Calling all TNs
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Congratulations Meadow!!! Such great news!!
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Lou, why is the MO recommending that? TN isn't hormone driven so im not following the intent. Its designed to be effective for ER+, not sure there would be a positive effect for the negative symptoms of taking them. I suggest more understanding.
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Lou53-
I thought there may have been a thread on this site related to this, but I actually think it's on the tnbcfoundation.org site. My first pathology report said that PR was 'equivocal' so Dana Farber retested it a 2nd time and their lab in Boston (I was being seen at a satellite location) said I had 30% PR receptors (but was still triple negative). My doctor said that I was still a "true" triple negative and they would treat me as such, but she said that she may consider adding Tamoxifen after treatment ended. After finishing chemo, I decided to enroll in a clinical trial doing concurrent rads and Cisplatin chemo (because I did not respond to ACT chemo). In order to qualify for that study, I had to be a "true" TNBC case, so they sent me slides out to a lab in California to reevaluate for a 3rd time. They said they didn't find any PR receptors. When I asked my oncologist about this, she said that it could have just been the small sample of the tumor they used the first time around that had the cluster of PR receptors - that the make up of the entire tumor isn't going to be uniform. All in all, she said that my cancer looked and behaved like TN, so it was TN. After the last pathology read came back at 0%, she discussed with the Dana Farber tumor board, and they ultimately decided that Tamoxifen was not worth the side effects since the jury was still out on whether or not it would actually help prevent the cancer from coming back since I was more TN than anything. But, I recognize that ER is a different story. From what I was told, it's near impossible to have PR without ER (as in my case). But you obviously can have just ER as in your case, if that makes sense. Since there are so many side effects, and since it could possibly help you, I would get a second opinion regarding this (and maybe have their pathology dept retest the slides). I did, and it helped ease my mind that the right decision was made. Good luck to you!
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Mixed Tumor DCIS/IDC...My tumor was so mixed that the slides were sent to three pathology labs, finally winding up at Mass General. I wonder if a mixed tumor gives you better odds for no recurrence. Does anyone have any info on this? My MO refuses to discuss statistics.
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Thanks Ag23! There is a link on somewhere on this board that addresses the difference pathology reports with mixed results. I think I will ask about having another test to make sure. I know that some people don't experience side effects but I would rather not have to take something at all if I didn't need it rather than take a chance.
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Not hormone receptors, but I shared that the HER2 status of my core needle biopsy was positive, but my lumpectomy / solid tumor pathology report showed me as triple negative. ER / PR status was consistently negative in both reports. Given that the treatment plans are quite different, the conflict (called discordance) is disconcerting.
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Huzzah Meadow. Fabulous news that you have passed the 3 year point with NED!
Vizlas hope you are recovering and resting well. Glad they have got it all now.
Lou sorry I am ignorant about receptor status, and agree with jenjen about trying to get more information as this stuff seems to be super complicated. Hope you can get some enlightenment so that you can move forward. X
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What a coincidence that you guys are talking about this right now. I just saw my MO today and she threw me for quite a loop. My surgical pathology (residual 2mm tumor) was 2% ER+ and my MO brought up Tamoxifen, she said it may help an ER+ occurrence in the future, and that I'm "young" (45). I was surprised that she even brought it up. Luckily I have until November when I see her next to decide if I want to do it. When I brought up the side effects she said we could try it for 3-6 months. I have no idea at this point what I want to do. My thought driving home was that I'd rather have a hysterectomy and have my ovaries removed than be on drugs for several more years. Yay...more decisions to make 😝
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Thanks so much everyone for the words of wisdom! Getting my son ready for his first year of college really got me out of worrying about myself. I've started water aerobics and yoga for relaxation and strength. Its making a difference. Have a follow up on Monday and am not as anxious as I thought I'd be.about it. My new motto is Live, Love and Laugh! I am striving to be joyful about everyday! Love and Hugs to everyone!
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LifeAloft, I would rather have the surgery also but myBRCA came back negative so I don't know if that is an option right now. I was just getting used to being "done" with treatment and decisions and yet, here I am again. The list of side effects is staggering even though the chances are slim of getting those. One of them is hair thinning and loss. Seriously????? Ugh
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georgie61 - Ditto on what everyone said above - come here and hang with us when you're feeling overwhelmed! It's what we all do for each other as it is, so why the heck not toss your Evil Knievel act into it too?!
(seriously tho, hope the pain is getting a bit better and you are healing! HUGS!)Lookingforward66 - Positive thoughts heading your way!
