TRIPLE POSITIVE GROUP
Comments
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Hopefully2020- sounds like you had a very informative visit with MO. I suggest you have someone listen in when you have the call from the nurse. Most of us do fine with the Herceptin, overweight and all. But heart problems is a possible SE and the echo regularly will help check for it. The other indicators of heart problems were already talked about. Most important thing is to keep the lines of communication open so if you are concerned about what's happening you have someone to talk to about it.
Good decision to get a wig now if that is the route you are taking. Seller can see what your hair color and style is now. I had several wigs but was most happy with a hat or scarf. What I missed the most was my eyebrows. Wished I'd had permanent make-up before started chemo but I imagine it would be hard to find someone to do it now.
Neuropathy can make you lose feeling in your extremities. Mine, however, was extremely painful. But don't get ahead of yourself. It will feel like a long year but you have many years ahead of you.
The other advise I would give you is to "ask for Help" and take it when offered. You will have several days each cycle where you will really not feel well. If someone says, "what can I do", have a list. Let someone prepare a meal to drop off, drive you to chemo, etc. If you are working, discuss your need for down time with you manager or Human Resources person.
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Just some random comments from my experience. I was told early on that yes, TP is a more aggressive type of tumor but the outcomes are better, specifically because of Herceptin. And the SEs for Herceptin are nothing like chemo but my words of warning are that, at least for me, they weren't zero. I had really upped my protein intake through chemo, which really helped *a lot*. In fact, my MO told me I was the only chemo patient she'd see who was actually making blood through treatment. I cut back after chemo and after a while began noticing that on Herceptin days, I felt a little woozy on the drive home, almost as if I'd been drinking. From then on I made a point to eat red meat the two nights before a Herceptin infusion and it made a huge difference. I also did the whole year without a port. My MO wanted me to try IVs and that would have been my preference anyway. Her thought was it's just one more surgery, one more scar, and only to get one if the IVs didn't work out.
Hang in there. I can also tell you that, as I'd read in many places on this site, your hair will be pretty much back to normal about two years after you finish. Mine's looking pretty damn good!!
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I had long thick curly hair, and was freaked out at the thought of losing it. But, I looked kinda good bald! And people at work didn't know I was wearing a wig (including some I saw daily who knew I was going through chemo!) which blew me away as it seemed so obvious to me! Now my hair is short and yesterday I dyed it super-saturated teal blue
It is a temporary color, so will wash out over a week, but something I always wanted to do per-chemo but was afraid of having to wait for it to grow out with my long hair if it wasn't as temporary as advertised. So, none of this is what any of us would have chosen for ourselves, but we get through it one day at a time.I am off to my infusion now, and DH just said to me how easy it is for me now going to infusions. Part of it is that it is just a much shorter day now, but also just knowing what to expect makes it a ton easier. Though I did just run up and down stairs about a million times because I forgot things like -- the temporary tattoo eyebrows that I never used but someone else might want (I drew mine on and it worked great).
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Hopeful2020 -
I'll jump in say that I'm in the middle of treatment - I was diagnosed with TPBC in March 2020, started chemo in April. Did 6 rounds of TCHP. I had some pretty intense diarrhea with it, and it was due to the taxotere. They reduced my dose for the last two rounds and that helped immensely. I had surgery in August - I opted for a double mastectomy, no reconstruction. I wanted as much breast tissue gone as possible. I had an over 99% response to the chemo, so I have stayed on Herceptin/Perjeta (rather than being switched to Kadcyla) after surgery. I have no side effects from just the H/P so it's been pretty easy. I will continue through the spring. I did not do radiation, after much research, because I had a mastectomy and because of my response to chemo. My MO agreed with my decision, so now I'm just finishing my infusion treatments and deciding about whether or not to go on an AI. Chemo is no joke - and it's hard. But it was SO worth it. I don't regret that decision at all, and I'm also very happy with my surgical decision. Happy to answer any questions you may have - we're all here to support each other.
Kris
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Anna - I had constipation and diarrhea on TCHP (sometimes within the same 24 hours). When I switched to HP only, I wouldn't say i had diarrhea, but things were very loose. It didn't disturb my life. Now I'm on Kadcyla, which slows me down a bit, but I can still keep things moving. It's crazy how these different medicines do a number on your GI.
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Thank you so much to each and everyone who replied. You are all so nice and are giving me great support. Good to know most people haven't seen huge issues of cardiotoxicity with Herceptin.
My port is going to go in on Tuesday. They are waiting for insurance to respond and then will start. So likely week of 30th I will start the chemo cleanse!
How were your experiences having the port for 1 year? Is it difficult to maintain? How does it not hurt? Does it come in the way of doing things? I was told I would be given the twilight sedative.. and would need about 4 hours for this!
