Calling all triple negative breast cancer patients in the UK
Comments
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Hello to everyone on the thread. A lot of you have been silent this week, but I hope all is well with you.
Linali (Lindsay) and Mumtobe, I hope all is well with you in Ireland.
Chatterbeox2012 (Michael), I hope you are not feeling so low and not in so much pain. I seem to remember that you were going to your sister-in-law's in East London, so I hope you are having a bit of enjoyment.
PeterandLiz, Norfolk, UK, I am sure we have all missed your words of wisdom this week. I hope you are well.
EmmaL, Manchester, UK, we have not heard from you in a while. I hope the chemotherapy has not taken a big toll on you.
Lolalee, thinking of you and wondering what you are up to. Are you back in Australia now? Any news of Liv?
To all the American women, InspiredbyDolce (Debra), I hope all is well with you, PeggySull, let us know what happens with the oncologist on April 30th.
Placid44 and Cynthie, how is the radiotherapy going?
Bak94, hope you are well. I was interested to know you had been riding your bike.
ThreeWishes, did you have your test for BRCA? Have you made a decision about a mastectomy?
To our Canadian friends, Adagio, have you now finished radiotherapy?
Sjesse12345, how is the chemotherapy going? When will you have surgery?
Slv58 (Shari), I hope the chemotherapy is not too bad. I know you were feeling very tired.
To Carolben in South Africa, I really miss your informative and interesting posts. I do hope all is going well with your treatment for mets to the lungs and I hope you are not too lonely. Please keep in touch.
I hope I have not missed anyone. Thanking you for all you do to keep the thread going.
Enjoy your weekend as much as you can and post about anything you like.
Best wishes.
Sylvia xxxx
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Hi all,
I am now finished my radiation treatments - yeah!!!! And believe it or not in a few hours, I am heading to San Francisco for a few days. My husband is going to a conference and he had asked me to join him a long time ago, but I didn't know how I would fare with the radiation - but I did OK, so I asked my oncologist about flying and she said "go for it" - and that is exactly what I am doing. I love San Francisco, and it will be a much needed change for me. It is a short flight and only for 3 overnights, so it should be fine. It will be my first time out of the country since my diagnosis so it will seem a bit strange.
Nice to hear from everyone and welcome to the new people on the thread.
Sylvia - I just downloaded "Your Bones" onto my i-pod, so I will be able to read it on the plane. I am looking forward to seeing what it has to say about the different supplements, diet and drugs for osteoporosis.
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Sylvia as far as the subtype I cannot say much. She just said that in TN,s they had found there was a new subtype those that recurred early and thes metastasized and then the ones who tend to recur way pass 10 yrs and do not spread. I was kinda in another world still. Confused, depressed etc. My husband repeats it to me often so I can remember what the doc said. You would have to research the cancer conference in Texas in December and what was discussed on TN's.
If your doctor went to Texas in December he would know.0 -
Hello adagio,
I was glad to know that you have finished treatment. Congratulations. It is now behind you and you need to try to live as normally as possible.
I hope you and your husband have a good trip to San Francisco. You have certainly earned it and it is good to do something special.
Thinking of you.
Sylvia xxxx
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Hello netty46,
Thank you for your post. Your information is always useful. Let us hope that we can all steer clear of new primaries, recurrence or metastases.
Let us all think of those newly diagnosed and those going through treatment.
Let us not forget that we have placid44 and Cynthie going through radiotherapy and they need our support.
Let us not forget Sjesse12345 and slv58 (Shari) and Carolben, all going through chemotherapy, as well as EmmaL.
Let us not forget Michael, also going through treatment again.
Let us all remember Sam_UK, who can celebrate that her tumour was a cyst, but has been through a hell of a journey with breast cancer and is now dealing with the breakdown of a long term marriage.
Last, but not least, our thoughts should go to 3wishes for whatever treatment she has to face.
To the newly diagnosed, do not be afraid, you can do this.
Best wishes.
Sylvia xxxx
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Hi Sylvia,
Liz is very good thankyou. She is planning my 50th and her 45th birthday party in September 2014 so she has something to keep herself busy. It has been the thing she wants more than anything else. She loves dancing. Liz goes Jive dancing every Wednesday that she is feeling up to it at a local club. She has been looking for a good 50's style band this week.
