TRIPLE POSITIVE GROUP
Comments
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rozem: common sense tells us the recurrance rate should be the same but I know there is a systematic review paper that actually found that the rates were higher for those who found it themselves compared to the same size tumour found via screening.
I'm in the found it myself bucket too because mammograms are not recommended here until the age of 50 and I am only 46 and had never had one...
Jenn0 -
jenn - same deal here in canada, no mammos until 50 don't even get me started, ok just a little background i can't resist...
oct 2010 i have my physical, ask my doc if i should have a mammo, no, you have no family history (this is the biggest load of @**@ because only 15% of all cases have a genetic link) plus we get concerned about radiation dose blah blah blah. I "negotiate" with her to start at 45 instead of 50. Bamn , 9 months later i have a lump
ok this is the good part...3 months after i am diagnosed I go see her, guess what? she has BC! I asked her how she found it, myself she says. Im thinking "yeah right " I suspect she was getting mammos (she's 47)
anyway...just a little venting
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rozem: I am angry about the screening recommendations here too. It is based on govt health economics. I did not know this until after I was diagnosed. If I had known the medical recommendation globally is 40yrs I would have gladly had one and paid for it and may have found the cancer before it spread to my nodes. My tumour was very visible on mammagram and would not have been hard to spot earlier...
PS: just have to appreciate karma, although a little guiltily since not good for anyone having cancer. Maybe she was inspired by you to change her recommendations.
Jenn0 -
Hi, I just had my 5th TCH with one more to go May 4th. Herceptin weeks in between. Would someone please share a recipe with me to help my hair grow faster. Other than the initial diagnosis, losing my hair was devestating to me. I don't think I stopped crying for weeks.
Thank you
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roe - I don't know any tips to make hair grow back faster. I think eating well including lots of protein helped me during treatment, my oncology nutritionist suggested that I do that. she said I should eat about 0.56 grams per pound of weight per day - so for 150 woman that would be 84 grams of protein a day. I often ate more! Good luck. It will get better ((((hugs))))) And, big congratulations on being almost done!0
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Roe, load up on Biotin. It is good for hair and nails. I finished chemo last June and Herceptin three weeks ago. My hair is about 3.5 inches. I get it colored regularly and he is going to add highlights next time. He trimmed it once but it letting it grow some now.
I was wishing for curls and didn't think I was going to get any but now that it is longer, it is really wavy. I like it from my ears to the back of my head, although it won't do much of anything. I just scrunch and go. My issue now is that I just don't have enough bangs and I feel like one big ole fat face. And the bangs I do have shrink up due to the waviness. lol. I think people with really short hair that look cute are those with the pixie faces or smaller faces and I just don't have that!
I did finally give up the wig in the last week. Been going out in public and everything. Finally decided if it is going to be months before I am happy, at least I will be cooler.
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Fluff you don't have a fat face.
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Thanks Lago. I think I have a big face. I was just in line at panera behind a little older lady with permed tight curls, short hairstyle. I thought, omg, that is what I look like. Ill get my husband to take a pic tonight and post it
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fluff - We were traveling and I got to eat at panera - yummy chicken tortilla soup and fresh bread - delicious!0
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I don't know where else to post this so I thought I would try my Triple + Sisters first.
My diagnosis is in my siggy, I'm 36.
I had a colonoscopy a couple weeks ago and I had 26 biopsies taken - all benign, including one polyp. Is it typical to have colonoscopies every 5 years? The doctor told me to schedule one in 5 years. I thought it was 10 years? (No family history of colon cancer or anything)
Another question -
I have had PCOS for as long as I can remember. Irregular or completely absent cycles forever. Now, after TCH x 6 and being on Tamoxifen since September - I am regular. I was a week late this cycle, but certainly more regular that I have ever been. I'm not sure whether to be concerned about that or not. My onc says that since I'm tolerating the Tamoxifen well, there is no reason to be looking into ooph. The reproductive oncologist that I see says without BRCA testing, she cannot really sway me one way or another but she seems to really push for ooph. I'm just confused.
Can we talk about sex? I know so many women really suffer from negative sexual SE as a result of the drugs we take. But the opposite seems to be the case for me. My poor husband is TIRED. *blush* He has always had a lower sex drive than me, but I could seriously go twice a day now. While that is super fun, it does start some fights between my husband and me. He says he feels like he just cannot keep me satisfied. (Cannot believe that I'm even posting this...lol)
So the increased libido, the regular periods and all the talk about ooph has me questioning what to do. My onc seems solid that more invasive medical procedures are not necessary. But I wonder...
