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Topic: Calling all triple negative breast cancer patients in the UK

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Sep 12, 2010 05:43AM - edited Aug 20, 2019 05:05AM by sylviaexmouthuk

sylviaexmouthuk wrote:

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 14 years and 02 months. 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.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 7, 2019 11:24AM ucfknights wrote:

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

Dx 1/23/2019, DCIS/IDC, Left, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/4/2019 Lumpectomy: Left; Lymph node removal Dx 2/28/2019, IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR-, HER2- Chemotherapy 3/11/2019 AC + T (Taxol) Surgery 8/19/2019 Prophylactic mastectomy: Right
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Aug 7, 2019 03:57PM - edited Aug 7, 2019 03:59PM by 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


Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 7, 2019 05:30PM ucfknights wrote:

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

Dx 1/23/2019, DCIS/IDC, Left, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/4/2019 Lumpectomy: Left; Lymph node removal Dx 2/28/2019, IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR-, HER2- Chemotherapy 3/11/2019 AC + T (Taxol) Surgery 8/19/2019 Prophylactic mastectomy: Right
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Aug 8, 2019 11:35AM 53nancy wrote:

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

Surgery 7/18/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 8/16/2017, DCIS, Right, Stage 0, Grade 3, 0/0 nodes Dx 8/16/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (IHC) Radiation Therapy 11/20/2017 Whole-breast: Breast
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Aug 9, 2019 04:16AM sylviaexmouthuk wrote:

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

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 9, 2019 04:35AM sylviaexmouthuk wrote:

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

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 10, 2019 05:52AM maryna8 wrote:

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

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 10, 2019 06:41AM SusieW5 wrote:

One year today since my last cycle of chemotherapy!

Susie

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/14/2018 Lumpectomy Chemotherapy 4/20/2018 Radiation Therapy Whole-breast: Breast
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Aug 11, 2019 02:28AM Rosiecat wrote:

Hi Susie,

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

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 11, 2019 03:23AM Rosiecat wrote:

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

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 11, 2019 04:41AM Rosiecat wrote:

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


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 11, 2019 07:15AM maryna8 wrote:

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


Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 11, 2019 07:40AM maryna8 wrote:

Susie,

Congratulations on your milestone, I wish you many more!

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 11, 2019 12:04PM maryna8 wrote:

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 12, 2019 12:59AM sylviaexmouthuk wrote:

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

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 12, 2019 03:38AM sylviaexmouthuk wrote:

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

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 12, 2019 07:45AM sylviaexmouthuk wrote:

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

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 12, 2019 07:53AM sylviaexmouthuk wrote:

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

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 13, 2019 05:33AM helenlouise wrote:

Hi Sylvia

You mentioned radiation penetrating the back. I had radiation to the nodes in around the clavicle and ended up with what they called an “exit” burn on the upper part of my shoulder. Burns, thankfully minor, to front and back. So I can easily imagine complications to the lungs, heart, ribs and even spine! The technique used last year was very different to the procedure I underwent in 2013. This time round I used goggles so I could “see” that I had inhaled sufficiently to move my chest away from the heart. The googles provide a visual indicator (green zone) in which you need to hold your breath whilst the radiation is given. Once in the green zone the technicians would audibly confirm that you need to hold your breath whilst they treat you. The process is to maximize clearance from and reduce impact to the heart. The previous time they just zapped me! I have heard that radiation can be given to the breast with the women laying on stomach and the breast hanging down below the table. This is again a technique to reduce the chance of irradiating other parts of the body unnecessarily. The science is amazing. I often feel like I am in a SciFi movie when undergoing scans and some of the procedures and treatments.

Kind regards Helen x

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/28/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Aug 15, 2019 02:09AM sylviaexmouthuk wrote:

Hello Helen,

Thank you for your interesting post. I have been very busy this week so this is the first opportunity I have had to comment.

It is not good that the radiotherapy being used can penetrate from the breast area through to the back. The powers that be here are definitely too slow in implementing proton beam. Patients tend to find radiotherapy easier to deal with than chemotherapy but they should be made aware that the radiotherapy treatment is also lethal and has nasty side effects.

I do remember my oncologist telling me that a patient could get bad inflammation of the lungs as a result of radiotherapy. You are right that it is easy to imagine complications to the ribs and spine.

I was very interested in what you said about how different your radiotherapy treatment was the second time around to what you had in 2013. It is certainly very different to what I had in 2006. I am wondering whether anyone is getting this treatment involving wearing goggles etc. in the UK. I was just zapped back in 2006.

Thank you for all that information about new ways of doing things. It is very useful for all of us and I am surprised there have been no comments since you posted. Information is one of the most important aspects of these threads.

