TRIPLE POSITIVE GROUP
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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
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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.
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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.
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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
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hapb yes breast cancer. She had a BMX first.
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Kimcee,
so that explains the lumpy feeling under the armpits! makes sense. my implants are heavy too and considering to downsize or just remove them altogether.sigh...
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For my diagnosis, It took three biopsies. The first a general surgeon did the surgical biopsy. Called to tell me it was only lcis tissue and to see an oncologist and take a pill. My NP (the little pitbull) best friend said nope, you are going to breast specialist and Im going with you. We interviewed two. The one I settled on ordered an mri. They saw something and decided the surgeon didn't get to where he needed to be. Probably would have if an MRI had been done first like I asked, but that is a whole other story, that probably should have involved a lawyer.
Specialist did an ultrasound biopsy. Told me all clear. Then the next day, tells me to come in because she talked to the radiologist and they didnt think they got to where they needed too. Finally on the third surgical biopsy, they get there and it is idc multifocal. Thank heavens for my NP friend. I called the other surgeon and let him have it also.
Then, I was told it is er positive and I was on the bubble for chemo given the size.
We go talk to interview the first oncologist who tells me that I am triple positive, need adriamycin, and two others for a long period because my ki-67 is also high. Apparently the FSH test had come back that afternoon and the specialist didn't realize I had been given information without those results. They didn't reach me so sent them to the doc I was going too. Needless to say, that was not a positive meeting. I then went to dinner with my husband and son, where I already couldn't eat, had a major meltdown, sent my adult son into a panic attack as I am bawling in the restaurant lol.
So, I get that errors can happen but Embrace, that is way too much. I agree with Hapb, I would get copies of everything and talk to a lawyer. One thing you have to do, and I tell everyone this, no matter what their medical condition, is be your own advocate. I taped most conversations, as it is amazing what you forget. Don't be afraid to ask questions and get in their face. And I would be at a new oncologist. I couldn't trust that person again.
Shelabela-I laughed when you said she didn't know what the chemo was. That is so far out of my realm of reality, lol. I am like special k. I received copies of my blood work every week. Pored over them. Have all the tests and results organized in a binder. I took it with me to an appointment when I had to choose another oncologist as my first one had suddenly passed away. He just chuckled and said we would get along fine. He and my late oncologist were very good friends and both research geeks having worked at the national cancer institute.
When our hospital affiliated with MD Anderson, I asked my very proper Indian oncologist, who was also the program director, if he was excited about it. He just sniffed and said what did he need them for, he was trained at the NCI. He was the best.
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Hapb-here's my story...I went to get my mammogram (on the same day I met with a naturalist doc to start hormone replacement therapy lol). It was a couple days before Thanksgiving. I got a call back the day before Thanksgiving to come up for more imaging. This was the Women's center at the hospital I always went too. Got the imaging, waited, waited waited. Was thinking something is suspicious when this radiologist walks in and says Hi, I think I am going to ruin your day. Told me they had seen something, probably nothing, but I needed to have a surgical biopsy because it was close to the chest wall. I said shouldn't I have an mri. she said no, just get the biopsy, asked if I had questions and sent me on my way. My sheet said nothing about a breast specialist etc.
So, I panicked, had my sister-in-law who is a nurse set me up with a surgeon at that hospital whose job is at least 25% breast biospsies. Day of, they sent me down to put a wire in, where I asked for a valium or something. they said no, I would have had to request that earlier from a doc and is I didn't do it then,the surgery wouldnt be done that day. It was truly a horrible experience.
Move forward to a couple weeks later when I had met with the breast specialist at a different institution and was moving forward. I wrote a letter to the hospital CEO, the head of the women's department, the head of radiology, etc. I laid out everything that had happened, and that I felt it was a cluster f%*k of no communication or patient service. I immediately had phone calls from everyone asking questions.
The Womens Department head, it turns out is also the breast specialist for the hospital and I should have been referred to her. But because it was the day before thanksgiving, lots of people were off and the radiologist was someone filling in who never worked in the women's center area and wasn't skilled in where to send people. She was mortified (and she actually has an excellent reputation also) and was doing all kinds of research into what happened. She made the radiologist call me, who was kind of sorry, not sorry. I asked about why she didnt advise the MRI and she just said well sometimes insurance companies wont cover it. I said you didnt even check, nor did you refer me to the head of the department you were working in. Ultimately, she was written up and I believe received a warning in her record. (big woo). Then the radiology department from the wire guided area called. He was appalled also. Apparently I had a resident. That resident caught a lot of heat. The nurses had already filled him in.
