Calling all triple negative breast cancer patients in the UK
Comments
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Hi to everyone! I hope you are all doing well. I wanted to say hello and apologize for introducing myself here and then going AWOL. Sylvia was so kind to invite me and my posting and participation here on BCO has been very sporadic. I've had a lot going on--some good and some bad--and haven't been able to keep up as much as I'd like. I hope all of you lovely ladies are doing great.
Warm Regards,
Betty
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Hello LintRollerDerby (Betty),
Thank you for your post. It was so nice to hear from you. Please do not aplogise for not posting. Just post or view as you feel you can or as you want to. The forum must not become a chore or a source of stress. It is here to help and support you, to relate our own experiences and to provide information.
We are here to help you, Betty, so if you want to let us know what has been happening with you, please do. We love to hear good news and can sympathise with bad news.
Take care of yourself and come and go as you please. Remember that whatever is happening keep looking forward.
Warm thoughts are coming your way.
Sylvia.
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Hello christina1961
I was so sorry to read that your mother in law had died from complications from pneumonia. I can tell from your posts how much you thought of her and I just wanted to say that I am thinking of you. I remember your saying she had been diagnosed two weeks ago with lung cancer and had not even started treatment. This is a difficult time for you.I think that we all know that we cannot take life for granted and that we must make the most of each day because there is no guarantee of a tomorrow. I think a diagnosis of breast cancer teaches all of us women a lesson. We must not dwell too much on before and after diagnosis. Our treatment may have been harsh on our bodies, but it has kept us alive.
Keep looking forward and enjoy every day to the full.
Best wishes
Sylvia0 -
Hello bak94
I was so sorry to read that you are still having a difficult time. I can imagine how you feel having those drains back. I do hope you will soon be free of them and that you will soon be able to say that my treatment is behind me and I am problem free.If I remember correctly, you work in hairdressing or colouring. I should imagine that is quite a physically demanding job, especially on the arms and I know that you do have to be careful with the arms, especially after surgery, for quite some time. Even now, nearly seven years on, I am very careful with my right arm after a mastectomy of the right breast. Sometimes my arm can feel heavy, and I still do some manual massage on this arm, either with my hand or using a special round brush that I bought from the pharmacy. It is called a detox brush, but it is used for manual lymph moving to try to keep the damaged lymph on the move. I do upward strokes from the back of the hand up to the shoulder and then I go in forward strokes across the breast area. I also do arm raising exercises. I think that after treatment it is always a good idea to request some physiotherapy sessions at the hospital and/or a few sessions at the lymphoedema clinic.
I hope that you manage to rest your arms during your days off.
Thinking of you. All the best.
Sylvia0 -
Hello mccrimmon324
I was sorry to read that your RBC was lower than usual and I do hope it will normalise in due course.I noticed that you said you are taking aspirin every day and I wondered whether you were taking the low dose, which is about 75 mg and which I understand is of the non-soluble kind. Are you taking this under the supervision of your doctor? There is a lot of discussion here in the UK about taking aspirin as a preventive against things such as cancer. I think it is quite controversial. You have to remember that aspirin acts as a blood thinner. Perhaps you should ask your doctor if it would affect your RBC.
I hope you are having a relaxing weekend.
Take care and remember you have only recently finished treatment.
Best wishes
Sylvia0 -
Hello everyone
Just wanted to let you know that I am thinking of all of you.Yesterday I received the news that my last remaining uncle, on my mother's side, at the grand old age of 91, who had been in hospital for over a week, was diagnosed with asbestosis (mesothelioma), a form of lung cancer. He had been taken into hospital because of fluid build up in the lungs and has been on drains. Apparently he has not long to live. I felt very sad because he was the longest lived of a family of nine brothers and sisters, seven brothers and two sisters, of whom my mother was one. When this uncle goes, the only remaining relative will be the wife of one of the brothers.
This morning I have been contacting all of my cousins, the children of those nine brothers and sisters, to let them know what is going on. I seem to be the one that has been appointed to take on this role. I suppose part of it is that I am the one cousin that knows all the other cousins. The past few years have been terrible for the family.
