TRIPLE POSITIVE GROUP
Comments
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tonlee
so what does the thyroid issue mean for you? are you on meds now to regulate?
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Rozem I had very dense tissue as well. I thought that's why I got an US guided biopsy instead of an MRI guided but it could have also been do to my tiny size. I would have kept righty if there was no issues with it in spite of the dense tissue eventhough I initially wanted it gone. I'm OK with the fact that is had to go but if I had a choice I would have kept it.
Tonlee my mom had her thyriod removed (they thought it was cancer but just abnormal cells) years ago when I was a sophmore in college. I think she's on a drug for that. Seems like she has no issues from it.
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Kitchenella:
I don't like thinking it either, but according to Dr. Susan Love, docs apparently do get paid more to do mastectomies, and it's easier surgery. Dr. Love talks about it on page 4 of the following article: http://www.lifescript.com/health/centers/cancer/articles/dr_susan_love_breast_cancer_myths_revealed.aspx
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LilliM I know my BS doesn't push BMX. Initially when I wanted to do a BMX (we know lefty had to go) he said he doesn't feel the need to remove healthy tissue but would support what ever I wanted. After he saw the MRI he changed his tune. I also know another gal here on bc.org who went to him and told her that he would recommend a mx/bmx… it wasn't necessary. (She is actually having her bmx with another BS tomorrow but only because that BS does areala sparing and will give her smaller scars ).
A good BS doesn't make his/her decisions based on what they get paid. Give these surgeons more credit. I truly feel my BS cares deeply for his patients. I think this is more the norm than the rarity.
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Rozem, do you know if rads for node negative is common even with a bmx when LVI is present? I was told no rads, but the LVI is something I continue to worry about. Oncs told me there was nothing to radiate in my case because the tumor was removed by excisional biopsy, then 2 months later I had a bmx with SNB and started chemo 4 weeks later. The LVI factor was a non-factor to my medical team. Im as comfortable as can be with my decisions so far, but you know how it is - always wondering if something extra can be done. I just turned 42 and plan to get an ooph over the summer. Even tho my onc said its not standard at this time. For me, that's a piece of mind thing just as the bmx was - even if its not medically known to reduce recurrence.
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Rozem, I had an MRI guided biopsy because the presurgical MRI found a small abnormality in my "good" breast. I tolerated it very well, I was calm, they released my breast then recompressed it when it hurt too much at first for me to be able to hold still for the whole test, and, well, I am tough! It was much better than the ulatrasound guided biopsy I had on my thyroid several years ago. However, I knew what to expect, and that helped. With any test, I speak up if I am not comfortable. However, that didn't help me much with the dye injection for SNB!
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hi shore
i think there are so many opinions about LVI that i would not worry about it, especially in your case. You had such a small tumour. I have heard some consider it a positive node others do not, however i think it is just to determine treatment (if you are not her2 and may or not need chemo for instance) You had chemo due to being her2 so i don't think its an issue. Please note that i had chemo prior to surgery so my reasoning for doing rads (even though I was told I could pass) was that i really don't know if i had node involvement prior to chemo(my nodes were clean after chemo) - so for me, in my particular circumstance, it just gave me some piece of mind. Like i said in my previous post, i was told a lot of women with her2 tumours have LVI and lots and lots of them have msx no rads. My RO was the only one who was concerned about it - and RO's like to radiate so take it with a grain of salt. I also asked about the ooph and everyone is telling me no - I just turned 43 They are telling me the bone loss/heart issues outweigh the benefits but trust me I want to take the most aggressive approach so this one is weighing on me too. I met someone on this board whose onc is recommeding it to her (stage 2 er pos) so that one is all over the board too - UGH this is so DIFFICULT
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Thanks Rozem, im sure neo adjuvent chemo vs adjuvent is a factor too as far as rads go. My gyn and the gyn onc I consulted with are not concerned about the effects of early instant menopause caused by ooph as those can be avoided and managed, although they agreed with my onc that its not standard at this point in time. Im going to do it, and probably get total hysterectomy too because of pre BC gyn issues. For me, I have to feel like I did everything to lessen chance of recurrence even if its only a very small percentage.
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Rozem and Shore Re the ooph. I'm 42 and I haven't had a period since the second TC 1 year ago. I've been asking everyone (my GYN, RO, etc) their opinion about what I should do if my periods come back (which seems somewhat likely) and they are all saying that it's a very grey area for early stage women who are young and not close to natural menopause because taking our ovaries now increases the chance of bone loss and takes away the protection for the heart-the risk/benefit ratio Rozem mentioned. They've told me that a good starting point would be Lupron shots to shut down the ovaries if necessary instead of going straight for surgery because at least it's not permanent...0
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lago:
Regarding doctors being paid more to perform mastectomies and it being easier surgery, this wasn't my observation. It was an observation made by Dr. Susan Love in the article I referenced. Does Dr. Love need to give her colleagues more credit?0 -
Dragonfly, it is a grey area at our age. Im not interested in lupron because of SE and am done having kids, so my only concerns with ooph are the bone/heart health. I've been in chemo pause since treatment started in September. I guess the bottom line is that I don't trust tamoxifen alone and want extra insurance. Even if its irrational on my part, feeling like I've done everything possible is what I need to deal with this. Were the doctors you spoke with about the ooph very opposed to it, or just telling you there's no significant benefit to it?