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I don't think the surgery was long, I think 3 hours although including prep, surgery, recovery. I had to take a chest x-ray before I was released to make sure it was placed properly.
My BS loaded me up with drugs, I had my port placed on a Friday and, didn't feel any real pain. I was a little sore on Sunday but, Tylenol did the trick.
The port itself doesn't hurt and, doesn't limit me doing things. I used to use the lidocaine cream for port access but, now I don't even bother.
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Hello everyone, I was just diagnosed yesterday with triple positive IDC. I am 34 years old and I have four kids between the ages of 3 and 11. I found a lump while doing a breast self exam in September. On ultrasound, it was measured 1.7 x1.6x 0.9 cms so maybe less than 2 cms, maybe more. Some of my biopsy came back as DCIS, will that affect the final size measurement? Does only the invasive part count?
I live in the far Northern Canadian territories so sometime in the next two weeks I will be flown out for an MRI, genetic testing and surgery. I have only met with a general surgeon here in my home town who isn't too familiar with breast cancer but now she is no longer my doctor and I will be under the care of a team of doctors at the cross cancer institute in Alberta. I am meeting with an oncoplastic surgeon by Zoom on Monday. It sounds like they believe I am a good candidate for breast conservation surgery and radiation. The general surgeon I met with yesterday said that I will be taking tamoxifen and herceptin but maybe not chemo. This doesn't sound right to me. I think maybe the team in Edmonton said no neoadjuvant chemo? They are definitely talking about surgery very soon. That sounds like maybe a normal practice for tumours less than 2 cms and no apparant lymph involvement. Does that sound right?
What questions should I ask? My mom is already pushing for me to demand a bilateral mastectomy. I'm not against it but at the same time, I'm not going to have one just because my mom says so. I want to make an informed decision based on studies and not emotions. Can you share any resources I can read about to prepare myself for this meeting on Monday and inform my decision making.
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Hi Redcanoe, and welcome. I am sorry you have found yourself here in our club, but this is absolutely a great place to find information and support.
The recommendation for chemo first vs after surgery is generally made based on size of the tumor and if there is any suggestion of spread to lymph nodes. So you will know more after the MRI. The uncertainty is so hard! But for those of us who are not BRCA+, the outcomes longterm of mastectomy vs lumpectomy + radiation are basically the same. I chose lumpectomy, and that was the right decision for me, but some people feel strongly the other way, and mastectomy is right for them. It is a very individual decision.
Right now, focus on breathing, and getting rest and taking care of yourself. The whole journey is one day at a time, as hard as that is!
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Agree with YesIamaDragon - I am very new here myself. Lump seems to be a lump regardless of whether DCIS is there, if IDC is present. My surgical pathology report said 70% DCIS but it had a whole bunch of other things like lobular, IDC, ADH, ADL.
I just had a lumpectomy and decision was based on age, tumor size, BRCA status and personal preference. I just didn't want to deal with the recovery process of mastectomy at this moment when I still have to go through the chemo and radiation. Maybe once all treatments are done, may consider an oncoplastic reduction later when I have more time to deal with this. You will need to make the decision that is best for you. You could avoid chemo if not Her2+. I say this because before surgery I was all set for a plan for no chemo because was Her2- and my MO told me that chemo would come into picture if Her2+, oncotype score is high, tumor is big and more than 3 lymph nodes were involved. But after surgery, my tumor was Her2+ and that changed everything with chemo now being the next step.
The most important thing for me is to find a good hospital with doctors who are all on the same page.
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welcome redcanoe sorry you had to join the club.
DCIS and IDC are rated separately. You will get dimensions for both.
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Thank you so much for the replies! This is all new to me, I have lots to consider
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Remember, you don't have to make those decisions today! And you shouldn't, until you and the breast surgeon have a chance to go over the MRI results.
Also, there is lots of information on this site, but take everything we say here in the community with a grain of salt -- we know our own experience, but everyone is different!
I am so sorry you are in a place where you can't get treated locally, but you know you are being flown to a place where the experts are. Line up your support now. Like others here who recommended it to me, I found CaringBridge useful. I didn't use it as much as others but it was nice to be able to put up a list of my needs and let people volunteer. That way I didn't fear overburdening someone who felt they couldn't say no if I asked directly.
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Happy Saturday? Hi Everyone -- I have a question about Perjeta. I'm on day 6 of my first cycle of TCHP and I've had nonstop uncontrolled diarrhea for several days. Nothing has helped -- tried OTC remedies like Immodium, binding foods, natural remedies -- and everything I eat seems to go right through me. I've read that Perjeta can be the main culprit for this on the HER2+ protocol, so my question is this: have any of you had this issue and have you spoken to your doctor about eliminating Perjeta for a cycle of two to see if helps? The nausea has also been terrible but at the moment, the diarrhea is far worse. It's to the point where I can't leave my house for fear I'll have an accident. Thanks for your insights.
