TRIPLE POSITIVE GROUP

SpecialK

deni - I know it is hard to be patient, but PT can really make a difference - a slow one, but a difference nonetheless! Hoping you see some progress soon. Has there been any discussion of using a compression tank or t-short to assist with possible breast/truncal LE?

suburbs - ugh on the continuing infection issues. I struggled with very slow skin healing, but never had an infection. I am super glad about that because I am allergic to most antibiotics - does your ID doc feel like this drug is helping? Just a slow process?

elainetherese - will you be on a summer break or are you teaching? I have degeneration at L3/4/5 and sitting is my worst position. I have used both those stick on heat pads and also stick on lidocaine patches and they have provided relief short term.

ElaineTherese

SpecialK, I'll be on summer break, though I'll be in the office in the mornings for administrative stuff related to being Director of Undergraduate Studies. My daughter has some of those heat pads left over from a back scare. After tonight's 4-hour commencement ordeal, I am looking forward to sticking one of those on my back.

kae_md99

Special K,will fat grafting make your tummy tight too?i am curious...

SpecialK

kae - not in my experience. I have had the abdomen used twice as a donor site, the first time quite a bit of fat was harvested, but I didn’t feel that my stomach looked appreciably different and was not tight, and I’m just under 5’3” and maybe 125 lbs. Are you wondering about doing fat transfer for complete reconstruction, or using fat grafting to correct defects

Suburbs

Hi SpecialK. I second the notion of the benefits of PT. It's important to find the right therapist. My therapist has been an integral part of my recovery. Someone who specializes in treating BC patients has gained knowledge about the myriad of side effects we deal with everyday. And definitely you have to keep at it to obtain the long term benefits. I have a colleague with BC that gave up on PT due to doctor, appointment, and treatment fatigue. Of course, we can all relate to that.

Deni1661, hang in there and the TPers here will keep up our support. :

ElaineTherese and SpecialK and deni1661, thanks for thinking about me and my demon infection. I am allergic to many classes of antibiotics so this does not help. My infection appeared to resolve itself and then I had stage two surgery for Diep reconstruction and eventually the demon mycobacterium was identified. Cultures take a long time to grow and the susceptibility studies take even longer. My soft skin infection had developed then redeveloped the same abscess twice. Fast forward, I have been on a two antibiotic regime and it seems to be slowly improving. My infectious disease doctor is brilliant and I feel confident we will beat this thing together. I had immediate reconstruction 5 weeks after my last chemo, like crawling to the finish line.

Searching here on BCO (this site is a godsend!), I found one other patient with the same type of infection which took 14 months of treatment. My doctor thinks we will do better. I try to say to myself that if I had had delayed reconstruction, implants and expanders, the time frame would be the same. That keeps me going.

Happy Mother's Day to all.

kae_md99

Suburbs, hang in there!

SpecialK, i am thinking of downsizing plus fat grafting maybe.. i am afraid too that fat harvesting and transfer will flare up my very very mild LE...also will fat contribute to heaviness of implant?and how long should the binder be worn?

coachvicky

With Sunday approaching, Happy Mother's Day to all.

We've lived to see another Mother's Day!

Vicky

PoseyGirl

Does anyone know how I can email BCO? I can't find an email address anywhere

HI MODS: TRYING TO DONATE HERE, BUT MY CARD IS DECLINED EVERY TIME. TRIED MONTHS AGO TOO...I'VE USED TWO CARDS TODAY, BOTH OF WHICH I KNOW ARE OK. CAN YOU TELL ME WHAT MIGHT BE GOING ON? I GET AN INSTANT MESSAGE SAYING MY CARD IS DECLINED. IT'S LIKE NO ATTEMPT TO PROCESS IS EVEN TAKING PLACE. I WOULD APPRECIATE SOME ASSISTANCE...THANKS! USING CAPS SO THAT THIS STANDS OUT FOR YOU

EmbracingToday

Hi,

I've read a lot on here but only posted few times. I need your support and help. My onc called me yesterday with bad news. Here are my details. I did the 12 weeks of taxol, and finish my 4th round of AC this week. Radiation was planned to start about 3 weeks after this. I had a bilat mast with recon in Dec 2017.