What worries me is that four of the seven brothers were all afflicted by cancer, two with lung cancer, one with metastatic prostate cancer and one with metastatic throat cancer. Their mother, my maternal grandmother, died of metastatic breast cancer in her seventies. I related all of this to my hospital, but I still did not qualify for genetic testing. I was told that my grandmother and I developed cancer too late in life for it to be genetic. I was told that my cancer was just a rogue occurrence. Of course, what I will never know, is what the hormonal status of my grandmother's cancer was. Of my cousins, I am the only one so far to have been diagnosed with breast cancer.
I feel quite sad today because I thought my last uncle, who had never been ill, would live on and die of old age. I know he wanted to live to 100, so that he could get his telegram from the Queen.
We have been having some well needed rain today in the south-west. The south of England is in drought conditions and hosepipe bans have already been implemented in the south-east. I am expecting the same ban to come into effect in the south-west next week.
I have been meaning to tell you to read a book or books by Jane Tomlinson. I started to read them when I was first diagnosed. They relate her experiences with breast cancer which started when she was in her twenties. She survived for a very long time, even when her cancer was metastatic. She did a lot of running to raise money for cancer and awareness of it. I found the books truly inspirational.
That is about all for today. I am thinking of you all, wherever you are and sending warm thoughts your way.
Sylvia0 -
Hello everyone again
The titles of the Jane Tomlinson books are:The Luxury of Time
You Can't Take it with You
How Good is That?: The Story of a Reluctant Heroine
Best wishes
Sylvia0 -
sylvia, so sorry to hear the sad news about your uncle.
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Hello BernieEllen,
Thank you for your kind words. They are much appreciated. I do hope all is well with you. What kind of a week have you had? What are you reading these days?
It has been a strange day for me today. I have had all sorts of thoughts racing through my head about life and people. I have started reading four different books, but today I did not feel like reading any of them. I have had some pleasant talks with some of my cousins on the phone.
I hope you are having a good weekend. Do you have your husband at home for company?
Thinking of you,
Best Wishes,
Sylvia.
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Hi Sylvia i haven't read the posts yet! I will do though!
I am having exactly the same treatment as you...on the chemo side of it..4 of each...I start on Tuesday as an emergency...as there has been errors made since November...
I am also Metaplasic with Spindle cell..i'm not a youngster..and have other health problems too!
From reading your opening post ..you seem to have done very well? I will have to read the rest too!
Did you have a masectomy ? i will be at the end of 6 months of the chemo...then rads?
What is adujvant chemo please? is it a bit kinder than some?
Dulcie xxx
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Hi Sylvia,
Thank you for your always kind and welcoming words. I am so very sorry to hear of your uncle's illness. Please know that I am thinking of you and wishing you strength and peace.
Best,
Betty
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Hi Sylvia
Sorry to hear about your uncle I hope that the chats with your cousins are bringing you many happy memories. It's so hard to concentrate on reading when you have things in your head, that's when I turn to magazines or my cookbooks.
Sending thoughts to you and your family
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Hello Dulcie
Thank you for your post. It is nice to be in touch a fellow Brit.When you can, start reading our thread from the beginning, at your leisure, as it has everything in it about going through breast cancer treatment. We have some wonderful and well informed ladies on this thread who have only just recently finished treatment and I am sure they will support you, as it is still very fresh in their minds.
I shall be thinking of you tomorrow as you start your chemotherapy treatment. Please do not be afraid. You will get through this as we have all done. Just take things very calmly, drink plenty of water, get plenty of rest and keep looking ahead.
Like me, you appear to be having your chemotherapy before surgery and this is called neoadjuvant chemotherapy. Adjuvant chemotherapy is when you have your treatment after surgery. You do not give any details about your hormonal status. Have you been told that you are oestrogen negative, progesterone negative and HER2 negative? Do you know the size of your tumour, the stage of your breast cancer and the grade? I ask this because usually chemotherapy is done first when the tumour is large, to help shrink it before surgery. I think nowadays chemotherapy may be given first, even for smaller tumours. Triple negative tumours are usually grade 3.
