distance to closest margin 3mm), mentioned multiple benign cysts and mentioned uninvolved skin. DCIS present but negative for EIC and didn’t involve the nipple, and had clear margins. No microcalcifications. ER 70%, PR 75%, Her2 80%. Ki-67 40%. Grade 3. My left breast (which was not taken off) was noted as “unremarkable” on earlier imaging.

My Oncologist didn’t seem too concerned about the path. He said that if there were any cells floating around in there that the Taxol would kill them. He also said it was up to me if I wanted Carboplatin or not. He said that with the size of the tumor it technically still qualifies for weekly Taxol and Herceptin as a treatment plan, and he was fine with it because studies show it’s effective, but he said if I wanted to throw the kitchen sink at it he would support me. Not sure what road is best with that?

LaughingGull

I know I would go kitchen sink -but I am not you

ElaineTherese

jh40,

I did a harsher chemo regimen than you (Adriamycin + Cytoxan then Taxol X 12 + Herceptin + Perjeta). However, my tumor shrank the most from the Taxol + Herceptin + Perjeta. Your tumor is small; studies show that Taxol is effective for small tumors; I'd do it.

jh40

laughinggull & elainetherese - thank you for the input. I’m also getting a 2nd opinion on the 18th just to be sure. I’m curious what she has to say

maggiehopley

jh40,

I am triple positive and have two tumors in my left breast, the larger is 2.3 cm. My MO said that TCHP was standard of care, but I was eligible for the COMPASS study, which is investigating de-escalating the chemo part of Her2 positive treatment, and if I did it I would get Taxol weekly x 12 plus herceptin and perjeta. This is the standard of care for tumors under 2 cm. She strongly encouraged me to do the study, as both herceptin and carboplatin are hard on the heart. I took her advice, and just today finished week 8 of 12. Last week my MO did an exam and said my tumors have shrunk considerably and she can barely feel them. I am hopeful for pCR, but even if not, this regimen has been very effective and I have had very few side effects. ( I actually get Kanjinti, which is an herceptin biosimilar- basically the same drug by a different manufacturer). My hair has been shedding since week 4 but I still have enough that nobody notices that it is very thin. On TCHP there is the rare possibility that the hair loss will be permanent.

SpecialK

jh40 - I am inclined to think that your single nodal cell may have been an artifact from biopsy, with the node doing its job of catching it if it was dislodged from the tumor during the biopsy process - as long as there was due diligence done by the pathologist in looking for more cells in the material provided post-surgically. In light of finding only one I would assume it prompted a thorough exam to find any additional. And, yes, my situation was indeed unusual - I believe in only about 10% of cases do you see my example, so the odds are definitely in your favor. My tumor was strongly ER+ and Her2+, but weakly PR+, which is potentially more aggressive, and it was 2.6cm so it had been there for a while, and this was possibly responsible for the nodal situation. It is a hard call as far as removing more nodes, but the sentinel node biopsy process has been around now for many years and the data collected guides surgeons on how to proceed if ITC are found. Removing more nodes increases the odds that you could develop lymphedema, which you don't want. Since you will now move to systemic treatment it will hopefully provide remedy if there are any additional rogue cells remaining in the axilla.

jh40

maggiehopley- thank you so much for sharing that. I have concerns about my heart - like most do, I’m sure - going into this. I’m 40, and am in good health, but I have a terrible family history of heart problems. I don’t want to make it worse than it has to be. My mind plays up on me, wondering if by foregoing Carbo I’m making the wrong choice, but I guess I just have to trust the standard of treatment.

I’m so glad it’s been effective for you. You mentioned your hair is thinner but it’s not very noticeable - that’s the same scenario another woman has shared with me. I’m hoping it will turn out like that for me too. Did you try tocold cap?

jh40

specialK - thank you so much for coming back to me with your thoughts. I hadn’t thought about the possibility of it being dislodged in biopsy. I do distinctly remember the radiologist who did the biopsy saying “Oh...the tumor is destroyed...” after his 5th pass of it. I thought about that for weeks after, wondering what that meant for me. So what you said makes a lot of sense in relation to that.

The single cell was in the first lymph and found on IHC. Assuming it was sliced thinly enough I’m sure more would have been shown in the slides if they were there. I was appreciative of the fact that the pathologist made the effort to make the distinction of there being only 1 as well, rather than just noting something more vague. The second node showed nothing at all.

