Calling all triple negative breast cancer patients in the UK

Alicethecat

Hi Sylvia and friends

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

As TN is ER/PR negative, I thought this research might be of interest to you.

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.

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 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

• Image courtesy of Wikimedia Commons

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

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cp418 Joined: May 2006 Posts: 4,942

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Oct 31, 2012 09:32 PM cp418 wrote:

More research articles:

liulab.dfci.harvard.edu/public...

www.news-medical.net/news/2012...

www.ncbi.nlm.nih.gov/pubmed/21...

pharmastrategyblog.com/2012/02...

breast-cancer-research.com/con...

My chemo was the regime sometimes given to TNs (4 x FEC and 4 X Taxotere) so I do know what it's like to go through aggressive treament. Hugs to all of you!

Best wishes

Alice

sylviaexmouthuk

Hello Mumtobe

Thank you for your post. I was interested to know that you know another Canadian lady on another TN thread and that she had weekly doses of Taxol with no hair loss. I wonder how much weaker the dose is that it does not cause hair loss. Let us hope this happens for you.

I was glad to know that you had an ECG before surgery and then after chemotherapy and that all was normal. I think they would have said something if there had been anything abnormal.

I do hope everything will go well with your chemotherapy. If it is of any use, I was told to make sure that I had something to eat for breakfast before going for chemotherapy, and not to go on an empty stomach. I was told that a boiled egg and some toast would be good.

Wishing you well.

Sylvia xxxx

FernMF

Mumtobe - I had 4 treatments of taxotere, three weeks apart . . . I'm not sure how similar taxotere and taxol are - but I had "minimal" sickness . . . the first couple of days were a bit rough, but I think that was more due to the steroid dosages than the taxotere . . . It's 6 weeks since my last dose and my hair is now "visible" - although it is white and whispy - probably take a couple of months to come back in fully . . . GOOD LUCK TO YOU!!!! Wishing for you NO or LIMITED side effects!

sylviaexmouthuk

Hello to all regular posters.

I thought you would like to know that I had a PM from Dulcie. She is in hospital and I thought it would be nice if you posted words of support and comfort to her during this difficult time. I am sure we all miss her on the thread.

Thinking of you all.

Sylvia xxxx

InspiredbyDolce

Adagio:

I just read some posts regarding your consideration of chemo.  Especially, if your medical team is mentioning dose dense chemo, then they clearly see a reason for it, as dose dense is considered a breakthrough to traditional 3-week treatment.  I hope you do get the chemotherapy, and you can rebuild your body with healthy eating and exercise, during and after chemo.

With TNBC, studies show researchers/doctors that after 5 years without a recurrence, that risk of a recurrence is dramatically (out of all breast cancers) drops the largest amount down in recurrence risk.  So remember, that many TNBC Survivors will not have to face a recurrence.

While we should always know both sides of the equation, I think the focus should be more on pointing out the positives, rather than the negatives.  And with TNBC you can have an excellent prognosis.  Many doctors on the internet remind us TNBC Survivors all the time that the majority go on to enjoy a full normal life.

Take care and let us know your update!  

Have a great day,

InspiredbyDolce

Adagio:

Also, I recommend getting your Vitamin D levels checked.  Vitamin D deficiency has been linked to breast cancers and in particular to TNBC.  I had mine checked and got the results the very next day!  

sylviaexmouthuk

Hello Adagio

I hope you had a good holiday weekend and that you have come back ready to face whatever you have to face.

Because there have been quite a lot of posts since your pre-holiday weekend post, and my reply to it, I thought I would let you know once again that my reply is on page 81, November 9th.

I would also like to add my voice to InspiredbyDolce and to say that I agree with what she said. Focus on all the positive aspects of TNBC and ignore all negative comments. It is good to know that after five years survival we have the best survival rate of all. We have to help this with good nutrition and regular exercise.

I think you were supposed to be starting chemotherapy today. If you have, I hope all goes well.

Best wishes

Sylvia xxxx

sylviaexmouthuk

Hello InspiredbyDolce

Thank you for all your information and your encouragement to Adagio.

I hoope all is well with you.

Best wishes.

Sylvia xxxx

Mumtobe

InspiredbyDolce & Sylvia,

Thank you for those words of positivity & encouragement. I needed them this morning. Heading in for my 1st dose of Taxol this afternoon. Have such mixed emotions about it. In one sense I'm thinking that I feel safe in the nook of treatment and am glad I am still getting drugs into me but in another sense I'm thinking I have 12 weeks of this ahead of me, yikes, when will it end. As my wonderful husband says to me, take each week at a time, after today I only have 11 weeks left. Positive attitude and faith in wonderful, loving Jesus is key!!

sylviaexmouthuk

Hello Mumtobe

Thank you for your post. I hope all has gone well with your first Taxol treatment this afternoon.

