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Topic: ER-/PR+ BC girls come here

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Jun 15, 2012 12:13PM

jenrio wrote:

You are like 1-5% of all BCs.   Most oncos see a few of you in their entire life practice.   Most phase 3 clinical trials get a few of you, not enough to make statistic significance.

So, you need to find each other and share with each other and look for some researchers/oncos who will focus on you and track you and figure out the best treatment for you.

Good luck! 

more details in my blog killerboob.blogspot.com
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Nov 1, 2012 07:21PM - edited Feb 28, 2013 10:14AM by Alicethecat

Hi everyone

Just came across this article. Cancer Research UK reported on a hypothesis in June 2011 that ER negative and PR positive breast cancer is affected by androgen receptors.

According to the report, it may be that it is similar to prostate cancer and could be treated with drugs that are already available for this type of cancer.

May I have the views of any scientists and interested parties on this website?

A tale of two hormone receptors – could prostate cancer therapy help breast cancer patients?

scienceblog.cancerresearchuk.o...

Posted on June 24, 2011 by Kat Arney Androgen receptor

Androgen receptors - more commonly associated with prostate cancer - could also play a role in some types of breast cancer.

Breast cancer survival is one of the big success stories of recent years. Thanks to improvements in screening and treatment more than 70 per cent of women now survive for more than ten years, compared to around 40 per cent back in the 1970s.

But while this is cause for celebration, the statistics hide the fact that most of this progress has been made in treating breast cancers driven by the female sex hormone oestrogen.

So-called oestrogen-receptor positive (ER-positive) breast cancer accounts for around two-thirds of cases, and can usually be treated with hormone therapies that block the production or action of oestrogen – notably drugs such as tamoxifen and aromatase inhibitors.

Unfortunately, these drugs don’t work in women whose breast cancers lack oestrogen receptors (ER-negative), so alternative chemotherapy options are used. These are often not as successful as hormone therapy, and new treatment approaches are urgently needed.

Now a paper from Cancer Research UK scientists, published in the EMBO Journal this week, shines the spotlight on a subset of these ER-negative breast cancers – known as molecular apocrine breast cancer -  showing that they may be fuelled by a molecule more commonly implicated in prostate cancer.

Not only do the results help to explain the puzzle underpinning the disease, but they bring hope for more effective treatments in the near future.

From oestrogen to androgen

Women’s bodies are awash with female hormones – namely oestrogen and progesterone – but they also produce a small amount of testosterone, more commonly thought of as a male hormone.

These hormones act by entering cells and attaching to receptors – the oestrogen, progesterone and androgen (testosterone) receptors, respectively – which then switch on specific genes causing the cell to do certain things (for example, grow and divide).

Scientists have known about the roles of the oestrogen and progesterone receptors in breast cancer for some time, showing that they are a key force in driving cancer cells to divide in response to hormones. But, curiously enough, most breast cancers also contain androgen receptors.

In oestrogen-positive breast cancer, androgen receptors have been found to counteract the effects of oestrogen, slowing down cancer growth.  This is borne out by research showing that women whose breast tumours carry both oestrogen and androgen receptors are likely to respond better to treatment and survive longer.

But nobody knew what androgen receptors were doing in breast cancers that didn’t have oestrogen receptors. So a team of researchers from our Cambridge Research Institute – led by Dr Jason Carroll and Dr Ian Mills – along with colleagues in Norway and Australia, set about finding out.

Studying the switches

Hormone receptors act as molecular ‘switches’, attaching to special regions of DNA and turning specific genes on.

To find out what the androgen receptor was up to, the researchers studied three different cell lines – human cancer cells grown in the lab. These were breast cancer cells lacking oestrogen receptors but containing androgen receptors (similar to molecular apocrine ER-negative breast cancer), breast cancer cells with both receptors (similar to ER-positive breast cancer), and prostate cancer cells (which only carry the androgen receptor).