Liz found your comment about me very funny, as she know's what I am like.
I feel for everyone going through treatments and tough times at the moment but you will get through this and there is better times to come. I remember 2 years ago the day after Liz was told she had cancer. We decided to take the children out to a steam museum. Liz and I were walking round in a complete daze both thinking this could be the last day we have out together. How stupid that sounds to us now but it was real at the time so I know what a lot of people are going through.We visited the hotel today that we were married in 2.5 years ago. We plan to go back in May and stay in the same room as we spent our wedding night.
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Hi Sylvia, thank you for thinking of me. I really do not have much to contribute and no words of wisdom but I do read the posts and often think of everyone going through treatment. All I can say is that I hope all those enduring treatment will have excellent outcomes.
I am back in Sydney for a short time as I have been asked to present a property for sale. I have been given a budget which is quite generous and I will be able to work wonders with that. The house is a charming 1920's with stunning views of the Opera House and harbour. The property is situated high on a hill with a beautiful garden of clipped hedges and arbours of roses, so romantic, This calls for chintz's and florals and white wicker under the shade of a tree to watch the beautiful sunsets.
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Hello Peter and Liz,
It was nice to hear from and to know that all is well with Liz. It is good to plan forward a bit and to be looking forward to September 2014. Are both your birthdays actually in September?
Liz must be very fit with all that jive dancing.
Thank you for all the support that you give on the thread, as it is very important.
I can identify with what you said about walking around in a daze just after diagnosis. I can remember, when my GP said she was pretty sure that I had breast cancer, going into a deep silence with those words going through my head. The same day I saw a consultant and she said the same after examining me but said she had to prove it. It was then that she did a fine needle aspiration and made an appointment for me to see her at her clinic the next day. The following day was probably the worst day of all my treatment, as I was feeling very emotional and kept having bouts of weeping. I had a mammogram and then an ultrasound and a core biopsy. I hated it all and all I could think about was that I had crossed into a world of the sick and unhealthy. I had a splitting headache all that day. In the afternoon I returned to the breast cancer consultant and I was told to return the following week. That evening I cried and cried and then I seemed not to cry any more. I really do remember that as a terrible day. That is why I tell the newly diagnosed that we all go into some kind of shock on diagnosis and that we then need time to sort ourselves out before deciding what we are going to do.
I hope you are having a good week. Here in Exmouth, when the sun comes out it feels warm for once, but there is still a cold nip in the air.
Best wishes.
Sylvia
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Hello Lolalee,
Thank you for keeping in touch. Even if you think you do not have much to contribute, your very presence on the thread, as someone who has successfully completed their cancer journey, is encouragement to all those being newly diagnosed. There is a juggling act going on between finishing treatment and wanting to move on, and staying on to comfort and encourage the newly diagnosed.
I was interested to know that you were back in Sydney for a while and have been asked to present a property for sale. It all sounds very interesting.
Keep well. Fond thoughts.
Sylvia xxxx
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Hello everyone,
I thought you might be interested in the following article that I saw yesterday in one of the newspapers here in the UK.
Seven golden rules to live longer.
Anti-cancer plan adds years to life, says study.
According to this study, following these golden rules cuts the risk of dying from cancer by 20% and also protects against a string of other killer diseases.
These rules were drawn up six years ago by the World Cancer Research Fund and American Institute for Cancer Research.
The seven rules are;
1. Be as lean as possible without becoming underweight.
2. Be physically active for at least 30 minutes every day.
3. Limit consumption of energy dense foods – those high in fat or added sugar, and low in fibre – and avoid sugary drinks.
4. Eat a variety of vegetables, fruit, whole grains and pulses, such as beans. As well as five portions of fruit and veg a day, try to eat whole grains with each meal.
5. Limit consumption of red meat, such as beef, pork and lamb to 500 g cooked weight a week and avoid processed meats such as ham, salami and bacon.