I don't really want an ooph. But I don't want mets either. For the first time in my adult life, I am HAPPY. We lost a daughter 9 years ago after a drowning accident and I never really recovered from that...until now. And I don't want to do anything to screw that up, you know?0 -
pejkug - Hi! I think with your age you could push for BRCA testing.0
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pejkug3 Well you're one horney gal.
I haven't felt like you feel since I was in my 20's. When I was in my 30's it was only once a day urge for me 
Seriously I think that might be a sex counselor type of thing. 2X a day is a lot for the average DH to keep up with unless he's a teenager. Not that there is anything wrong with you. It's just you two might need some help resolving some of the negative feelings. Have you considered getting a vibrator so he doesn't have to "perform" so often? I know I would have only consider an ooph if I was BRCA+, but I wasn't. I went into chemo-pause and I'm not coming back. That's why I'm on an AI. Can you get BRCA testing? I'm not so sure I would want an ooph at such a young age. There are issues with bones/heart too. I have no idea what "PCOS"is.
5 years is typical for someone who has a direct family history or if they find something. I had my 1st colonoscopy last year. Found nothing so I go ten years. My maternal grandmother did die of colon cancer but my mom (almost 75) and dad (80) are fine as well as my siblings.
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I could get the BRCA testing. I'm not real clear on whether insurance would cover it or not. My onc has stated that typically Triple +'s are not BRCA+ as well. He said that geneticists lump all BC into one category. Triple -'s have a higher incidence of BRCA+. In my heart, I don't believe that the BRCA test is positive. And I'm not settled on whether I want to open that can of worms or not since it effects more than just me. There is a history of BC in my family, but it is 3 generations separated from me. My mom is fine, her 4 sister are fine and her mother is fine. However, my mom is 52 and her oldest sister is 54...just the age when this diagnosis becomes more common.
The libido thing? Um, yeah...I went with girlfriends a few months back and picked up some toys at a sex shop. I still want my DH more though. Our marriage had been so strained for so many years, it is nice to just *breathe*. I just really LIKE him now. Not even just for sex. It was funny...he's having a vascectomy on Friday. And leaving to go out of town on Monday - his mother has stage IV lung cancer and lives 3 1/2 hours from us. He'll be seeing her. He said he thought it was odd that I was totally fine with him being gone for 5 days since he travels for business for 3 days this week. Then it occurred to him - he can't have sex! So I have no need for him to be home. *snicker* That's actually partially true!
My DH is 39 and he can keep up every other day. And I an generally respectful of that. But this increase in libido is concerning a bit from a cancer standpoint. It started right after I started Tamoxifen.0 -
pejkug
just wanted to share what my onc told me about an ooph. She said that unless my periods resumed i am considered in menopause. HOWEVER if my periods did come back they would first shut down my ovaries with lupron to see how its tolerated then consider an ooph. I would speak to them about the fact that you are having periods, this means you are producing estrogen - and we don't want that being ER positive. Your libido being high is part of this - thats why some women have increased libidos during pregnancy (i have to tell you my DH would be really jealous reading your post since it is the opposite in my house right now!)
as for the colonoscopy, every 10 years is standard unless you have a family history. I did read another members post awhile ago and she said that her onc told her there is a link btw BC and colon and therefore she should be screened every 5 -
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Pej,
My estrogen was off the charts right before my diagnosis. I was so frisky ALL THE TIME...I felt like a teenage boy...I couldn't get enough sex or think about anything else. Then my dx and over 95% ER.
Like you I never had regular periods...sometimes maybe only 2-3 a year. Tamoxifen is a WEAK estrogen and acts as a super estrogen on the uterus, which is why you are now regular. I was the exact same way...I knew to the DAY when my period was coming once I started on Tamox...and that was new ground for me.
We discussed this exact issue (with some links) yesterday, or the day before, so if you scroll back a couple pages you'll see the info. Studies show that women who get their periods back after chemo do better/survive longer with the ovaries shut down (Lupron) or an Ooph. I chose the Ooph, and I'm over 6 weeks out with no issues.
Here's what it all boiled down to for me. There is no reliable test to determine if Tamoxifen is working for you. None. So you're "hoping" it is....but with the ovaries shut down or gone, you don't have to worry about producing estrogen.
Perhaps you should ask for a hormonal panel. I imagine with the sex drive thing your estrogen is off the charts as well..and sister, that ain't good.
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TonLee -
I am concerned about the very thing you mentioned - with my libido being so high, perhaps my estrogen level is also high and that is what I'm trying to avoid by taking the Tamoxifen in the first place. I have some minor leg cramps, an occasional hot flash but none of the typical Tamoxifen SE. No vaginal dryness, increased libido...I actually feel really, really good.
