TRIPLE POSITIVE GROUP
Comments
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My bias is that the forums are mostly responses from those recently diagnosed (within the first few years), so that makes it harder for everyone to have genuine input with first-hand knowledge about long-term effects of the various treatments and choices.
Not everyone wants to hear it, though - especially when they have made choices and are in the midst of treatment.
I am 63 and about 12 years post chemo/rads/some tamoxifen, plus the partial hysterectomy earlier. About 2 years ago my skin, having been without much supplemental hormones for so long, became as dry as leather and the hair I grew after chemo at age 52 turned horribly dry and thin. The skin has continued to be extremely itchy now for 2 years, even though I have seen my PCP, a dermatoligist who did biopsies, and another PCP who wants me to get a second derm opinion. I requested low-dose estrogen replacement, but was refused "until there is input from the second derm doc". The most recent PCP gave me no recommendations for relief of any kind, and I am on the 2-month waiting list to see another derm doc. My cancer tumor was ER/PR + but that was 12 years ago. The evidence about estrogen supplementation is unclear at best at this point, and my suspicion is that it was the added progestin that may have been the cause for the conflicting information anyway. They certainly don't have clear proof that it wasn't.
I would not wish this skin and hair condition on anyone. Topical steroids helped some for a while, but that was only a temporary measure. The sleep aid used to let me sleep at night worked well, but it left me much more forgetful during the day so I gave it up. I am back to using melatonin for that. The only relief I get is with using baby oil that has aloe and vitamin E in it, and I use Skin So Soft spray on my hair just to be able to brush it.
There is no organized plan of care for any of this for long-term survivors like me.
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i am so sorry to hear of your long term problems, alaska. have you tried to drink straight aloe, or coconut juice? or do you take biotin? i am so sorry.
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Hindsight= wish I wasn't made to feel in a rush to having a Hysterectomy in 2004, age 47,due to fibroids. What the doctor and health care professionals failed to do, was to inform me of all the pro and cons. As I do feel, it was partially my fault because I did not research and gather enough useful information...I made the mistake of relying on the medical team way too much. One thing that was never addressed....was the fact that I had a wonderful active sex life with my husband and did not know that would be the total end of it. I did convince the doctor to at least leave my ovaries, believing if nothing was wrong with them, why then take them out. In 2008, diagnosed with breast cancer, my oncologist had the nerve to tell me, if I had them taken out at that the time, chances are I would not have breast cancer.
Triple positive
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Mountains the Dr. said that? Oh that's terrible to say to u or anyone and the Dr. should know better that there are no rules with cancer--if there were no one would have it. Geeze ask that Onc what book that came from The old testament of doctors or the new one.
AA I agree it takes time to see all that this disease ends up doing and some from our own decisions or Drs. decisions. I had a full hysterectomy about 10 yrs before my breast cancer, due to cancer so OK it had to be done, but then I had to have my GB out after so in my crazy head I think there is more room in there for organ to get a little wild--that's why my colon has moved growing up my side and pushing my liver into my ribs. LOl it sounds so silly but I think I've had my flying organdas because all these things add up. And u'r right about skin and hair it's like WTF happened and my nails too. Well I've started telling people I'm older so I don't look so bad to them then, It's an idea I had.
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Cripes. You're telling people you're older???
Still, hubby and I are both the same age - late 40s. He looks slim and young. I look blobby and older. We went into a chemist/pharmacy the other week to buy an over the counter medicine and the person serving us looked directly at me while saying "do you have a pensioner (over 65s) card?". I cried when we walked out of the shop...
Jenn
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Jenn... It is one thing to BE older and acknowledge it, and quite another to be under 60 and have to deal with premature aging. I'm sorry it is happening for you. I just hope yours is some of the temporary effects while still in treatment, since chemo is very dehydrating and at least for me (when I was 52), it made my skin look quite old and wrinkled and saggy and dry.
kathec, I didn't know aloe could be edible... drinkable... The skin thing is quite weird because it looks better than it feels. Yet it is so dry that I often put a thick layer of baby oil on at bedtime and then wake up itching again at 2 AM and put another thick layer on to stop the itching. At this point I feel I did my part by seeing a derm doc and having biopsies, and that it is unreasonable to ask me to wait months to be seen while I'm itching all over so that I can have a second derm doc opinion. I think the PCP should have had the smarts to give more consideration to a simple short course of low-dose ERT to SEE if it helped or not. This PCP has a remarkably high-level education at very reputable institutions, but it doesn't seem to have taught him what I would expect him to realize.
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LOL, Cami! Maybe I'll try that! People automatically add 10 years because I use a cane. So maybe I'll say yep that's how old I am. LOL.
Mountains, And your onc is wrong. You didn't have ovarian cancer which is the only thing that proves. While there is a connection between BC and ovaries it's not cut and dried! And they had barely started using Herceptin for Her2 at that time!
