Calling all triple negative breast cancer patients in the UK

With so many forums and threads on this site to go through for information, I thought it would be a good idea for all of us in the UK to form a forum specifically for us, and to give our details and experiences in a compact manner. Anyone else in the world is welcome to join in.

I was diagnosed with a very large tumour, triple negative, in 2005. I had pre-adjuvant chemotherapy, epirubicin, cyclophosphamide, and then docetaxel, followed by right breast mastectomy with removal of seven lymph nodes, only one affected, the sentinel node. I had three weeks of radiotherapy plus boosters. I had very few side effects from all of this treatment, except fatigue. I am still in the clear after 19 years. I still live with fear of recurrence or spread, but I live a normal active life. If I can do it, so can you!

I would love to hear from anyone in the UK or anywhere else in the world. It would be useful to find out how many of us are affected with triple negatives and to share information, comfort and support.

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Triple-Negative Breast Cancer

Comments

maryna8

Hi, all

I linked to this article since it does especially mention TNBC.

https://www.cancerdefeated.com/worlds-favorite-flower-is-a-deadly-killer-against-cancer/6759/

Later, Mary

sylviaexmouthuk

Hello Mary,

Thank you for your latest post. With reference to beta blockers neither Raymond nor I have great confidence in them. They have so many side effects. He may decide to come off them. The one that he as been given is bisoprolol. Orthodox medicine seems to be pushing these on patients in much the same way as they are pushing statins and hypertensive drugs. This bisoprolol is used for lowering blood pressure. Raymond has the blood pressure of a much younger man and these pills have sometimes sent it too low. I think there is too much of the one size fits all in orthodox medicine.

I do hope we can get back to a group of regular posters as we used to have as I do not think it right in some way that people take but do not give.

I do agree with what Simone de Beauvoir said about losing confidence in one's body is to lose confidence in one's self. I often wonder how much damage has been done to my body through the breast cancer treatment, especially when I read about irreversible damage to the heart that can be caused by doxorubicin and therefore, probably, epirubicin. It would be interesting to have a complete check up, but any bad news would just cause anxiety.

I think we all feel rather fragile after cancer treatment.

I think it is a good idea that you have to show the MRI disc to another surgeon.

Thank you for the link. I am not sure what to think. I did read all about the rose and rose hips. I thought the book sounded interesting to buy but clicked on the free offer part and got nowhere. It said there was a technical problem. When looking through about the rose I was not happy to see the special emphasis on how aggressive TNBC is and that chemotherapy does not work well! It is the exact opposite of what I have read in the past. All this conflicting information is very confusing.

I then clicked on the book pictured there asking whether you have cancer personality. I saw the first question and decided this was not for me and I wondered where it was all going to take me, so I switched off.

It was good to see Jags56 posting. I do like the idea of a celebration about the bond between brothers and sisters. My brothers and I are not as close as we were as children.

I do wonder what has happened to Marias and especially to Hanieh.

That is all for now. Have a good week, Mary.

Love.

Sylvia xxxx

sylviaexmouthuk

Hello Jags,

It was nice to hear from you. I do hope you will gradually gain more confidence and that the breast cancer will go away into a dark corner. You are still essentially the same person that you were before. We cannot let cancer define us.

Thank you for your kind words.

I do hope you have a lovely day celebrating Rakhi and it is a good idea. It is also very important for you to celebrate Independence Day.

Take care.

Love.

Sylvia xxxx

maryna8

Hi, Sylvia

In reference to the article I linked to; Probably the drugs the authors are saying TNBC doesn't respond to are the estrogen-blockers. That is the only "silver bullet" that exists for the hormone-receptor positive form of BC. TNBC is a more aggressive form of BC, I thought.

I will probably try rose-hip tea since I have been trying to find teas I like the taste of, green tea is not my favorite thing. Even though I know green tea is an excellent tool in the BC prevention kit, I have not been able to get into the habit of drinking it regularly. I do have a lemon-echinacea and a ginger tea that I like better.

I will have to close for now, and will talk more later. Hope you are having a great day!

Love, Mary

helenlouise

Hi all,

I keep up with several threads but don’t post often. I appreciate the information and support provided, especially on this thread. So I suppose I am a bit of a lurker. I would like to be able to reply with emojis, so I could quickly indicate I have read and my thoughts without making a post. I am aware that many don’t want this space to become like Facebook or Instagram.

What’s news from me? Both my husband and I have had the flu which has been really bad in Australia this year with over 200 dead. I don’t remember ever having the flu before but as I did get ill enough to see my GP she ordered a nasal swab and it was confirmed. Must say I thought I just had a bad cold until the coughing and sneezing caused muscle spasms in my back. It was very painful and still is at times. I was quite alarmed thinking I may have fractured something but X-ray shows no damage.

