Calling all TNs
Comments
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Hi...I am new here because until this week, I thought I was ER+ and have been taking Anastrozole for over a year. The other day at my 6 month MO visit, he told me my ER+ is only 2% and if I wanted to stop the meds (SE of hairloss and bone loss) he would understand because of my low %. I was shocked because until now, he had insisted I take it. I asked was I triple negative and his answer was "that's just a number". So my question is...have any of you taken Anastrozole or Tamoxifen even tho you have a small percentage of ER+? Thanks for any info you can give me.
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schatzi- I am 3% ER+ and my MO treats me as TN- no Tamoxifen or Anastrozole. Again, I think this is a case of different doctors having differing opinions on the whole positive/negative thing. I do believe there is someone on this thread, forgive me because I can't remember who, that is taking Tamoxifen for low ER+. At first I was upset because I thought any positivity should have Tamoxifen, but there are side effects with it so then I was relieved not to have to take it. If it ever comes back and it is ER+, I will be pissed. Crappy cancer makes it so hard to know if you've made the right decision about anything!!
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Hello everyone, And welcome to the new ladies. I have been off-line for several days. Took a long-planned trip to tour NYC with 3 of my gal pals. I had a wonderful time. But back to reality for me today.
I have a question: Have any of you came up being Hypothyroid? I just got the news that my TSH level has jumped up. It was normal just 12 months ago. My PCP wants me to start on Synthroid and I am dragging my feet about having to take yet another medication. Any Thoughts?
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Navymom,
I've been hypothyroid for eight years -- long before my breast cancer diagnosis. Ive been taking synthroid the whole time. I haven't noticed any side effects, maybe because all it does is replace real thyroid hormone with a synthetic.
I would recommend starting soon (if your doctor advises that) because hypothyroidism is progressive and the symptoms of being low are pretty bad. It took five years for me to be diagnosed and I got more and more tired, along with other symptoms. My endocrinologist looked back at the TSH tests from my PCP and said I had been hypo for five years.
One more thing: Endo doc said some labs still don't know the correct ranges for normal/abnormal. Hypothyroidism is so common that some hypo women got measured with the normals and the reference ranges got skewed.0 -
TifJ...thanks so much for your input....you are so right...who knows what is the right thing. My hairloss is getting significant and I am afraid after another 4 years, I will be bald in the front. Jeez I am starting to look like my husband. I doubt it will ever grow back.
I must also tell you I am 69 so would probably have had some thinning anyways but then there is the bone thing. Also I had one node involved.
I am also have the beginnings of osteopenia. He can't put me on Tamoxifen because of SEs of blood clots which I got during chemo. So I am screwed!
NavyMom...I have been on Synthroid for over 35 years (because of surgical removal) and there's never been any side effects at all...and I have had a lot of different dosages too. My thyroid is totally screwed up but yours will be easy to adjust. Trust me, you will never know you are even taking it!
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I was on Letrazole for a 1% ER + local recurrence. The original TN was 0%. But the SEs from the Letrazole made me so miserable, so achy sore all the time. I stopped taking it. Have not told my onc because I haven't seen him since last summer. Honestly he doesn't do much for me - asks how I'm doing, feels around for lymph nodes, does a CBC and metabolic panel. And that's about it. I'm 4.5 years out from original diagnosis now, and almost a year out from local recurrence.
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minxie...I have been seeing my MO every six months since I finished treatments. I honestly don't know why because he doesn't order any tests/bloodwork or mammograms. My PCP does all that.
He doesn't feel for nodes or anything. He sorta answers my questions but of course I always think of things to ask after I leave. I am so fed up with this. I am debating stopping the Anastrozole when my current script runs out. I don't think he would care. He offered to change me to Aromasin but what's the point and I bet I would lose hair anyways. Hair loss is the only SE I have after a year. He said if I really wanted to stop, I could. Funny because in the beginning, he was adamant that I had to take Anastrozole.
Just wish I could make a decision and stick to it. I am going to my Daughter's for dinner tonight and she is a retired nurse...will ask her opinion.
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Thanks for the respnses regarding hypothyroid. I will be putting a call into my PCP tomorrow to request further lab work. Once that is drawn I will start taking the Synthroid med. My sister has a history of Hashimoto's and eventually had to have her Thyroid removed. With that info in hand, I would be shocked if my PCP declined my request for a more thorough look at thyroid lab work. After all, he is the Doc who ordered the Metformin for me when I told him about what the current research was showing. He is pretty open minded and willing to hear me out. I'll post again a let ya know how it all turns out.