So...while there was no particular thing that was an error per se, there was terrible communication by all. Much of it all due to having the test the day before a major holiday. This was my first time with anything potentially serious. I was already in panic disorder mode, so not functioning at my usual ask question level. From that point on, research was my number one thing.
My new breast specialist was the first female surgeon to graduate from Duke. She is incredible and doesn't quit until she is convinced it is clear. I learned a lot from that first experience and went in prepared for every appointment after. At my mastectomy, I was really paranoid about the anesthesia for so long. A friend that is a surgical nurse signed on for my surgery, told me to request a specific anesthesiologist (head of the department) and said she would be the last person I saw when I went to sleep. I wrote a letter to each doc...my PS, my BS and the Anesthesiologist with a picture of my family and saying I wanted to return to them. Told the sleep guy not to read magazines while I was under, lol. Told the PS I wanted to be number 1 on his IPAD to show to patients (he was a funny guy)
So.....long story but live and learn and be your advocate. Educate yourself on your diagnosis so you can carry on an intelligent conversation and if your doc isn't willing to do that, find one who will. I have been lucky in that regard.
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kae...I stayed small because I had always been a full b before I had kids. After kids they were big. I never got used to it. MY PS couldn't believe I wanted to stay smaller lol. I am very comfortable with the size. Now if I could lose some more weight, they would look better again. Bigger than my stomach lol. I also like to sleep on my stomach and had read that a lot of people had trouble with that who were larger. I still use a small pillow to squish around so the pressure isn't full on them. But I cant sleep unless I start on my stomach at least.
After my surgery that was the worst. I couldn't get to sleep and when I did I woke at the least little thing sleeping on my back
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fluff, i know right, i would be going crazy not researching what drugs they were giving me. I asked her again and she said "I am not sure, they said it's the most common"
I wanted to know every name the drug "might" be known by.
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Fluffqueen...
Thanks for my morning chuckle when you wrote: as I am bawling in the restaurant lol.
I chuckled not because your were bawling. I chuckled because of how many times I did that in the beginning! And how often before BC I would see another women bawling and wonder why. Sometimes DH would ask me if something upset me or was I sad or hurting ... Dang, he was just trying to help and there I was crying and not knowing why. LOL.
I guess some steps on the journey are predictable.
Vicky
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suburbs - your infection is really a bear and I'm so sorry it is taking so long to heal. You have such a positive attitude and I pray you see healing well before the 14 month mark! It sounds like your doctor has you on a good regimen. I'm also allergic to almost all antibiotics so I can relate how tough it might be to find one that works. Feel better soon!
Elaine - I developed terrible pain in my tailbone while I was still in treatment last year. I sat for long periods when I was working and now that I don't sit all day my tailbone is much better. Even when I do sit for a long time the pain is no where near as bad as it was previously. I hope the summer break allows for less sitting so your back feels better soon.
kimcee - I am so very sorry to hear about your heart troubles and that you had to stop Herceptin. Sending hugs and prayers for healing, hang in there.
YYC - welcome to the group. This is truly a lifeline and everyone is so helpful adn supportive! It sounds like you are really on top of things and I applaud your preparedness to fight. Asking lots of questions is key and will help you greatly as you move forward!
Embrace - I am beyond shocked at what you have experienced. My heart goes out to you and I pray you find a resolution that brings you peace and restores your trust. I would find another medical team because I just wouldn't have faith in the current medical establishment where this happened. I'm not quick to complain but in this case I definitely think a discussion with management is necessary to ensure this doesn't happen to someone else. Moving forward, there is a big positive in that you can still get Herceptin and the treatment protocol is very promising. Sending hugs and prayers your way
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specialk and suburbs - thanks for the pep talk on the LE. My PT is awesome and she is very hopeful that I will see improvement over time. I'm not a very patient person so I always need a reminder! I have to tell myself not to look at my arm every 5 minutes because to me, it looks like it is getting larger and larger when in reality the numbers are not really that bad. I wear sports bras with a wide side band that provide some compression but need to explore the compression tank too. This is another part of the cancer journey that I know will get better over time ;-)
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Hi Ladies, I am just now paying attention to some numbers on my path report. I guess I don't really know what I am looking at though...