Using various techniques, the scientists looked at the cells’ DNA to find out which genes the androgen and oestrogen receptors were attached to (and therefore switching on) in the different types of cells – and got a rather surprising result.

Rather than finding that the oestrogen and androgen receptors were turning on different genes, they noticed a significant overlap. Around half of the locations occupied by oestrogen receptors in the ER-positive breast cancer cells were hogged by androgen receptors in the ER-negative cells, presumably switching on the same genes that drive cancer growth.

This poses an interesting question. Oestrogen and androgen receptors each have unique shapes, which match different regions of DNA, like keys fitting into locks. In theory, the androgen receptors shouldn’t even be able to attach to the oestrogen receptor sites, let alone switch on genes.

So how were they managing it?

The missing link

The missing piece in the puzzle came in the form of a protein called FoxA1. Like the androgen and oestrogen receptors, FoxA1 sits on DNA and helps to switch genes on by ‘opening up’ the DNA so genes can be read.  It’s well-known to scientists, as it helps oestrogen receptors to turn on genes in breast cancer cells, but was only thought to be important in oestrogen-receptor positive tumours.

However, when the Cambridge team looked at the location of FoxA1 on DNA in the ER-negative breast cancer cells, they found an almost exact match with the androgen receptors – more than 98 per cent of the sites occupied by androgen receptors also attracted FoxA1.  In contrast, only half of the sites occupied by oestrogen receptors in AR+ ER+ cells were targets for FoxA1.

This told the researchers that FoxA1 must be acting as a ‘skeleton key’, allowing androgen receptors to hijack sites normally reserved for oestrogen receptors and switch on genes driving cancer growth.

What does this mean for treating breast cancer?

This is the first time that researchers have shown that androgen receptors play an important role in switching on ‘oestrogen responsive’ genes in breast cancer cells that don’t carry oestrogen receptors.

And unlike the situation in breast cancers with both types of receptor – where the androgen receptor acts as a ‘brake’ on cancer growth – it’s likely that androgen receptors are responsible for fuelling the growth of ER-negative cancer cells in molecular apocrine cancers.

This research opens up two avenues for exploration that could lead to new treatments for molecular apocrine ER-negative breast cancer. Firstly, it suggests that drugs targeting FoxA1 may be useful for treating the disease – an approach that is already being explored but is yet to bear fruit.

Perhaps more importantly, the findings also suggest that anti-androgen drugs could be useful for treating women with this particular type of breast cancer. These drugs are currently used to treat men with prostate cancer – a disease fuelled by testosterone acting on androgen receptors.

Given that anti-androgens such as bicalutamide are used to treat thousands of men safely every year, it should be relatively quick to test this idea in a clinical trial.

This work is still at an early stage, and it’s important not to extrapolate too far from cell lines growing in the lab to real women living with ER-negative breast cancer. But this discovery is a big step towards making a success story out of this type of breast cancer too.

Kat

Reference:

Robinson J et al (2011). Androgen receptor driven transcription in molecular apocrine breast cancer is mediated by FoxA1 EMBO Journal DOI:10.1038/emboj.2011.216

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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Apr 5, 2013 01:42PM - edited Apr 5, 2013 01:43PM by Alicethecat

Hello ladies

As Er-/PR+ and HER2+ is rare, I thought it might be helpful to give an update in case it's helpful to any other ladies with a  similar pathology. No mets, blood or lymph invasion at diagnosis.

In brief, I found chemo a little rough - got sepsis, blood clots and a reaction to Herceptin without Piriton in the drip beforehand - but I'm doing well. One year on I have the same stats now as when diagnosed in January 2012 - no mets etc.

I hope everyone is doing well too.

Best wishes

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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Apr 11, 2013 01:55AM Sandy65 wrote:

Alice,
Glad to hear you are doing okay. Thinking of you often. Take care my dear!