Try to relax this evening and tell yourself that is one treatment behind you. Try to enjoy the rest of the days to your next treatment and get through by saying that each week there are six days when you do not have treatment. You will find that the weeks soon go by. Your husband is right and you have to take one week at a time.

If you do have any side effects, please post as I am sure we shall have tips to help you get by. We shall all be interested in how you get on, as you are the first person on the thread with whom we are going through the weekly chemotherapy treatment. The others that we have followed went through chemotherapy on a three-week cycle.

Hang in there. Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello everyone.

I have just been reading some of the latest information in the new format of the new magazine entitled What Doctors Don't Tell You that started in September this year. I read that first issue with great interest, somehow missed October and am now reading November's issue. If you are interested in having a look on line the link is:

 

http://www.wddty.com/

 

Best wishes.

Sylvia

Kymn

Good morning ladies, although not from the uk, a TNBC sister I am, I have been reading through your thread and find it most interesting and thought provoking. Lots of good information here. I am just over a year now with NED..yeah me. Hope you all dont mind if a canadian gal crashes your thread

Have a great day

Kymn

BernieEllen

Welcome Kymn

Kymn

Thanks Bernie, looks like we hang at all the cool threads dont we

linali

HI,

Welcome Kym .I personally have learnt so much on this thread and it's a place where it's ok to be me and have support and reassurance.

Dulcie. We will think of you in our meditation group and send you our healing light and love.

MumtoBe, great to have the first one over. Hope that you enjoy some time with your beautiful daughter.

BernieEllen, I am thinking of contacting the ombudsman Emily O Reilly about the whole invalidity issue. Apparently cancer is no longer classed as an illness that can be debilitating. We would all love to be fit again and capable of returning to our jobs but unfortunately some of us suffer long lasting affects of the treatment.

Just back from Galway and the launch of STSA. We got lost and missed the first bit but it was wonderful to sing with all the other survivors, including a beautiful little girl Grace. It featured on the nine o clock news. There was champagne after donated by a local business. There is a group of breast cancer support centres in the UK who are interested in joining us.

Our main performance is to be on 31ST March.

Very tired and sore but inspired and happy.

BernieEllen

Good morning, Linali.  good idea about the ombudsman.  Let me know what you are doing, maybe we could get together.

BernieEllen

John invited his mother over for dinner. During the course of the meal, his mother couldn't help but noticing how beautiful John's room-mate was. She had long been suspicious of a relationship between John and his room-mate, and this had only made her more curious.

Over the course of the evening, while watching the two interact, she started to wonder if there was more between John and his room-mate than met the eye. Reading his mom's thoughts, John volunteered, "I know what you must be thinking, but I assure you Julie and I are just room-mates."

About a week later, Julie came to John saying, "Ever since your mother came to dinner, I've been unable to find the silver gravy ladle. You don't suppose she took it, do you?"

John said, "Well, I doubt it, but I'll write her a letter just to be sure."

So he sat down and wrote: "Dear Mother, I'm not saying that you 'did' take the gravy ladle from my house, I'm not saying that you 'did not' take the gravy ladle but the fact remains that one has been missing ever since you were here for dinner."

Several days later, John received a letter from his mother which read:

"Dear Son, I'm not saying that you 'do' sleep with Julie, and I'm not saying that you 'do not' sleep with Julie. But the fact remains that if she was sleeping in her own bed, she would have found the gravy ladle by now. Love, Mom."

 

Mumtobe

Thanks Sylvia.

Well had my first treatment yesterday and don't feel like I had chemo at all. My only side effects are the blasted steroids. Couldn't sleep last night! Good news is that I don't have to take any steroids outside of day of treatment unlike the AC, it was the sensation from the steroids that really affected me. Will keep ye posted on the remaining treatments.

Carol x

InspiredbyDolce

Hi ladies:

Just stopping in for quick hello and to share this information with you:

You can track your food and exercise daily with: www.myfitnesspal.com

You can look up nutritional information with: http://nutritiondata.self.com

The nice thing about myfitnesspal.com is it will keep track of what you want it to, i.e.:  fat,protein,carb,sodium, etc.  You will have a drop down list to select items.  When you do something more complicated like a smoothie with 6 ingredients, it will save your items, so the next time, you just have to click it, instead of trying to build it like the first time.

For the nutritional site, it's also nice because it gives you info like inflammation factor and glycemic index factor with each food item.

But the fitness pal helps with keeping a running tab on what you consume during the day.  It is a little work the first week or so while you are first getting used to it and building up some specialty food items, but it has a very robust database.  Even includes name brand foods, food like Trader Joe's brand, and even has restaurant brands and their items in the database.  