Oh and Cami, here's a story for your migrating organs. I had just had my 3rd baby about two weeks before I needed an X ray for my gall bladder. The radiologist comes in very upset and says " Did you have any symptoms other pain?" He looks panicked. And he keeps asking questions. I say what's up? He says things look a bit different than they should. Apparently, my organs had shifted because my baby was over 9 1/2 lbs. Nothing was quite right. When I told him I was only 2 weeks postpartum his expression just looked relieved. LOL. And during gall bladder sx at 6 weeks after the birth, my appendix was on top of my gallbladder. Not where it should have been. They removed it as i had told them to do that. 2 of my friends gad babies, had gall bladders removed and went back in to have their appendix out! I told him i wanted it out. I think the right choice if he would have manhandled it who knows? LOL. So, i really do believe in the wanderlust your organs show! LOL
Alaska, I know you've been able to bring a unique perspect I've to these boards!
Much love to all.
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Thanks, Moonflwr.One question of interest to triple positives that I have in regard to ER positivity and the reported tendency for late recurrences is this:
Why would bc recurrences tend to happen when these patients reach an age with the lowest estrogen levels? Could it be that the effect of estrogen level reverses at some point, and possibly supplemental estrogen would be preventive?
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Ohh good question AA--again we go back to balance in our bodies to work correctly--when it out of order it's not functioning 100% the way it should--something over time has to happen because of it.
And moon thanks for understanding my flying organdas. My reasoning is my Drs. think I'm really crazy. They think very medically, while I tend to think logically.
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Alaska sorry to hear you are having these issues. There is know way of know for sure if it was cancer treatment or something else that caused these issues. I know my skin is dryer but I also know I went through chemopause (just a few years early) and would have happened anyway. I see my skin sag more every year. But aging means you are alive. Why is age looked as such a terrible thing?
As far as why we are more prone to breast cancer as we age yet our ovaries produce less estrogen. It's because our middles get bigger (more fat) and the estrogen comes from there and our bodies don't have as strong of an immune system as we age.
Mountains your doctor is full of shit unless s/he has a crystal ball. Your risk would have been reduced if you had the ovaries out but you would have had a bunch of other issues getting them out that young. How hormone positive are you anyway? Large majority of us triple positive are not high.
Cami & Jenn I used to tell people I was older all the time. They all said I looked fantastic for my age. But then I turned 50 so telling them I was 50 was the truth. Currently 50+2.
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Lago,Aging gradually gives people time to adjust to changes that chemopause with more extreme and rapid changes does not allow. It is hard enough to grow into the changes at age 40-something when the changes are more gradual with more estrogen, but as time passes the flat low estrogen is more and more obviously damaging. It is easier to suggest that the 24-hour-a-day painfully uncomfortable urticaria may be due to mysterious "other" causes not related to aging without defining them, even though a professional dermatologist was unable to find any other cause for the problem. Since I am the one who is itching continuously and I don't accept that as "normal aging", our opinions about it do differ.
Aging is looked at as a terrible thing because our middles tend to get bigger and more uncomfortable, and with the extreme drop in testosterone levels our bodies are composed of more flab and less muscle, given that muscle is built with testosterone. I am grateful for the ability one Canadian female physician demonstrated in realizing that more of her patients with bc who happened to be on metformin were doing better. The metformin has helped me metabolically to simultaneously achieve a reduction in abdominal fat and to kill stem cells that are thought to be one reason for bc recurrence.
But aging that happens with rapid loss of sexuality and gender without reasonable advance counseling by the medical professionals who are advocating treatments that bring it on, IS genuinely a very cruel and disrespectful way to treat patients. And they should not be "expected" to handle it as a matter of simply "aging".
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I'm curious to see what my MO says next week. She obviously believes that keeping my ovaries provides benefit once I'm past the 10 year tamoxifen window, because after my surgery she said that ovarian ablation wasn't something we needed to discuss unless I had problems (gee, thanks ovaries for causing problems). My head is literally spinning. Every time I think I have come up with the perfect solution, I read something else and then my head starts spinning again. I posted on my blog about this decision process and have literally had people coming out of the woodwork the past two days telling me about their experience post-surgery - and they've all said it is fine! (granted, many of them kept their ovaries . . . and their reason for surgery was often because of fibroids).
Lago -since you've made the tamoxifen / AI jump - help me wrap my head around the implications of that for a 38 year old . . .
Jenn - I am also highly ER / PR positive - both >90%. It seems like my body is still producing lots of estrogen (trying to remember now where I read it, but since the tamoxifen interrupts the hormone cycle it can actually cause your body to make more FSH and signal your ovaries to produce excess estrogen, right??) Just wonder how the tamoxifen can provide so much protection if my body is producing that much excess estrogen . . .
