Calling all triple negative breast cancer patients in the UK
Comments
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Hello Hanieh,
Thank you for your e-mail.
It seems to be that on these threads that groups come and go. I have seen a lot of groups go through this thread in the past five years and it is very two-way while we have a group of women going through treatment together. There is regular posting and exchanges of conversation as the group goes through their cancer treatment together and exchange their various experiences, side effects and problems. For a little while after treatment the women post and then they suddenly disappear. This is the part that I find the most difficult and it would be nice if they just posted to say that they felt it was time to move on and put cancer behind them. When the names just disappear you are left wondering what may have happened. I do remember a very nice woman and strong poster from Ireland, Bernie Ellen, who did have the courtesy to post to say she was moving on because of other responsibilities and giving thanks for her support. There is not much to be done about those who just stop posting. It happens on all the threads. I suppose a lot of people are on Facebook.
I was interested to know that you are starting to translate some pages of the Rainbow Diet. I am sure you will be successful in anything you do.
I do hope everything will get sorted out with your treatment. I have noted that you will have a blood test in three weeks time, to check on everything. Have you any idea what your oncologist will be looking for in the blood test? If that were me I would want to know.
I do not envy you that you have just three weeks to decide whether you have the second Diphereline injection. I was very disappointed that I did not get a reply from Chris Woollams of Cancer Active when I asked him about Diphereline. All I can find about it is that it is used in the treatment of prostate cancer and that it is stated it should not be taken by women. I suppose you need to know why a drug used for prostate cancer and one that is stated not to be used by women is being used to treat you.
I was sorry to learn that you could not get that second opinion with an oncologist without a letter of recommendation from your oncologist, and you feel that such a letter will not be forthcoming. I think here in England you are entitled to that second opinion but I do not know what goes on behind the scenes.
I do hope you will be successful with the other appointment that you are going to make. Let us know how you get on. It seems to me that what you want to know is why this treatment is being given to you and what it is intended to do for you. Good luck!
Is your healthcare system all private?
Like you, I hope to see this thread busy again. It has been going for five years and a lot of the threads come and go very quickly.
I was pleased to know you are also following the news about Philip Hammond, our Foreign Secretary, and the re-opening of the two different embassies.
Wishing you all the best.
Sylvia xxxx
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Hello everyone,
I was looking through the magazine Healthy Living (in the Woman's Weekly Living Series). It is the health magazine for 40+ women, but I think it is useful for all ages.
Apart from the article I quoted before about Eat to Beat Cancer and the advice about what to eat at different stages of your treatment, I found another article entitled "6 things you may not know about Breast cancer". It further says "in partnership with Be Clear on Cancer".
The Be Clear on Cancer breast cancer campaign is there to remind us that older women are at greater risk and what signs to look out for. The titles of the six points are as follows.
1. You need to get to know your breasts.
2. A lump is not the only sign of breast cancer. You should also look for:
A lump ot thickening in the breast or armpit.
Changes to the skin of the breast.
Changes in the shape or size of the breast.
Nipple changes.
Nipple discharge.
Pain in your breast.
If you have any of these signs you should see your GP.
3. You are still at risk at 70+.
4. The earlier cancer is diagnosed, the more treatable it is.
5. Maintaining a healthy weight could reduce your risk. It says that being overweight is the biggest lifestyle risk for female breast cancer, account ing for one in ten cases. Exercise is very important. It is also stated that drinking too much alcohol can cause a number of health problems and it is linked with breast cancer. Drink less to reduce the risk.
6. You can ask for screening. In the UK women over 70 are not routinely invited for mammograms, but you can request one.
Although this is in a magazine that is said to be for the 40+, we all know that plenty of younger women are being diagnosed with breast cancer and I think they need to be just as vigilant as other women and get to know their breasts and follow the same guidelines.
You can also visit nhs.uk/breastcancer70.
The article I have just mentioned is on page 33 of the magazine.
For information about the food articles, which I put on a previous post, they are on pages 6 & 7 of the magazine and you can also visit www.wcrf-uk.org. This is the World Cancer Research Fund.
Would anyone who has any information about the drug Diphereline please post and let us know.
Tom, can you help us?
Best wishes to everyone and I hope you will make an effort to keep the thread going.
Best wishes to all.
Sylvia
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Hi Sylvia / everyone
Hope everyone is doing ok. Unfortunately the weather seems to have turned today it's quite cold and rainy here in Staffordshire.
My last chemo was April 9th and last radiotherapy mid July. Apart from my breathing still not being back to how it was ... I'm not feeling too bad at all. Although the body is starting to heal I feel that the mind will never be as it was , I was always such a carefree person. I am just trying to keep busy.
