Calling all triple negative breast cancer patients in the UK
Comments
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Hello Bak94,
I was so glad to know that your surgery is now behind you and that everything looks good. You must be so relieved and happy. I hope everything will be fine with the pathology report. It looks as though it should be. Look after yourself through your recovery. I hope it will not be long before you are back home.
I look forward to learning more about tomotherapy./
Best wishes,
Sylvia.
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Hello mccrimmon 324,
Thank you for your post. Tylenol is paracetamol over here and is a very popular painkiller at home and in the hospital. We are always told never to take aspirin on an empty stomach because it can cause stomach problems, so eating before is a good idea.
You mentioned that you suffer from anxiety and I know how wearing that can be. I am also a worrier and I went through hell in my mind when I was first diagnosed. Do you do anything to help you relax?
Best wishes
Sylvia.
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Hello everyone
I am posting a few more snippets of information that I have found this week in the newspapers.An article caught my eye about male breast cancer. The man in this case was only 37 and there was no family history. Apparently 300 men in the UK develop breast cancer every year. These men are usually over the age of sixty and a family history of breast cancer and being obese are risk factors. The interesting thing is that the family history of breast cancer can be male or female.
The man concerned noticed that he had a sore on the nipple of his breast that would not heal. He saw a consultant breast surgeon and had an ultrasound and a biopsy. He was later diagnosed with breast cancer.
I was interested to read that the type of breast cancer he had was the very early form known DCIS (ductal carcinoma in situ). It stated that although these breast cells are cancerous, they are described by doctors as pre-cancerous because they are contained within the duct and have not started spreading.
I learned from this article that male and female breast cancer - including DCIS - are exactly the same. Besides finding breast lumps, men and women can have symptoms such as nipple discharge, change in the size or shape of one or both nipples, or persistent swelling of underarm glands. In the case of this man, nothing showed up on the ultrasound, because a lump had not yet formed.
I found all this interesting because someone I know insists that DCIS is not cancer, because cancer by definition means something that will spread to another part of the body. It is stated, however, that it will become cancerous if not treated. The DCIS was treated with a mastectomy and most male breast cancers are treated in this way because there is less tissue in the breast area. In this particular case there was no need for chemotherapy or radiotherapy. The emotional toll was very great.
I find it of concern that there appears to be an increasing trend towards men developing DCIS. It could be that men are becoming less embarrassed to talk about breast cancer and are going to see their doctors when they feel concerned.
Having read all this I got to thinking that if male and female breast cancer is the same then it must mean that there are hormonal and non-hormonal breast cancers in men. Naturally, I started wondering about how many men get TNBC and why.
Do any of you know of men with breast cancer?
That is all for now. Best wishes
Sylvia0 -
Hello everyone
I had to look up the research about male breast cancer. I found a site which gives some information and statistics. Everything appears to be the same in men as in women and they can have the same receptor status. ER+, PR+, HER2+ or a combination of these. I was interested to discover that about 14% of men are diagnosed with TNBC. Once more, there is the same doom and gloom about TNBC which I have grown to ignore.
I did read not so long ago that Tamoxifen did not work for men.
If you are interested the link is:
http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=70&abstractID=40122
Best wishes
Sylvia
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Hello everyone
I thought you would like to know that I was listening to BBC Radio 4 this morning, as I usually do, when I heard mention of a book that had just won the Guardian First Book Award. The title of the book was The Emperor of all Maladies, a biography of cancer. I hope that rings a bell in all of you reading this thread. I mentioned it some months ago on the thread when I read the book and was really impressed with it. I remember Maria_Malta posting to say that she was reading it.I am thrilled to know that the author, an oncologist, has won this prestigious £10,000 award and that he beat out three short-listed novels to do this. If you want to read more about all this the link is:
http://www.guardian.co.uk/books/2011/dec/01/biography-cancer-guardian-first-book-award
On the radio this morning there was an actual interview with the author and I found this very interesting. I have been trying to find out is there is a podcast of this interview, but so far have been unsuccessful.
In the Guardian article it mentions that this book has already won a Pulitzer prize. I understand that the author is writing a second book.
What I picked up from the interview was that the author mentioned how close to normal cells cancer cells are. And how they are part of our genes. He mentioned about how everything with cancer seems to be about the switching on and of of genes. That is how I interpreted it.
It is Friday again and I hope it has been a good and progressive week for all concerned.
I hope you will all have a good weekend and remember that you can post about anything that is on your mind or tell us about anything interesting or exciting you may be doing this weekend. Is Christmas a big thing for you?
Best wishes to everyone.
Sylvia0 -
Firstly Bak great to hear you have had op and are well enough to write in..also great preliminary news about the nodes..
Sylvia, thanks for all info as usual. I'm not sure that tomo therapy is offered here in Malta, and I'm certain I'm not having it...incidentally I'm STILL waiting to start radio...and getting increasingly impatient.