Courage is being scared to death, but saddling up anyway-John Wayne Dx 10/31/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER-/PR+, HER2- Surgery 11/30/2012 Lumpectomy: Right Chemotherapy 2/8/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/1/2013 Breast Hormonal Therapy 8/7/2013
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Apr 12, 2013 04:19PM carlads wrote:

Hi Ladies,

I think I might belong to this group..  I'm not Triple Negative and not ER- and PR+.  I'm ER+ and PR+ but low receptors..  I don't see alot of us out there or maybe they just don't post.  I am being treated as hormone receptor positive.

Anyone else out there with low receptors? 

Dx 11/7/2012, IDC, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 12/4/2012 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/11/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 12, 2013 04:58PM Sandy65 wrote:

Carlads,
I was said to be er-, PR+, her2-. I am barely PR+. I had what they said to be patchy positive on both er and PR stats. They gave me the positive and negative stats based on the oncotypedx test they ran and where I fell in their margins of positive and negative. So, I am not sure exactly where I fall but am thinking probably closer to tn. Although, my mo is still going to treat me with tamoxifen due to the patchy positive aspect. Hope you are doing okay.
Take care,
Sandy

Courage is being scared to death, but saddling up anyway-John Wayne Dx 10/31/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER-/PR+, HER2- Surgery 11/30/2012 Lumpectomy: Right Chemotherapy 2/8/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/1/2013 Breast Hormonal Therapy 8/7/2013
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Apr 12, 2013 05:03PM Alicethecat wrote:

Hi Sandy and welcome Carla

Interesting that you both have low receptors.

I'm only weakly PR+ too (3/8 receptors) and it looks as though my onc has treated me as if I am triple negative too (although I do get Herceptin because I am strongly HER2+).

The idea that the Androgen receptor is driving certain types of breast cancer seems to be gathering pace.

http://www.bbc.co.uk/news/health-22076692

Who knows? I couldn't tolerate Arimidex (works on the Androgen receptor) but others can.

Interesting.

Have a fab weekend.

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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Apr 12, 2013 05:10PM Sandy65 wrote:

Yes Alice, have read about those. Just wish they would be researching it faster. It sure takes a long time for results on new research. And probably different mo's ideas are concerns too. Take care!

Courage is being scared to death, but saddling up anyway-John Wayne Dx 10/31/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER-/PR+, HER2- Surgery 11/30/2012 Lumpectomy: Right Chemotherapy 2/8/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/1/2013 Breast Hormonal Therapy 8/7/2013
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Apr 15, 2013 12:35PM carlads wrote:

Good Morning Ladies,

Alice- thank you for sharing the link..  very interesting.

Sandy- Thank you I am doing better..  Our diagnosis sounds a lot alike, when I had my core needle biopsy they thought I was TN, then when the final path came back after surgery it showed ER+5 and PR+8.  That seemed to make my oncologist happy. I will be starting Tamoxifen after my Chemo..  Last treatment April 25th!! 

I'm so glad I found this thread.  I felt like I was in limbo, not TN but not strong receptors.

Hope you all have a good Monday!

Carla

Dx 11/7/2012, IDC, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 12/4/2012 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/11/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 15, 2013 12:50PM Sandy65 wrote:

Carlads,
Yes these low receptors tend to throw you for a loop and your not sure where you fit in. I have been struggling with this also. I don't think there are too many of us out there. Makes me wonder if it just catches us right before menopause or something. Dr. says I was still premenopausal but I think at 47, I should have been further along than that. I am sure I will be now though.
Take care,
Sandy

Courage is being scared to death, but saddling up anyway-John Wayne Dx 10/31/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER-/PR+, HER2- Surgery 11/30/2012 Lumpectomy: Right Chemotherapy 2/8/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/1/2013 Breast Hormonal Therapy 8/7/2013
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Apr 19, 2013 09:56AM Worrywart9390 wrote:

i was just diagnosed with er- pr+ (5%) and her2-  I havent met my oncologist yet, but my surgeon says they will probably put me on chemo and radiation and treat me agressively because i am stage one but grade 3 and there is no direct treatment for me because my er is - and my her2 is -.  It is very frightening to me.