Happy Easter to all that celebrate.
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Here is some information that I came across today regarding probiotics:
http://www.reuters.com/article/2009/07/07/idUS174822+07-Jul-2009+PRN20090707
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Hi Ladies - I need help understanding something. I finished treatment in January. I had a PET Scan in March and had my port removed after getting clear results. Today, I went for a follow up Mammo. They then sent me for an Ultrasound to get a better look. The Radiologist said that I have a lot of scarring so he could not conclude anything, so they scheduled me for an MRI on Friday. 2 questions:
1) Since I had a clear PET, isn't that enough?
2) Ever hear of this?
I'm scared out of my mind :-(0 -
Hi ladies! I made it back home to Nebraska on Saturday. I am SO glad to be home!
I saw my MO and my surgeon for follow ups last Wednesday. The new tumor that she (surgeon) removed was 8mm and irregular in shape. She barely got the 1mm clearance that they want. It had a little finger/neck thingy that was almost to the chest wall.
She removed all level 1 and 2 axilla nodes. 46 of them. 46!! Only one had cancer (the one that the needle biopsy was done on). It had cancer within the node and also some cancer cells outside of the node.
The physical therapist said with 46 (plus the one sentinel node from last year) nodes removed, I should wear my lymphedema sleeve and gauntlet forever. That was news that I didn't really want.
I will do rads on the level 3 nodes after chemo.My MO said that although I am not considered to have metastases, he wants to treat it as though I do because the cancer was back within 5 months of rads. He is suggesting Xeloda with Ixempra for 6 rounds of 3 weeks each.
Have any of you done this? Does it sound reasonable? When I google it, I get articles and posts on boards from 2010 and one on the TNBC Foundation site from 2012. Nothing says it's cutting edge or tried and true.
I have to say that I'm pretty worried and trying not to be. It makes me want a cigarette just thinking about it....and I haven't smoked since 2002. I will resist the urge....but just sayin'.
Thank you all for your help, good thoughts and prayers. You're the best!
Phyllis
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Phgraham I can't answer your questions but I can send you a hug & say a little prayer for you:-)
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Phyllis, I have no experience with this, but sounds like our MO is staying on top of this which is good. Sending only strong positive thoughts and calming hugs
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phgraham,
I pray for you to find your answers and have peace of mind. Sending hugs and blessings.
Sheryl
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Phyllis: Sorry you're dealing with this - but just the one node is a good result. I can't help with your question, but hopefully someone will come along soon to answer it. One of the ladies here has posted to a medical center site - I think it is John Hopkins, where you can get online answers from one of their oncs.
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Phyllis...I'm not any help either except praying for you! One node out of 46 is great news. Your doctor seems to be really proactive with this! I would trust him. Hugs to you!
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Thinking of you Phyllis.
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Thinking of you, Phyllis. Hugs.
Intersting update on my hypothyroid issue. I called PCP office yesterday and requested further blood work and they obliged me. I got to the lab and one of the tests I requested was not on the order form. The lab called the PCP and got it added on. I get a call from PCP's nurse this am telling me that ALL the blood work came back NORMAL. Even the repeat TSH came back normal. New result is 2.2 and abnormal result from 2 weeks ago was 5.7. Hmmmmm. And to think that medication was ordered and I would have already been taking it had I not been proactive for my own care. Hmmmmm. Another good example to get educated, ask questions and ask some more questions. Be your own best advocate. Also, when blood was drawn 2 weeks ago, I was very ill with cough and sinus congestion. I asked at the time, if being sick would have any influence and was told no. So there ya have it.
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NavyMom - that is so interesting about your blood test. Perhaps this might suggest that not all blood tests are reliable!! I would guess that your cold could possibly impact on the blood rsult - but who knows!! Lucky for you that you didn't go on the medication. We really do have to speak out for ourselves all of the time!! Good lesson in your story for us.
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I am trying hard to understand all these TN DXs...It never occurred to me 18 months ago to even question the % of the ER+. Just lately, after listening to other gals, did I even consider perhaps I was taking Anastrozole for nothing. At the time, my MO was VERY insistent that I take it.
When I questioned him last week, he left it up to me. I am reading all your posts with interest.
Thanks for being so helpful and I wish you all good health and the best possible results.
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Phyllis, I like the approach your MO is taking with your treatments. Sending you tons of hugs full of strength and keeping you in my prayers!