I was just wondering how long it was before your hair started to grow back? Mine is about half an inch long. It was very long and curly before and I thought it would grow back quite quickly but it's being a bit stubborn. I've started to use an oil by ayumi ( all natural ) which seems to be helping. It is used by Asian ladies and as they always seem to have such gorgeous thick hair thought I would give it a try .
Although the weather had been awful today I've been shopping in town with my mum for holiday clothes
))) there are lots of sales on at the moment and I felt like a treat. This evening I will visit my daughter , she is 26 and has a little apartment just a few miles away. She keeps me young and has been a huge support. Wishing you all a lovely evening
Amanda xx
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Hello Amanda,
It was nice to hear from you. I do hope your breathing will gradually get back to normal. What does your oncologist say about this?
You must give yourself plenty of time to heal both physically and psychologically. Remember, that your body has been through a terrible trauma and it takes a lot of time to recover. Chemotherapy and radiotherapy are lethal treatments which have poisoned your body and upset your immune system. It will take a long time to recover. Help it by giving your body the best care that you can.
When we are diagnosed with cancer it is a terrible shock and our mind has to adjust to the fact that we have been diagnosed with a life threatening disease and we then have to start the long and difficult treatment, even before we have recovered from the shock of diagnosis. Somehow we do get through it all and we do get back to as normal a life as possible, but I feel personally that we are never quite the same. One problem is that we have to try to have a normal life knowing all the time that the disease can come back. I feel that is probably the worst thing about having had cancer. All you can do is try to live each day to the full and put cancer in a small corner of it.
As far as hair growing back, it does take quite a time and you have to be patient. I remember I wore my wig from November 2005 after the first chemotherapy treatment as my hair started to fall out quite rapidly. I wore it from that date all through 2006 and I was not comfortable going out without my wig until about March 2007. The hair had been growing but only slowly and a bit wildly. You will get there and you will know when you feel comfortable with it. During treatment and for some months afterwards I massaged pure avocado oil into it (the organic oil that you buy for cooking and salads) and then I washed it in baby shampoo and conditioner. For sometime now I have kept my hair in good condition by using Dr Organics virgin coconut oil shampoo and separate conditioner that I buy from Holland Band Barrett. It is free of all the nasty chemicals in ordinary shampoo. You mentioned ayumi oil. Is this the brand or the oil? I cannot think it can do any harm to use it. Remember the best way to healthy hair growth is through good nutrition. Normally hair apparently grows about half an inch a month but you have to allow for it to be slower after the trauma of cancer treatment.
The weather has been awful here in Exmouth for the past few days with nothing but rain. Nature always catches up in the end.
I am glad to know that you have your mum and your daughter to support you.
What happened about your holiday to Dubai?
Tell us about your life in Staffordshire. It is good to compare the different counties. What are your hobbies or passions? What are your likes and dislikes?
Take care.
Sylvia xxxx
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Hello adagio,
If I remember correctly you were having a check up on August 25th. I do hope all was fine and hope to hear from you.
Have you any plans for the Labour Day weekend in Canada? I saw in one of our papers here that your Prime Minister is getting criticised about his hairstyle!
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia and HanTagh
I wanted you to know I have not disappeared, but I have gone into the woodwork somewhat. For a while I was very busy with my kitchen remodel. Then I started something else. I have not been completely open with you. I have another health condition that I had long before I had breast cancer. There was no good treatment for it in years past, so I was advised to bide my time. It did not interfere too much with my life. There is now a cure for it. Well, they say about 95% are cured, and the drug used causes minimal symptoms. I have to take one pill a day for 8 weeks. I started 10 days ago, and I, of course, am one of the ones to have a significant side effect. I have heavy-duty fatigue. At times I feel like I am on chemo again, which is very depressing. I have to rest a lot and am not able to do much now when I am wanting to tear into my house remodel and get it finished. So that is it in a nutshell. Oh, the condition I have is Hepatitis C. It went into the background of importance when I got the cancer.
I have to make a trip to the store this morning. That will be my big excursion for the day so I better get going. I will try to get back here soon.
Hope you are all well and happy.
Best wishes, Mary
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Hi Sylvia and everyone else.
Lots to catch up on! Firstly my wife and son are doing well. Her hair is growing back nicely and actually looks very cool, in fact she bumped into someone we hadn't seen since the whole BC thing and this person had no idea that my wife had been treated for breast cancer. She was saying how brave she was to cut her hair off and go for a funky style!
She still gets aches and pains - of course we worry. But we are trying to get back to normal. They found some swollen lymph nodes a few weeks back and of course we were very very scared. Although the doctors weren't at all and put it down to post-surgery effects and indeed the biopsy showed nice cancer free nodes! So please God we can just move on!