She called me yesterday and went on to explain that she was looking through my chart and pathology reports. She found a path report from late December that she says she never saw or received. {I'm ER+PR+Her2-} And, this is what I've been treated for the past 5 months. She said one of the path reports says that my tumor is actually Her2+. So, this means that I should have been receiving Hercepin along with the 12 weeks of taxol. My surgeon and my oncologist missed this particular path report. This path report was never reviewed for the past 5-6 months!! No one did anything about it!!

I'm going in first thing Monday morning to discuss with her. I'm shocked & devastated!

I'm just like WHAT? How did/can this happen? I know there's human error. But, this is my life! The studies indicate that I would have benefited from receiving Herceptin earlier, my percentage at survival would've been better!! I have 3 kids. I need every percentage in my favor, and this was taken from me. And, now I can't go back. I have so many feelings right now. I don't know what to do or think.

I'm asking for help and guidance with this situation. I don't understand what this means for me. Is this even bad news? How do I go forward? I'm so thankful that she came forward and didn't just sweep it under the rug. But, I'm devastated at this news. Do I continue with my team of caregivers? I still have so much care left. What are my rights?

Tuesday, May 15th is my last chemo. And, also my birthday. My family has a huge party planned for me that evening for my end of chemo. Such a blow, I'm just in shock that this just happened.

Please help me with any thoughts or advice.

Thank you so much.

ElaineTherese

Ugh. How angry are you? Are you sure you can continue to work with this team of doctors? That was my first thought after reading your story. If you're seriously perturbed, you might want to shop for a new team.

You can do the Herceptin now; that's not a problem (though you should go for a heart scan first to establish a baseline). I just wonder whether your doctors would recommend that you do more Taxol. You can do an endless amount of Taxol (some Stage IV ladies do weekly Taxol for months on end), so that's not a big deal. It just seems cruel to put you through more chemo after you already did AC X 4 and Taxol X 12.

Being HER2+ isn't great news, but it isn't the worst. The good news is that there are targeted therapies for us like Herceptin and Perjeta. Treatment is longer for us; most of us do a year of Herceptin after chemo. ((Hugs))

KasiaK

tld2017 - I went through 6x taxotere + carboplatinum + herceptin in 2017, then (november 2017) 6 weeks of radiation, continuing herceptin in the meantime (I still have 2 shots to go), started tamoxifen and reseligo (generic zoladex) also in november. I'm in Poland and unfortunatelly Perjeta wasn't available for me. So far I'm doing fine , not too many SE but can't wait till herceptin ends. Rads were not too bad, time consuming (I'm 3,5 hours away from treatment center so I had to stay at a hotel during radiation), I was sleepy, cold and tired all the time but my skin wasn't damaged, just got a bit tanned. How high ER and PR positive were you? I was 90 % ER+ and 95% PR+ (or the other way around, I don't remember) , I hope this is in my favour as well as being G1. Good to know I'm not the only one TP G1.

coachvicky

EmbracingToday

I understand. Only after a staff member at the pathology office that did my reports took pity on me did I ever get all of the full reports. Most likely your MDs are looking at scanned in faxed copies and they are not always complete.

So ... this has happened. I am very sorry. Yes, the medical people we encounter are human and are expected to be competent. I hope you are preparing for your "come to Jesus meeting" with your Oncologist. I would urge you to have a line to keep repeating such as "Could you explain in a little more detail how you missed this?" (I'd probably add comma a**hole to the end of the question.) Your Oncologist has to understand that something is flawed in her approach to treatment. Repeating such a line helps me to stay focused and it gets the person I am asking to dig deeper into the situation.

The good news is that your did receive chemo.

I would ask / tell:

for your complete HER2- and HER2+ numbers from ALL pathology reports. You can make a list of your biopsies, lumpectomies, and mastectomies by date and make her give you every number.

for the statistics of women in your situation where Herceptin was delayed.

for her detailed and complete action plan going forward.

insist on your heart scan ASPA as Elaine wrote

your Herceptin will run 30 minutes or longer. SpecialK can weigh in on this.