My chest wound is still not healed, so the vacuum dressing has been ongoing. Community nursing wants to stop using the particular dressing so it will be interesting to see what the surgeon and her nurse suggest this week.

We got away to Melbourne on the weekend and had a nice time in the city. We went to the markets, down by the bay, visited my family home in the suburbs and ate at some lovely restaurants.

The garden pictures that have been shared are great. Such beautiful flowers. The days here are gradually getting longer, soon it will be spring and I look forward to spending more time in our fledgling garden. Today I bought some white magnolias to plant between some screening we have put up. It’s time to freshen up the veggie garden and get it ready for new crops.

Wishing everyone well.

Kindest regards - Helen xx

SusieW5

Hi Helen Louise,

The information that Australia is having a bad flu season is interesting as it means they'll be preparing for a bad one here too.

Hope you're recovering!

Susie x

kathseward

hi Guys

The flu has been really bad here much earlier than usual which is a worry. Hope it has peaked now but we will see. Measles has also been keeping us really busy and the contact tracing is a nightmare particularly on plane flights. Very busy with my next pharmacology and clinical governance units for uni.Hope u are all well and I'm just posting a pic of a bush sunset

Love

Kath

kathseward

sylviaexmouthuk

Hello Mary,

I think all cancers are aggressive and that we do not know where they are going inside our body. Taking anti-hormonal medication whether it is tamoxifen or aromatase inhibitors is no guarantee there will not be spread and they have terrible side effects. One of my friends here died of hormonal metastatic breast cancer and the other one, again with hormonal, has been living with metastatic breast cancer for about four years after being in the clear for seventeen. She has it in the bone which I think is probably better than having it in the lungs, liver or brain. My other friend died of metastatic melanoma skin cancer with spread to the liver. She had a very unpleasant time before she died.

As for teas, we have to go with what we feel we can drink. I do love green tea and have two mugs of Clipper's green leaf tea every morning, and during the day I also have Clipper's pure green tea bags, sometimes decaffeinated and I also drink green tea chai which is very soothing on the throat. I like Pukka three ginger tea as well and Rooibos tea with vanilla.

I have just received another email from Chris Woollams. I shall probably not be able to read it until the weekend.

Love.

Sylvia xxxx

sylviaexmouthuk

Hello Helen,

It was nice to hear from you. I was sorry to read that you and your husband have had the flu. I do hope you are feeling much better now.

Your bad flu outbreak will probably be heading this way. It was very bad here last year.

I was also sorry to read that your chest wound has still not healed, so that you are still having to put up with the vacuum dressing. I do not know much about this but I do know that iodine patches are a wonderful healer.

It must have been wonderful to get away for a weekend.

Are you still going to Japan?

I think it is very therapeutic to post photographs of flowers etc. If you have any, please post.

We do have to try to keep posting because without posts there will be no threads.

I wonder who thought up the word 'lurker' to describe people on the internet who read but do not send anything? I think we should have a nicer word, because in English in the general language the word to lurk is not very nice, as it means to lie in wait, to skulk, to linger around furtively. I am wondering what other word we could use. How about 'eager reader!'?

Love.

Sylvia xxxx

sylviaexmouthuk

Hello Kath,

Thank you for that lovely photograph and for popping in to see us.

I do hope this nasty flu is not coming our way, because I shall not be having any injections.

Why are there so many cases of measles? I think there are so many cases of measles because of the global village we now live in. It concerns me that nasty diseases such as Ebola and Dengue fever will end up here because of so much air travel. It is not very environmentally friendly either to travel like this.

I do hope all will go well with your next pharmacology and clinical governance units for university.

Thinking of you.

Love.

Sylvia xxxx

helenlouise

I like and much prefer ‘eager reader’ 😊.

Loved your pic of sunset Kath. The bush is an amazing place with a very different kind of beauty. Thanks for sharing.

Japan is on hold for now and that is ok.

Will post pics of garden when I have some pretty ones to share,

Will be interesting to hear surgeons opinion of wound and forward plan tomorrow.

Best wishes to all. Xx

ucfknights

i am getting very scared and anxious. I keep thinking the worse . Any positives to send out about this horrible tn disease. Any good stats and chemo effectiveness of tn

maryna8

Hi, ufcknights

Your mom is getting (or is finished with) the same chemo that I had, and that almost everybody here had; some probably had the dose tweaked or had another drug added perhaps. TNBC is actually said to respond better to chemo than the Hormonal receptor + type (ER+). I can't give you numbers or percentages because I choose not to dwell on that too much, knowing a number doesn't really do much good after you have done everything you know to do.