I do wonder how much damage may have been done to my otherwise healthy body because of the treatment, even though I feel fine. I was troubled when a strange mole appeared on the part of my right arm where I would have had radiation effects. My own doctor dismissed the mole but another one referred me to the hospital mole clinic. It turned out the mole was melanoma and I had to have two surgeries to get everything clear. I was relieved when I was told all was clear and guaranteed that there would be no further problems (famous last words). It took the deep wound eighteen months to heal. The person that told me that and of course I felt relieved, than added that many years after radiotherapy patients can develop sarcoma cancers in the bones. That was rather scary.

Wishing you all the very best.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 15, 2019 03:37AM Rosiecat wrote:

Hello Sylvia,

Agree, Helen's post was very interesting. We can learn a great deal from what other patients tell us about their own experience of treatment. I was particularly concerned about exit burns to the back caused by radiotherapy, also the possibility of organ damage. I asked my original surgeon about this as he had suggested a lumpectomy followed by radiation. I'd wanted to know what happened when the radiation zapped the the tumour site, where else does it go? The possibility of it exiting through the back seemed very logical to me, as did the risk of heart or lung damage, so I asked the question. He was evasive and said he didn't know what I meant! Informed consent means nothing to some medics. Nobody should be signing up for treatment without knowing all the facts and we cannot assume that doctors give us all the facts.

I was interested in Helen's experience of radiotherapy with goggles and a visual green zone. Susie didn't mention this during her time in treatment, so I'm guessing that this is probably not available here. I do think that anyone about to undergo radiotherapy should ask about this. Proton beam therapy would be the gold standard.

It looks as though a thunder storm is brewing here. It's very quiet and dark outside and both cats are asleep indoors for once.

Love to you and Raymond,

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 15, 2019 04:38AM helenlouise wrote:

Hi Sylvia and Gill,

Thank you for your replies. I agree we can learn from each other’s experience. So sharing is important.

I am surprised and sorry to hear about your melanoma Sylvia. Both my father and brother died from melanoma and my cousin has also had treatment for melanoma. Apparently there is a gene that links breast and melanoma but I tested negative for it. I bet my husband I would test positive for one of the genes as I have a family history (both sides) rife with cancer (melanoma, breast, non Hodgkins, sarcoma, kidney and lung). Anyway I had to pay up as the panel of 5 genes they tested me for all negative. The genetic counselor said there is definitely something going on but they just don’t know what (yet)!

Each time I have another round of scans I wonder how much I am increasing my risk of another primary cancer but I do want to know where I am at, so what does one do? I have decided that if / when the next round of scans come back clear I need to return to work, move forward and try to forget about cancer. The wound on my chest makes it hard but I need to accept it could take many more months for it to heal. At least I no longer have the vacuum dressing.

Thank you for your discussion.

Hoping you are both well xx

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/28/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Aug 15, 2019 08:42AM SusieW5 wrote:

Hello, all

No I didn't have any goggles! What I did have was a sort of papier maché shell on the breast which was specifically to help prevent any damage to heart or lungs by holding the breast clear of the torso.

Susie

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/14/2018 Lumpectomy Chemotherapy 4/20/2018 Radiation Therapy Whole-breast: Breast
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Aug 16, 2019 02:49AM Rosiecat wrote:

Hi Susie,

I hadn't heard of the papier mache shell either.

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 16, 2019 03:15AM Rosiecat wrote:

Hi Helen,

Sorry to hear that your family on both sides have had much more than their fair share of a variety of cancers. It sounds like much more than bad luck. I met a patient a few years ago. He was in his late forties and dying of pancreatic cancer. This was his third cancer, the first, lymphoma when he was 18, the second when he was 30, I can't remember the type, and finally pancreatic cancer. Various specialists had told him there was absolutely no connection between the three cancers. We used to have conversations about it and both felt it was more than sheer bad luck. Of course, it could have been just that. Nobody in his family had ever been diagnosed with cancer as far as he knew.

I do hope that you're able to get back to work, I remember how much you enjoyed it. I'll keep my fingers crossed that your next round of scans come back clear. I absolutely agree that it's good to have something other than cancer to think about.

Keep on keeping on!

Gill x


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 18, 2019 04:24AM helenlouise wrote:

yes Gill, I will keep, you and the group informed. I definitely believe that luck has something to do with how life progresses. Especially when I know many do everything they can to prevent getting cancer and they still do.

Xx

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/28/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Aug 18, 2019 06:00AM - edited Aug 18, 2019 01:30PM by maryna8

HI, Sylvia

I think you are right to make notes on Woollams' posts and have decided it's almost always back to the Rainbow diet, and taking care of oneself. The information does come fast and furious, I just received my new copy of WDDTY and so far have gotten through the editor's post on the first page! I was gifted with the Wall Street Journal, and was dismayed to find that it comes every day! I have done some fast skimming but still the new one is here before I ever make much headway. And then there's all that paper.