Quite a lot of comments to catch up on. To pick up on the sensational headlines from last week - HAGE is a protein which appears to be overexpressed in TNBC (or certainly some TNBC tumors) and may reflect how aggressive the tumor is. The actual study that lead to the headlines was a good study but almost similar to one published by the same group a couple of years ago. The scientific "press" is now littered with upregulated proteins that may be targets for TNBC and may be of prognostic value. While this finding was interesting both the press and the group involved in the work have made some claims which are simply wrong. The work was good, and was published in a good journal but not the best cancer journal and I think perhaps the authors have overplayed their findings
First of all the press - the statements that TNBC does not respond to chemo is 100% wrong. I will state this again its WRONG. TNBC has the highest response rate to chemo. pCR (complete pathological response rates) are highest with TNBC. Some recent studies are reporting 50-60%. In fact one recent study claimed a complete response in over 70% of the patients studied. Chemo drugs themselves have got better (i.e. better preps) and the treatment regimes are fully optimized to give maximum benefit. The statements some of the news papers made were sensationalist and based on misunderstanding. It was probably meant to enhance the story - what sells better "treatment for deadly form of cancer" or "treatment for aggressive form of cancer that is actually treatable and most women survive but we still need treatments for when if its spreads and also treatments with less side effects"
As for the science - two years to clinical trials I am afraid is nonsense. It will take two years to design and produce a molecule to target HAGE, the animal work involved before any human work will be allowed will take two years! I think the authors have overplayed the significance of their work to be honest - yes its good data, but at the moment thats all it is.
Some comments have been made about immunotherapy - personally this is where I think the break thoughs will come and is happening, especially for TNBC. Its widely known now that patients with TNBC who have a immune response - signified by immune cells in the tumor have an excellent response to chemo and prognosis. In fact from a big study called the METABRIC study - there appears to be 10 types of breast cancer, the best prognosis is seen in two sub-types; patients with luminal A (low grade, HER2 neg, hormone positive) and patients with an "immune module" - the patients with the immune module mostly (>95% i believe) have TNBC. Many TNBC patients actually have a type of breast cancer that far from being aggressive, is actually being held in check by their own bodies and then beaten by chemo. The key now is to find out why some TNBCs give an immune response and others don't. It appears that most do but for some reason the body shuts the response down. Enhancing the ability of the immune system to do its job is proving to be very effective. This is where the most progress is being made. (e.g. https://www.mskcc.org/cancer-care/clinical-trials/...)
Its also worth having a look at this blog (http://www.triplenegative.co.uk/im-a-miracle-appar...) - Clare is a TNBC patient who's cancer spread. But she has fought back and has just had some good news. She has had a range of treatments including immunotherapy Her and her husband Pete are lovely - i have exchanged emails with them several times.
Post again soon
Tom
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Hello maryna8 (Mary),
It was nice to hear from you and I was sorry to hear that you suffer from hepatitis C and that you had to put into the background when you were diagnosed with breast cancer. That must have been a very difficult time for you. It is good news that there is now a cure for it. I am sure that I speak for all of us when I say that with about 95% being cured we hope that you will be among them. I would be interested to know the name of the drug, as it is always good to be informed of everything that happens in the medical world.
You say that you have been taking the drug for ten days and that you have to take one pill a day for eight weeks. Let us hope that the bad fatigue that you are experiencing since taking the pill will subside. Am I right in thinking that you will be cured after those eight weeks?
I am not surprised that you say you have heavy duty fatigue. It is not two years yet since you were diagnosed with breast cancer, so you will still be suffering from the fatigue caused by chemotherapy, so it is no wonder you are very, very tired. I would think you would need to take it as easy as you can. In addition, you have been through the death of your husband, so you have had an awful lot with which to deal.
If that were me I think I would try to delay the remodelling of your house.
Keep in touch with us so that we can support you through all of this.
Fond thoughts.
Sylvia xxxx
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Hello Tom,
I was glad to know that your wife and son are doing well. I hope all is well with you and of course with your daughter. How is she getting on with her new brother?
You are right to try to move on and to have as normal a life as possible. You and your wife must be kept very busy with two small children.
Thank you for taking the time to post about the TNBC story that hit the newspapers a couple of weeks ago.
It was the comment about TNBC not responding to chemotherapy that really made me see red. I had always read and in fact been told by my oncologist that TNBC responds well to chemotherapy. Logic dictates that if it did not all of us with it would presumably be dead. I was told that the taxanes (both Taxotere and Taxol) were excellent treatment for TNBC.
Of course, the newspapers have to dramatise everything and the most dire titles probably sell the most newspapers that are interested only in bad news. Good news does not sell papers.