6. Limit alcoholic drinks to two for men and one for women a day.
7. It is best for mothers to breast feed exclusively for up to six months.
It says that rule number 1 and number 4 of these golden rules had the most impact. It also says that following these golden rules significantly increased longevity. It also says that women who breastfed for at least six months had a reduced risk of death from cancer of 10% and circulatory disease of 10%.
Later in the article it mentions the health advantages of not smoking.
I must say I was surprised that not smoking does not appear as one of the golden rules.
The link to the article is:
Thinking of the two women going through radiotherapy, to the three women going through chemotherapy, and to the one waiting to begin treatment. I do hope you are not feeling too unwell.
To Michael, I sincerely hope you are feeling better. Is your treatment with chemotherapy drugs or monoclonal antibodies?
We do not seem to be having a lot of newly diagnosed people posting, so I hope that is a good sign and means fewer being diagnosed and I hope it does not mean they have been diagnosed and dealing with this alone.
Best wishes.
Sylvia
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Hi Sylvia,
It is colder here this week but has been mainly dry.
I have just read through the paper report and find it very surprising the percentages they are claiming.
Is there any large, recent surveys similar to this one but on women that have already been diagnosed with breast cancer concerning the chances or recurrance?
Its something I have never looked at as Liz has no plans on changing her diet. She enjoys her dairy products, red meat and bacon. Liz only has 2 alcoholic drinks per week and never more than 1 in 24 hours. She has never smoked.
Peter
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Hello Peter and Liz
I do not know whether there is research about survival rates if you have already had breast cancer, connected to those seven golden rules, but I shall certainly try to find out. I am convinced that there is a connection between nutrition, general lifestyle, physical activity etc, but if there is I do not think it is guaranteed.
I found this link on another thread and thought it might be useful for you and all of us to have a look at. The link is
and it was posted by InspiredbyDolce (Debra) who regularly posts on here and always has a lot of information.
I shall post again if I have more information.
Fond thoughts.
Sylvia
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Hi Sylvia, hope you are well! I must admit I have to look closer at the 7 golden rules and find more motivation to incorporate the ones I am lacking in-I must loose weight and exercise more! I'm afraid this will have to wait until I bounce back from chemo,as I have been very diligent in what I eat (about 1300-1400 calories a day) but I guess with the steroids, cannot loose weight. I also just don't seem to have the energy to even go for a walk until 2 weeks past chemo and by then I'm due for another! Well one more to go, then I'll put more effort into it!
Been feeling fairly well otherwise, except I have developed a raging stye in my eye! I'm on antibiotics for it, but it doesn't seem to be improving yet. Ill give it 4 days, then back to the dr.
I hope that everyone is well and coping with whatever stage they are in, in their journey. I thank Sylvia with all my heart for being there with such a positive attitude for everyone -we appreciate it! Keep smiling everyone-cancer hates that! Shari0 -
Hello Shari,
Thank you for your post. I am sure you will do all you can to help yourself with losing weight and exercising more once you have recovered from your treatment. When you are going through chemotherapy you have to be very gentle with yourself and rest whenever you feel like it. Remember these are lethal drugs that are going into your body and your immune system will need plenty of time to recover. Do not worry about not having the energy to go for a walk.
With chemotherapy the worst week is generally the first week after treatment, and then you start to pick up, but by the time you start to feel normal you have to go for the next treatment. At least this seemed to be the pattern on my every three weeks treatment. I know that women who have recently gone through chemotherapy treatment have found it much easier going through treatment every week or every two weeks instead of every three weeks.
Do not rush into things straight after treatment. You do not need to do rigorous exercise. Regular walking and generally staying active during the day is sufficient.
If your eye does not improve see your oncologist rather than your GP, just in case it is connected to the chemotherapy. It is probably due to having a weakened immune system from the chemotherapy. I remember when I was on Taxotere that my toenails went a brown colour and one afternoon my thumb suddenly turned black and then suddenly recovered.
Thank you for your very kind words and I am glad that I can be of help. You are nearly through your chemotherapy journey, so keep looking forward, drink plenty of fluids, get plenty of rest and try to stay strong in mind.
Fond thoughts.
Sylvia xxxx
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Hello sam52,
I just wanted to say hello and hope that things are not too bad.