How is your mom doing now, has she finished her chemo? I see she is going to have a prophylactic mastectomy, can you tell us why she has decided to do that? Is it correct that she has a TNBC diagnosis on the first tumor listed (DCIS), and a ER+PR-HER2- on the second tumor found? I apologize if this info was previously listed, I just read it.

Also, I have a friend who had the ER+PR-HER2- tumor, and she had the same chemo combination as I did and as your mother did. AC+T. Apparently it is the usual mix for different types of BC. The difference is that the HER2+ type gets a targeted chemo on top of the AC+T. And the ER+ type has a pill to take after the chemo and that pill will block estrogen. Now some people have different drugs added to the regimen, there are new drugs out since I went through chemo.

You are being a very good daughter, try not to stress yourself too much; I'm sure you are doing a good job and your mom appreciates it.

Talk to you later, love

Mary

ucfknights

yes that’s correct. First tumor 2.6cm and dcis is TN (stage 2) and had lumpectomy then mri and found another primary tumor er+ (Stage 1). Started chemo and doc said mastectomy because there would be little tissue left. My mom is big chested and does not want reconstruction so BMX so assymetrica

53nancy

Hello, everyone. Just stopping in for a minute. The summer has been busy with lots of company and we are so far behind on yard work, etc., that it feels like we will never catch up. At the same time, it feels so good to be ABLE to do it. I have even done some canning, and planning on making rhubarb jam next. I hope you all are enjoying your summer and just want to wush you the best

sylviaexmouthuk

Hello 53nancy,

It was nice to hear from you and thank you for popping in.

I was glad to read that you have had lots of company and I am sure you will catch up with the work.

It is very good news that you feel able to do it. Keep up the good work and pop in when you can. It is so interesting to keep our connections with different parts of the world. We did hear from adagio, also from Canada, and Helen and Kath, both from Australia, have also popped in.

sending you love and best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello everyone,

I am just popping in to say that I am doing my usual review and round-up of the week.

Looking back to last Sunday, I can see that the thread has been very quiet so I suppose it is holiday time and everyone is busy. You are right to make the most of summer as it will disappear very quickly.

Thank you to Mary, Susie, Jags and ucfknights for your contribution these past few days. I have already mentioned Helen, Kath and 53nancy.

I have just received my latest copy of the free magazine VITA from Breast Cancer Care, but I have not had time to read it. I have also had a new newsletter from Chris Woollams of Cancer Active and have had just a quick look at it.

Item 1, Hyper-aromatisation – what is it? How to reduce it.

Item 2, Polyphenols, breast cancer, skin cancer, prostate cancer.

Item 3, How a common virus is beating cancer.

Item 5, Scientists prove compounds in food are anti-cancer.

Item 8, What you must do BEFORE having 5-FU or Capecitabine.

There are 9 items but I have picked out the ones I thought might be the most interesting, because there is so much information to take in in these newsletters.

I also read the magazine New Scientist and there is a special report entitled Does this one microbe cause all these conditions – heart disease, stroke, Alzheimer's disease, diabetes, Parkinson's, preterm birth, pancreatic cancer,kidney disease – and does that mean we can beat them?

That is about all for now.

Have a good weekend.

Love.

Sylvia xxxx

maryna8

Thanks ufcknights

Your mother's stats are all clear to me, and I would think the docs will want your mom to do the estrogen blocking pills after chemo, if she had only had the TNBC it would not have been a factor. I also just have one breast, and did not have reconstruction, but I had (have) small breasts so it's hardly noticeable. I do wear a prosthetic in my bra if dressing up to go out, because it makes me symmetrical in clothing. The bras and prosthetics are paid for by insurance, if your mother wants to go that way. I am allowed several bras a year by insurance, and a new prosthetic form every 2 years. There's no way I wear out that many bras a year!

Hope all is well, have a good weekend

Mary

SusieW5

One year today since my last cycle of chemotherapy!

Susie

rosiecat

Hi Susie,

Congratulations. Something worth celebrating, so I hope you did!

Gill X

rosiecat

Hello Sylvia,

Apologies for my very late response to your last post to me. This week has been absolutely full of things that just couldn't wait. I have browsed through the posts so I am at least up to date with what is going on with others on the thread.

I agree, Johnson will do very little to tackle the growing poverty in the UK, though he does appear to be throwing our money about like confetti. There's probably a General Election coming up.

