TRIPLE POSITIVE GROUP
Comments
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thanks all for the input about hair growth. I took a look and I do seem to be growing some hair. I have like these short, ugly sideburny things that are clearly new. I guess I lost that hair during treatment but didn’t notice. It’s sort of a brownish grey and straight so far. And fine. Hm. Good thing I did the cold caps, I’m not liking this new hair so far! Of course it’s really too short to tell about anything but the color, which is easily fixed anyway.
LeeA, I was going to ask you about your results – that’s great news! I’m thinking of lobbying for one. I’m nervous about the excess radiation but on the other hand I have all these random symptoms, all of which can be explained by something other than bone mets, but I kind of feel like the risk of having something scary(er) and not finding out about it until it has spread is higher than the risk from the additional radiation. I’ll talk to MO about it when I see him in a week or two.
TonLee, it must really be tough to extract a scan out of them because if anyone could do it, seems like you could. They should give you one, this is kind of ridiculous given that you were stage III upon dx.
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New here....
Diagnosed on 12/21/12 Left IDC 1cm triple positive, very weak er/pr. Here is my question. Any opinions about will it hurt to wait for surgery after 6 weeks from diagnosis?This sounds stupid but my husband and I have planned a 9 day vacation to Hawaii for the last year and I want to surf! Just want to hear your thoughts. My drs say is it ok but should I be asking better questions? Thanks for your advise in advance.0 -
Oh by all means go on your vacation! It will not mack a difference in the grand scheme of things, the tumor is small and your numbers are weak. I was diagnosed with a recurrence on October 25, 2011 - same stats as yours except my er/pr was much stronger. We had a cruise planned for early December that I did not want to miss. Went on the cruise and came back feeling relaxed and rested and ready to take on the fight! I had my surgery 12/21/11 and am really glad I decided to go. Take time for you!
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Lsl327 I know you read my post on the other thread stating I had to wait the 6 weeks and I'm doing fine. Just wanted to let you know that it is not unusual for a triple positive to be weakly hormone positive. I was 30% ER+ and only 3% PR+ Granted there are several here that are highly positive but they are less common.
I would take the vacation. You have lots of treatment ahead. Do it while you feel up to it. Glad to see you over here. Some of the ladies are busy celebrating today but this is usually a very active thread. Not easy to keep up but don't worry about that.
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Lsl327 - I had a 2.3 (on ultrasound/mammogram) suspicious mass and delayed my biopsy by 8 weeks because we had two trips scheduled back to back in September of this past year. The second trip was to Kauai and the rental house was paid for in advance, the flights were already paid for, etc.
I talked to the radiologist where I had the US/mammogram and her words were "by all means, go on vacation - whatever this is, we'll deal with it when you get back." We returned on October 1 and the biopsy was scheduled for October 4. I didn't have surgery until November 7 because of scheduling conflicts between my BS and PS.
Even though we had the biopsy cloud hanging over our heads we had a relaxing vacation and then I came home and faced the so-called music. The first day of my BS appointment - when I was still in shock from the diagnosis two days before, my cell phone rang in my purse and my husband answered. The surgeon was out of the room and I heard my husband say "we'll take it - my wife will confirm it by email." It was the house rental agency and they only had one slot open for this particular house and my husband thought it would give us something to look forward to. At the time I thought he was nuts but it really has given me something to look forward to thus far.
All that said, enjoy your vacation!!
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Hi. Happy New Year? I had been waiting on the results of my HER2 status and got the word last week that I am also a triple positive. I've been reading posts and am worried because my ER is 98% and PR is 96%, Ki67 is 35%, and HER2 ratio = 2.3 amplified. I don't even know what this all means yet except the nurse who gave me the HER2 results says it means definite chemo. Also waiting on results of BRCA testing. MRI is scheduled for Thursday. Scheduling surgery as soon as results come back. What else should I be thinking about or preparing for? Any advice would be appreciated
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Lsl327 - one other thing I meant to mention and forgot - I started taking curcumin with bioperine in late July, soon after the suspicious mammogram/ultrasound (when I knew I would be delaying the biopsy).
I slowly increased the dose and by the time we got to Kauai I was taking 1000 to 2000 mg per day. I was also taking 2000 IU of vitamin D (daily).
Of course, at the time I didn't know if the suspicious mass was malignant but my BiRads score was IV so I knew it wasn't looking too good and I wanted to do anything and everything possible during those eight weeks to try to protect(?) my body against further damage. Additionally, I had no idea if I was Her2+ (didn't even know the meaning of the word/acronym).