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i and the Perjeta poops for all 6 cycles. I was going through Immodium like crazy and having no effect. I ended up getting a prescription from my MO madr a huge difference.
Now, I'm on Kadcyla and get constipation 😂
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Unfortunately there are several culprits for the Big D in the TCHP cocktail. I did not have Perjeta but had issues with just the TCH - I spent the first 10 days after infusion pretty close to home, and definitely didn't wear white jeans... it could really be any of the chemotherapeutic agents or targeted therapies. Be careful about dehydrating, it might be worth going into the infusion center for a bag of fluids if you are still having issues, and definitely let your MO know about this now, don't wait until your next infusion. It may be that you need prescription strength anti-D meds also. That said, you may see this calm down after the first infusion because you received loading doses of everything - the subsequent doses you will get won't be loading, so side effects may be less marked. I relied on BRAT diet foods, but didn't need any dose reductions. Good luck!
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Thank you everyone for your replies.
Another question I have: I had an ultrasound oct 1 and thats when I found out I had a very good chance of having cancer. My lump was under 2 cms. I had a biopsy shortly after that came back discordant so I had to have another biopsy at the beginning of November. A couple days before my second biopsy, a lot of new lumpiness appeared overnight, because I was checking everyday. I got my period right after and they checked my whole breast with the ultrasound wand and didn't see anything. It seemed to get better but not totally. Now it feels like a lot of my affected breast feels like I have multiple lumps that feel like the first lump. Can things change that fast? I have an mri next week and if my stage hasn't changed, a lumpectomy right after. I think it has changed maybe.
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RedCanoe -- Yes, lumps and bumps and tenderness will wax and wane with the menstrual cycle, and you have have had significant deep bruising from the biopsy as well, which can pull fluid into it as the blood cells degrade so actually swell more. But you will know more very, very soon!
Try to not let your mind spin too much until then (believe me, we ALL know how hard that is!) It sounds like you are in good hands at the referral center.
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thanks yeslama. I wrote that during a period of intense anxiety and now that I feel it again, it doesn't feel all that different. The second biopsy was pretty rough too.
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hi there just found out today I’m a triple positive with mucinous pure carcinoma. Apparently rare any others out there? Was scheduled for mastectomy now about to tackle 7 rounds of chemo first.
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welcome to the board dingleyhill. Sorry I've never heard of your type of cancer. There is an article on BCO about it.
https://www.breastcancer.org/symptoms/types/mucino..
Best of Luck!
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Redcanoe -
I wanted to echo what someone else said about choosing mastectomy vs. lumpectomy. It's SUCH a personal decision - and there is no right or wrong answer. Your doctor will let you know after all tests are done if you are a good candidate for lumpectomy. I encourage you to do your research about all options - and talk to other women who made all different choices. That was so helpful for me in my decision making process. Something will resonate with you and you'll know what's right for you. I opted for double mastectomy with no reconstruction. I only had cancer in one breast, but it was pretty aggressive - and I wanted the peace of mind knowing that I had removed as much breast tissue as I could. In researching all the recon options, I knew right away that I didn't want implants, due to the possibility of breast implant illness, and the fact that implants have to be replaced every 10 years or so. I thought I would do a DIEP flap initially, but once I understood the process and the multiple surgeries involved, I decided that was not for me. Again - everyone is different and this decision is VERY personal. I was a candidate for lumpectomy because I had an over 99% response to chemo, but I just knew I would be less worried if I did a mastectomy. I'm very happy with my decision.
Ask lots of questions in this group - everyone is so helpful!
Kris
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I thought this link would be helpful. Beesie wrote it and I've never seen such helpful information.
Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX
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I have a question about staging for triple positive: How did you all get staged?
My MO basically said "we don't even bother with stages anymore since there are so many permutations", but the studies all seem to be based on staging. For example, I am on Kadcyla, and the KATHERINE trial data is all broken down by stages, but it doesn't seem to say anywhere what staging system they used. And I see many people on here were giving staging info, and some even got restaged after chemo. I don't even really know what size my initial tumor was, because there was so much discrepancy between the ultrasound/mammogram and the MRI< but the MRI was after biopsy and I had a lot of bruising (my surgeon thinks it overestimated size because I had such a big hematoma there)
I mean, I keep trying to tell myself it doesn't matter, because either it comes back or it doesn't.... but I do keep wondering!