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Shore1 I discussed it with my RO and Gyn because I have no rapport with my MO (in the process of changing if you remember that story). The RO and Gyn are wonderful and are willing to really discuss these things. I got the message from both of them that if my periods resume given my high hormone + status (90%+ ER and PR) that something needs to be done and the question becomes what? My RO even came right out and said "you cannot get your periods again" so I think there is concern about how it factors into recurrence and what we should do. My doctors just don't want to be the ones to actually recommend ooph because it's not standard of care in the risk/benefit ratio and would be rather aggressive but they seem to be fine with me choosing it if that makes sense. Meanwhile, I still have no idea what I'll do but I don't have to decide quite yet-the periods are not back at the moment.
Tonlee Are you doing an ooph? and what was your thinking on this-remind me...You're my age as well, correct? so you are right in the middle of this dilemma.
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shore/dragonfly
i also have a crappy rapport with my MO and am in the process of changing....when I asked her and another MO at Dana they both said I was not at high risk for reaccurance and therefore would not recommend it. So my reasoning is that if they recommend it to high risk patients (stage 3/lots of nodes etc) then why not lower stages? as far as I'm concerned the her2 part of my diagnosis trumps stage anyway so why not treat me just as aggressively? again its probably the risk/benefit ratio. I know they can control a lot of the issues like bone loss but my biggest concern is the heart issues. With chemo/herceptin and an ooph wow thats a lot on the 'ol ticker. I know we are young but this still concerns me. I also read somewhere that having an ooph shortens life span due to the heart risk DOUBLE UGH!!!
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LilliM Yes I do think Dr. Love needs to give her colleagues more credit. While I do respect Dr. Love I don't 100% agree with her all the time. That is such a gross generalization and unfair.
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QUESTION for everyone
what does the herceptin and hormone therapy that we are given post chemo do - does it kill bc cells? or just make sure that our healthy cells don't become cancer ? it is on the assumption that chemo does not get it all?
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Ton lee - how did rads knock out your thyroid if it wasn't hit by it? I'm sorry this happened. Hope an adjustment in meds will fix any issues this causes.0
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Rozem - I think what happens is those drugs block receptor sites on any cancer cells circulating in our system. This reduces their ability to replicate, and I think also makes them more vulnerable to our own immune system, which normally kills all the random cancer cells our bodies produce. (My onc said we all produce cancer cells and usually our immune system kills them off. Cancer occurs in us when our immune system fails to do it's job for some reason.)
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Ok, some good news. It turns out that my Mom will not have to get another MRI. They only want to do another mammogram of just her right breast and potentially another biopsy, but it would just be to her lymph node area if needed. They said her left breast is completely fine and will not need to be examined again based on all of the previous charts that were reexamined by the radiologist at the cancer center. At least, my Mom won't have to deal with another attempt at an MRI. She just has her Pet Scan tomorrow and hopefully we will know about when surgery is happening next week.
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Great news. Keep us posted
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Well ladies, I survived my follow-up testing today. After 12 (yes TWELVE) mammograms (increasing the compression as we went along for a "better view") of my reconstructed R breast, they were unable to visualize the calc they saw back in November. Geesh! They said too much inflammation obscured a good view - it is either still there or it is gone. I vote for gone! LOL Will need to repeat mammo's in a while after the inflammation goes down. (They feel the inflammation is residual from my 2nd fat grafting 9 weeks ago.)
Overall, even though I have no answer, I'm relieved nothing was seen. At least I think nothing big could be growing in there...surely that would have shown up...at least I hope! Not going to obsess about it. Going to enjoy our trip to New Orleans this weekend!
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rozem - the Herceptin is for the Her2 overexpression on the cells, Tamoxifen is an estrogen blocker on the cells themselves, and aromatase inhibitors are systemic estrogen suppressors. The thought is that the cells don't replicate rapidly when these drugs are used.
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As I am nearing the end of my treatment, I freak out more about a recurrence
My MO has recommended taking one baby aspirin (81mg) a day. Apparently they can help to reduce the chances of it coming back. Have any of you wonderful ladies heard of this? and if so are you taking them? I bought a bottle of them today. Loved those little orange pills as a kid!!! I think I thought they were candy way back then. Surprised I did'nt bleed to death!!! LOL 0 -
Dragon,
There are studies that show an Ooph (or Lupron) increases non-recurrence/survival by up to 30% in women whose periods come back. I don't have time to link them all right now...but it only takes a few seconds to find then in google scholar and the national cancer institutes site....heck, the topic is even covered on this site...though just in general.
http://www.breastcancer.org/treatment/surgery/new_research/20080111b.jsp
I have my Ooph March 2nd. I can't wait to get the estrogen out of my body....
As for thyroid...I was already on medication....the problem with the medication is it is simply T4...the other hormones produced by the thyroid are basically ignored by the medical community because they don't know what they're for....some Endos actually call them garbage hormones! (I don't believe ANY hormone is "garbage." They all serve a purpose even if we haven't figured them out yet!)