Take someone with you to make take notes. Don't try to do this on your own.

Also, as Elaine wrote: Do you really want to continue with this team? Can you trust her / this team with your life? I would probably ask. "Why should I trust my future care to you?"

Finally, report this to the CEO or COO at your treatment facility. Also, report this to your Medical Board. You cannot let this happen to another person under her care (or in this case, lack of care).

I know this is a shock and you are pissed. I will add you to my prayer list.

Vicky

PoseyGirl

Hi Embracing...

To receive news about your bc that has just been sitting there would feel like a fresh new assault. Almost like a deep violation. I am shuddering thinking about this, as we expect that our cases are deeply considered and dealt with with the utmost thoroughness. I believe that this is the greatest hurdle you have and I would be emotionally devastated too.

There's nothing I personally could add to the above mentioned advice - great feedback from the ladies. I didn't know that there was a substantial difference between concurrent versus adjuvant herceptin. You are properly poised to request a complete review of your case (by a new team if you choose) and you do hold the cards here. If this meansa few more taxols alongside herceptin, I’d do it.

You will come through this distress, but your sense of safety with the medical world has been shattered right now. This on top of the original trauma is brutal.

SpecialK

posey - here is a link for you to PM the mods. All I did was type moderators into the search box on the member list at the left margin of the page.

https://community.breastcancer.org/member/56097/profile

kae - the difference between an implant and a smaller implant plus fat grafting is that if you graft over the whole implant to add size you get a warmer and softer feel, but the weight is very similar. I would also say that not any PS should attempt this as fat can absorb irregularly across the whole area so your aesthetic result may not be as good. You need a PS who does this type of recon regularly. I wore the abdominal binder for 8 weeks, no gym. I could walk but restricted lifting. As far as LE, anything can happen - but I have had 12 surgeries, including 5 fat grafts, since being diagnosed with LE, no problems. I have also had a MOHS surgery on my LE arm and had a crushing injury, SUV hood fell on my hand, that actually happened during a flare and it didn't make my LE worse. If you discuss surgery with your PS, be sure to mention your LE concerns.

Embracing - I'm so sorry you are in this situation. Did you have multiple pathology reports? Which report did the discordant Her2+ appear on? My pathology reports come from the hospital pathologist's office to my private oncologist where they are then scanned in and are time stamped at receipt. I would want to see that on your report to help determine where the communication breakdown occurred. I would definitely ask how a report gets into your file without review by either of your physicians - the surgeon who ordered the pathology to be done, and the oncologist who determines systemic treatment based on that reoort

YYC_Girl

So still reeling from the surgical follow up yesterday....

My annual mammography in March showed "unusual structure" which led to an ultrasound with a "less than 1cm" mass that required a needle biopsy, to the "need for lumpectomy" to remove <1cm IDC mass. But yesterdays follow up with the BS and a read of the full pathology shows_Triple Positive, node involvement, 5cm mass removed and a need for a resection or possible mastectomy. It appears that the IDC mass was surrounded by a large DCIS, with additional zigots appearing in the margins! CT and bone scan required this week with a oncology consult in 10 days time to discuss treatment plan?

I was just getting my mind untwisted from a "cancer" diagnosis, this_this is a new mind bend!

How does one get to that in just a months time? Is this the norm of diagnosis, or should I prepare myself that this is my "new norm"? Anyone else out there that had this multi-focal change happen during diagnosis? Anyone else that has walked this road that can calm the storm with words of wisdom? Anyone just starting on this type of journey?

Steady forward on an ever changing tide.....I will keep those words in mind for this journey that seems to have been forced upon me.