May there only be good test results!jdash - Hugs to you! I'm so sorry to hear of your losses. It is so unfair what you've already gone through. I hope your worries ease and happiness returns to you!
Valstim52 - I hope your knee is doing better! ((HUGS))
Lou53/Cathytoo/Ag23/VLH/LifeAloft - Most of what you all were saying went ZOOM! right over my head! I had no idea that there could be a mix like that, or that there was variation in the test results - it's the first I've heard of it. I hope your docs can help clarify questions and that it helps you to make the right treatment choices. Like LifeAloft said: "Yay...more decisions to make 😝"
Meadow - HAPPY BELATED CANCERVERSARY!!
<--that's me singing for you! lol "May you have many more!!"LoveMyVizsla - KIck that cancer butt!!
Glad they got it all! Hope you're recovering quickly! (I'll check back with you in the surgery thread!)Shopgal2 - Hugs to you! (I grew up in Pittsburgh, everytime I see your pink warrior woman I smile!)
Scamp - "I've started water aerobics and yoga for relaxation and strength." Good for you! I didn't know water yoga was a thing!? That sounds like fun!
And I know what you mean about your son getting you out of thinking about yourself - my son had all 4 wisdom teeth out on Monday. Boy that really was a great distraction from worrying about me for awhile! I told him I better get better pain meds than he got this week though!
((HUGS)) to anyone I missed up thread!!0 -
Congrats Meadow. You give us newbies hope.
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Anyone doing CBD?
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Lou53, I totally understand what you mean, but there is a big part of me that is happy to have that option, it's just so confusing!! I did read after I posted, that most ladies who have surgery also have to take Tamoxifen, so there goes that idea. My hair was thin and fine to begin with, I only have about an inch of hair now, I was hoping it would come back thicker and with some curl (a girl can dream). I keep telling myself that many many women have little side effects.
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Meadow- 3 years!!!!!! Singing praises tonight. So happy for you. Thanks for sharing.
Xoxo
G
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Meadow congrats on three years!!!!! Thank God for that!!
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Meadow...great to hear about 3 years! So happy for you!
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Congrats, Meadow!!!
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HelloLadies & Gents,
Just to keep you up to date. I cancelled today's test. It is not at the center I use & don't want to duplicate tests. Am going to my MO for her to recommend Doctor at Sylvester for ENT. To see him & then get tests there. As I would not use other doctor if really anything surgery could help. As you all know I can't take chemo so if surgery out then I accept that & move on. Keep me in your prayers. Trying to stay busy & not dwell on what ifs. Just saw Pete's Dragon with my daughter. I loved it. Much better than version that was released when my children were young.
Congrats to you Meadow.....keep looking forward.
Oh I am also doing water aerobics along with my Yoga now. Not losing weight & no other concerns other than the 3 listed.
Sinus polyp, growth in or next to back of tongue (can't see it unless depress tongue), & vocal cord not working same on both sides. No pain.
Best to all, stay healthy. Will keep you all informed.
Marsha. 😊
HR
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(((((((Marsha)))))))
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Marsha praying for you!!!!! You are amazing & I love your positive spirit. You indeed keep looking forward. Please keep us posted. I can't wait to see Pete's Dragon with the children. Thank you for the recommendation. :-)
Love & hugs everyone,
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cocker - I am going to Auckland, Wellington, Napier, Christchurch and Queenstown with many beautiful spots in between those cities. We will visit Rotorua to experience the geothermal springs. I have heard that New Zealand is a beautiful country - hopefully by the time we are there it will have warmed up a bit. We will be there for the month of November. We have had a very difficult time deciding where to visit since it is all so amazing, so we are hoping that we have chosen well.
Hope your leg is continuing to heal well.
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Cathytoo...What is CBD?
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Never mind,,,just google it. I wish! I'm in PA and they don't allow that here (yet!)
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I was thinking "Central Business District"," not medicinal marijuana! :-D
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Hanley50...it's hemp oil that you ingest every day by spraying. Google Charlotte's Web
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cathytoo, what does it help with?
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Val......prevents recurrence. Lots of studies done and being done. My MO said it can't hurt and might help
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wow, i'm in nc and not sure if legal. would love to give it a try.
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Hey Cathytoo - I asked my MO about that and she wrote me a prescription (even tho you don't need one here in WA state - weed is legal recreationally and medically) but I haven't done anything with it cause I don't really know what to take! :^/ I guess I need to go do more research!
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