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Hi All,
It has been years since I have been here, 2016 to be exact. That is when I was diagnosed with triple positive breast cancer and underwent lumpectomy, sentinel node removal and then 15 months of chemo/radiation. I had clear margins but a very small amount in the one node that they took.
Fast forward (through years of weight gain, joint pain, fatigue, chemo brain etc.) to now and I have been experiencing very bad vertigo for 2 weeks. It is difficult to drive or even walk at times. It was preceded by a few months of dizziness and blurred vision. I'm not necessarily "scared" but certainly concerned about brain mets. They cannot get me in for a brain MRI until January.
Looking for similar experiences with vertigo and subsequent diagnoses, I can handle the truth if it was related to BC mets. One thing I am thankful for on this journey was the gift of being able to accept my fate and live without fear of dying.
Blessings and Light,
Noelle
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Hey Noelle,
I was doing some research and looking in the brain Mets forums and someone mentioned that the same thing happened to them and it was vertigo. You may want to check those forums out0 -
Noelle,
Here is the link to the Brain Mets thread:
https://community.breastcancer.org/forum/8/topics/777599?page=250#post_5617151
Of course, other things can cause vertigo. My husband got it after contracting an ear infection! Good luck!
Yeslama,
I never really got staged. My tumor was supposed to be 5 cm + a lovely satellite friend. One node tested positive with a fine needle biopsy, but we don't know if any others were compromised. After chemo, all the active cancer was gone. So, we'll never know for sure if I was Stage IIIA or what. I don't worry about it; with neoadjuvant chemo, someone's "true" stage may never be known.
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Staging was done by BS for me. The post surgery lump by pathology showed 12 consecutive sections of 0.4cm and so 4.8 cm and with one node showing metasis I was staged pT2N1 as Stage II per the guidelines T2 is for 2-5 cm and 1 axillary node positive. I asked about A and B but she seemed to indicate just Stage II is fine and there is no need to go into it - the treatment stays same maybe?
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My clinical staging was 1B. My pathological staging after surgery was pT1N0, so Stage 1. The breast surgeon kind of acted like the A and B doesn’t matter much either.
I think clinical staging is probably a moot point since you don’t really know what you’re dealing with
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for all with staging questions - keep in mind that the studies for most of the drugs early stagers now receive are based on original studies for stage IV patients, that then are looked at for early stage patients, but that these studies are often older information because of the length of time involved with studies and follow up. While we will soon see COVID vaccines with very fast trial times, most drugs go through a lengthy FDA approval process. It is an 11 year average for first approval, with some drugs used in original populations having a shorter approval process for use in other populations, i.e. the same drug used for advanced stage to use for early stage. For example, Perjeta was first approved for metastatic patients in 2012 after five years of study - so initial study commenced in 2007 - for early stage neoadjuvent use only (6 infusions) in 2013, but now for both neo and adjuvent use in 2017. So much has changed with the order of treatment for triple positives with the advent of newer drugs that staging has become a slippery slope due to neoadjuvent treatment recommendations for those with tumors greater than 2cm, or those with smaller tumors but positive nodes. For those who image really well, and/or who know they have positive nodes proven by biopsy prior to neoadjuvent treatment, clinical staging is more clear. Those who are thought to be node negative with smaller tumors still have the option of surgery first, so staging is pathological, and systemic treatment then takes place with the possibility of single agent chemo and Herceptin only. The decisions hinge on treatment order, regimen choice, and additional adjuvent treatment options based on post-surgery pathology. For triple positives we know that we will receive chemo, with targeted therapies, and anti-hormonals pretty much regardless of staging info. Regimens, recommendation for radiation, and type of surgery seem to be the decisions points. For me, even though I had surgery first because I was treated prior to the approval of Perjeta and the advent of neoadjuvent treatment for larger or node positives, my clinical staging was not accurate. Tumor size was pretty close, but my positives nodes were a total surprise - never palpated despite larger size, and didn't show in the MRI at all even though the imaging size threshold was met.
noelle - I experienced dizziness as well, and of course my initial thought was brain mets. After a stat head CT it turned out to be SSHL - Sudden Sensorineural Hearing Loss, but I was actually kind of unaware of the hearing loss part initially. This is something that needs to be treated with speed to try to reverse the hearing loss, so if you feel any kind of diminished hearing - usually on one side only - see a doc pronto. I had episodes of dizziness, but they didn't last more than a couple of weeks so I didn't pursue getting it checked until I experienced what felt like water in my ear after a shower. I now wish I had had it checked earlier because I have one-sided deafness to human voice that did not respond to large doses of steroids and anti-viral meds. This is related to chicken pox and shingles, so it can happen to anyone.
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