So thankful for this amazing support site.

hapa

YCC - I also have multi-focal tumors, four (I think) tumors plus an area of nonmass enhancement (whatever that is) in my right breast. I haven't had surgery yet so there's no telling the complete extent of what's going on in there, but I think a lot of triple positive women have multi centric and multi focal cancers. I don't think you can say for sure that this all grew from a 1cm mass in the last month; it could have been there and just not visible on imaging. That probably doesn't make you feel any better, sorry. My original diagnosis was for a 6cm tumor with lymph node involvement, and that was changed to a 3cm tumor with lymph node involvement, and that was changed to multifocal with a 3cm primary tumor, three satellite masses, and an area of non-mass enhancement, and THAT was changed from Her2- to Her2+ about three months into treatment, which was such a heartbreaking setback as I had to start all over with neoadjuvant treatment. So yeah, you're not alone on this rollercoaster.

Best of luck to you, sorry you had to join us but there's lots of support here.

Taco1946

I am still sitting here with my mouth open with two of you reporting problems with diagnosis. I am so sorry. I certainly would have trouble putting much trust in that medical team.

My HER status came in late too but not nearly as delayed as yours - I'd already had lumpectomy and brachytherapy before I got the final path report. Needing chemo threw me more than the initial diagnosis. I had trouble with taxol but none with herceptin alone although I know some people have. It just added to the hassle and time needed to finish the treatment.

Stay close and scream when you need to!

PoseyGirl

Hapb, I’m asking this very question too. We’re hearing two or more ladies state this very thing. It truly makes me wonder if I can trust my initial biopsy results. If a report can say her2 negative and then it’s positive, how...??!!! SpecialK, surely you know why this happens!

P.s. thanks for the info on how to get to the mods...

I have much to catch up on, but I do need to say to Shela...that looked like a wonderful place you went to with friends. How was that weekend??

Kimcee, I’m so sorry that you are not happy with your reconned boobs. What exactly is it that makes you unhappy with them?

coachvicky

YYC_Girl

Welcome to this forum. You will find an abundance of understanding and support among the Triple Positive Women.

There is a line in one of my original Oncologist's notes that reads in part: "I spent almost an hour with her and her husband. They seemed shocked she would need chemo." At this point I had already had my mastectomies. Yes, we were shocked as was my Surgeon.

I think sometimes Cancer-treating Medical People get so accustomed to the lingo and sprouting off a diagnosis that they forget the human side of how a person deals with hearing the word "cancer."

I am unsure if I have words of wisdom or not. I do know of many women who have received a breast cancer diagnosis. It is brutal to here. It is hard to make decisions when you are in shock. With all that being true, you will make this journey. You will most likely be different on the other end of this journey and that can be a good different. My hope is that one day you can look back on your journey being proud of your determination, strength, and resiliency.

Eat well, exercise, hydrate. Do a little something everyday for you. Go slow to go fast, i.e. don't let anyone rush you into a decision until you are ready.

Best wishes as you deal with this.

Vicky

kae_md99

special K, i am thinking to downsize even in weight. as the heaviness is my main issue. i dont know though if it can be done because i have nipple sparing..just do fat grafting to even out the edges maybe..

shelabela

Embracing, i would be very upset. So sorry you are going through all this, then to add in a mis read report. Totally not acceptable.

Posey, i had a wonderful weekend. That place was amazing. I didn't want to leave.

Happy Mother's day ladies! Life is awesome.

hapa

HapB and others - my original biopsy came back her2- (1+ on IHC), highly HR positive. I was put on a study to get neoadjuvant anastrozole with Ibrance. I had to do the anastrozole for 2 weeks first and they did another biopsy to check my Ki67. If that was >10%, and it was, I would get Ibrance added. All they checked on the biopsy was my Ki67. Then, a month later, I had a second biopsy to check my Ki67 to see if the Ibrance was working, if my Ki67 was <10% it was deemed to be working and I'd stay on the study. It was 10.4%, but they also checked everything else again, though I'm not sure why. This time, the IHC test for her2 came back 2+, which is equivocal, so they sent a sample for FISH testing which came back positive (ratio of 3.3). I assume IHC testing is the culprit here - a pathologist stains a sample and then estimates how much of the cell membranes turn color. If it's less than 10% you are 1+ for Her2, which is negative. If it's more than 10% you are 2+, which is equivocal. Three pathologists looked at my original slides and all agreed on 1+ so either that sample was less Her2 positive or the staining was done wrong, or the result was right on the border. FISH testing is supposedly more accurate, and my tumor is responding well to TCHP so I think we're on the right track now. Though I won't be terribly surprised if whatever tumor is left comes back Her2- after surgery (if there is any tumor left). I'm not mad at my care team, quite the opposite I think I'm lucky it was discovered before surgery. Also, the two biopsies were done in different places. The first one was done by some local imaging group who sent it out to some local lab, and the two study biopsies were done at Mayo. And the samples were taken from different parts of the tumor, so that may have played a part as well.