Hope you all enjoy it and find this helpful.

Have a great day everyone - hugs to all my support Sisters out here!

sylviaexmouthuk

Hello Kymn

Thank you for your post.

You are very welcome to post here and I was glad to know that you have been reading the thread and that you have found it interesting and thought provoking. I am glad, as well, that you have found good information.

It is good to know that you are doing well after treatment and we all hope that continues.

I was interested to read your details and to know that you were grade 2, as most TNBCs are grade 3.

Looking at your details, am I right in assuming that you did not have surgery or radiotherapy? Does this mean that the chemotherapy took care of everything?

All Canadian gals are welcome here and I am sure you and they will make an excellent contribution. If there is anything in particular you would like to know, please do not hesitate to ask.

Wishing you all the very best.

Sylvia xxxx

sylviaexmouthuk

Hello linali

I have just read your latest post and wanted to say thank you for your kind words to Dulcie. She really needs our support right now.

I cannot believe that the bureaucrats are saying that cancer is no longer classed as an illness that can be classed as debilitating. Cancer must be one of the most debilitating illnesses that a person can have and I doubt that there are many patients who are the same as before treatment. I do hope you will fight to get your invalidity. Do everything possible in your power. I wonder whether the bureaucrats making these decisions have ever been through cancer themselves and if not perhaps they would like to experience a dose of chemotherapy or radiotherapy so that they have personal experience before making decisions that affect peoples whole life.

I was glad to know that you enjoyed your trip to Galway and the launch of STSA. It looks as though the whole thing may be taking off.

Thinking of you and wishing you well.

Sylvia xxxx

sylviaexmouthuk

Hello BernieEllen

Thank you for your posts.

I am sure that if you and linali get together over this invalidity issue, you will be a powerful force with which to reckon. Good luck.

I did like the joke and I know that for anyone having a bad day, your jokes must give them a moment of relief and laughter.

I was looking in the bookshop in Exeter yesterday and I always look at the section on breast cancer. There do not seem to be many new books coming out. The same books seem to be there each week. There are the books by Professor Jane Plant, which I found very interesting when first diagnosed, and the book we discussed sometime ago by David Servan-Schreiber, Anticancer, a new way of life. I found one that I had not read. It is entitled Thrive, The Bah! Guide to Wellness After cancer, by Stephanie Buckland and it is 2012. It is a follow up to her other book, Say Bah! To cancer. On the internet I saw that the woman who made the video recently specifically about TNBC now has a book out. It is entitled Surviving Triple Negative Breast cancer by Patricia Prijatel. It was published November 2012. I shall probably read these two books in the near future.

If you want a book to relax to, there is none better than From Ration Book to ebook, The Life and Times of the Post-War Baby Boomers, by Paul Feeney. It is a non-fiction book and traces the life and times of those born between 1946 and 1952.

I hope you have a good weekend.

Best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello Mumtobe (Carol)

Thank you for letting us know how you feel after your first treatment and it is good news to know that you do not feel as if you have had chemotherapy. Let us hope it stays like this. If weekly treatments are easier on the body, and easier for the patient to tolerate, that will take some of the fear and dread out of those having to go through it. It is also good news that you do not have to take any other medication as you do, for the first few days, when you have treatment every three weeks.

I do hope you have good sleep for the rest of the week. I did not experience this problem with steroids, so it is hard for me to understand. I have a cousin who is on them quite a lot for COPD and she tells me that it really energises her. I know also from FernMF that she had a bad time with steroids. The usual steroid here in the UK when going through chemotherapy seems to be dexamethasone and I know it affected FernMF and that she switched to prednisone and she was then fine.

I hope you have a good weekend and that you enjoy your time with your family and baby Emma.

Sending fond thoughts your way.

Sylvia xxxx

sylviaexmouthuk

Hello InspiredbyDolce (Debra)

Thank you for your post and for all the information. I am sure that everyone on the thread will find this information useful.

Do you use these sites to check your food intake and exercise on a daily basis?

Best wishes to you from all of us, wherever we are.

You seem to be doing well. Keep it up!

Sylvia xxxx

sylviaexmouthuk

Hello everyone

It has been a busy time on the thread with lots of useful information being posted.

Once again, it is Friday and I just want to wish all of you a relaxing weekend. If there is anything in particular that you want to discuss, you know you only have to say.

Thinking of you all.

Best wishes.

Sylvia

 

To Mumtobe. I was wondering whether you were offered Neulasta or Neupogen after your chemotherapy? I was never offered it, but many seem to have it, especially in the US. It is an injection after chemotherapy to avoid low blood counts.