HAVE ANY OF YOU HAD YOUR PATHOLOGY RETESTED????????  AND DID IT MAKE A DIFFERENCE??

I am seriously thinking of having my pathology retested as some suggest because apparently there are enough mistakes made that may warrant this.

Dx 2/28/2013, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR+, HER2- Surgery 4/8/2013 Lumpectomy: Right Chemotherapy 5/6/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/11/2013 Breast
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Apr 19, 2013 12:25PM Alicethecat wrote:

Hello Worrywarts

I'm sorry you've had to join us here but welcome!

Did not have my receptors retested but I have read that results can vary occasionally according to which laboratory was doing the test. So sorry, your decision on this one!

But as someone who had very aggresive chemotherapy - 4 x FEC and 4 x Taxotere - I can tell you that it is doable and in my humble opinion - worth it - particularly as like you I had a grade 3 tumour.

I would do it again if I had to - along with the mastectomy and 12 rounds of rads - as well as the Herceptin.

A year down the line I'm still doing well - no lymph node invasion, no blood invasion, no mets - and hope for the same for you in a year's time.

Best wishes

Alice



Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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Apr 19, 2013 04:44PM Sandy65 wrote:

Worrywart9390,
I have similar stats as you. I thought about getting retested but after talking with my MO she said she would be treating me the same either way with chemo and rads and tamoxifen. So I just will never know for sure if I am one of the rare types er-,PR+, her - or if I am actually closer to triple neg. For me the treatment will be the same either way. I was barely PR+. It is a personal choice on being retested. I guess I have just come to terms with being an unknown for sure and do the treatments as needed. Hope this helps. Wishing for the best for you.
Take care,
Sandy

Courage is being scared to death, but saddling up anyway-John Wayne Dx 10/31/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER-/PR+, HER2- Surgery 11/30/2012 Lumpectomy: Right Chemotherapy 2/8/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/1/2013 Breast Hormonal Therapy 8/7/2013
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May 11, 2013 05:43PM Worrywart9390 wrote:

Alice and Sandy, thank you so much.  My oncologist pretty much told me she would treat me the same if I were triple negative as well.  She also told me because I had the 5% pr she would put me on some hormone pill and that pill would help to prevent me from getting estrogen receptive positive breast cancer as well.  So I think I am more comfortable now that I've started treatment and praying for the best.  Thank you.

Happy Mothers Day.

Dx 2/28/2013, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR+, HER2- Surgery 4/8/2013 Lumpectomy: Right Chemotherapy 5/6/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/11/2013 Breast
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May 11, 2013 09:40PM Sandy65 wrote:

Worrywart,
Glad to hear you are feeling better about your treatment schedule. Wishing the best for you. Happy Mother's Day to you also.

Alice,
Hope you are doing well. Happy Mother's Day.

Courage is being scared to death, but saddling up anyway-John Wayne Dx 10/31/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER-/PR+, HER2- Surgery 11/30/2012 Lumpectomy: Right Chemotherapy 2/8/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/1/2013 Breast Hormonal Therapy 8/7/2013
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May 15, 2013 08:34AM Alicethecat wrote:

Hello Sandy and Worrywart

I'm a Happy Non-Mother but thank you anyway, Sandy!

Will find out soon if a knee lump taken out last week is benign and have an appointment for a consultation re an eye cyst next week. Both probably benign but I feel more comfortable getting them checked out early.

Someone I know got diagnosed with Stage IV cancer of the oesophogus ten years ago and gets anything out of the ordinary checked out and cut out - usually melanoma - and is alive and kicking.

I know it is a different cancer but I'm following his philosophy - if in doubt, get  checked out and take action. Well done Angelina Jolina on getting tested and taking action I say!

How are you getting on with your chemo Sandy?

