TRIPLE POSITIVE GROUP
Comments
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Hi Lago,
I grew up in CT, and after college lived in Boston (ending up in JP). Now I actually live in Western Mass near Northampton over 2 hours from Boston. But the minute I felt a lump (though I didn't think it was anything) I called my insurance to see if I could go to Dana Farber. They said I could if something was found. But then when I actually got the dx from my local lame health center (I found out because someone left me a message on my answering machine asking me where they should send my films), Dana Farber wouldn't take my insurance.
I found out I could go to Beth Israel system if I had a Beth Israel PCP. So over the phone I immediately changed my PCP to someone in Boston (I bless the insurance call service people for being so helpful- even waiting on the phone while I got a PCP rec)- and so went to Beth Israel which is also part of Harvard along with DCFI, MGH and Brig&Womens. I have the most AMAZING MO, Dr. Wulf, who is part of the whole Dana Farber research institute. I participated in the Aphinity trial. So for my WEEKLY taxol, I'd travel over two hours each way, through snow, or whatever was thrown my way, and even on occasion drove myself. But it was worth it, I'm so thankful I get to go there. I'm worried insurance will renege but so far so good. I did radiation locally though.
That's a long answer about where I live-- the short answer is I'm a Sox/Bruins fan!!
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to add to all of this - I sm in a breast cancer support group and most of the 15+ women found their own lumps
Interesting about the cats. One woman in my group had a dog that tried to attack her breast before the tumour was found in the exact spot
As for rads I too was told that I would only have to have rads if I had a lumpectomy so no rads required despite 2 of 21 lymph nodes
By the way my buzzed hair is shedding like crazy and driving me NUTS!! I want to SCREAM!!!! Lol
Linda I WILL be getting that lint brush because this is ridiculous!! Lol
Good day all!!
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Lago,
Yes I've noticed the MIdwest/West is more likely to use TCH perhaps because Dr. Slamon is out there?. I consulted with Hal Burstein (DFCI) who wrote a paper arguing ACTH was more effective for node positive. But I'm wondering if that will change with the more recent research. The single and only advantage of ACTH protocol that I've unscientifically observed is that there seem to be fewer issues of hair regrowth than with taxotere- but that is extremely rare with either protocol.
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I thought I would post this, given the mention of cats on this thread:
Dogs can smell prostate cancer with 98 percent accuracy (May 23, 2014)
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My California oncologist said the TCH/AC thing is kind of a rivalry between UCLA and Sloane Kettering.
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I too found my own lump. The one in the right breast. Dr found the three in my left breast.
I may be the one you were talking about who is still doing rads w negative nodes. I am one week out of surgery. Pathology just came back-all 7 nodes, no cancer. Right side lumpectomy-all margins clear. Left side masectomy-had originally had 3 tumors, path came back w 6 tumors-three of them micro scopic. Scary stuff. I had 7 tumors total! My biggest question now-did the other three tumors grow during my chemo treatments or in the 6 weeks between chemo and surgery? I will most likely never know.....My RO wants rads on both breasts....left side due to the multi tumors so i think more is involved in their decision than just node involvement.
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Hi ladies....been reading the posts and wanted to chime in on a couple of thins....
1. I had a huge retro areolar fibro on the left side when I was 14. Had it surgically removed and life continued. Fast forward to age 41 and I have a cancerous retro areolar lump on the left side....same spot as the fibro decades earlier. Coincidence???
2. Have always been told i had "dense breast" was never offered and US as an adjunct to mammography. I wish I had since my mammo at 40 showed 'all clear" and then 9 months later started my "journey".
3.. Rads vs. no Rads. I had a BMX post neoadjuvant chemo. At time of BMX all nodes clear, no tumor, microscopic cells remained.....rads recommended to chest wall and supraclavicular nodes only.
i appreciate that we are all being so candid and sharing this info....as always it is a learning experience and helps with our own treatment and follow up care. Enjoy your Holiday weekend
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Girlstrong, your first point reminds me of a discussion we had here several months ago regarding prior injury to the breast where cancer was later discovered. I was in a car accident and had massive bruising on the left breast several years before the cancer was detected in that breast. Someone else I know, who is also a triple positive, had an injury from a softball in the same area of the breast where her tumor was later found.
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Geewhiz...