I was very interested in what you said about immunotherapy and that you think the breakthroughs will come through that, especially for TNBC. Let us keep hoping. It is very interesting to read what you said about "immune module". It will get us all wondering what went on with our own tumours. Keep us posted about what goes on in this respect.
Thank you for the links.
We shall all be interested in what goes on with Clare. We all know that metastatic cancer is the most challenging.
Thank you for all that help and information.
Take care.
Fond thoughts.
Sylvia.
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Hi Sylvia,
Thanks for thinking of me! Well, it has been a month waiting for the scans and results. I saw my oncologist this morning and she said there is absolutely no metastasis whatsoever, so thank God for that. I can now breathe a little easier and my mind will no longer need to go to dark places while I try and sleep at nights. I am so grateful. However, the oncologist strongly recommends me to take some kind of bisphosphonate. On our previous visit, she had recommended the IV drug given twice a year. But today, she said that sine there are no mets that Fosamax once per week would be fine. She gave me a prescription, and I explained to her my reluctance to take the drugs. My plan now is to let the fractures heal and then get a bone density done in the Spring and see what the stats are - if they are the same as 3 years ago, I will most likely not take the drug. However, if the osteoporosis is worse, I may reconsider. I love my oncologist - she is pure gold. But I did feel guilty for refusing the drug - almost like, I am letting her down or that I don't appreciate her. Whereas, I appreciate her greatly and feel well cared for by her. Oh well! I will endeavour to talk to other women who are taking Fosamax or have taken it and formulate my own decision and opinion. I do need dental work done, so that has to be done before anything else.
I will be going away next week to visit a part of British Columbia that I have always wanted to see. It is the remote part of Vancouver Island - quite isolated and a wild life paradise - lots of killer whales, eagles and bears. I am looking forward to it very much.
Great to read everyone's stories. And to get up to date research on various treatments for TNBC. It is exactly 3 years since I was diagnosed!
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Hi Sylvia and everyone
adagio I got really happy when I read your post and saw that you have no serious problem. I wish to hear all the good news from you.
Mary it's really good you have been busy with your life. I pray all your health problems get solved soon.
Tom thanks a lot for all the information you shared . I wish you and your family everlasting health and happiness.
Amanda to answer your question about hair I should say that for me it took along time for my new hair to appear. Almost two months after the end my chemo I was really depressed as I could see no sign of hair on my bald head while other patients who were much older than me had a head covered with hair . But when it came back it was so thick.Also I used the extra virgine olive oil to massage my scalp and I think it really helped. Now I think I have twice as much hair as I used to have before this disease. Though curly I have never enjoyed my hair more. As for your mental state I should say that the first 3 or 4 month after the end of my treatment life was really hard for me. Sometimes I thought I had pains all over my body . I was too depressed and hopeless to be able to enjoy anything but now I think I m much better than before. I'm sure you will be able to get on better and better with your life as time passes .
Sylvia Thanks a lot for your encouragement regarding my starting to translate The Rainbow Diet.
About your question regarding our health system I should say we have both public and private health systems .As my husband ' s insurance covers most of the expenses, we used the private one as it was far better than the other one.
I wish all the best
Hanieh
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Hello to Sylvia and all,
First, thank you Tom. It is nice to have an expert on hand with all this interesting info. It sounds like there is a lot going on in the research world. So glad your wife is doing well, I think it's safe to say we all understand all too well about those scares we have from time to time!
Amanda, I started my chemo in March 2014. In the following December I went without my wig to a company Christmas party. My hair.was VERY short, but I had a lot of people tell me they loved my edgy look! Now perhaps they were being kind, but it really didn't look bad. Sort of the Jamie Lee Curtis look, if you know who she is. She was in a lot of movies, and lately does TV commercials for yogurt. I never went back to the wigs, I got really tired of wearing them.
Adagio, I have a friend who is going through exactly the same thing re: the decision about biophosphonates. She is doing a lot of walking and weight training now to see if she can build her bone density naturally. She was quite the couch potato before so it should make a big difference. Whether it's enough for her bones she will find out later. Best of luck to you with that! Congrats on your scans.
Thanks HanTagh for your wishes and prayers. It will be nice to have this all behind me.
