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Old 01-23-2016, 01:12 AM   #1
VDC
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HRT and ER-, PR-, Her2+ BC

So, does anyone know what the current research says about HRT (Hormone replacement therapy) as it relates to ER-, PR- disease? I was dumbfounded when my oncologist didn't recommend I discontinue HRT with the diagnosis of DCIS. Anyone have any current research to support either discontinuing or continuing HRT? Seems from what I know that discontinuing HRT would be the first thing to do! But with ER- PR- disease I'm told HRT has no effect. I'm deeply questioning the wisdom of continuing. Anyone have any ideas?
Thanks
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Old 01-23-2016, 08:13 AM   #2
Becky
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Re: HRT and ER-, PR-, Her2+ BC

That's a tough question. Some research says that all bc starts with estrogen excitation. The cancer then can mutate to find a way to grow best such as her2 or some other receptor such as triple negative. Many of the studies come from studying BRCA1. Women with BRCA1 tend to almost exclusively get triple negative cancer but they know that excitation from estrogen plays a huge role. Hence the study that BRCA1+ women are recommended to remove their ovaries as it reduces their chance of bc by 65% . Of course many of these women also remove their breasts but some try to keep them, at least temporarily for awhile.

I would discuss this with your gynecologist and perhaps an endocrinologist and get other opinions on this touchy issue.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-23-2016, 12:41 PM   #3
thinkpositive
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Re: HRT and ER-, PR-, Her2+ BC

I was also told that if you are ER/PR negative that there is no need to stop HRT. In my case I had bilateral BC and one side was ER/PR negative and the other side was ER positive (DCIS). I thought that I would need to take tamoxifin but since I had a complete hysterectomy and bilateral mastectomy, my onc said that I didn't need to take tamoxifin.

I'm not sure how old you are but perhaps your onc considered the benefits of HRT vs. the risk and thought it best that you continue on HRT? It would certainly be something that I'd have further discussions with your onc about. You need to understand the reasoning for the decision and be comfortable with it.

Take Care,
Brenda
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8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 01-23-2016, 07:55 PM   #4
VDC
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Re: HRT and ER-, PR-, Her2+ BC

Thanks to both of you for your thoughtful responses. This is probably going to sound a little odd, but I NEVER trust anything I am told by any physician without looking for the research myself. So, regardless of what I may be told by my gyno. (who just retired and is out of practice now), my onc. (even if she is with the Mayo clinic) or any other physician,I have to look at the research myself. As a researcher myself I have to see the data and look at how the study was designed. It would be SO much easier if I could just trust what I'm told, but I just can't! sigh.

The brca link is interesting and I will look into it, although I don't personally carry the gene. I've been on HRT since my hysterectomy 7 years ago. I kept my ovaries but they shut down and my brain went into "fuzz mode." I teach college chemistry and biochem. and rather than the 1-2 errors a term, I was making 3-4 errors a DAY! When I asked my gynecologist to run tests to determine why I couldn't think, she said my "fuzz brain" was a classic symptom of estrogen deprivation. Thus the HRT which did wonders for my brain!

So, here I am 7 years later, with ER-,PR-, Her2 at 3+ DCIS. No one seems concerned about the HRT, but I am. But, I can't find any research indicating the effect of HRT on ER-, PR- BC or DCIS. From my perspective it seems prudent to eliminate the HRT. Why take any additional risk? ....or at least see how my brain does without the HRT?
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Old 01-24-2016, 07:19 AM   #5
jaykay
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Re: HRT and ER-, PR-, Her2+ BC

I was on HRT for 5 years prior to my first breast cancer diagnosis. I had to go off as soon as I received the pathology - worse part of the whole experience.

I had a good friend who is a world famous leukemia specialist and she is strongly against any replacement therapy because she sees estrogen/progesterone as growth factors regardless of ER/pr status.

That being said, you have a tougher decision because of your pathology. You are absolutely correct about doing your own research.