So maybe some of you might know if this is good or bad:
Estrogen receptors: positive for moderate nuclear staining in 90% of invasive tumor nuclei.
Progesterone receptors: positive for moderate to strong nuclear staining in 70-80% of invasive tumor nuclei.
Mib-1 proliferation index: 2-3% (this is the same thing as Ki67, right?)
Also, I just had my 2nd echo done last week and am looking at the results as compared to the one I had in early March before chemo started. The main thing that I see that is different is that it says that I now have mild TR with mild pulmonary hypertension (est PASP 36 mmHg). It also says borderline left atrial dilation, mild tricuspid regurgitation, and trace pulmonic regurgitation. The echo I had in early March was completely normal. I did not see this earlier today when I was getting my infusion or I would have asked the nurse about it. Does anyone know if this could be Herceptin-related or just possibly related to getting chemo in general? Should I be worried and if so, what should I do next?
KasiaK, so I guess this means that I am 90% ER positive and 70-80% PR positive. I really don't know what that means other than, of course, to know that I am triple positive because of the HER2+ diagnosis. I have no idea if this is good or bad because I have never discussed it with my oncologist.
I really wish that I had more knowledge regarding these things!
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HapB, thank you for responding! LVEF in early March was 60-65% and as of last week, it is 55-60%. I still have about 10 months to go of receiving Herceptin but that is the miracle drug that I need for my HER2+ so it worries me that they might have to stop it. Should I be worried about those numbers dropping? Can I do anything to make it better?
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tld - yes, MIB-1 is a proliferation indicator, and is interconnected to Ki67%, but I believe that 2-3% is low. For your ER and PR percentages, these are derived by the pathology slides.100 cells are counted and whatever number of that 100 showing a receptor is also counted - so if 80 of your 100 cells have an estrogen receptor you would be 80% ER+, same process for PR. Anti-hormonal therapy is thought to work more effectively for those who are highly ER+, and higher PR positivity is thought to signal somewhat less aggressive disease. Having a higher ER+ percentage also means that anti-hormonals may be an important part of your treatment. Can't help you as much on the echo results, other than to say that LVEF is a somewhat subjective measurement, since a human being is deciding where to place the measurements. Oncologists look for a 10 point, or a 10% drop since last LVEF, or a drop below 50. Some drop in LVEF is considered normal if it falls within the previous parameter.
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I believe we all react differently to some degree with our drugs to defeat cancer. What might easy for one is horrid for another.
My attempt handle Herceptin and any damage it did to my heart was to walk at least 6 times a week. I have mitral value prolapse and feared Herceptin's effect on it. Even when I felt like crap, I got on the treadmill and walked some amount.
I don't know if walking helped or not. My echo results, however, did increase with each test. My baseline was 62 increasing to 65, 67, and finally 69.
Best wishes, Vicky
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Just checking in to say hi. I returned from my youngest's college graduation last night. So many emotions this past weekend. I've been keeping up but not posting much. Some of you might remember I was scheduled to start #1 of T/H tomorrow but decided I wanted to do Fridays (to try to minimize SEs over the weekends), and I finally got a call from my MO's office (in an airport on my trip out!) that I was good to go, so I'll have #1 on 5/18. Welcome to the newbies, hang in there to everyone experiencing problems, and happiest of Wednesdays to all!!
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tld - mild regurgitation is pretty normal. I had reguritation on two of three valves that they checked on my echo but the tech said that it was very normal. So it may not have been mentioned on your first echo because it was considered normal, who knows. I don't know if herceptin would cause that or not but I haven't heard of that being an effect, only LVEF reduction. If you've quit or cut down exercising that could also explain your drop in LVEF, but if your doctor is concerned about it they would usually just hold treatment until your heart recovers, and then restart and keep a close eye on it. Most people, when caught early, do recover. LVEF reduction happens I've heard in up to 30% of patients but is only irreversible in a small fraction of that. If I were you I'd point this out to your MO and ask if you need to take a break in treatment for your heart to recover. Do you know if the same person looked at both echos? If not, it might be good to have one person look at both echos and compare them because the interpretation is pretty subjective.
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Thanks HapB!