Today I checked the forum IDC (Invasive Ductal Carcinoma) and the thread that you started Parathyroid disease and breast cancer and bumped it up.
There was an immediate response and someone was posting about the case of another woman who suddenly started to go downhill very rapidly. It turned out she was suffering from undiagnosed hyperparathyroidism. She had surgery and immediately started picking up. This lady had previously had breast cancer.
Please try to read this post and tell me what you think.
I think GPs are too complacent about testing for high levels of parathyroid hormone (PTH) when doing routine blood tests and are too fond of saying that hyperparathyroidism is rare! I am convinced it is not that rare but under-diagnosed.
On my last visit to the GP I told her that my hyperparathyroidism had not been picked up by previous doctors and she said there was no way they could have known. I said it would have been picked up had they been doing tests for PTH in routine blood tests. My previous doctor had said that slightly elevated calcium was not a problem, and that was after I had been diagnosed with hyperparathyroidism when diagnosed with breast cancer in 2005. He also told me they did not test for PTH, even though I had been told to keep an eye on this.
I have also checked the other forum on which we met in 2009, Not Diagnosed with a Recurrence or Metastases but Concerned , and the thread High blood calcium levels. I have bumped this up as well. If you look at Active topics you should find both forums and threads on the first pages. We have to keep bumping them up.
I hope to hear from you.
Love.
Sylvia xxxx
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Hello netty46,
Thank you for your PMs. I have answered as best I can. You need a frank talk with your oncologist/breast cancer consultant to ask them if your treatment is now finished and will you now get regular check ups. Please look at my PM to you.
Best wishes.
Sylvia
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Hello everyone,
Did you see the latest news flash on bc.org about women not exercising during the ten years after diagnosis? How much exercise are you all doing? I think we all know that keeping active appears to be very important where breast cancer is concerned.
Hope you are all having a reasonable week.
Best wishes.
Sylvia.
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Hi everyone, I got the best news yesterday after being scared witless after talking to my surgeon two weeks ago. I also got some answers from my MO, who really keeps up with the research that I will pass along right after I share my good news.p
His reading of my post-mastectomy pathology report and his call to the pathologist with questions (he said the report had been confusing) is that I had great results from the chemo, great shrinkage of tumors from the chemo, not a single cell found in the lymph fluid or blood, four sentinel nodes all negative. According to him, I'm finished treatment and as long as I exercise daily and get my BMI down to normal, he's very optimistic. He said that for my peace of mind he will take my path report to the tumor board and call my surgeon, but he thinks they will agree with him.
Thanks to all of you that supported me during this period when i thought i'd need additional treatment and freaked out, especially Liz, Peter, and Sylvia.
Here are his answers to my additional questions that some of you may have wondered about too (this is just his opinion, and it is more relevant for EARLY STAGE tnbc):
1. Metformin--no research yet to confirm whether this is helpful for tnbc.
2. Avastin and other angiogenesis inhibitors--preliminary research indicates these are not helpful.
3. Bone strengthening drugs--currently controversial, need more research re their effects on early stage tnbc.
4. Vaccine to prevent recurrence--results from clinical trials not available yet.
5. PARP inhibitors--initially seemed promising but at this point are showing disappointing results.
6. Any new clinical trials I should be aware of? No.
So, according to him, best post treatment actions are to exercise 60 min daily and keep our BMI in the normal range by eating a healthy diet (I think these two recomendations have been emphasized on this forum repeatedly.)
So, I'm not going dancing in the street until after the tumor board meets but I will be dancing in my house in the meantime!
Peggy0 -
Hi Peggy,
Thats great news. Atleast now you can look forward as you do not have any more treatments to go through. Enjoy every day as it comes. It has taken Liz a year to get over the worst effects of the chemo. She is Jive dancing once a week at a local group and we plan to visit more countries this year around Europe in the motorhome. One thing the cancer has done is given us a kick in the right direction so we get out more and see more of our surroundings.
Peter
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Hello PeggySull,
I was so glad to know that you have had good news and that you have successfully finished your treatment. You can now put it all behind you and get on with your life.