Best
Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 01-25-2016, 02:38 PM   #6
agness
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Re: HRT and ER-, PR-, Her2+ BC

I too have heard that we need to be careful about hormones, even if we are HR-. It might not be promotive directly of our cancer but it could torque our systems in ways we don't intend.

Most breast cancer patients have dysregulation of copper and zinc in their systems. I read recently that the analogues are like this copper=estrogen, zinc=progesterone. This makes sense as my copper was sky-high when I was diagnosed and my zinc was at the floor. I also was diagnosed with a luteal phase deficiency while dealing with infertility years so, with low progesterone (in a real test by a regular doc). I found an epidimiology report from the early 1980s that said that women who had infertility and a LP progesterone deficiency had a 500% increase in the risk of developing breast cancer. Hello to me then eh?

In case you are interested:

"A growing body of literature has documented a strong connection between a woman’s progesterone levels and her subsequent risk for breast cancer. A trial reported in the International Journal of Cancer in 2004 measured blood levels of progesterone in 5,963 premenopausal women. Incredibly, the analysis of the data revealed that those women with the highestblood levels of progesterone levels who had regular menses experienced an 88% decreased risk of breast cancer.51 These findings corroborate another study in which 1,083 women treated for infertility were followed for upwards of 33 years to determine their subsequent breast cancer risk. Compared to women with normal progesterone levels, those deficient in progesterone had a 540% increased risk of premenopausal breast cancer, and were 10 times as likely to die from any cancer."

http://m.lef.org/magazine/mag2009/oc...ormones_01.htm

Corpus luteum dysfunction and the epidemiology of breast cancer: A reconsideration
http://link.springer.com/article/10.1007%2FBF01806745


So anyway, when dealing with infertility and fibroids I spent a lot of time researching natural progesterone cream and I do think that it helped my body in that regard. Dr John Lee wrote a lot about it in What Your Doctor Won't Tell You About Premenopause. There was some controversy around it though, like were bio-identical hormones good or bad for us. And this isn't even getting into HRT. Chinese Medicine took a slightly different vantage as I tried that years ago, successfully, to deal with my fertility issues -- what you supplement will remove your body's own capabilities to adjust to what it needs to. Take extra progesterone and your body might just quit entirely.

Fast forward to me and chemo two years ago. My gyn said with BC she was taught no hormones, but then AF showed up the day after my first dose of chemo and I had bleeding/spotting/ BV for two months. The gyn said it was due to unopposed estrogen that was causing breakthrough bleeding. I was like f-this and so I did supplement with NPC (natural progesterone cream) during that time of breakthrough bleeding and chemo. It didn't hurt me at all and I had a PCR to boot.

This past year my cycle got weird and I tried NPC again and you know what happened to me both times (and this is using it not on my boobs, I was putting it on my forearms, belly, thighs as you are supposed to)? There was an area on my opposite breast, the one that didn't have BC and it caused mammary duct ectasia -- twice. My Chinese Medicine doc worked on it some and I did get it imaged just to be sure and it was benign but it took weeks to go away.

I took it to mean that it isn't being supportive now and my body is being very clear about that. It definitely was showing me that it is affecting things in my body, and in ways that weren't helpful at all to the cause.

So, anyway, since I experimented and my body slapped my hand I can at least share my hard won experience with you all. Hopefully this helps guide you in your decision-making.
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  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 01-25-2016, 04:22 PM   #7
VDC
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Re: HRT and ER-, PR-, Her2+ BC

Agness,
Interesting! I will have to look further into it. Thanks for the leads on where to look!

As an FYI since I had a partial hysterectomy and not complete I have taken an estrogen/progesterone combination rather that only estrogen.

Another interesting thing is that I had the hysterectomy because of a VERY large fibroid that had appeared in the span of one year! I literally had the uterus of a 20 week pregnant woman! So, there is definitely some hormonal things going on here!
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