Now, I have lost some weight (60+lbs) and I work out 5 days a week. In the past, those two things have contributed to an increased sense of wellbeing and extra confidence that make me want sex more and make my periods regular. But I still have a lot of weight to lose...
I see the onc in June. I plan to run all this by him AGAIN. We have discussed this in the past but maybe he would do Lupron on a trial basis. And if the Lupron brings on intense meno symptoms, I would do the ooph. Boy will my DH be upset if he has the vasectomy and then I end up doing the ooph after all.
I did see the discussion regarding all of this in the past few days. It's actually what got me thinking again. I don't want to spend my life trying to outrun cancer, but I do want to feel at peace that I have done everything I can to be an old, old woman.0 -
Oh, and about the hormone panel - I had something drawn for labs (I forget) that indicated that I was at least 10 years from menopause. I'm planning on changing my PCP and I will bring up the hormone panel to her then.
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I didn't know I had a hormone panel...when asked by people I always said I never had one...but I mentioned it last time I was in...as in "we gonna do one?"
That's when I found out about my estrogen being so high before MX....they did one then, and once since. I had no clue. Which also explains why my Onc was so disappointed when my periods came back...his religion really frowns on messing with the reproductive system...he was pretty anti-Ooph, sure they wouldn't come back....he really wouldn't have any part of me getting one, outside of writing a referral to the OB, and then I worked it out with her.
Since my heart was compromised by Herceptin, I never felt "back" to 100%, but I could tell when the estrogen started flowing again.....bloating (estrogen always bloated me, I dunno why) and my mind came back....now, post Ooph, I'm forgetting things again... BOO!
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TonLee have you tried Acetyl-L- Carnitine? It's actually a memory booster. I took it to prevent neuropathy during chemo but kept taking it because I swear it made my memory better… and I'm usually very skeptical of anything that claims to "boost memory."
I know I recommended it to another bc.org woman for neuropathy. I got an email from her a week later stating she thought it helped with her memory too.
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My onc told me from the beginning that I would probably get my periods back after chemo. 6-8 months after, he said. But I never stopped having periods in chemo. They were irregular and heavy. I think I had 2-3 while in chemo and rads.
My onc is anti-ooph. He just keeps telling me that I've done everything I should do to protect me from a recurrence. He said he doesn't "chase cancer" and he expects me to do well. But I sat in chemo/Herceptin with a 38 year old mom of 3 who died in February. And it breaks my heart to think of her kids and husband. I want to be sure I am comfortable with the choices I make to keep the BC away.0 -
Lago,
I took it all through chemo and I don't think it helped my memory then...lol...but you know what? Since I stopped the Hawthorne for my heart (didn't do squat) I think I'll pick some up again when I go to the store this week. Thanks for the reminder.
Pej,
I had all my resources ready when I went to see the Onc....the studies that show improved survival/recurrence with an Ooph or Lupron. But he didn't need to see them....it was a personal issue I think with him, so he sent me to an OB and the first thing she said was..."Wow. You were so highly ER positive. How would you feel about getting your ovaries removed?" lol
The surgery was fairly easy...though my belly button is still sore...I was in surgery by 7...home by 1. I was going to have a total hysterectomy but decided against it when I researched how removing the uterus compromises the structural integrity of the lower pelvic region...and can cause a whole host of new problems.
Though an Ooph has it's own issues, the lack of estrogen. Women who lose estrogen before 45 have a higher mortaility rate than women who lose it after 45. The causes are varied....not necessarily BC related. I've read so many journal articles about SE from lack of estrogen at the end, when I had to make the decision for the Ooph it felt like I was choosing a different way to die...lol.
Pay now. Or, pay later. Seems the only two options.
I don't usually procrastinate, but in this case I chose later.
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Ha! It's interesting that you mentioned the increased risk of mortality in women with ovaries removed before 45. One doctor suggested that I take the Tamox for 5 years and then remove ovaries for that very reason. Her comment was, "So you don't die of BC in your 50's but instead die of heart disease because the estrogen production by your ovaries was stopped so early. Do you win?"
Sometimes I think specialists get "tunnel vision". They only see their own field. They treat the disease specific to their field of expertise and neglect to consider what SE may manifest as a result. The doctor I quoted above is integrative and considers the whole picture better than other docs I have seen. She may become my new PCP if the insurance issues work out.