Sylvia, the drug I am taking once a day for 8 weeks is called Harvoni. It is a combination of 2 drugs in one pill. It works by stopping the viruses from replicating. It's odd, but at the time of my surgery, chemo etc. I really didn't research the situation of having HepC and cancer together. I figured I had to have the treatment, so away I went. I have been trying to study the matter a bit lately, and find there is not much out there about it. There is limited research that found that women who have BC and HepC have a harder time with chemo. More neuropathy and more neutropenia, which leads sometimes to lower dosages or discontinued treatment, thus a poorer prognosis. I had both neuropathy and neutropenia, to the extent of being hospitalized with the latter. The assumption is that it is harder for the liver to metabolize the powerful chemo drugs with HepC. The odd thing is that I have very little liver damage, and my oncologist told me that my liver would handle the drugs fine. I think there will be more research done on this in the future. And yes, at the end of this treatment, it is a very good chance that I will be cured. Last spring my hepatologist said he had treated 150 patients so far, with only 12 relapses. And he said those 12 were cirrhotic. The last time I saw him in July he had treated 350+ patients with great success. The normal span of treatment is 12 weeks, I am doing 8 weeks because of 3 things. I have very minor liver damage, I have a low viral load (amount of virus in the blood), and I have not been treated before. So I will try to hang in there with it, and rest, and try not to feel like I am on chemo again!
I wish you and everyone here the very best,
Talk to you soon,
Mary
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Hello adagio,
I was glad to know that your oncologist gave you the good news that all is clear.
As for the bisphosphonates, I think you know how I feel about these drugs. No one would ever convince me to take them, but it has to be your own personal decision. As you know, I do not think they do your bones any good, as they stop new bone forming and you end up with old brittle bones. I do not think bisphosphonates or strontium ranelate are the answer to dealing with osteoporosis, but these are the pills that orthodox medicine come up with. Remember the possible problems with necrosis of the jaw through taking bisphosphonates and this is something that a friend of mine ended up with because of taking bisphosphonates for seven years. They did little for her osteoporosis. Fosamax was exactly the drug she was on.
When I was diagnosed with osteoporosis in 2009 the oncologist, the person giving me the DEXA scan and my GP all went on about bisphosphonates. I did my own research and made my own decision to ignore them all. My oncologist told me that osteoporosis was a slow moving condition. My breast cancer consultant told me that bisphosphonates were nasty drugs and the homoeopathic breast cancer consultant I saw also told me they were to be avoided. These drugs are not only used to treat osteoporosis but I think I am right in saying they are also used in advanced breast cancer to the bone. I made my decision long ago that I would not take them under any circumstances. I have also decided that I shall not request any more DEXA scans. Here you have to go for about five years before you can get another one. I feel they are just a source of anxiety that I can do without. I shall continue to eat a calcium rich diet, try to keep physically active and take my own supplements that I have mentioned in the past. I think that vitamin D supplements are the most important factor in all of this. I also think that once you have osteoporosis you can keep it stable but I do not think you can reverse it. This is my own opinion.
You should not feel guilty about not wanting to take the drug. No matter how nice your oncologist is I do not think she has the right to try to push something that you are reluctant to take. It is your body and what you do with it is your decision and not the decision of anybody else. You have to remember that with doctors the answer is always to suggest a pill. They do not seem concerned about side effects or about the side effects of mixing different drugs that together may form a lethal cocktail. I have just been reading about how the average person over sixty five is taking about 30 drugs on prescription every day. That is awful and they are causing all kinds of side effects. If you want more details have a look at the latest issue of the magazine What Doctors Don't Tell You. They think that all these pills are causing further illness.
I was interested to know that you will be going to visit a remote part of Vancouver Island. Let us know your experiences. I remember going on the ferry fro Vancouver to Vancouver Island and then driving up to Port Hardy in the north. From there we took the inside passage on a boat and saw killer whales. We stopped off at a place called Bella Coola and got off for a visit. We saw many native indians. We then continued on the boat and went to Prince George and Prince Rupert.
I shall be thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
I am just popping in to say that I was interested in what you said to Amanda about hair growth.
Again, regrowth is probably very personal and we just have to be patient.
I hope all is well with you.
How is your school work going?
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for the information about the drug you are taking for your Hepatitis C.
It all sounds very interesting and I can imagine that chemotherapy would be more difficult with patients with Hepatitis C.
I do hope all will go well with your treatment and that it will end in a cure for you.
Remember, do not overdo things while you are going through this treatment. Rest whenever you feel the need.
Take care.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Thanks so much for your feedback about Fosamax - I am certainly not going to start it any time soon!! I am simply basking in the knowledge that I do not have metastasis.
The places you mentioned on Vancouver Island are some of the ones that I am planning on visiting. What a fabulous experience you must have had going to Prince Rupert. That is another place on my list, but the boat ride takes 22 hours, which is a bit too long for our time frame, so I will have to see it another time. We are going to Port Hardy, Telegraph Cove and Port McNeil and we are planning on seeing a lot of wildlife. Bella Coola is also on my list of places to visit. Yes there are a lot of First Nations ( we no longer use the term Indians) people live up north - they have their own way of life where they live off the ocean and the land. Fascinating. We have booked a whale watching excursion where we will be out on the water for 5 hours - so it should prove to be very interesting. We are also spending 3 days in Campbell River which is another fishing village. I am looking forward to my time away to simply relax and breathe in deeply and then breathe out again.