My % ER and PR positive also changed between the biopsies, from 96%/89% to >90%/~60%, fwiw.

Ingerp

I am so sorry to read all the troubling reports on this lovely Mother’s Day.

Embrace all I can say is I am not one to be judgey/overreact but I would change medical teams and let hospital management know. I honestly don’t understand how this can happen. My BS, RO, and MO all have my path reports, and I have multiple copies of most of them. This has got to be your medical team’s nightmare.

But I agree that what’s done is done. I was told before the full path report this time around that if it ended up HER2+, that that is a more aggressive tumor but also that outcomes are better, specifically because of Herceptin. I know it’s a blow to think about another year of any kind of tx but I’m sure you’ll get the probability bump you’re seeking.

Please please please still have (and try to enjoy) your big party. You *do* have so much to celebrate. Focus on that this week, and then start pre-planning an even bigger party for your next birthday. Hugs to you.

KimCee

Happy Mother's Day everyone...enjoy your day.

Posey...they look strange and they feel heavy, not normal. I am not even sure of the size, probably large A to small B. I could not imagine the weight of big ones. I also do not like the fat below my armpits. My breast surgeon said that breasts pull that fat forward where implants do not. Made sense.

Embrace...no excuse on that. So very sorry that you were misinformed. As the others said, I would definitely not just let it go. If it were me, I would most definitely switch MDs. Sending you a hugs.

As for me, I go back to work tomorrow. Still high heart rate, high blood pressure and out of breath. Echo came back decreased LVEF. I have had 9 Herceptin. Upset about stopping, upset about how I feel. I guess it is what it is.

hapa

HapB - my reports were read and done prior to treatment. I was considered Her2- based on those reports. Three pathologists looked at the slides, they all agreed on IHC 1+ for Her2. The positive report was received because I was in the study, not before it started. Were it not for the study I would never have had the additional two biopsies and would not have found out about my Her2+ status until after surgery.

I mean, I know it doesn't make people feel good, but all these IHC tests are just a guy staining a slide and holding it up to a standard and using his/her best judgement to classify it. There's a lot of room for interpretation, and there's also no guarantee your tumor is homogeneous.

hapa

HapB - no. From what I understand you only get FISH test if your IHC test comes back equivocal (2+). Mine was negative (1+) on the first biopsy so no FISH was ordered. It was the third biopsy that came back equivocal and once the FISH result came in my MO got me on chemo within a week. Still though, it scares the bejeesus out of me what could have happened in those three months with this monster aggressive cancer. There are varying theories on what happened - was the IHC not prepared correctly? Was it right on the border and just pushed over in the third biopsy? Is the tumor that heterogeneous? Did the cancer mutate in those three months? Who knows. But I've seen other women on here whose path reports changed between diagnosis and surgery. I'm not upset at my medical team because I don't think they did anything wrong, if they had gotten the result and just ignored it I'd be livid. And knock wood I think the Ibrance was actually working somewhat so I'll be OK even with the delay in getting chemo. Of course there is still the possibility that my first path report was correct and this Her2+ diagnosis is the mistake, but my tumor is shrinking on TCHP and that's much more important to me than getting letters to match up.

astyanax66

OK, not a medical doctor or anything (academic/Ph.D.), but I have Her2+ cancer. My IHC (twice) was negative, but FISH was positive. Did a ton of reading and talked to a researcher at MDA who worked on Herceptin. Over time, Her2 status can *change*. It can flip. It is a weird critter. My DCIS was negative for it, but IDC was positive. Go figure that one out. When I did Mammaprint etc., my subtype was not Her2, but Luminal B. Still, I think we can all agree, Herceptin or other similar drugs can be a life saver for Her2+ disease when used with appropriate precautions. I've done well with it. I get that it is not for everyone due to cardio issues.