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Thank you so much, ladies, for the advice on my PR and ER numbers and also the echo issues! I am grateful! I am hoping that my numbers are high enough with ER at 90% and PR at 70-80% so that the meds that the doctor will give me will help. I also left a message with my onc's office regarding the echo results and I'm hoping they respond soon and give me some reassurance.
Ingerp, the photo is awesome! Happy family!
Hapb, I am 52 so I'm hoping that the damage is not permanent!
Hapa, the same person did both echos and she was very thorough (I think), and super nice and reassured me that everything looked good to her so I was kind of surprised to the see the results. Maybe it is not as bad as I think it is? Looking forward to hearing from someone at the onc's office about it....
CoachVicky, I have definitely cut back on my exercising so I need to walk more for sure. I just have not been feeling that well and the fatigue hits me hard some days. No excuse though - I need to get my buns outdoors and walk before it gets to be a bazillion degrees and humid!
Thanks, SpecialK, for your words of wisdom - you need to be paid by this website because your words are priceless to so many of us!
Grateful as always!0 -
There are things you personally can do to improve your LVEF and aerobic exercise is one of them:
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Hapb, of course exercise would wait until the patient is stable and the entirety of the damage can be determined. Not waiting would be equivalent to starting an exercise program in the midst of a heart attack.
Once the total damage has been established, insurance might pick up the cost of a cardio rehab program; Medicare, for example, will pay for a cardio rehab program if the LVEF is under 35.
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Ingerp - congrats on your son's graduation! You have a beautiful family, what a happy day. Will be thinking of you on Friday, hugs0
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HapB—that’s the University of Montana.
Deni—thanks so much. Probably a good thing I haven’t had too much time to think about it this week.Already bought tickets to a movie tomorrow night—thought that might be a good distraction.
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Even when I was in my 40's and doing Jazzercise and riding my bike, my normal LVEF was 56. Also back then, my cardiologist found that I have a left bundle branch block but did not indicate that either was a big concern.
After 7 herceptin infusions (in my late 50's), my LVEF had dropped to 35, I was severely short of breath, my lower legs were swollen and I had no stamina to ride my bike. I agree that anyone on herceptin with these symptoms should demand extra echos. Every 3 months just isn't enough for some people.
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HapB--I haven't seen the new Avengers yet but thought that was a bit too much of a time commitment at 2.5 hours. I'll save it for the next time I need a distraction. I'm going to see Tully (by the team who did Juno--loved that movie!)--it's only 1.5 hours. It's a little too early for hubs so he'll join me for dinner afterwards. Then home to bed to attempt to sleep. . .
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Hey there ladies, I have completed my 12 week YMCA Live Strong program and I improved in all areas. Even without any assessment scores, I can say I feel really good and EXCEPTIONALLY strong!
Back scratch test (left arm over head reaching down to scratch (touch) back WHILE right arm is reaching up back to scratch (touch) back. It measures how close the hands can be brought together behind the back) 2/23/18 -2 inches (right), -15 inches (left). 05/14/18 Fingers touched!! (right), -2 (left).
Arm reach (stand with arm out & no reaching) 2/23/18 24.5 inches. Reaching out bending slightly at waist 12.5 inches 5/14/18 27 inches. 41 inches.
Balancing on one foot for 1 minute I was able to do both dates at 100 %
6 minute walk test- It measures the distance that a patient can walk on a flat, hard surface in a period of 6minutes. 2/23/18 470 meters 5/14/18 585 meters Sounds like a lot but, it really isn't. On the second date they didn't tell me to NOT work out before the test and I already had 45 minutes on the treadmill.
Leg press 2/23/18 75 lbs. 5/14/18 125 lbs.
Chest press 2/23/18 30 lbs. 5/14/18 40 lbs. Right arm is ALOT stronger but, they have to measure with both arms (of course). I was/am intimidated to push with left arm too much without approval of a PT who is licensed to work with cancer patients (mastectomy etc)., my trainer is an NSM only.
My heart rate, stamina, strength etc has improved. I feel good! I encourage anyone who has the opportunity, to call the YMCA and ask about the Live Strong program.
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Great news MoodyBlues! Congratulations.
The cancer patient YMCA programs are awesome. I loved mine. It was called Fit to Fight. Patients at all different stages of treatments were in my classes. I encourage others also to check these programs out.
Vicky
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Thank you Hapb, it was well worth the work. Success!!
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