You certainly got to see a lot of places when you lived in Canada - they must be lovely memories to have. Enjoy your long weekend - we have our Labour Day weekend September 4-7, then schools start back on September 8th.
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Good evening,
I've been busy with grandchildren, visitors, Leigh and painting a Xmas card for the centre.
Good to see people posting.
I will post after my trip to England for my sisters 60th. Just at Kerry's with my two boys. It was Oskars 1st day at school this week. Catching the ferry from Dublin tomorrow.
Thoughts to everyone.
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Hello Linali and adagio
Thank you for your posts. I shall reply in more detail tomorrow.
Wishing you both well.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Yesterday I went to my father's oncologist to seek a second opinion . At first he was deeply surprised by my amount of knowledge about my disease and he, like me, strongly opposed dipherline injections . I should mention that here in Iran some hormonal breast cancers are treated with Dipherline for some time. Yet he said somethings that were somehow disappointing. He believed that a recurrence is very probable as I'm too young and a second breast cancer is something that may happen to me at any time. Though I knew all these before , hearing them again was really hard on me. Moreover , he believed that my chemotherapy regimen was not enough and if he had been my doctor , he would have prescribed stronger regimen . Isn't that embarrassing to hear such things months after finishing treatment and trying to start a new life. I really don't know what is sensible to do but for now I have decided to arrange an appointment with my surgeon who is a well known professor in the field of breast cancer. I hope to hear some encouraging words from his mouth.
I'm getting on with my translating and I really enjoy it.
Wish you the best
Hanieh
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Hello Hanieh,
4 years ago Liz was told if she had Chemotherapy she had a 64% chance of being alive in 10 years time.
Without chemotherapy she had a 51% chance of being alive in 10 years time.
That's only 13 extra people per 100 that survive with Chemotherapy.
These figures were from Adjuvant Online that the doctors use which we asked the surgeon to print out.
That's means there was only a 50% chance you needed chemotherapy to begin with.
These figures however are at the very least 10 years out of date as it has taken 10 years for them to collect these figures.
Liz and I are on some Triple negative Facebook groups. We have seen fully fit people going to the Gym 5 days a week, Kick boxing, eating healthily but dying within 10 months of being first diagnosed because the cancer came back very quickly. We have seen others with node involvement with large tumours have no recurrence in the last 10 years.
Liz only had FEC as she refused to have Taxol. Liz also had less than the stated dose at her request. She had 75%,80%,100%,100%, 80% and 80%. This was because she is very sensitive to drugs and she did not want to have to much.
I often read were peoples tumours has grown when they change onto Taxol.
Nobody really knows how much Chemotherapy is needed to work. It seems they give you just enough not to kill you, but who knows if half the dose will work the same?
People with the Brca gene are the ones most likely to get cancer again but does not mean that all will.
I do not agree with the Oncologist that said "a recurrence is very probable as I'm too young and a second breast cancer is something that may happen to me at any time" That only applies more to people that have the Brca gene.
The first 2.5 years are the most important. If Triple negative is going to come back it is most likely to come back in the first 2.5 years. We often read were peoples cancer has come back quickly. I rarely read people saying I have been clear for 4 years and the cancer has now returned.
I personally do not believe eating healthily will have much of a difference on whether the cancer will or will not come back. However a healthier lifestyle with exercise will keep you fitter and you immune system will work better. Thin, healthy and sports people still get cancer.
If your immune system is weak fighting cancer I do not think eating healthily will make much of a difference.
I am diabetic and have Rheumatoid arthritis. I have always been very fit and eat healthily. I do not smoke or drink and as a child I rarely had sweets. I did everything right but it did not help me.
Liz was diagnosed 4 years, 2 months ago. It has been the worst 4 years of my life. However it has got better in the last 6 months and it is getting much better each day. I know there is still a chance Liz's cancer may come back but that chance is getting smaller each day.
Regards
Peter
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Hi Peter
Thanks a lot for your response. I agree with most of what you said. We can never take anything for granted .Yet, I want to do anything I can to increase my chance of long survivorship without having to face this trauma again. I am a wife, a mother, a daughter, a sister, and a teacher who wants to live life to the fullest like all the people here . I have learned a lot from so kind and caring people like you and Sylvia here than from the doctors that unfortunately do not care so much for their patients ' mentality. Unfortunately here in my country there aren't enough references for patients who do not know English and doctors do not bother themselves with informing their patients of their disease and the best treatment options. And sadly they are reluctant to deal with patients like me who ,according to one oncologist I met , may have gained more information about their disease than their doctors . In the coming week I'm going to have an appointment with my surgeon who is the head of the cancer research center in Iran to discuss everything in detail. I think I need to hear satisfactory answers to all my questions .