This study (linked below) came out on September 4, 2012 and it's one of the first ones I found when I just googled curcumin and breast cancer:
The impact of curcumin on breast cancer
http://www.ncbi.nlm.nih.gov/pubmed/22772921
An excerpt from the abstract: Both in vitro and in vivo studies have shown that curcumin and its analogs target critical genes associated with angiogenesis, apoptosis, cell cycle, and metastasis. The inhibition of human breast cancer cell growth by curcumin is mediated via certain signaling cascades including the modulation of the NF-κB signaling pathway.
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Now, since knowing my tumor was Her2+, I've done more searching (on and off) and found more information specific to curcumin Her2+.
Here's a link if you or anyone else is interested:
http://www.hindawi.com/journals/ecam/2012/486568/
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My tumor measured as 2.3 cm in late July 2012. When my BS did an ultrasound after the biopsy they measured it as being over 3 cm and they thought it had a "tail" of some sort about 2 cm long (which really had me scared). Then, they did an MRI and they determined the tumor was 3.4 cm (IIRC) and the 2 cm thing was a "blood product" (i.e. a hematoma leftover from the biopsy).
One of the few times I've felt "guilty" about taking the vacation/delaying the biopsy was the day when the radiologist at my BS's office said "well, it was 2.3 cm in July so it's obviously grown since then."
Flash forward to the post-surgical pathology report:
Tumor = 2.5 cm with 10 mm (or more) clear margins
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I'm assuming the variation in size between the MRI and the final pathology report may be due to the biopsy causing temporary changes to the tumor (the radiologist told me this could happen) but when it was all said and done - the actual tumor was closer to the mammogram/ultrasound report back in July than the post-biopsy MRI results.
Did the curcumin/bioperine help? I have no idea but I don't think it caused any harm and in my mind, it was just a little extra shield to use during the delay and I have continued to use it (when allowed) since diagnosis.
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Hi Speedy, welcome and sorry you have to be here. You don't say how large your tumor is, but unless it's quite small I'm afraid you are on track for chemo. Most of us do taxotere and carboplatin for 6 tx 3 weeks apart, along with herceptin every 3 weeks for about a year. Herceptin isn't chemo, the first two drugs are. The ER/PR positive part isn't particularly worrisome, some people who are er/pr+ don't have to do chemo, but the her2+ means you have an aggressive type. There is a lot of great info on this thread and a lot of other threads on this site. You may hvae to decide between a mastectomy or a lumpectomy. Your oncs might recommend a different set of chemo drugs then TCH; if so that's another decision. You can keep your hair even with chemo though -- I did the cold caps and had full coverage the whole way through. I recommend checking out the cold caps thread if that's a concern for you. Good luck and keep us posted -- there are many very knowledgeable, very helpful women on this thread. They have been a great comfort to me and I'm sure you will find the same.
Yeah, well in 2014 we can say happy new year to you! This year ... I'm guessing won't be your favorite. But you'll get through it.
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Hi Cypher~ I'm not sure how big the tumor is. On my pathology report it says " right breast, 1:30, 9G core biopsy: poorly differentiated IDC, measuring 6mm in greatest linear dimension, involving multiple cores and associated with high grade carcinoma in situ with comedonecrosis." Does that mean the tumor is 6mm?
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Speedy there are a few women here that are highly ER/PR+. There are several endocrine meds to suppress the estrogen so that just means you have some more ways to fight this. They will be important meds for you to take after chemo is done. Ki67 is typically high with high grade and typically HER2+ tends to be fast growing to. A few of us are grade 2 but most of us here are grade 3 with a high ki67. BTW chemo does best of the fast growing cells.
Heraceptin is the main drug they use for early HER2+ breast cancer. They have found it works better when given with chemo so that's why your nurse said that.
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Busy thread - I miss so much in one day! Hope everyone had a nice New Year's Eve. Starting to regret nipple recon. They still have stitches and look horrible. They also kind of hurt, like they are sore and the skin is all bruised looking. Is this normal? I also think I see rippling that was not there a few weeks ago before the nipple recon - could that extra trauma/surgery have caused rippling? I'm hoping its something that can be fixed - it almost looks like vertical stretch marks, but its weird how they appeared only since the nipple procedure. It's always something.
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shore1, I just wanted to mention that I saw your photo on the hair thread and you not only look great but you look so healthy! Your hair length/photo provided great inspiration the other night when I was feeling all
about the upcoming hair loss. 0 -
Kay, ha! There isn't a way around it I'd want to risk. This is FEDERAL, therefore any fraud is dealt with at the FEDERAL level...does that make sense?