This is all to say...Embrace, this stinks. You did not receive a quality standard of care. I am so sorry. I have some similar feelings (about sloppy medical care) because the local hospital missed my cancer twice--I was a pushy person who, thank heavens, got a second opinion that saved my life. However, after talking to an oncologist, maybe starting Herceptin now could still be quite beneficial. I think you've gotten good advice here, so I have nothing to add other than a hug and yes, jump on this asap, whatever direction you choose (new team or old). Like you, I want all those percents in my favor. I keep copies of every weeks' labs, all test results, and all my journal articles for the simple reason that I don't trust anyone completely but myself. I sometimes have to be pushy to get surgical reports--I don't care. I want them. I am a polite yet nosy patient. And it's been a good thing. The surgeon and oncologist are the subject matter specialists, but I'm the subject matter expert on my body. And even though I've gotten great care--I notice sloppy charting from time to time (nothing serious), and yep, I correct it. It's my life. Hang in there.

Dee

hapa

HapB - I'm out of the trial. On standard TCHP. The trial was for ER+/PR+/HER2- cancers, and I would have failed out of it anyway with a Ki67 of over 10% after two weeks with Ibrance. Once I tested HER2+, my MO switched my treatment. The TCHP is working wonderfully, I had shrinkage on the Ibrance but nothing as drastic as I'm seeing now. It may have been the Ibrance killing off the Her2- cells that tipped my IHC results over to equivocal.

YYC_Girl

Happy Mothers Day to all those Great MOMMABears in this community, each and everyone of us here is a MOMMABear!

Thanks coachvicky for your wise words and suggestions. I have posted them on my bathroom mirror as words of encouragement for the week.

I can't say enough of the HC professionals I have met so far through the testing and diagnosis of this beast. And I couldn't ask for a more encouraging NN and FD. I am the person who will ask the question, then ask again , and ask again if the info being given is not in language I understand. And I am that patient that writes everything down(just ask me for my yearly blood work analysis spreadsheet that goes back to 2004), double checks everything, and will use everything at my disposal, including the wwww(worldwide worry web). No fault at all with the medical system here in Cda. My mom and niece, have both battled this BC beast, and I have supported my Dad thru end of life recently so the medical system is not unfamiliar to me.

I think I have moved relatively quickly thru the system, less thank 8 weeks from mammography to post op pathology follow up. My cancer diagnosis was a surprise, and the ongoing expansion of the diagnosis, and therefore the treatment that is going to be required, it takes the mind a bit to catch up and the heart a little longer to accept. I just hope that the CT and bone scan don't expand this further. I realize now what my FD ment when she said I should be prepared for a year long fight! I am SO thankful for this site_community, I have creeped around for the past few weeks and see that members with similar mass/node/path diagnosis most often opt/had mastectomy and I think that may have helped soften the words when the surgeon spoke them the other day. Mastectomy was not an option going into the initial surgery for a <1cm mass. I think this IDC mass structure took the surgeon for a surprise(not something that is detected thru the tests given, or the biopsy). I think I have about 10 days before I see my oncology team, so that gives me time to gather my thoughts and information, put together the questions I have for the team...and mend my heart.

This is what it is, a fight to undertake. So I am off to fight another day!

Thanks again everyone for the guidance, positive thoughts and encouragement.

shelabela

A question for you ladies, a friend of mine has been diagnosed and her chemo treatment is different then what I've heard.

She has a picc and gets chemo for 3 days then 2 week rest then repeats. Anyone else have this type of treatment? She said she couldn't remember name of drug. (I know it would drive me nuts not knowing) Any thoughts?

Thanks