Fascinating on all accounts the story you shared. I am beginning to believe there are no coincidences. ... In synchronicity. We must always try to be in the moment to make the most of them.
'Find a job you love and you never have to work a day in your life'.. Sadly most of us never do:(
Would love to see the lecture. I miss most of the stuff but learn something new nonetheless !
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momwriter, I went to summer camp in Western MA, first 2 years of college at Umass Amherst, Worked in East Longmeadow for 3 years so I'm very familiar with the area. Love Northhampton. I still know a few people there. Personally I consider people from the Springfield area as being from CT. Same accent
Beth Israel ain't so bad. I was born there! Seriously I have heard excellent things about the BI too. Like I said so many good places in Boston to choose from. Believe it or not when I was having trouble with acne I would drive from Auburn to Mass General then go to work in ELM! None of the local MDs were doing anything for me so this is what I had to do. It's best that you are going to a top place for this. It's worth the drive.
My MO seems to go with TCH but she lead the initial study on Herceptin back in the late 90's with Dr. Salmon (lead MO outside the company that made the drug). Of course she and he would be on the same page.
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girlstrong only once was I offered an US. Unless you live in the state of CT you do not automatically get US or MRI for dense breasts unless they see a change… which is an oximoronic since you can only see a blizzard on a mammo of someone with dense breasts.
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Ok the whole pet thing I can relate to that too. My dog a few months before I was dxed kept putting her nose and would push in on my left breast and that is the side cancer was found. Kind of weird but I was told animals have this sense in them. what also is weird is she does not do it anymore.0 -
Vettegirl, I'm pretty sure it wasn't you. This girl was a stage 1 or 2, small tumor size & neg nodes. Her MO said to do rads because she was her2+. That's why I thought maybe I had missed something. My tumor was multifocal with a .9cm tumor behind it. That's why he wanted to do a MX. The GS was able to get more than the required margins & I didn't have any pos nodes. I even did research on multifocal & no where was I able to find an article suggesting rads for it.
I live in the midwest but I'm getting ACT-H. My MO asked me if I ever had any problems with my heart. I think this concerns me a little because I'm only 41. I know the A & H can both do damage. My MUGA scan was today.
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Mommato3 a women in my building (ER/PR+ but not HER2) also was told to do Adrymicin. She went to my onc and she recommended TC. There are many ways to treat this disease.
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Mine was found by the mammo. However, I had a cyst in that same spot about 10 years ago and dense breasts. After menopause at 52 or so the cyst did not show on the mammo. Mammo at end of October 2013 showed a suspicious spot . When they called me back for the sono I put if off thinking "it is just that same cyst they keep looking at". I was traveling to see my husband who was working out of state last year. I only got to see him once a month or so and was not going to cancel my little vacay with him. Recheck mammo just before Thanksgiving, immediately they wanted to do a sonogram. I could see the sonogram screen from where I was laying. I could also see the techs face. Boy she needs a better poker face. I could tell it was not good. I didn't even get a chance to get off the table....before they asked to do a needle biopsy. I knew it was going to be positive for breast cancer. The Dr and the tech told me "good luck" as they were walking out the door. I looked up the images on the internet, looked just like my cancer. My primary called me Decemer 7th 2013 to give me the news, usually they wait until you see the surgeon. Hubby was 1600 miles away and I had to tell him I had breast cancer. Only person in my family. Was fit for most of my adult life. Gained weight after menopause (and now with chemo). No other risk factors. Lumpy done December 30th. I will have radiation, micromets in the sentinel node. They told me because I opted for a lumpy that I would have radiation.
1 week PFC! Can't wait for hair (hate wearing the wig to see clients) and taste buds!
I hope they do not want to run the Herceptin for less than 90 minutes. I have the time.
Loved all the stories, especially the animals. So amazing.
Hope everyone has a terrific holiday weekend. Be safe.
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Hi all I have about 6 pages to catch up on, but thought I would give you an update.
PAP smear came back with abnormal endometrial cells. So today, I had to have an endometrial biopsy, but they aren't sure it is a good enough sample, so anticipate doing a d and c since I am on tamoxifen.
Now, I had a vaginal ultrasound with my PAP smear last month that my doc thought looked really good. Said the lining was a little thinner. Pet scan about three months ago was normal.
Would that show up on Pet scan?