A very old friend who completed her treatment for TNBC early last year found a tumour in her other breast last month. This is also triple negative. It's a primary, the same size and grade as the first cancer. It is also in a similar position. She has had a lumpectomy with good margins and will be starting radiotherapy again as soon as the wound has fully healed. She has declined chemotherapy as the side effects were very difficult last time - neuropathy and exhaustion have remained with her. Her surgeon has told her that having TNBC again after such a short time is very unusual but is down to sheer bad luck. Her surgery took place just two weeks after diagnosis. If I'd been offered surgery that quickly I would not have pushed for chemotherapy. Surgery is key to cancer survival and it would save the NHS a great deal of money in the long term if waiting times for operations were drastically cut across the whole country.

The weather here is bright but very windy. Part of a willow tree came down yesterday, very close to our conservatory.

Take care of yourselves with special thoughts for Raymond who I know, has been unwell.

Love,

Gill X

rosiecat

Hi Mary,

Apologies for the late response.

My garden pictures probably look bright as it had rained on and off that week, mainly during the night, which is how I like it. It's difficult to imagine what really hot dry weather does to gardens in Australia or the States. Are you allowed to water the farm freely or are there restrictions or huge costs involved?

Getting used to the weight of my prosthesis now. Though, like you, I don't bother when I'm at home. Very grateful for a small bust. This wasn't always the case, thinking back to my teenage years and the angst of still resembling an ironing board at age fifteen.

I'm so sorry that you may need more shoulder surgery. Will it be less complex to put right or are you going back to the beginning? My daughter told me how complicated shoulders are so I guess there was always the chance of needing more surgery. I can't remember if you were considering a second opinion? It might be reassuring.

Nothing much has happened here, except Norwich Anglican Cathedral, (lost to the Catholics during the Reformation), has erected a full size helter-skelter in the nave. It's there for a couple of weeks and has upset many people. Rochester Cathedral has installed crazy golf in the nave as a sort of play and pray initiative! The Archbishop of Canterbury has said, (I paraphrase), that if you can't have fun in a Cathedral where can you have fun? I think we've all gone quite mad. Us Catholics are watching to see what happens next, but I'm beginning to think there ought to be an eleventh commandment, 'thou shalt not gloat' perhaps?

Take care of yourself and pesky shoulder.

Love,

Gill X

maryna8

HI, Sylvia

I saw the newest post from Woollams too, and have gone over some of it. Polyphenols (cabbage,carrots, grapes, and oranges) as cancer fighters, and hyper-aromatization driving many cancers, including breast cancers. I always find his articles interesting, not all of them pertinent to me but interesting. They seem to be coming quickly again. I still have more to go over.

I have not yet sought out the second opinion on my shoulder. I decided to wait until after the 27th, when I see the doctor again. I want to hear how she thinks we should proceed. For me, going in and getting out the broken piece of material seems the best route. I just want to get all this over with. It should not involve cutting any tendons or muscles, so it shouldn't be a long recovery.

I did buy some rose-hip tea, it has a pleasant taste. As with the green tea, it is always nice to drink a beverage and feel you are fighting off cancer.

I also like "eager reader", better than lurker. Or how about "passive reader"? I do think "lurker" is similar to "skulker" or "stalker".

I wonder why the docs would give Raymond a pill that sometimes makes his blood pressure too low? Surely there is something better.

There is a thunderstorm very close to this area right now, I do hope it doesn't fizzle out. It's badly needed, everything is parched. So far there is a lot of noise and hardly any rain.

I will talk to you soon, enjoy what's left of the weekend!

Love, Mary

maryna8

Susie,

Congratulations on your milestone, I wish you many more!

Mary

maryna8

sylviaexmouthuk

Hello Mary, Gill, Susie,

Thank you all for your posts. Congratulations to Susie on a year since finishing chemotherapy.

To Mary and Gill, thank you for your interesting posts. I hope to be able to answer later on today when I have more time.

To fcknights, try not to worry so much and be strong and optimistic for your mum. She will get through this and get back to a normal life.

Talk to all soon.

Love.

Sylvia xxxx

sylviaexmouthuk

Hello Mary,

I have been through all the Chris Woollams recent information. What I do is read his newsletter and then I print off the more detailed information for each section that I feel is of the greatest interest. There is often a lot of detailed scientific information which is quite difficult to retain for long, so I tend to write the food you need in the margins. It all boils down to eating a varied diet and staying off junk and processed foods. If I look at the margins I have filled in about natural aromatase inhibitors for breast cancer and prostate cancer, I have the following foods: green vegetables, lentils, chick peas, beans, broccoli, kale, onions, apples, garlic, kale, Brussels sprouts, cabbage, red grapes, red berries, black beans, passion fruit, piperine, white button mushrooms.