My onc said the same thing that you said about the chemo hopefully knocking anything rogue out. Will I get a PET scan at the end to have some indication of success? Would rogue cells show?

maggiehopley

jh40- I did not cold cap, as the time and expense wasn't worth it to me. I am icing my hands and feet (I bought the NatraCure socks and mittens from Amazon) and they have been very effective at preventing neuropathy. I wear thin socks and cotton gloves (gloves from Walgreens in the medical section) because I couldn't tolerate the cold without them.

ElaineTherese

jh40,

It's unlikely that you'll get a PET scan at the end of treatment or that it would show any lingering cancer cells. Such cells are too small to be detected by scans. Also, PET scans produce all sorts of false positives. Three PET scans showed something on my right femoral neck (hip), but when MO ordered an MRI, there was nothing there. My next-door neighbor cracked a rib, which was detected by a PET scan, but it wasn't cancer, just a cracked rib. Unless there are symptoms of metastasis, MOs typically don't order PET scans.

jh40

maggiehopley - thank you for that info about the Natracare socks! I’m considering getting those. I’d seen some other ones on Amazon that look like a gel ice pack that looks like a space boot, but the Natracare looked softer.

elainetherese - this is good to know about the PET scan, especially the false positives. Goodness knows that’s gotta be stressful.

Side note - my oncologist prescribed me Compazine? Anyone have any experience with this? I’m wondering if he is avoiding the Zofran because I can’t take steroids? I’m seeing that Compazine can cause some anxiety and jitters.

SpecialK

jh40 - my oncologist prescribed three anti-emetics for home use, in addition to the infused one (Aloxi) that was a pre-med before chemo. The order for them was first Zofran, then Compazine, then Ativan. I was to start with the Zofran, if it didn't work I was to move to the Compazine, then if that didn't work, the Ativan. They can be used one after the other as they work by differing mechanisms. I am the unusual person for whom Zofran is useless, and I get the crushing headache from it as well - I vomited/dry heaved despite taking it before I experienced any nausea. I then took the Compazine and it was excellent for me. From that first round on I just took the Compazine and had no problems.

jh40

specialK - thanks for that. I take Ativan currently as needed for anxiety and I’m told it works as a good anti-nausea drug although I’ve never used it for that purpose. But it’s good to be familiar with it. Zofran I had after surgery but only one time. Didn’t have any bad reaction to it. I’m glad Compazine worked for you. Some things you read about it vary widely - people either have no trouble, they feel jittery and anxious, or they’re having full blown, terrifyingpanic attacks. I guess everyone is different. Hopefully it will work well for me.

jh40

hi again!

met with a 2nd oncologist today. she recommended the carbo with the taxol and perjeta. she didn't really give much explanation as to why this would be better than weekly taxol/herceptin only. i almost feel like i need a 3rd opinion now. i asked her for some data/studies showing how it would be more beneficial for my situation and she said she'd get me the info, but that i have to keep in mind that they would include a cohort of stage 2 and 3 patients as well. does anyone have any studies on this? it was my understanding that weekly taxol is effective? the first oncologist i saw said that it was, and that i could do carbo if i felt i wanted to throw the kitchen sink at it.

she also said that i have a seroma near my armpit, and said that she hoped it would resolve on its own because draining it usually causes them to return. i'm a bit concerned about this getting exacerbated by a port placement. anyone have experience with this?

1946Taco

jh40 - The second opinion is definitely harder to do. I'm surprised at it, frankly. Depends on other variables - like your age and whether you "want to throw the book" at it. I did just Taxol and Herceptin - so called, "chemo lite." and am coming up on six years cancer free.

I loved having a port (if you can love anything about cancer.) They put it on the opposite side as my cancer breast. I was superstitious about taking it out but MO assured me that she didn't think I would need another one.

Whatever you ultimately decide, I encourage you to join a group "starting chemo on _____, 2022. My group started a private Facebook page and still keep in touch.

I know that you have had a lot of info thrown at you and it is hard to process but it sounds as if you are doing your homework.

ElaineTherese

jh40,

1946taco is one of the several participants on BCO.org who successfully did the Taxol regimen. There are studies which show its efficacy, though I don't have the citations at my fingertips right now. I did Adriamycin + Cytoxan and then the Taxol X 12 + Herceptin + Perjeta, and I can tell you that THP was way easier than AC. THP did give me diarrhea, but I managed that with Imodium. The other annoying side effect: it made food taste unpleasant. However, there was far less chemo brain than on AC, and I was able to work through it. Keep asking questions and decide what's best for you! Good luck, whatever you decide.