Peter I wish you and Liz long ,happy life together.
Hanieh
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Hello adagio,
I was glad to know that you are not going to start Fosamax any time soon. I think that is a slippery slope that you need to avoid. Continue to bask in the knowledge that you do not have metastases.
I shall look forward to hearing all about your trip to Vancouver Island.
I think that the First Nations is an absolutely lovely name for the original native people of Canada. When I was living in Ottawa for a while our next door neighbour was a First Nations tribal chief, but of course very Europeanised in everyday life, but he still kept his festivals.
Have a very good holiday.
Fond thoughts.
Sylvia xxxx
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Hello Lindsay,
It was nice to hear from you. I know that you are busy with your family but I know, also, that you will try to keep in touch.
I hope you have a good trip to England. Are you going to the Midlands or southwards?
The years pass so quickly that I can hardly believe Oskar is now starting school.
Look forward to hearing from you soon.
Best wishes.
Sylvia xxxx
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Hello Hanieh,
I was interested to know that you had been to see your father's oncologist for a second opinion. I was glad to know that you had surprised him with your knowledge of your disease. I am very proud of you as I think we patients should be informed. Information may be frightening but it does allow us to make informed choices.
I am just wondering why this drug is being used in your country to treat some hormonal breast cancers, when, as far as I can tell, it is not used here and if you look up information it clearly states that it should not be used for women. Here, in the UK, after standard treatment, women with hormonal breast cancer are either on tamoxifen or drugs such as Arimidex, which is an aromatase inhibitor. It looks as though pre-menopausal are given tamoxifen and post-menopausl are give a combination of tamoxifen and Arimidex. It could even be now that the aromatase inhibitors are given to post-menopausl women and that they are not getting tamoxifen.
My friend and neighbour who has just been treated for hormonal breast cancer, had a mastectomy and no other treatment, has started Arimidex. She is elderly, so way past menopause and that is how she will be treated. Arimidex causes osteoporosis and she has already been told this and that the state of her bones will be monitored through bone density scans, DEXA scans.
Another friend of mine who was treated for hormonal breast cancer had a lumpectomy and radiotherapy and has been on mainly tamoxifen for five years and has had side effects, such as putting on weight. She is due to be discharged in October, so I do not know if she will be given anything else.
These two women have, of course, had positive receptors for oestrogen and progesterone, which are the most common receptors. They were not HER2+ so have not needed Herceptin. I know that being positive in all three makes you triple positive and that is considered aggressive. It was worse before Herceptin became available on the NHS but lots of women had to fight for this.
You say that some women in your country with hormonal breast cancer are treated with Diphereline but you have triple negative receptors so I am asking why?
I have a friend in Essex who is a senior nurse to a consultant at one of the best hospitals in London, and she deals with cardiology and cancer. I phoned her and asked about Diphereline and she told me she was not familiar with it.
It was not very encouraging for you to hear those words about recurrence and you must not focus your mind on that. Common sense says that a younger woman has more years ahead of her for a recurrence or a new primary than an older woman, but the majority will not have recurrence. I have yet another friend here who is 59 and she had breast cancer about 30 years ago and she is still here to tell the tale. She had a lumpectomy and radiotherapy and nothing else. Although her receptor status may not have been mentioned all those years ago, she did not have any hormonal treatment and so it is quite possible that she did have what we now call triple negative. She just got on with her life and now has three grown-up children. Just concentrate on that.
I think that all oncologists will probably have different opinions and that they may not agree on the best course of treatment. You have had your treatment and you are doing fine, so it was not useful for this oncologist to say that you should have had more chemotherapy.
When you have chemotherapy you are asked to give your height and weight and you chemotherapy dose is made up accordingly. I was told by my oncologist that I would have epirubicin, cyclophosphomide and docetaxel. Because I was informed I asked her why I was having docetaxel (Taxotere) rather than the other taxane drug, paclitaxel (Taxol) and she told me that docetaxel was less harmful on the heart.
Are taxanes being used in your country to treat breast cancer?
You must not be discouraged by what has been said at your second opinion appointment. Just tell yourself that you got through your cancer journey, that you are doing well, that you will do your best to stay well and enjoy every day to the full with your husband, daughter, family and friends.
Let us know how you get on at the appointment with your breast cancer surgeon.
In the meantime, carry on with optimism and enjoy translating the Rainbow Diet and enjoy teaching English.
Thinking of you.
Love.
Sylvia xxxx
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Hello Peter,
It was nice to see you back on the thread and coming in to support Hanieh.