These are the foods mentioned in various categories for various compounds. Trying to memorise various flavonoids etc. is more difficult than just listing the foods in the various things and making sure to eat some of them. For example, quercetin is in onions, apples, garlic, kale, Brussels sprouts and cabbage and kale is found also in indol3 carbinol which is also found in broccoli. As I say, I just find it easier to eat a good mixture of fruit and vegetables and emphasise green leafy vegetables.

What really caught my attention in the latest email was article 8 – What you must do BEFORE having 5-FU or Capecitabine. We all know that 5-FU or fluorouracil is given as FEC chemotherapy to some women with breast cancer. It says in this section that it is dangerous and goes back to 1956. It says that capecitabine is 5-FU in disguise. It further says that these drugs are dangerous if you are lacking certain liver enzymes (DPD). It even says they can kill you! There is a test in America. In the USA, Medscape says up to 20% of people could be at risk. In the UK Cancer Research plays it down but still admits 2% to 3% of people could be affected. You have to make sure you get the test before you have these drugs.

In the more detailed section of article 8 it lists the side effects of 5-FU – mouth ulcers, taste changes, diarrhoea, skin darkening, lowered resistance to infection, eye discomfort, fatigue, bruising or bleeding and anaemia. It further says that it is one of the most common chemotherapy agents to cause cardiotoxicity.

Of course, we shall all recognise these side effects and they are probably common to the other chemotherapy drugs as well.

I think that is about enough from the Chris Woollams information.

I do hope you will have good news when eventually go for that second opinion.

I was interested to read that you tried the rosehip tea. Did you get the book that was advertised on that site? I could not get anywhere trying to obtain it. I have all sorts of Clipper green tea but think the leaf green tea is the best.

I do think passive reader is good as well. I do not like lurker. It is also important to remember that if people do not post there will be no threads and no forums. We all have a duty to contribute and that goes for society in general. I have found in England in the parts that I know that people like to have a moan and say 'someone should do something about that!'. I am always doing something about that but I am in a minority. Here I got bus bay markings put on the road to stop people parking in front of bus stops, for two years running I have been getting weeds removed along the pavements etc. I always pick up litter and so it goes on. Raymond and I do so much where we live, whereas others do nothing except moan.

Thank you for the lovely photograph.

That is all for now.

Love.

Sylvia xxxx

sylviaexmouthuk

Hello Gill,

Thank you for your post. I do understand how we can all get very busy.

I do think we are heading for a General Election and I do wonder what the result will be. This country is in dire need of having a more modern government. The way it is at the moment is useless. We have lots of long-winded speeches, stupid ceremonial nonsense and no action.

I was sorry to read about your friend having to go through treatment again. I can understand her not wanting chemotherapy because of all the side effects. Radiotherapy is enough to cope with and also has side effects. I was reading on a post in the TNs about a woman who had had proton beam therapy and how much less dangerous it is. In the same post I read that the current radiotherapy done on your chest can penetrate to your back. That is rather frightening.

I agree with you that if you can just have surgery to treat your breast cancer, that is probably the best option. How effective chemotherapy is seems rather dubious from what I have read. I keep reading it is only 3% effective. Some of the chemotherapy drugs such as 5-FU, doxorubicin, epirubicin and perhaps cyclophosphamide are all very old now, dating back to about 1954 and are known as old generation drugs. Have a look at my latest post to Mary.

I do hope we all get some uneventful weather now, not too hot and with regular rain overnight. I do not like the high winds we have been getting.

Thank you for your special thoughts for Raymond. He much appreciates it, and we send kind thoughts to you and Michael.

Take care.

Love.

Sylvia xxxx

sylviaexmouthuk

Hello Mary,

I just wanted to say that I had to go to my small natural food store this morning to pick up some bread, so I had a look at the teas, as I often do. I bought some rosehip teabags and Raymond and I tried the tea later today. We found it very enjoyable. I noticed that there was also a small bag of loose rosehip tea, which I think I shall try next time. It looked very fine so I am going to buy a small tea strainer, put some in it and pour water over it into a mug.

By the way, please try to read the article in the latest New Scientist entitled "The hidden cause of disease" by Debora MacKenzie. "Everything from heart disease to Alzheimer's has been blamed on unhealthy lifestyles, but could pervasive bacteria be the true culprits?". I would love your opinion on this.

Sending love and best wishes.

Sylvia xxxx