Here is my big question. If I have a hysterectomy, do I dodge taking an AI? I'm guess no, but if I would that would make my decision no matter what the results.
I meet with my ONC to talk about it next Tuesday. I am strangely calm about it all. I feel like I expected something to be happening. Even if results came back ok, just the fact that there were abnormal cells is enough to drive me to a hysterectomy.
I have fibroids and if I had had one ten years ago when the gyn suggested it, I might have avoided BC.
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Fluff, hysterectomy doesn't negate endocrine treatment. Sorry but you can't dodge the AI
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that just sucks. I'm hoping it will be early enough that it doesn't require more chemo
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Chemo? or endocrine therapy. AIs aren't chemo. If we only had to do them for 3.5-6 months I doubt we'd be complaining so much about them… righ
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lago- you crack me up everytime!!
I just turned 34 years old. Hoping my period stays away but doesn't sound like it will after hearing some of these testimonies. 50/50 chance, right?
Hubby and I will just have to enjoy it while it lasts. :,)
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fluff - I had a total hyst/ooph 13 years ago - still had strongly ER+ BC in 2010. And, no, you can't dodge the AI.
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specialk, how did the doctors explain that?! Highly er+ with no ovaries... I realize that our body produces estrogen without ovaries but in little amounts, right?
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Mommato3,
I took CoenzymeQ10 throughout my ACTH chemo to prevent heart issues. I've no idea how it works. But multiple sources recommended it, and my MO said it was fine to take. I didn't have any heart issues all the way through.
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nunci - the percentage of ER+ is not measuring estrogen, it is measuring the number of receptors on your breast cells. The pathologist looks at a slide of 100 cells - sees how many receptors, in my case 96, so I am 96% ER+, with no connection to my level of circulating estrogen. Even though I did not have ovaries I was still producing estrogen from other sources. That is why post-menopausal women still need to take anti-hormonal therapy.
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Lago...for chemo, I meant I hoped it was found early enough that a hysterectomy would do the trick, and that it would not be a more advanced state that required chemo.
One would certainly think that if a pet scan in March, and a vaginal ultrasound the first of a May didn't detect anything or raise concerns that it would be early. I know I am assuming the worst, but in my case, the worst is what happens when they tell me it is probably nothing.
I suspected that the AI would still be in The picture, just was hoping otherwise.
I'm going back on Cymbalta the day I pop that first AI. I'm over all of this.
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Hi everyone,
Newbie here. Diagnosed with IDC stage IIA grade 3 triple positive. I am doing neoadjuvant therapy as my tumor was growing so fast I wanted to be able to measure outcomes from chemo. How have others handled being triple positive? I haven't met anyone else who is. I do not carry the BRCA1or 2, so decided against hysterectomy and mastectomy.
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Welcome Sarahsch. I'm sorry you have to be here in the first place but this is an excellent thread. When I was first diagnosed I started reading the thread from page 1 forward but I didn't make it all the way through.
As far as how I've handled it, at first I was a bit shellshocked by the triple positive diagnosis and as lago has mentioned before, freaked out about the Google hits that came up on being Her2/neu positive. This thread helped me settle down considerably (I found it before I had surgery/chemotherapy). In case you haven't seen her mention about it - a lot of the scary Her2 hits come up based on old information versus on newer information about the disease. We're lucky to have ammunition like Herceptin and I see you're doing Perjeta as well.
How are you doing so far with chemo? It looks like you're close to two months in.
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Welcome Sarah to this wonderfully informed thread and caring people----sorry u have to be here.
Any concerns or questions just ask, everyone will help (not me tho) I just mostly read but I will say when I heard the word positive I was so happy. after all why would the word positive be used for anything else but good==so I guess we all have different reactions and never googled.
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Hi sarahsch and welcome. Lucky for me - by the time I had found out that I was triple positive I had found this forum so I DID not end up spending time reading doom and gloom from Dr. Google. You have found the right place in this thread to see how we are are dealing with it or how these great women have dealt with it. Lots of great information her - lots of suggestions on getting through treatment and lots of women always reading the latest and greatest information and sharing with all of us. This is my life line to hope!! Ask away and one of these women will be in to give you their take on this path that we find ourselves on. I am an infant in this and still learning so you will see me asking more than answering.
LOL camillegal I love your attitude - your posts always make me smile!!
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