I was also interested in reading about the fluorouracil, and how to prevent damaging oneself by having a test before taking it in cancer treatment. It does not seem to be a drug that is used much here in the US, if you look at the histories of the women who post on this forum. Over the years I have noticed that it seems to be frequently used by the posters from the UK. It does give one pause to realize how long this drug has been used, Adriamycin has been used since the 60s also, and in 1967 it was found to cause cardiac problems. Cytoxan was declared safe to use in the US in 1959, with a long list of side effects. And yet here we are, 50 years later, being given the same drugs. Taxotere is a newer arrival, starting use in 1998. I think a lot of people that I know have the idea that Breast Cancer is an "easy" cancer to treat, when you learn about the drugs we are given it makes you realize the truth, there are no easy cancers. Although now with the immunotherapy drugs, there may be better news in the future. Although I know they also have side effects, it does seem that people taking them function a bit better through their treatment. This is purely anecdotal, I am no expert.

I'm glad you like the rosehip tea, I like the tart flavor too.

Yes, I posted the photograph, but it looks so washed out, nothing like the real thing. It must be the camera on my old phone, perhaps. It loses something in the sending.

Good for you for your civic activism! It is impressive that you can get things done as you do. It is not easy for individuals to stir up the government machinery, whether small or large.

I tried to look at "New Scientist" but am blocked from viewing it, I suppose it wants a subscription.

I am off for now, talk to you again soon, '

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 19, 2019 06:00AM maryna8 wrote:

Hi, Gill

In response to question asked in your last post to me: there is no real expense in watering anything at my farm, I have a deep well and can do as I please. That being said, the only things I water are vegetable garden (if I have one), and a few flower beds. Everything else is on its' own!

I don't know yet if I will have more shoulder surgery, I will see the doctor next week. It would not be the same as before, since my rotator tendon is still repaired, the only thing needed is to remove the offending piece of broken screw that is floating in my shoulder. It is supposed to be absorbable, but the surgeon has told me she doesn't know how long that will take to happen. I think I would prefer to get it out of there, and be allowed to proceed with therapy and get better. I am so tired of messing around with this.

I am amazed at what you said is going on in churches over there, crazy golf and rides in church naves? Is this to pump up attendance? It sounds desperate to me, but seems to be going on everywhere. Here a neighboring rectory is being let out for a Bed and Breakfast, since no priest lives there. One of my stepdaughters and her husband are ardent churchgoers because the church they attend has lots of programs for their children's interests. But, these events don't happen inside the church but in the adjacent Church Center. The Catholic churches in my county are being written off by the powers-that-be, we are told there are not enough priests to manage them all, and we are told it would be just as easy for us to drive over to the next town where the church is still open (for now.) People here are very protective of their parishes' churches, and for good reason in my opinion. These are solid, some quite large and impressive limestone churches and were all or partly built by the parishioners themselves back in the 1800s. Now we are supposed to just say "oh well, no matter" and write them off? People are quite angry and I think the Church is doing themselves more harm than good. So far our Church (recently demoted to Chapel), is still open but the future is not looking too bright.

We have been fighting this for well over a year now, in this most recent dust-up. I really realized what was thought of us when I happened to read in a publication that it was thought we humble country parishioners had a "parish island mentality." There was(is) a woman whose job it was to go around the counties and convince us we were wrong, and small-minded to think in this way. We are slowly losing our grip, but not without a fight, I am afraid at the end of it there will be fewer churchgoers, not more. Sometimes I think the Vatican could sell some art if they are so desperate for money, but I suppose that is irreverent, however no worse than a carnival ride in the nave! I will stop for now, I could go on and on.

I will keep you informed on shoulder, and your daughter is right, the shoulder is our most complicated joint, I have learned. So far I still have one, just needs another touch-up! I hope.

Talk soon, love

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 19, 2019 09:23AM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your post. I will respond tomorrow as it has been another hectic day for me today.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 21, 2019 02:51AM sylviaexmouthuk wrote:

Hello Mary,

I have at last found a bit of time to post.

I agree that we are getting a lot of information and that it takes a lot of time to read it all. Another Chris Woollams email has arrived, but I have not had time to look at it. The next WDDTY is not in my local shop yet. I like to read the New Scientist magazine but it also takes some reading. I have kept the article The hidden cause of disease which was the Features Cover story of the last edition. I want to give a copy of this to my dentist/hygienist, as it is all about bacterial infection in the mouth being the cause of most of our chronic illnesses, especially Alzheimer's.

As for the chemotherapy drugs I think they are all as bad as one another. Fluorouracil, doxorubicin, epirubicin and cyclophosphomide are all known as first generation drugs and have been around a long time. The taxanes are the second generation, but, if anything, they seem to be more toxic than the first ones. They cause neuropathy, lymphoedema and heart disease. Not exactly an improvement. As for immunotherapy, the word sounds good but they also seem to be toxic. Two of my friends had them and died from them.

We are heading into a bank holiday weekend and Exmouth is just full of people. I shall be glad when the schools go back and we get back to normal. I would also like the politicians to give themselves a good shake and Brexit behind us one way or the other.

That is about all for now.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast

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