I am kind of leaning toward asking about having both ovaries out so I can come off the tamoxifen - and hopefully that will fix the uterine problems. If you have low body fat, would they consider taking out my ovaries sufficient insurance and that maybe I don't need to go on an AI?? But, would they let me do a low-dose HRT after that 10 year window?
Alaska- thank you for providing your perspective. I do think doctors tend to not think about how we're living past diagnosis. As long as we don't have cancer any more, I think many of them think their job is done . . . but long-term quality of life is something to consider -- especially when you're 38.
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My onc took me off of Tamoxifen after I developed numerous large endometrial polyps (thankfully, all benign). He did not feel the risk of Tamoxifen (higher risk in my case due to it causing so many endometrial polyps) was worth the benefit - FOR MY CASE - note - I had a very small invasive IDC (3 mm). I had a large amount of DCIS, but BMX so hoping this isn't a bad decision. I could have a hysterectomy and stay on Tamox but at age 46 I am not willing to risk sexual dysfunction issues.
So many difficult decisions we all have to make along this path.
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McKatherine I never made the jump. My onc felt at my age (49 at the time) and my mom/sister history that my cycles were not coming back. Started with the ESD (estrogen sucking drug in my case Anastrzole). She tested my esterdol (sp) levels for 5 months. I assume since I had some SE that also confirms the AI is doing its job. I was worried about Tamoxifen. Blood clot family history. Can be an issue on Tamox.
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Lago, Katherine, dancetrancer,As one possible way to better measure who benefits from tamoxifen, I'm hoping for you all that the Karolinska studies continue to show that breast density and changes in breast density with use of tamoxifen will prove valuable.
There is no way to know for sure why my limited use of tamoxifen "worked" for me or whether I simply never needed it at all, but I wish the reasons were known in your behalf. I do suspect that the very rapid loss of major breast density that occurred for me within 3 months of starting the tamoxifen was the reason, which is what the Karolinska Institute is investigating. (Google Karolinska Institute and tamoxifen.)
I took tamoxifen at full dose for 1 year and then at half-dose for 3/4 year and then stopped it entirely. I've never been on an AI. At 10 years out my BS told me to be sure not to start either tamoxifen or an AI. My bone density is off the chart excellent.
A.A.
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Hello ladies! I am 4 weeks post surgery and happy to report 100% complete path response!!! I feel almost like myself again, except for the tightness in my underarm. Depression over the lost breast really got me down 2 weeks out, but an increase in meds helped.
Now, on to rads.
- because of node involvement. If any of you had a similar dx as me (stage IIIa), could you have a look at my question in the rads boards at http://community.breastcancer.org/forum/67/topic/817515?page=1#idx_1 ?Thanks for the excellent guidance you all give. Blessings and healing for you all.
Leanne
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Leanne Im' happy to hear u;r doing well and u'll be starting rads, which is the not so badpart. So u'r done with chemo?, done with surgery? and now rads...Whew for u.
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Yes, it is a very lengthy process and still a long road ahead. So glad chemo is over. My head doesn't feel foggy any more, but I think my short term memory has taken a hard hit.
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Alaska, have you had your thyroid parameters measured? You could possibly be hypothyroid? I actually found chemo made my skin the best it has ever been (how weird is that?) I now understand the importance of exfoliation.
On the ooph topic, my Mom has a good friend who was dealing with a lot of fibroids years ago (she was late 30's). When talking to her "doctor" about a hysterectomy he said "let's take the ovaries. What the hell do you need them for anyway?" My Ma and her friend always joke with the come back "well, how about your balls...are they necessary?" But my best buddy had a hysterectomy about 3 years ago and her gyn put everything on the table. She had a tough decision to make because there is a lot of breast cancer in her family (aunts, not mother or sisters) but she opted to keep them. I think they just keep us young.
Jenn, you look beautiful. Don't worry about that pharmacy dorkus. He might have been distracted and didn't even really see you. But I agree, as survivors, we very likely do look a bit older than before. But we earned that!
YAY Leanne!!
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McKatherine, I love the new picture! Tamoxifen works differently from Arimidex in that it blocks cellular receptors for estrogen. It is called a SERM, selective estrogen receptor modulator. So go ahead, make all the estrogen you want, it won't get taken up by the cells (except the selective part means it can get taken up by the ostoeblasts so it doesn't hurt bone). Arimidex and the rest of that drug family inhibit the production of estrogen by blocking the enzymatic path between testosterone and estrogen, so you just don't make estrogen anymore. This is beneficial because of what Lago says, at this point, while your ovaries are done and sleeping, your adipocytes make estrogen out the ying yang. I think my fat belly is why I've never had any menopausal symptoms (except building more fat belly).