 

To BuddhaWolf.  I hope all is well with you in London and that you are still finding time to view.

 

To sam52, Michael and Maria_Malta. Thinking of you and hoping all is well.

InspiredbyDolce

Hi Sylvia,

Yes, I just started with myfitnesspal.com this week!  It take a little bit of time at first, but you can save your 'meals' and then just click the box the next time.  It lets users add to the database, so you can share you information if you want.  For instance, every day I have this smoothie:  blueberry/kale/blackberry/banana/2 tbsp ground flax seed powder/splash of water/vitamin D3 drops .... if I wanted I could add it to the database and call it: Homemade Blueberry/Kale Smoothie

Sylvia, will you please tell us what supplements you are taking?

And is anyone out here taking any calcium/bone supplements?  I don't eat/drink dairy/milk (other than eggs) so was looking to see what people are doing for supplements.  

Have a great Friday everyone .... I hope everyone is feeling good today and getting a little bit of sunshine on their faces!

- smoothie recipe

BernieEllen

Have a good weekend everyone

BernieEllen

sylviaexmouthuk

Hello InspiredbyDolce

Thank you for your post. What you are doing on myfitnesspal.com sounds really fascinating. I do like the sound of your smoothie, as it has everything in it that I think we should all be taking for health reasons and hopefully as a breast cancer preventive.

I have a bowl of fresh fruit every morning that includes blueberries, blackberries, bananas, raspberries and black or red grapes. I try to buy organic if it is available. I tend to grind up my flaxseeds and have them with soy yoghurt, just natural. The brand name is Sojade and it is very creamy but made only from soy, with no sugar. I like the idea of giving your smoothie a name. You could end up with a best selling cookery book!

I tend to make very simple meals and use my imagination when making them.

I was most interested to know that you put vitamin D3 drops in your smoothie. I have not seen them here in the UK.

You asked about supplements. I take a calcium supplement that has everything in it for good absorption (calcium citrate, magnesium, vitamin K2, boron, zinc, manganese, copper and vitamin D), plus a magnesium supplement and one or two vitamin D3 supplements. I take these every day with a glass of fresh, unsweetened soy milk, enriched with calcium phosphate. I buy these. Our National Health Service can prescribe calcium supplements, but they are made from calcium carbonate and cannot be absorbed very well.

The reason I take these supplements is because, after finishing chemotherapy, radiotherapy and surgery, I discovered that I had lost some height. I had a DEXA scan to examine my bone density and was told that I had osteoporosis. This was probably due to my cancer treatment, as it seems quite common for cancer treatment to affect the bones in this way.

When I was first diagnosed in June 2005, I also discovered that I had hyperparathyroidism (an over active parathyroid gland). This can also cause osteoporosis, but I had not lost any height until after my cancer treatment. There is research to show a connection between breast cancer and hyperparathyroidism, but no certainty about which one comes first. My consultant and endocrinologist told me she thought my hyperparathyroidism preceded the breast cancer, as the adenoma on my parathyroid gland was quite large. I was cured on hyperparathyroidism when the adenoma was removed.

At the hospital I was told to take calcium supplements and they also wanted me to have bisphosphonates, which I refused to have.

The other supplements that I take are two vitamin B tablets and a multivitamin tablet, every other day. On the days when I do not take these I take an iron and vitamin C (combined) tablet. Every day I take two kelp tablets and I sprinkle kelp powder on my food.

The other two constants in my food regime are decaffeinated green tea and bitter apricot kernels.

I do not eat or drink any dairy products or buy any eggs. If I am out I may have an egg sandwich.

I think that all women newly diagnosed with breast cancer should have a DEXA scan before treatment to find out what state their bones are in and should have one after treatment to see if they have developed osteopenia or osteoporosis. Those viewing the thread kindly note that a DEXA scan is very low radiation and measures bone density, and is not to be confused with a bone nucleide scan that is high in radiation and is used to ascertain whether cancer has spread to the bones.

I hope, Debra, that you will continue to post and I am sure we shall all be interested in any more recipes you may have created.

You may be interested to know that hyperparathyroidism results in calcium being taken from the bones and let into the blood stream, so you end up with high calcium levels showing up in any blood test. If you want to get a diagnosis of hyperparathyroidism, high calcium level is not a sufficient symptom. You need to get your parathyroid hormone level (PTH) measured and if it is high you need to see an endocrinologist. Your calcium level can be normal or just above with hyperparathyroidism.

Kind thoughts from the UK.

Sylvia xxxx

sylviaexmouthuk

Hello BernieEllen

I am just popping in to say thank you for the beautiful photograph.

Kind thoughts.

Sylvia xxxx