You should also know what chemotherapy drugs you are being given. I was told what I was going to have by my oncologist before I started treatment. I had three months of epirubicin and cyclophosphomide every three weeks and then three months of docetaxel (Taxotere) every three weeks. It did shrink my large tumour somewhat.
About five weeks after finishing chemotherapy I had a mastectomy of the right breast and seven lymph nodes removed, only one of which, the first node, the sentinel node, was positive.
When I had recovered from surgery I had three weeks of radiotherapy with boosters, from which I recovered very quickly.
Take one step at a time. The six months of chemotherapy is the longest of the treatment. I am assuming you have had the usual scans before chemotherapy starts. These can be rather daunting, but you have to take them in your stride. You will probably have had a fine needle aspiration to confirm the diagnosis. You will also have had a biopsy and an ultrasound, as well as a CAT scan and a bone nucleide scan. These are all very useful so that your medical team and you know what is happening.
Did you discover your lump or was it found on a mammogram?
I have heard of metaplastic breast cancer. Can you give us more details about this? I do not know anything about Spindle cell. If you have any information about this please let us know, because we are all on a learning experience on this thread.
I was sorry to hear that you have other health problems as well. Is there anything you would like to share with us?
You say that you are not a youngster. We are all different ages on this thread, so do not be shy about telling us your age. The experts tell us that triple negative breast cancer affects mainly younger women, but, obviously older women are not immune.
I am sure everybody on this thread would like to welcome you and we shall certainly support you. None of us wanted to be here, but here we are!
Make sure you get all dental work sorted out before chemotherapy, as you will not be able to have it during your chemotherapy treatment. My oncologist also told me to have a flu injection and a pneumonia injection before treatment. You will need to take great care of yourself as the breast cancer treatment will weaken your immune system and make you susceptible to infections. I was told to avoid crowded places and anyone with anything infectious. If you have the kind of drugs I had you will a wig as your hair will start to fall out after the first treatment.
Wishing you well and sending warm thoughts as you begin treatment tomorrow.
Sylvia0 -
Hello LintRollerDerby (Betty) and linali (Lindsay)
Thank you both for your very kind words. They are most appreciated.I shall do some longer posts later on today, as I have been very busy this morning.
Thinking of both of you.
Sylvia0 -
Hello LintRollerDerby (Betty)
I was just wondering how everything is progressing for you. I noticed that it will soon be a year since your diagnosis. We shall all be thinking of you on May 11th 2012. Have you been fine since you finished treatment? Have you had any problems? I do hope all is well and that you are living your life normally and doing what we call moving on.Take care. Best wishes
Sylvia0 -
Hello linali (Lindsay)
It was nice to hear from you. I noticed that you are not that far off from two years since diagnosis. I was wondering how you think you are coping in general. I know that you enjoy the centre that you go to, so I hope that is a very big help in moving on.It is good that you have a way to "chill out" when you feel you cannot concentrate on reading. Magazines and cookbooks sound very therapeutic.
Look after yourself, try not to worry too much and enjoy the company of your grandson as much as possible.
Best wishes
Sylvia0 -
Hello Karen_Sheffield
I do hope all is well with you and look forward to hearing from you sometime.Best wishes
Sylvia0 -
Hello Dulcie again
I have been reading some of your posts on other threads as I like to get my facts straight. It seems as though you have been having a rather frustrating and unsettling time at your hospital. It seems as though there has been unnecessary delay between your diagnosis and the start of your treatment. It also looks as though there has been carelessness with your pathology report. I do hope this has all been sorted out. It is bad enough to get a diagnosis of breast cancer and it does leave you in shock, so that you need everything to run smoothly and you can concentrate on getting yourself through treatment. I do hope that everything will be straightforward for you now as you settle down to six months of chemotherapy.You can get cool caps to wear at the chemotherapy clinic during treatment. It is apparently very cold and challenging but is supposed to avoid hair loss. My own oncologist was against them when I was diagnosed and said something about the risk of infection. It is good to know it is an option, because hair loss is often the worst aspect of breast cancer treatment.