Worrywart, I am so pleased you are feeling more comfortable now that you have a treatment plan in place. My oncologist speaks very highly of Taxotere as well as the hormone pill, Tamoxifen, which works on both ER+ and PR+ breast cancer. Is that the hormone pill you are going on?

I couldn't take it because I developed blood clots on the hemo and tried Arimidex instead (for post-menopausal women, also works on both ER+ and PR+) and couldn't tolerate that so...I am putting my faith in hoping that the chemo worked and the Herceptin is continuing to work!

How are you getting on re the chemo?

Best wishes

Alice





Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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May 15, 2013 09:59AM Sandy65 wrote:

Alice,
Glad to hear you are managing. I am having some issues with chemo. Had to skip last week due to neuropathy. On way to get next dose this morning. Having a lot of leg pain and swollen feet and ankles. Not sure how long I will keep working with the legs. It hurts a lot. Thank goodness for vicodin. Don't think I could do it without that. I will be on tamoxifen when done with other tx's. Hope your testing comes back good. It was good to hear from you.
Take care,
Sandy

Courage is being scared to death, but saddling up anyway-John Wayne Dx 10/31/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER-/PR+, HER2- Surgery 11/30/2012 Lumpectomy: Right Chemotherapy 2/8/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/1/2013 Breast Hormonal Therapy 8/7/2013
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May 16, 2013 03:58PM Alicethecat wrote:

Hi Sandy

Sorry to hear about the neuropathy. What a pain - if you'll excuse the pun - could you phone  your oncologist and ask if it would be possible to reduce your dose?

Really hoping you can get this sorted out soon. Having trouble with walking is no fun at all.

I had a bit of neuropathy on the Taxoere and other side-effects and had my dose reduced to 80% of the suggested dose. Bingo! Much, much better!

Test results showed a lipoma - fatty tissue - but there was some infection in it so the hospital is going to do some more tests on it.

Best wishes

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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May 16, 2013 09:49PM Sandy65 wrote:

Alice,
Hope they can get your knee fixed up soon. I did my last dose #6 of taxol yesterday. Next week she is switching me to taxotere due to the swollen ankles and calves and the leg pain. Had a dopler on legs yesterday and that was good. Also she is nervous about the neuropathy. She said my choice to continue with taxol or go to taxotere. I told her i would do what she thought was best so next week taxotere. Hope the se's are less. Been reading where taxofere is better for low hormone receptor and tn's so guess it may help me more than taxol. At least I can be hopeful. Good to hear from you. Keep me posted on your knee.
Take care,
Sandy

Courage is being scared to death, but saddling up anyway-John Wayne Dx 10/31/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER-/PR+, HER2- Surgery 11/30/2012 Lumpectomy: Right Chemotherapy 2/8/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/1/2013 Breast Hormonal Therapy 8/7/2013
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May 17, 2013 02:16PM Alicethecat wrote:

Hi Sandy

Did you see the article that CP has posted in the Clinical Trials section?

Talks about neuropathy, reducing dose and other issues!

www.curetoday.com/index.cfm/fu...

Nurse in chemo lounge read some of my knee lump report to me and it says that is is non-necrotising, which is a very good sign. Was terrified it was necrotising fascitis but looks unlikely!

Another nurse told me that benign lipomas often have a bit of inflammation when they are taken out so not uncommon.

Hope you have a great weekend. My friends and I can't wait for Eurovision - Europe's time to be a bit silly and have a bit of fun!

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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May 17, 2013 05:02PM Sandy65 wrote:

Alice,
Glad you are getting good results on your knee. I didn't see the article and appreciate you posting it for me to look at. Hope you have a great time with Eurovision. Hope your weekend goes well too. I will look at the article. Thanks again.
Take care,
Sandy

Courage is being scared to death, but saddling up anyway-John Wayne Dx 10/31/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER-/PR+, HER2- Surgery 11/30/2012 Lumpectomy: Right Chemotherapy 2/8/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/1/2013 Breast Hormonal Therapy 8/7/2013
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May 18, 2013 11:29AM stride wrote:

It is interesting this forum was started by a woman who was ER +. Okay, so my cancer started PR+ and finished triple neg after neoadjuvant chemo. I am having a hard time talking myself into Tamoxifen. Would love to hear if anyone has seen good research on the benefits of Tamoxifen for ER- cancer. My onc just tells me to take it, but she does not explain why. Has anybody seen any good studies, or get an explanation of from their onc on how it works for ER- cancer cells?