So we gals on the aromatse inhibitors sit here with our estrogen receptors hanging out there looking for any estrogen they can, while you guys on the SERMs don't have any receptors (they are blocked) and so you can make all the estrogen you want, it just won't do anything. We learned in biochem 101- most molecules can't do anything in the body unless they have a cell receptor to invite them in.
Alaska, where I'm getting worried these days (besides my estrogen producing fat cells) is hormonal supplementation in food. I don't really eat meat, but I am a dairy-aholic...
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Pbrain - always good to have a chemistry refresher.
but a practical question - how much estrogen can a 5'7 1/2" woman who weighs 120 lbs soaking wet actually make if I get rid of my ovaries? 
Oh - if you're a dairy-aholic find a good local dairy that has grass-fed cows. Grass fed dairy is really good for you!
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and thanks for the compliment on the pic. I had a hard time finding one of me since I quit wearing my wigs (I'm usually the one behind the camera!).
And I had a hard time finding one where my new hair didn't look like Harrison Fords - it's always sticking up in weird places!
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McKatherine ~ So great to get to see your face!
If you choose to just have the cyst removed to see if it's benign or whatever have you thought about having your ovaries chemically ablated? I know you mentioned that you are terrified of lupron, but there is another option which is zoladex. I am currently on zoladex injections to shut the ol' estrogen makers down and I can honestly tell you that the side effects have been extremely minimal {hot flashes, skin is a little more dry}. I have only been on if for a couple of months, so I suppose worse things could be in store, but for now, it's fine. I know two other girls in my age range on it and they are also fine. In addition to the zoladex, I am also on tamoxifen. Sometimes, even if a woman has ovary removal a doc keeps her on tamox instead of switching to an AI for the protective benefits {bone/ heart/ mental functions}, especially if she is young and was no where near "natural" menopause. Just something to think about, no ovaries does not necessarily equate to no tamoxifen.0 -
McK, that is a cute pic!
Pbrain I have a lot of belly too..and I still have menopause symptoms. I went through it once before not all that long ago about 5 years before BC.. so I'm p*ssed I have to do it again. LOL oh well. It is what it is. And if you find a Local farm get the grass fed beef and dairy from them.
Much love to all.
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DXat32 Your beautiful:) I was also 32:( Thanks to all these lovely ladies Lago& everyone else on here!!! I would not know half the crap about Breast Cancer!!!! I am doing everything they tell me lol my doctors didn't suggest anything, I did due to these ladies on here lol I am finally going back to Radiation Oncologist tomorrow for Planning Cat Scan& tattooing-hope it don't hurt:( I Finally have pretty much of my Range of Motion back to left arm:) Yay!!!!!! So I think Monday she will start my Radiation!!!! Feb.5th I have a pre-op appt. to sign for my Total hysterectomy which I will be getting after my radiation is done!!!! So around the end of March I am figuring for this surgery!!!! I also went back to the gym& been going almost everyday to get back in the groove:) Yay!!! Now only to lose weight just seems impossible with my hypothyroidism but working on it:) & also changing diet!!! I did change also in it already
Still needs work on it though!!!! I am on Tamoifen 20mg/day until I get my hysterectomy then he will put me on something better he told me:) !!!!! Thank you all for your help ....I am trying to fight my hardest for my 5 kids:) I just keep on praying to get skinny, LEARN TO SAY NO TO SUGAR& I will be happy !!! I need to lose weight reconstruction doc said to do the tram flap!!! Anyone ever have the tram flap done here? How was it verus the boob implants? I cant get the boob implants due to him taking a lot of tissue out:) Just taking one day at a time & hoping for the BEST!0 -
Enjoyed the in-depth explanation, Pbrain! As for thyroid, I keep getting it tested and it keeps coming out "normal". And when it comes to dairy I'm strictly organic, no hormones, no pesticides, etc. I do have a bit of the organic ice cream pretty much every night, as well as using organic 1% milk.... putting my $ where my mouth is.0 -
goutlaw, sounds like things are really moving along for you - it's great to hear you being so positive about it all!
McKatherine, love the new pic! I know exactly what you mean about being behind the camera; that's me too. I'm trying to be more conscious of being in the photos, rather than just taking them.
I'm just 2 days after my first faslodex shots. No major se's; quite sore at the injection sites and the hot flashes are even stronger 😕. Feeling very hot all the time and I have a lovely red face, but other than that ok for the moment!
Today's also my birthday - the second I've had since dx, so I'm determined to have a good day today!!!
Nicky
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Happy birthday, Nicky! I hope you've had a wonderful day.
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Does anyone know the following about AI's?
1) How long does it take before bone loss starts to show up?
2) If you stop the AI, will your bone density go back to what it was prior to AI's?
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bone density will not come back without some help, not sure about how far into A.I. therapy that the bones start to degrade. ask you doc, or use the search function to the left! maybe some one else will come along and be more knowledgeable! good luck!
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