It is as well to put yourself in charge of your treatment and keep a check on everything. Hospitals are busy places so it is easy for them to forget things and make human errors.
If you have any other friends with breast cancer, of whatever kind, and are in need of support, they are welcome on this thread.
I hope all this helps you.
Best wishes
Sylvia0 -
Hello everyone
I am still trying to post snippets of information from the long section on breast cancer in icon magazine, volume 9 issue 4, pages 46 to 49 inclusive and the short articles are numbered 1 through 30 inclusive. I shall have to check back later to see which ones I have already mentioned. The ones that have caught my eye today are the ones about eating red meat and eating dairy food from cows. Briefly, the article says that "Eating red meat is linked with a threefold increased risk in breast cancer, possibly due to the animals own hormones, or the pesticides from the fields it grazed in". "Research in icon concluded that red meat eating caused cellular inflammation - the precursor of many cancers". There are more details if you take the time to read the article.I suppose if you eat meat it should be organic. If you do not eat meat I suppose you could take a supplement of B12. You can, of course, get B12 from organic eggs and fish.
As for cows dairy, the Karolinska Institute has shown that the more cows dairy you consume the greater the risk of breast cancer. I think a lot of us on this thread are already aware of this. The reason is primarily the hormone IGF-1 in the milk, which makes human cells grow divide rapidly.
This article says that you can get all the calcium you need from a good helping of green vegetables everyday. I think that there is disagreement about this, with some saying that we cannot absorb this type of calcium easily. I tend to get my calcium from fresh, enriched, unsweetened soya milk, nuts and seeds and a little organic goats cheese. I do know that I have read many articles which say that we cannot absorb calcium carbonate supplements.
That is enough for today. Thinking of you all.
Sylvia0 -
Hi to all, sorry I haven't been posting lately but I had the flu
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Hello Bernie
You poor thing. I hope it was not like the bug I had.
Keep smiling.
Best wishes
Sylvia
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Sylvia thank you for replying to me!
Yes you are right ..things have gone badly for me from the start...but i think some other ladies have had very late diagnoses too! Which is bad news with this type of cancer..
I will be having eight chemos then a masectomy and tonight ..i have found a brilliant surgeon that i will approach to hopefully do surgery....
Yes the red meat ..i dont eat it only the white..i lost a dear friend not long ago ..and his whole diet consisted of red meat nearly every day!
I have noticed quite a lot of ladies including myself..have gall bladder problems...i wonder if there is a connection ...for some of us?
Best Wishes
Dulcie xx
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Hi, Sylvia!
Thank you! You are so sweet! I do hope things are better for you. You're in my thoughts and please let me know if I can help you get through this.
Yes, my one year anniversary of diagnosis is coming up. I'm honestly a bit nervous about it because I feel like I'm holding my breath for the next few years until the statistics are better. I've had prolonged pain from chemo--I'm one of the unlucky ones in that regard, so I'm dealing with that. I convinced my GP to put me on Metformin since I have PCOS, but mainly because I am hopeful about its use in BC in general and TN in particular. So far, it has helped to alleviate some of the PCOS symptoms, so at least it's helping that way.
I hope you have a lovely week!
Warm Regards,
Betty
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Hello Dulcie
Thank you for your post. Try not to worry too much about your late diagnosis with TNBC. I delayed my own treatment for about four months, because I did not really have faith in conventional treatment and I consulted a private doctor and an NHS homoeopathic doctor, not to mention a quite well known herbalist and took astragalus powder and wormwood supplements before I decided I had no choice but to go for conventional treatment. My medical team at the NHS hospital did not push me into a decision and in fact one of my consultants referred me to the homoeopathic doctor, who started me on immune boosting medication straight away. Both the private doctor and the homoeopathic doctor told me that I could use them as adjuncts, but advised conventional treatment. Once I had made up my mind I went through chemotherapy, surgery and radiotherapy with very few problems. I kept on different homoeopathic treatments through each stage of my cancer treatment as advised by my doctor, and in fact took oral Iscador for many years with just a few breaks.I would not advise anyone to delay treatment for too long. My tumour was large and the cancer did in fact break through the skin of my breast. The conventional treatment worked very effectively and I am still here to tell the tale. When I was first diagnosed, I did not think that I would survive. Remember that chemotherapy works very well for triple negative breast cancer. Today you would have had your first chemotherapy treatment, so I hope you are not feeling too bad. You should feel better as the days pass.