2012: Stage II IDC ER-/PR+ Her2- became triple negative with areas of carcinosarcoma during neoadjuvant TAC. 12/2012: clean PET/CT. 8/2013: Mets to lungs, liver, brain, bones, muscles, kidney, thyroid, adrenal gland, etc. Surgery 11/6/2012 Mastectomy: Left Radiation Therapy 1/15/2013 Radiation Therapy 8/21/2013 Brain
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May 18, 2013 01:26PM Alicethecat wrote:

Hello Stride

Jenrio is, I believe, a scientific researcher, so I think it is very public-spirited of her to start this thread. Who knows, maybe the experiences of our group will help the researchers of today - and tomorrow?

Being in the rare ER-/PR+ group I am always interested in reading anything about this subject area. But I am not a medical professional of any kind - so PLEASE DISCUSS ANY OPTIONS WITH YOUR ONCOLOGIST FIRST!!!

In brief, a young oncologist said to me that just because there weren't any ER responsive cells in the breast tissue the pathology department tested doesn't mean that they weren't present in the rest of the mastectomy tissue.

Apparently, which I didn't realise, the scientists don't test all of the tissue - just segments.

My older, incredibly experienced oncologist said to me that Tamoxifen has been used in treating breast cancer for 40 years and is incredibly effective and does work on the progesterone receptor as well.

The link below, which I found online, discusses alternative splicing and the progesterone receptor.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2481493/

My guess is that your oncologist is surmising that you may still have some ER and PR receptors in your body somewhere - but that's a discussion for you/the oncologist!

In my own particular case, I have decided not to take Tamoxifen as I am HER2+ and am relying on Herceptin!

Best wishes

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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Sep 18, 2013 07:36PM stride wrote:

Alice, belated thanks for your post. I did end up with mixed metastatic tumors: some ER-/PR+ and some triple negative. I delayed taking the Tamoxifen. When I did start I was probably already metastatic, but I will never know. 

2012: Stage II IDC ER-/PR+ Her2- became triple negative with areas of carcinosarcoma during neoadjuvant TAC. 12/2012: clean PET/CT. 8/2013: Mets to lungs, liver, brain, bones, muscles, kidney, thyroid, adrenal gland, etc. Surgery 11/6/2012 Mastectomy: Left Radiation Therapy 1/15/2013 Radiation Therapy 8/21/2013 Brain
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Sep 20, 2013 01:07PM Alicethecat wrote:

Stride

So, so sorry to read about this.

Just a thought - and it is a long shot - but is there any chance that you could have sarcoidosis rather than mets?

The reason I ask is because sarcoidosis can form granulous lumps anywhere in the body - and you do seem to have a lot of sites.

http://www.nhs.uk/conditions/sarcoidosis/Pages/Introduction.aspx

I'm being tested for this at the moment. Had an xray and blood test yesterday after the Ophthalmology team found an inflammed tear gland.

Sarcoidosis often shows up in the lungs first and a blood test will reveal a higher level of angiotensin converting enzyme so I am told.

Hoping

Alice



Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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Nov 11, 2013 04:55PM Kruise wrote:

Hi everyone - I have just been reading over this thread and am in a similar position in that I have been told I have a low percentage PR+ receptor also but negative for ER and HEP. I had been having treatment as TN. Now my MO wants to start me on tamoxifen next week but I am interested to know whether the side effects would outweigh the benefits.

How are you ladies finding it now that you are on it now?