Linda, perhaps the reason your #s were all over the place is because Armor is 80/20. 80-t4, 20-t3. That is generally to much t3 for most people. I take a combo of Synthroid (t4) AND Armor (t3/t4). So when you add them together, the breakdown is 96%-t4 and 4%-t3.
I'll be honest....until Armor, tx with just synthroid was miserable. I still had most all the symptoms even though my TSH was under 1. It was really a life saver for me. Which is why I fight so hard to continue it. But the people who manufacture Synthroid have really done a good job in making young physicians believe it is sub-par, or even dangerous. Which is not true and there isn't a single study to back up the claims, but literally hundreds on Armor's efficacy. Millions of people were txed successfully, and better with Armor for decades until 1975 when synthroid hit the market. But we're supposed to forget about all that and just believe it's bad medicine....even though there is nothing to suggest it in the literature.
Still, it is very difficult to find docs around here who will work with it.
Any natural dessicated thyroid is good. Mostly because they all contain the same hormones expressed by our own thyroid. Synthroid is a single hormone, and our body is denied the others when it is our only med. Which is why some women still have symptoms on it.
Now I am sure that is more than you ever wanted to know!
There is a fabulous book out called, "What your doctor may not tell you about hypothyroidism" by Ken Blanchard. It's short, an easy read. He's an Endo and gives detailed instruction on how to get the 96-4 ratio.
Several years ago, I read the book, then because I couldn't get a Dr to prescribe it, I ordered Armor from England (where it is sold OTC). Since it was made in the USA by Forrest Pharm. I never had a problem with customs taking it. Anyway, I tried it on my own for about 6 months.
It worked so well that at my next appt the doc said she was giving me a referral off base to an Endo so I could continue taking it, and not have to order it from the English Isle (though it took me FOREVER to find one who would prescribe Armor).
So, every 6 months, I risk losing all that to a "new to the world of medicine" Endo...lol.
Whew!
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Hi Speedy,
I just completed a Lumpectomy with three sentinel node dissection and port placement on the 28th. I too have a high ki67 score along with 90% er and 30% pr. My her2 is a 3+ 30% over expressed. Once my pathology report comes back with clear margins, I will begin Chemo with Herceptin on Jan 24th. If you are like me, it is very surreal while going through the tests, dr visits, and surgery. BTW, lumpectomy does not really hurt and I was really surprised by the lack of pain, even the port entry sight is healing nicely. It sucks that all of us are going through this hell, but thank God for all the new drugs to help us. My surgeon said one of the best results on the biopsy is the high er because I will respond to harmone therapy like Tamoxifen.
You've come to right place because all of these wonderful woman have a lot of knowledge and will give you all the loving support you need.
I wish you the best of luck!0 -
LeeA, Thanks again for the encouragement. It is so hard to tell what to do. I am getting second opinion on the 9th my first oncologist seemed indifferent to me going on the vacation, so I am seeing a second one on the 9th to get a clear indication. My radiologist (who is a gem) said to go but should work it out with the oncologist and surgeon to be for sure. Hawaii is not worth my health but worth my sanity at this point. All of your stories are so helpful. I know you are not medical people but sometimes the pressure from the medical community is hard to overcome. They steer with fear sometimes. I am strong very healthy and not in denial, but I want to do what is right for me. Thanks again to all of you!
Hey how do I do that listing of procedures at the bottom? So I don't have to keep typing it.0 -
lsl327 - click on "my profile" up at the top of the page, then click on "my diagnosis" on the page that comes up and fill in the info!
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Thanks SpecialK, I love your smile!
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lsl327 - aww thanks! I always laugh when I see that picture because it looks like I am naked (maybe why I am smiling???) but I am really wearing a strapless dress!
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Shore you are going through the Franken nipple stage. Give it time. They change and will look great. I doubt the ripple has anything to do with your Franken Nips
SpecialK you mean you're not naked
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lago - no I am not naked - that pic was taken at DH's high school reunion - probably not a good place for nakedness. I was just thinking I probably will never wear that dress again either because I would be too nervous about my ability to feel whether the top of the dress was still where it was supposed to be, lol!
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I have a sun dress like that. I use special tape and tell my DH to make sure my dress is covering me up. I love the dress but I do watch it all day.
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When I only had one TE and had a prosthetic in the other side DH and I went to a military dinner. I kept asking him all night if the prosthetic was still where it was supposed to be and had not migrated to the middle of my chest creating a uniboob - so crazy! He got so good at reading my facial expression he just started winking at me. There is actually a really nice picture of us from that night that I used for last year's Christmas card! I should try my strapless dress on (see if I can fit these new girls in it!) and get some of that tape!