You mentioned gall bladder problems in your post. This seems to be another common problem in the western world. I am no doctor but I think it is probably due to our western diet of too much fat and too many animal products. Why not Google "gall bladder and cancer" and see what comes up.
Thinking of you. Best wishes.
Sylvia0 -
Hello LintRollerDerby (Betty)
Thank you for your very kind words.I do hope you will do something special for your anniversary.
I was wondering what kind of prolonged pain you have had from your chemotherapy treatment. I know that you can have neuropathy in the feet or hands, but it is not exactly pain. It is rather a strange feeling of tightness and as though you are walking on rough screwed up paper. Can your consultants not offer you any help with this pain?
I was sorry to hear that you suffer from PCOS. I know that metformin is used for this. I was glad to know that the metformin has helped with some of the symptoms with PCOS. Does this condition cause you a lot of problems? It will be interesting, when we get some statistics, to know whether metformin is useful in the prevention or treatment of breast cancer and TNBC in particular.
I can imagine it must be getting very hot in your neck of the woods. Do you like the sun? Are you taking vitamin D as it is getting a lot of publicity with reference to deficiency of it being connected to the development of cancer, including breast cancer. I would imagine you can get enough of it from the sun in Florida.
Wishing you well.
Sylvia0 -
Hello everyone
I have at last found time to look back at some of my posts to sort out what I have posted from icon magazine. There is so much information in this first edition of icon for 2012. In case you want to read it I am posting the pages. I have taken some information from pages 22 to 32 inclusive. These pages come under the heading "CANCER WATCH -The latest cancer research from around the world". Under this heading I have posted information about Hyperthermia breakthrough treatment for breast cancer, Radiotherapy damage may be prevented by flaxseed, Radiotherapy damage can be lessened by taking probiotics. These three are on pages 22 and 23. On page 28 there was the good news about blueberries, under the title Blueberries can stop breast cancer tumour growth. You will remember that it said that blueberry powder had been found to be very effective in reducing the growth and metastases of a very aggressive form of breast cancer known as TNBC.I did ask whether anyone was taking blueberry powder, but no one answered my question. I know a lot of us must be eating blueberries. I Googled blueberry powder but found it very expensive.
The other information I have posted is BREAST CANCER Hot topics, cool thinking. They go from page 46 to 50 inclusive and the short articles are numbered 1 to 30. I have just posted number 6 and 7. 6 is about red meat and 7 is about cows dairy.
As you can see, there is a huge amount of information in this magazine and it will take some time to cover all of this. If you can, try to read it for yourselves. I cannot think of any other magazine that has so much useful information.
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Hi Sylvia thank you for your reply....i wonder if you can answer a couple of questions for me please? I think i said i am Metaplastic? Is it a bad thing to have been taking evening primrose capsules...as they apparently have estrogen in them..which is a no no! Also one of the other chemo ladies takes an echinaecca (sp) organic drops ..every day....i have stopped the evening primrose...but curious about the other...i am open to anything that helps....
I have been totally 'spaced out' since they put the stuff into me...and nobody told me i would not be able to sleep ..re the steroids...
Take care
Dulcie xx
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Hi Sylvia and hello Dulcie,
The steroids made me VERY hyper..I was manic for the 3 days I was on them, cooking, cleaning, acing about, and then fell into a slump when their effects were wearing off.