Thank you for the information. It is as I thought. All the news about 'cures' and promising treatments really amount to nothing. All we have is surgery, chemotherapy and radiotherapy and drugs like Tamoxifen for those with hormonal breast cancer. The treatment has not changed much at all since the 1950s but more people are surviving. The drug companies are making a fortune with chemotherapy drugs.
You have to try to do things for yourself such as healthy eating, and exercise and those seven golden rules and hope for the best.
As Peter and Liz say, get on with enjoying life and as I say life is risky but the alternative is not that great.
Congratulations.
Sylvia xxxx
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Hi everyone
I have just posted this to the charity website. It is about the role of Tamoxifen in TNBC. It is well worth watching.
http://www.youtube.com/watch?v=r-mPHHK0JnEMichael
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Sylvia,
I agree with every thing you said but I have no idea what the seven golden rules are. If you have time, I'd like to hear them.
There's likely other Americans on this forum who would like to hear them too.
Today I'm making reservations for our 12th wedding anniversary Sunday and doing wash and exercising and walking our dog and planning tonight's dinner in a spirit I've never before known.
The paradox of having a life threatening disease is that you find more joy in little things that you (speaking for myself) may have never discovered if you had never had cancer in the first place.
Sylvia, Peter and Liz, and everyone who takes precious time to help one another here, thank you. And thank you for sharing in my good news!
Peggy0 -
Peggy, that is such WONDERFUL news!! Celebrate and enjoy, we need these happy outcomes and somehow I always feel a sprinkling of goodness hearing great news like yours, thanks for sharing with us!
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Hello PeggySull
I posted about the seven golden rules on April 30th. I read them in a newspaper article.
If you have not been viewing daily it is always good to go back to when you last viewed, so that you keep up with all the information and what other posters are saying.
Here are the seven golden rules again:
The seven rules are;
1. Be as lean as possible without becoming underweight.
2. Be physically active for at least 30 minutes every day.
3. Limit consumption of energy dense foods – those high in fat or added sugar, and low in fibre – and avoid sugary drinks.
4. Eat a variety of vegetables, fruit, whole grains and pulses, such as beans. As well as five portions of fruit and veg a day, try to eat whole grains with each meal.
5. Limit consumption of red meat, such as beef, pork and lamb to 500 g cooked weight a week and avoid processed meats such as ham, salami and bacon.
6. Limit alcoholic drinks to two for men and one for women a day.
7. It is best for mothers to breast feed exclusively for up to six months.
It says that rule number 1 and number 4 of these golden rules had the most impact. It also says that following these golden rules significantly increased longevity. It also says that women who breastfed for at least six months had a reduced risk of death from cancer of 10% and circulatory disease of 10%.
Later in the article it mentions the health advantages of not smoking.
I must say I was surprised that not smoking does not appear as one of the golden rules.
The link to the article is:
I hope you are feeling a sense of freedom today now that you have finished treatment.
I thought I would reprint the informed consent again so that everyone knows they must be in charge of their treatment and keep a careful watch on everything.
B – what are the Benefits
R – what are the Risks
A – what are the Alternatives
I – what does my Intuition tell me
N – what happens if I do Nothing
Best wishes.
Sylvia xxxx
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Hello Michael,
Thank you for letting us know about your post to the charity website, which I presume is the Janette Collins Foundation. I shall have a look at it later.
What sticks out in my mind about Tamoxifen is what I read some time ago about women who stay on Tamoxifen long term can end up with TNBC. I know it is a drug that has many side effects and some women are quite unwell on it. One of the main problems seems to be weight gain.
I have spoken recently with two men who have had prostate cancer and have been treated with oestrogen. They have both had and have problems with weight gain. One of them told me he had developed a lot of weight around the middle and had had some breast formation. He further said that he had been told that this was permanent.
I am very wary about all this messing around with our body's hormones. I am so glad that I am not taking anything.
I shall look at your link later on today to see what it is about.
Have you seen the Independent and i Paper this week? In the Independent there was an article about the exorbitant price of new cancer drugs and how a hundred doctors are complaining about the profiteering of the drug companies and how patients are dying because they cannot afford the drugs. Here in the UK NICE apparently makes its decisions on cost. Most of the drugs mentioned seem to be about those used for blood cancers, but all drugs are getting too expensive. I think the article was on Monday in the Independent.