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Ha, I did not think you looked naked at all...but now that you say that! I will upload a photo when I get to my computer and not iPad...I will be dressed!
ok hot tub and movie time! XO ladies! 0 -
Enjoy!
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Lago - ha! Franken nipple stage. I hope you're right. The rippling is freaking me out though because just a few weeks ago, implants looked awesome, and now there are these weird stretch mark things. I see PS on Thursday so I'll ask about it.
Lee - Thanks
.Finally feeling better. I'm going to post an update - that pic was taken before Thanksgiving, and I have an updated pic from Christmas.0 -
Hi ladies, I just wanted to wish you all a Happy and Very Healthy New Year!
The holidays kicked my butt and I am so glad they are over. Surgery and the holidays are tough!
I am doing great after my BMX and things are looking pretty good...I will still need a slight revision...but, that will come much later.
I will say that I need some advice or maybe a pep talk...I may have mentioned last time I was on...that I have been having lower back pain (near my butt/tail bone) for weeks now. I must tell you that I slept sitting up for three weeks after surgery and I just started taking tamoxifen...fun stuff...and I just started back in working out...so I am hoping that this combination is what is causing the back pain. But, my MO ordered a PET for thurs...I was slightly dissapointed when he just jumped into ordering one for me. I was hoping he would say that there was no reason for one this soon after surgery and being that I am still in treatment. But, alas, no. He did not even hesistate to order one. I felt ok about it until yesterday and then the panic and dark thoughts set in. I really do not want another PET (one before tx and one a couple of weeks ago to rule out a blood clot) and was hoping the pain would subside so that I could cancel it...but, no luck there either. I know you ladies were discussing PETs earlier today but, could not chime in from my phone at that time. I also wanted to add my two cents on the PCR. I did not have a PCR and was very upset about that after surgery (nov 2012). My MO said it is rare for someone with high hormone levels (I am 90% for each) to get a PCR....we just do not respond to chemo as well, but, that the response I did get was very good. I can not remember exactly how he put it...but basically he told me that it is more important for someone hormone receptor negative to get a PCR than someone that is hormone receptor positive.
Not sure how accurate that is....I did find some articles on it that seemed to say that same...and I think we even discussed it on here as well.Darn Chemo brain:)
anyway...I just want to get this scan over and behind me...I can not believe I am freaking out about it. The logical side of me says that I am having pain due to everything I have been changing lately....but, the crazy side of me...well you know what she thinks:/
Happy New Year! You all are so beautiful and strong and such an inspiration to me. I hope that you all have a wonderful year.
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lsl-usually they tell us these things grow slowly and it has probably been in you for awhile.... Most oncs would say it’s ok to go on vacation. If you’re really nervous about it and planning on having a lumpectomy, the recovery from that is really not a very big deal so if you got in for your lumpectomy soon enough you could probably do that pre vacation, then go to hawaii, and then ... hunker down for your chemo.
Jenn -- sounds like you and I are in a similar mental state right now -- I pm'd you.
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Speedy4, it looks like your path report says you have a 6 mm tumor that's high grade (also called grade 3-- that's what the "poorly differentiated" part means). I'm pretty chemotherapy is the standard of care for HER2+ cancer over 5 mm; that's probably why the nurse said definitely chemo.
I'm so sorry you have to go through this.
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Jennifer....if you just had a pet scan a couple weeks ago, can't they just re-read that one?
Lee A....your post about the office saying it was ok made me chuckle. I recently saw my PCP for an annual check up. He ordered a bunch of bloodwork. When the office called, they said everything was stable. That prompted me to get a copy of everything as stable made me think there was a problem that just hadn't changed. He did want me to start a bone density drug. Mine was normal, but had dropped since the last one two years ago. I am resisting and trying the weight lifting and calcium/magnesium. I don't want another pill or side effect. Onc offered to give me prolia shot, and I am researching reclast, but don't want any really
Lsl...my first biopsy didn't get to the exact spot. Took two more to find it over the next 8 weeks. Then surgery was four weeks after that. There was no change during that time and margins were still clear after the identifying biopsy. I hope they give you the ok and that you have a wonderful trip.0 -
Jenn, fluff has a good point -- I guess I read your email too quickly. If you had a PET scan a few weeks ago and it was clear then shouldn't that mean you're NED? You had neoadjuvant chemo then a bmx afterwards, right?
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