I'm interested in your saying that estrogen is a no no... since we are triple negative, and therefore NOT receptive to estrogen, why should it be dangerous? In fact, for about a year I've been taking Flax, good for all sorts of things including omega 3, (first seeds, at the moment sprouted flax powder), and have recently read that since it contains phyto-estrogens it mightn't be a good idea for bc patients and to take something called chia (had never heard of it!) as an alternative. I was interested to see , Sylvia, that you mention flax above to help with SEs for radiotherapy... I've been thinking of asking members on the flax thread what the general rule is regarding TN women and estrogen...any idea Sylvia?It seems to me that there is a lot of specualtion out there, andvery little solid evidence for most things...it's reallyhard to decide whether to take any form of supplements or not, as it's guaranteed that the moment you start on anything you come across literature saying it's harmful...
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me again...having re-read your post, Dulcie, I think it probably isn't a good idea to take anything much while you are going through chemo.
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Hello Dulcie
Thank you for your post.You did mention that you had metaplastic breast cancer. I do not know a lot about this, except that it is quite rare and affects about 5% of patients. I think it is usually invasive ductal carcinoma, as are the majority of breast cancers, and can have negative or positive receptor status. If I understand correctly, metaplastic cancer is distinguished by having cells in the breast that are not usually found there, such as skin cells or bone cells. You should ask your oncologist to explain all this to you. It looks as though the treatment on offer is standard with chemotherapy, surgery and radiotherapy if triple negative, and probably Tamoxifen if hormonal and Herceptin if HER2+. Things do progress with breast cancer, if slowly, so perhaps you should ask your oncologist whether there are any specially targeted treatments for metaplastic breast cancer.
As I have said before, I am not a doctor, so I cannot say whether taking evening primrose capsules are good or bad for you. I know that in the past there was a lot of publicity about the benefits of evening primrose oil for women going through menopause. I thought the benefits were connected to the GLA contents of the oil (gamma linolenic acid). Apparently this oil has anti-inflammatory properties. A better source of this oil is borage oil or black currant oil. I think it is supposed to be beneficial for arthritis, especially when taken with fish oils. What are you taking it for? Are you taking it as a possible anti-cancer supplement? Cancer is all to do, I think, with inflammation in the body. I do not believe in any magic bullets.
If I were you, while going through chemotherapy, I would check out everything with your oncologist.
You mentioned that someone else going through chemotherapy is taking echinacea drops. Do you know why she is taking this? I thought that echinacea was good to take when you have colds or flu. I have taken the drops in the past, and strangely enough, have just finished taking a course of it to help get back to normal after that nasty viral infection I had. I find that it energises me. I have taken the supplements in the past, but found they did not have the same effect as the tincture in a little water. Apparently you should not take echinacea for more than eight weeks at a time before giving it a rest. I suppose the lady in question is probably taking echinacea while on chemotherapy to boost the immune system, but, if I were her, I would check this out with the oncologist. I have read that echinacea can reduce the effectiveness of immunosuppresant drugs. Chemotherapy drugs are immunosuppresant drugs. I do not know if there is any research to back this up. I think you have to be very careful on these threads not to follow automatically what other patients are doing. Do not take anything without checking it out with your medical team. I know this can sometimes be difficult because orthodox doctors seem to rely entirely on drugs and not to have much faith in supplements, herbs and alternative treatments. All you can do is consult them and then make up your own mind. This is what I did. I took pycnogenol during all my treatment. It is an immune booster made from the maritime pine bark and available as a supplement. I took it, because my consultant surgeon told me that it was being used to treat cancer patients at the Penny Brohn Centre in Bristol. This quite a well known place. My consultant surgeon seemed to be very different. She did refer some of her patients to the Royal Homoeopathic hospital in Bristol. She did refer me at my request. The consultant there was quite well known and used to be a cancer doctor. On her advice I took oral Iscador all through my treatment and afterwards. It is strange that orthodox doctors do not seem to have much faith in these treatments, but a drug such as docetaxel (Taxotere) comes from willow bark!
I hope you will soon be feeling better. Usually you take the steroids only for two or three days. They did not seem to affect me, but I know from a cousin of mine that they make you feel energised but somewhat on edge.
Wishing you well.
Sylvia0