There was another article in yesterdays i Paper and it was about women with breast implants more likely to die from breast cancer. You can probably find all this on line.
Hope things are not too bad with you.
Fond thoughts.
Sylvia
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Thanks for all this information Sylvia!
Peggy0 -
Thanks for all this information Sylvia!
Peggy0 -
Hello PeggySull,
Thank you for your post. I hope you will find the information useful and I would very much appreciate any comments you have about it. The seven golden rules seem to me to be common sense and definitely should have included not smoking.
I hope you have had a good day today. It is a strange feeling when your treatment finally comes to an end. I am assuming you will be having some kind of regular check ups.
I have been reading through some of the other threads and get the impression that a lot of women are worrying themselves about statistics on survival rates with TNBC. I feel this is uneccessary worry as none of us knows or can predict how long we shall survive, despite tumour size, positive nodes, etc. We have to live the day to the full and do the simple things that we can do to try to stay healthy. Trying to predict your survival rate etc. is like trying to pick out the winning numbers on the lottery!
I have just read one post where a woman was diagnosed with breast cancer (not TNBC) back in 1982 and just had surgery which was all that was available at the time apparently, and cancer reappeared in 2010. This shows we just do not know. It shows that you can survive with just surgery, but with chemotherapy and radiotherapy available, we are probably all too frightened to risk it.
Keep happy.
Fond wishes.
Sylvia xxxx
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Hello Michael,
Raymond and I have just looked at the video for which you provided the link and found it interesting. This was not the first time that I had heard about the possible use of Tamoxifen to treat TNBC. This was about turning TNBC tumours into hormonal ones and then treating them as hormonal ones! I certainly did not like the sound of that.
The idea on the video is different. This time it is proposed to use high doses of Tamoxifen to treat TNBC by targeting the stem cells because apparently with present treatment the cancer tumour is targeted but apparently the stem cells remain untouched and so the cancer can come back.
I do wonder about all this. Tamoxifen has a lot of nasty side effects for those treated with it for hormonal breast cancer and I am wondering what higher doses of this drug will do. I am not sure what the present dosage is for hormonal breast cancer but, if it is low, am I to assume that it is not touching the stem cells in hormonal breast cancer either?
I did not quite understand about the protein the professor mentioned.
I do wonder whether this is just another excuse to use a cheap drug to keep the profits rolling in and for the sake of using it, a bit like trying to put everyone on statins and causing a lot of people serious health problems.
I would welcome and appreciate your comments.
For all of you viewing, you might want to look at the Janette Collins Foundation that Michael set up in memory of his wife who died in 2012 from TNBC.
You can just Google Janette Collins Foundation and go to News.
Michael, I have just received my latest e-mail from Chris Woollams at Cancer Active. It has a lot of interesting information in it. I do not know whether you have signed up for the e-mail but it is free.
I am eagerly waiting for the first issue of their magazine called icon. It is a bumper edition to celebrate ten years of publication.
I found a copy at my hospital in June 2005 when I was first diagnosed and I have been reading it off and on ever since.
Sending you my very best wishes and hoping you are doing well.
Best wishes.
Sylvia.
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Sylvia - I had a wonderful visit to San Francisco - the weather was great - I did a lot of walking (hills and all). I ate some wonderful food - but must confess that I did miss my yummy organic greens that I eat every day here at home. How do others manage for eating when being away from home - restaurant food is just not that healthy.
I love the 7 rules to live by - trying to work on them all.
Peggy Sull - what wonderful news for you. You sound so upbeat and positive, it must be such a relief for you because I knew how concerned you were. I found it interesting to hear your oncologists remarks about the "various treatment options e.g. parp inhibitors, metformin etc.
I am now 9 days post final radiation treatment, and my skin did get much redder in the week after final treatment, but it seems to be cooling down a bit now. Fortunately for me - no blisters, no broken skin and no peeling so far.
Cynthie - how is your radiation going? Let us know - we miss hearing from you.
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