Thanks for all the input. You are a wealth of information. Lots of things to consider.0 -
I'm slowly climbing out of a mound of matzo crumbs. I plan to catch up on posts soon. Just one comment re: Estrogen. Mine was very high at diagnosis. I don't know what it was when I was younger but I always had very regular, short periods. Especially after my first baby at 25 I barely had periods. I would call my libido average over the years and after menopause it decreased considerably. Is there any medical evidence that high Estrogen receptors make for sexy gals?
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I'm continuing to follow the ooph discussions with interest. Pejkug 3: I sympathise with you over this one. I also note a few similarities. I always had a history of irregular, periods and at age 28 was told by one gyn that I had PCOS (poly cystic ovary syndrome). I had always had some fine facial hair and he took one look at me (and the results of an ultrasound and blood tests) and said: "You will find it virtually impossible to conceive naturally." Two years later my first child was born, followed by my 2nd 20 months later. So not sure what role Est has played with my Bc, but am sure its a factor.
Like you, Tam has regulated my periods somewhat (every 35 days ish) and my sex drive is good and no menopausal SE's. Like you, I worry about this but at the same time don't particularly want to change it.
On Lupron: even at 41, my onco raised the issue of having Lupron injections for a long period of time. Hence, I might not achieve natural menopause for years to come. I note that you are also very young.
Im due for Herceptin 17 on 20th April so will get blood check on my levels. I don't know what my Est was at dx or is now.
Tonlee: at what point in your tx did you have your ooph? My onco wont advise any further surgery until after Herceptin has finished.
Finally, Ive found a very small article in The Daily Mail about BC and a test they are developing in the US (it detects early reoccurance apparantley) Will post soon.
Liz
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As far as drive. I still have mine although not what it used to be when I was in my 20's. I was peri menopausal before chemo. Periods were shorter and lighter but on time. My esteroal levels were being checked after chemo to be sure I stayed in chemopause. (My levels were that of a prepubescent male). My point here is I don't think estrogen is the sole driver for drive for us women. I do feel ti helps with reaching climax. That is a bit more challenging now.
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I was thinking back to my last blood test (about 3 months ago) when my hormone levels were checked. I had asked for this because my periods had recently returned. My onco said I was peri menopausal. What does this mean and does it put me at less risk? Am I still likely to be peri men if I'm having periods?
My TCH was May-Aug 2011. Had no periods June-Oct 2011 and had zero sex drive and vaginal dryness. So when periods returned I was almost grateful. Will an ooph put me back to chemopause type symptoms like these or does it get better?
Liz
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Here is the article that I read yesterday:
Test 'is breast cancer lifesaver'
A blood test that gives an early warning of whether breast cancer has returned has been developed by scientists.
It catches the disease's reoccurence a year earlier than scans and so could be a lifesaver. Initial results show the test can give an early warning of half of breast cancer recurrences. It is hoped that refining the test will take the number up tp three quarters.
Women who have survived BC face a one in five chance that the disease will return within ten years. Research shows that early detection and treatment can save lives.
An American Chemical society conference heard that blood tests which can spot BC's return already exist but often do not detect it until the woman starts to suffer symptoms. The new test looks for chemicals called biomarkers that appear in the blood during the body's normal processes.
Scientists at Purdue University, Indiana, and chemical analysis company Matrix-Bio found that levels of some of these biomarkers differ between breast cancer patients whose cancer has returned and those who are still free of the disease.
Researcher Daniel Raftery said: "They accomplish this with blood samples, rather than biopsie, with less discomfort to patients." Professor Raftery hopes the test, which could cost as little as £125, will be on sale in the US. by the end of the year.
Source: Daily Mail 14th April 2012.
Liz
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Predict model seems to be based on a patient cohort which predates herceptin. Hence I can't see how the benefit of herceptin could have been included.
Any thoughts?
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Jackboo I was peri at age 43. It can take years to reach menopause once you are peri. Since I was 49 at chemo (finished 2 weeks before I turned 50) and my mom and sister started menopause at 51 my onc new I wasn't getting my periods back.
So even though you may be peri it could be another 10+ years till you actually complete menopause naturally. I do believe you could go through menopause type symptoms if you get an ooph. It may not be the same intensity of chemopause but I don't know if one can really predict.
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Just wanted to post to let you all know I had a bmx with immediate DIEP last Monday the 9th. After 16 rounds of chemo with herceptin (12 taxol +h and 4 FEC+ h) I had a complete pathological response and have been declared Ned,. My tumor was close to 4 cm if IDC and I am 35, so we feel very blessed. The chemo killed that muther! Now I'm recovering from this very difficult surgery with my new cancer free boobs!
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