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schatzi14, I'm considering taking one of the hormone therapies after my chemo is done and I only have 1% estrogen positive! I NEVER want to deal with this again and I'm going to do whatever I have to to try to make sure it doesn't. I am very realistic and I know that, even after all this, it may still come back somewhere on my body, but I want to do everything they offer me to try to help it not happen. Just my opinion, of course.
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teresa...that is kinda how I feel as well. For that reason I am scared to stop taking it, especially since I just had a lumpectomy, one positive node and am grade3. Odds are against me at this point. I am very positive about it tho.
Will see how the second mammogram goes this summer.
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I'm suffering through rads and reading all your posts waiting for sleep to hit me. I an wondering if I need to find out my percents for the HR's? If it would matter for any reason. I still have my port in and am keeping it though the Medical Oncologist says i should take it out.
Oh hell, I really just want to think about Summer vacation and play with my kid, do some writing.
NavyMom, thanks for that post about your bloodwork. It does pay off to be an advocte for yourself and know what is going on. There is so much good support here and so many smart ladies. Thank you for that. I am so grateful.
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Yesterday I finsihed my last chemo treatment (please have let is worked) 6 rounds of TAC. This morning I woke up and turned 34. I have been arguing with my Onc for about three months now about pain in my back and pelvis, he strongly believes that it is from chemo. I say I don't know what it's from - a tweaked back or cancer but I think we should rule something out. No one should be in back pain, taking pain pills and sleeping on a heating pad every night....come on something has to give. We agreed to let this round flush out and meet in 3 weeks. I am going to keep a log for the next 3 weeks for where the pain is, when it started, what was I doing and the severity/level of the pain. I start Rads starts in 3 weeks - ready to move onto to a new treatment! Man I want some hair on my head....going to have to be really patient on that one.
About ER+ % - I was zero across the board for everything
I play the sit and wait game.Have a good day my TN family.
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Happy Birthday Jenjen1, may you have a happy, relaxing day filled with fun and love.
I sense the worry about your back. I would insist on getting it checked out, as NavyMom has pointed out about being our own advocate. If you feel something isn't right then that is adding stress to your life worrying about it. I have read that most doctors like to wait 2 weeks to see if the issue resolves or not so maybe explain to your dr.that you are really stressed about this and compromise on a shorter wait period.
Good luck with rads, I will be starting that in July, asi have 2 more chemos to go. I'm hoping that it will be easier, although for me it's a 2 hour drive one way, so that is going to be the hard part.
HAPPY HEALTHY FUN BIRTHDAY Jenjen10 -
Jenjenl~Wishing you what ever joys you can squeeze out of your birthday!! We share the same date:-) I'm getting a biopsy & chemo for my "special" day ha ha. Congrats on being done with chemo and hoping the SE start going away. Take good care and Happy Birthday!
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jenjen,
I hear you about the hair. I find I avoid looking in the mirror because when I am home I don't wear any head covering because my head sweats alot. I refer to myself looking like a prisoner of war and I just realized that I am in a war for my life so a little time with no hair is a small price to pay to win this war. Finished chemo and start rads Monday so the first battle is in the bag and it was my victory.
Hugs, Sheryl
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jenjenl...Happy Birthday and congrats on finishing chemo.
I get the hair thing..I am PFC 15 months now and have had 2 haircuts but I am still taking Anastrozole and guess what? MY darn hair is falling out again. Because I am basically TN, I will stop the meds after my next mammogram in the summer. It's just NOT FAIR!
At least most of the TN gals are spared the anti hormonals. Some gals have a really hard time with them. Plus the SEs can be dangerous ie: bone loss or blood clots. Guess it's the silver lining after all.
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hey schatzi: whatever you decide about the hormone therapy, please know the odds are not against you! Most TNs are grade 3 (it's aggressive), and most do not recur. Your stats are pretty similar to mine.
Yesterday, I went for my annual check-up with my BS - she is my favorite doc... super knowledgeable, skilled, compassionate and reasonable - and she gave me another all-clear. For the first time ever (now that I am 3 1/2 years out, lol!), she told me that "TN is aggressive and if it recurs, it typically does so within a couple of years." Of course I already knew this, but it was nice to hear it from her.
jenjen: Congrats, nice to be finished chemo for your birthday, though it sucks you've had to deal with this at such a young age. May you enjoy many, many more birthday celebrations! It's true that chemo causes aches and pains.... but it's also wise to get anything unusual or persistent checked out. A pain log is a good idea, then insist on a scan if nothing improves.
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