Age at dx 44yrs. Had Annual mammograms past 9 yrs as Mum dx 45yrs but felt lump myself. Micromets 2mm in the two sentinel nodes. Treated as TNBC but weakly PR+. Medullary type. BRCA1 & 2 negative. Dx 1/7/2013, IDC, Left, 1cm, Stage IIA, Grade 3, 2/8 nodes, ER-/PR+, HER2- Surgery 2/4/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 2/20/2013 Lymph node removal: Left, Underarm/Axillary Chemotherapy 3/27/2013 AC + T (Taxol) Radiation Therapy 9/30/2013 Breast Hormonal Therapy 12/30/2013
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Nov 19, 2013 03:36PM Alicethecat wrote:

Hello Kruise

Welcome!

My oncologist told me that Tamoxifen does work on the progesterone receptor too.

The link below, which I found online, discusses alternative splicing and the progesterone receptor.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2481493/

The reason I didn't take Tamoxifen was because I developed blood clots on chemo and because I knew I had Herceptin for the HER2+ element of my tumour.

Like you, I had a mixed tumour, In my case, I had micropapillary (aggressive cells) as well as HER2+.

If I hadn't developed blood clots - pulmonary emboli - I would have given Tamoxifen a go. The onc said the chance of developing clots and cancer of the uterus was less than 1% and even if that risk doubled, it was still tiny.

However, as I am post-menopausal I was able to take Arimidex. Took it for one month and had an adverse reaction (low blood press, jaundice) and the onc took me off it immediately.

Your decision is only one you can make with your oncologist.

Best of luck!

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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Nov 19, 2013 11:25PM monkeymom wrote:

Hi Kruise,

I've been on Tamoxifen for a few months now (premenopausal, age 36) and I don't really have problems with it. I have hot flashes at night mainly and no other noticeable symptoms. My onc said to try it and if too many side effects, he would take me off of it. So far so good. I'm only 5% PR+.

Dx 2/22/2013, IDC, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR+, HER2+
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Nov 21, 2013 04:32AM Kruise wrote:

Thanks Alicethecat and Monkeymom. I still haven't started the tamoxifen yet. I have been talking to the oncology nurses also about it. I am just trying to get my body 'detoxed' at the moment. I feel so yuk after finishing treatment that adding another drug in there would probably give me side effects moreso - so I'm thinking of waiting a bit longer before starting it. I know they want you to start straightaway but I feel like this is the right thing.

Age at dx 44yrs. Had Annual mammograms past 9 yrs as Mum dx 45yrs but felt lump myself. Micromets 2mm in the two sentinel nodes. Treated as TNBC but weakly PR+. Medullary type. BRCA1 & 2 negative. Dx 1/7/2013, IDC, Left, 1cm, Stage IIA, Grade 3, 2/8 nodes, ER-/PR+, HER2- Surgery 2/4/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 2/20/2013 Lymph node removal: Left, Underarm/Axillary Chemotherapy 3/27/2013 AC + T (Taxol) Radiation Therapy 9/30/2013 Breast Hormonal Therapy 12/30/2013
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Nov 21, 2013 12:20PM Alicethecat wrote:

Hello Kruise

Sorry to hear you're feeling a bit yucky.

Seems like we are on a similar schedule and treatment plan except I am a year ahead of you - started chemotherapy in March 2012, had radiation in Cctober 2012 - as well as 18 rounds of Hercepin, which finished in July 2013.

It is a tough schedule but I am so glad I did it and sleep easily in my bed most nights and hopefully so will you!

The yuckiness and fatigue eventually do go...

Best of luck

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes
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Mar 20, 2014 03:19PM Alicethecat wrote:

Hello ladies

In case this is of help to anyone with this rare hormone combination, I'm checking in to say I'm fine two years after diagnosis. No cancer.

You'll see from my stats that I had a grade 3 tumour, ER-/PR+ and also HER2+

Good luck to us all.

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/7/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/3/2012 Breast, Lymph nodes

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