So most women who are hypothyroid still have SOME function, so they get small amounts of those hormones naturally. Once the thyroid quits, or is removed/killed, a woman no longer gets them. Imagine taking one pill, a single hormone (T4), the same mg everyday...to try and do the job of your thyroid that was adjusting your hormones minute by minute every day.
This is why a lot of hypothyroid women are fat. They just can't lose weight. The metabolism slows to almost nothing. And the fat tends to be strictly in the middle...we call it BUDDAH Belly. There is fluid retention going on there. Anyway, some other symptoms are losing hair, thinning outter eyebrows, fatigue, depression, inability to handle cold weather, low core temp, hunger, sleeplessness, puffy eyes, dry skin, grumpy, super heavy periods, etc.
When my meds need adjusted my face swells up worse than any steroid I ever took. lol
Ok according to the Endo and RO. (EDITED for Accuracy)..Scatter radiation can take out the thyroid, or damage it. .In my case RO told me this and I misunderstood (thought he said rads stays in our body), and when I asked my ENDO he just went with it lol...
My Ro says half of women who take radiation have thyroid issues, and most of them the first year after txs, and most go undiagnosed because it isn't checked and they blame chemo for the symptoms, or Tamoxifen, or an AI...or their docs say...we'll it's not working great but it is working a little so we won't treat it (and they're left with all the symptoms above).
Whew.
So the lesson in all that is, got Rads? Have your thyroid checked once a year. Don't take your docs word for everything being "normal" and ask for a copy of the lab work (boy we've learned that here haven't we?). If the TSH is above 3, (NOT 5 that was the old standard!) then you are hypothyroid and need tx. (And watch the weight fall off.)
I can almost look at a woman and tell if she is hypothyroid now.
It is certainly not BC, but I can tell you this...the fatigue from chemo didn't come close to the fatigue of an out of whack thyroid. Same with the fluid retention. Because I went over 3 years undiagnosed with it, in a way, it prepared me for chemo. But the thyroid living was much harder.
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Dancetrancer have a hurricane at Pattys for me- or at least watch everyone else.! and I am glad for you thatht the test did not show anything big- but GEEZE 12???? I thought 4 was enough. You win the crown for most mammys!
Laolson- good news.
Rozem- I was told that the BRCA 1 & 2 test is the one that tell them whereter the OOPH is needed? but I could be wrong. I am older as well, and was in menopause before bc so maybe that made a difference.
And LilliM- I agree with Lago- Dr Susan needs to give more credit to the BS's they really do try hard to help. I am sure there are a few- there are always a few in any profession who are in it for the money, but come on- dealing with cancer is not easy on EITHER end! Doctors don't like to lose either.
Tonlee- sorry about the thryoid- one of my sister is hyper, one is hypo and I seem to be the normal thyroid one- but we all are doing well on the meds. So will you.
Specialk - good luck with you surgery tomorrow! I will be praying for you.
To everyone I didn't speak to, Much love and small SEs.
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Hi TonLee, when did you finish treatment? Im curious because I just finished and want the ooph asap even tho my period didn't come back yet. I also saw the studies on ooph reducing recurrence, but my onc sticks to it not being "standard" with my stats. That's not to say it wont become standard in the next few years, but I don't want to wait around and see. Did your onc recommend it for you?
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Rozem, Herceptin is an antibody. According to the National Institutes of Health, "It works by stopping the growth of cancer cells." http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001048/
As far as hormone therapy, you did not specify a particular one, so here is info on Tamoxifen, a very common hormone therapy: according to the NIH, "Tamoxifen (Nolvadex®) is a drug that interferes with the activity of estrogen, a female hormone. Estrogen can promote the development of cancer in the breast."
"Estrogen can promote the growth of breast cancer cells. Some breast cancers are classified as estrogen receptor-positive (also known as hormone sensitive), which means that they have a protein to which estrogen will bind. These breast cancer cells need estrogen to grow. Tamoxifen works against the effects of estrogen on these cells.
You can see more on Tamoxifen here: http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen
My onc also has me taking a baby aspirin a day Bucky. Thanks for the reminder - I need to go to the store and get them!
Have fun in New Orleans dancetrancer! It is on my list of places to visit and I need to get there.
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tonlee thank you for the info on rads and thyroid.
Very interesting and informative. I have a friend who will be starting rads next month and I am going to make sure she knows about this!0 -
tonlee and so sorry to hear that your thyroid "klunked" out on you
My mom was hypothyroid. Is it hereditary? 0 -
shore1
i am meeting with a new gyn next month - will let you know what she says but i am leaning towards an ooph (i am 95% er pos)
i think you can do your ooph quickly -
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bucky - at my MO appt last week for my Prolia injection we discussed the baby aspirin - they recommend it also but I have not started due to tomorrow's surgery. Will probably start it in a couple of weeks. DH has been taking 81mg for heart health for a couple of years now.
moon - thanks for the good wishes - they called tonight and moved the surgery up by a couple of hours - less time to be nervous and hungry!
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