I am sure she appreciated all that information.
I was glad to know that Liz is doing well and that things are getting better for you after the worst four years of your life. I hope this will continue.
I was interested to know about the triple negative groups on Facebook. How many groups are there? How do these groups differ?
I think we cancer patients just have to get on with our lives and try not to worry. I was one of those patients who did everything right during my life, or tried to. I am tall, slim, have always eaten healthily and kept physically and mentally active, but I have had a lot of stress and I think that may have been a factor in developing breast cancer. I remember my first appointment with the breast cancer consultant and her telling me that I should not have it. She also said the prognosis was not good because she could not give me tamoxifen because it was not hormonal. Fortunately I did not focus on this, nor on the fact that my tumour was large and one node, the sentinel node, positive. I just had the chemotherapy before surgery, a mastectomy, radiotherapy and then got on with my life. I have had no recurrence, no new primary and I have now reached ten years, two months and fourteen days.
Keep in touch. We are always glad to hear from you.
Best wishes.
Sylvia.
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Hello Hanieh,
I was just having another look at the details of your treatment etc. and on reading remembered that your invasive ductal carcinoma (IDC) was the type known as medullary which is a very small sub group of breast cancers. It only represents about 3% of breast cancers. You might like to have a look at the following link, which states that it is easy to treat. You have had your treatment, so look forward with optimism.
http://www.breastcancer.org/symptoms/types/medullary
Thinking of you. Take care.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Thanks a lot for all your support and encouragement. You are a great inspiration and relief to me. Also thank you so much for sending the link. I think there's no more link on the Internet about medullary breast carcinoma that I have not studied throughout my diagnosis and treatment.
Another name for dipherline in Iran is decapeptyl that in addition to some hormonal breast cancers is used for treating endometriosis and for some women with menopausal problems.
Taxanes are widely used in Iran but not for me.
Love
Hanieh
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Hi Sylvia / everyone
Thank you so much for your replies regarding hair growth. I think I am just being impatient and should feel blessed that it has come back at all.
Hanieh I hope that your oncologist is able to answer your questions. I am like you trying to do everything possible to help myself diet, exercise etc. Although I was very sporty and eat very healthy before the diagnosis. Like Sylvia I think stress played a role. To be honest I also like to surround myself with positive people and do not listen to negativity. Negativity doesn't help anyone. I was wondering also have you ever visited Dubai from your country? I will be going there soon with my daughter I am very excited.
Hope everyone else doing ok. Thank you Sylvia for your positive posts my diagnosis was almost identical to yours and when I have a jittery moment I think of you xx Amanda
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Hi Sylvia and everyone
Now it's late at night. As usual we are spending our weekend in my mother in law' house. Every one is sleeping but me. Though very energetic and positive most of the times, when it comes near to the time of check- ups, I feel a bit law. Yet I don't want to surrender to this feeling. With so nice and encouraging friends here I feel strong.
Sylvia would you please search for the named decapeptyl instead of dipherline?
Maybe we could come to some conclusion.
Amanda you are going to enjoy your hair growth increasingly day by day. After some time you will wonder how it has grown so fast. Regarding your question about Dubai I haven't gone there yet but I know it's a great place to visit. I have visited Turkey and I really enjoyed Istanbul which is the borderline of Asia and Europe. There, I met lots ot tourists from all over the world which was really pleasant. In fact nothing is more fun to me than travelling to different places. My husband and I want to plan for as many travelling as we can afford. I wish you a very enjoyable time in Dubai with lots of interesting memories to remember in the future.
Love
Hanieh
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Hello Amanda,
Thank you for your posts.
I think all of us going through breast cancer treatment get impatient for our hair to grow back. Our hair falling out so quickly after that first chemotherapy treatment is so shocking and traumatic. It makes us feel very unglamorous and we just have to adapt to it, get through treatment and wait for it to come back. I think it is this side of our treatment that is much neglected by orthodox medicine. I got through it by wearing my lovely wig all the time when I was outside of my home and wearing a very nice turban when indoors. I went through my treatment from November to April so it felt pretty cold with no hair.
I am pretty sure that stress plays a part in developing cancer. I can read my body now in a way that I did not read it before my diagnosis. I can feel changes in my breathing and in my body if a situation makes me feel stressed. I am sure that stress probably plays havoc the hormones and that upsetting the hormonal system cannot do us any good. Of course I am not a doctor, but common sense makes me say these things.
You are right about surrounding yourself with positive people. Being negative serves no purpose. We have just one life and I think we should be allowed to live through it in happiness. I do not think that this one life should be one of stress and worry, but it seems to be like that for all but the rich and privileged.
I do hope you and your daughter have an enjoyable time in Dubai.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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