Trouble is there is only one hospital to go to for this on the whole island so you can imagine the waiting list. Like you I'm not having more than 3 weeks of radiation, and quite relieved to be doing it, although my neo adjuvant chemo apparently wiped out all evidence of cancer cells in breast and lymph nodes...of 7 nodes all were clear, except that one showed signs of scarring, ie potentially there were some cancer cells there which were also wiped out by chemo. I think Sylvia and I have a pretty similar history and treatment. I know that my oncologist doesn't like the idea of having 'unnecessary' scans, and I suspect for the firstyear will see me every 3 months to examine me manually, but not recommend anything else..not quite sure how i feel about this, but will obviously wait until I see him again after radiotherapy.I know that dye isn't recommended so soon after bc and chemo, and have no intention of using anything for a long time yet...just wondered about it for the long term. My hair is now very white and I'm not yet sure how I feel about the way I now look.
The Emperor of all Maladies is a totally brilliant book.. if you google the author's name (can't remember his name off hand) you will find a couple of interviews ..he is intelligent, interesting and humane..I'm very glad book has won 2 awards. It really deserves it.
Hope you all have a good weekend, Bak is comfortable, Mccrimmon serene, Christina not too tired with chemo...
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Hello Maria_Malta
Thank you for your interesting post. I do not know whether tomo therapy is offered here in the UK either. I was not told what kind of radiotherapy I was having and was certainly not offered a choice, but I have to remember that was sometime ago now. All I know is that it was called external beam radiotherapy. Since then I have heard proton radiation mentioned and reading another thread someone apparently had a mixture of proton beams and electron beams. I shall try to sort all this out when I can, because in the UK we do not seem to be on the same level as in the US. I am not sure what goes on in Europe but I would think it is a mixture in the different countries of Europe. If anyone has any information, please post.I was sorry to hear that you have not yet started radiotherapy and I know how frustrating it must be. I did put the cursor over your frown smiley and heard your YELL all the way from Malta! I think we all play the waiting game in our treatment. I started my chemotherapy in November 2005 and went through it all smoothly, every three weeks, until April 28th 2006. I then had surgery on May 17th 2006 and a port was installed at the same time, because it was thought I might need more chemotherapy after surgery or later. I did not start my three weeks of radiotherapy until late June. Hang in there Maria.
I do think radiotherapy is important because it will mop up any stray invisible cancer cells. I would not like to have too much of it as we all know that radiation causes cancer and I feel that too many weeks of it may be counter-productive. It is only my own opinion but I do feel that perhaps the very treatment that has kept us alive might well be the cause of recurrence and metastases. Remember what Siddhartha Mukherjee said about what a lot of the chemotherapy drugs are made of, nitrogen mustard, the same stuff that was used for bombs in the first world war. Apparently that is where the idea came from. It is no wonder it is so lethal on the immune system!
I think your oncologist is probably right about unnecessary scans. I had scans before and after treatment and that was it. We have to remember that all these scans subject us to radiation and probably quite a lot of it. My dentist told me there is quite a lot of radiation in chest X-rays. I had to have a dental X-ray this week and he assured me that the radiation level was low and no more than I would be exposed to in four hours in the natural environment.
Wait until the end of radiotherapy and see what you are offered. After treatment just be vigilant about doing your monthly breast examinations and watching for any unusual signs as you go over the area where you had surgery and of course look for any sign of a rash.
Did the chemotherapy turn your hair white? It takes a long time for the hair to recover and we just have to be patient. I lost all my eyebrows and eyelashes after the Taxotere and I hated the way I looked. The eyebrows have grown back but are not quite the same. The eyelashes have grown back but they are very delicate. I am not a great one for make up but I did like to use a bit of mascara. I find it difficult to do that now, as the eyelashes are too delicate and the mascara tends to irritate my eyes. Somewhere I think I read that Taxotere is hard on the eyes.
I did go to the Guardian link and listened to an interview with our much admired author. I found it most impressive. There are interviews with all five authors short listed for the New Author award.
That is all for now as I have to go out. Have a good weekend.
Sylvia0 -
Hello christina1961
I was sorry to read that your white blood counts are low and that you are anaemic. This must be making you feel very tired. Have they suggested giving you anything to bring the count up and to help with the anaemia?I do hope you will have a very restful weekend.
When will your treatment finish?
Best wishes
Sylvia0 -
Hello Maria_Malta
I forgot to say that what I do believe in is having regular blood tests to look for cancer markers. I cannot understand why this is not done more often. Surely this is a cheaper and less dangerous way to keep a check on what is going on in a person's body. All kinds of blood tests are used by our GPs and consultants to check for many things, so why not for cancer? I am not a doctor, but I have never been able to understand why my oncologist, when I asked about blood tests, said that they were only good for the day on which they were taken. Surely that applies to all blood tests!With reference to Siddartha Mukherjee, apparently he does not think that we can eliminate cancer from the body in the same way that we have eliminated something like polio. Cancer is part of our growth genes and these are a natural part of us. I think I have understood that correctly.
Do you think you will read the other books that were short-listed for the New Book Award? They were all novels. Stephen Kelman, Pigeon English, Juan Pablo Villalobos, Down the Rabbit Hole, Mirza Waheed, The Collaborators, and Amy Waldman, The Submission.
I think I might look them up some time later, although I do not read many novels these days. I am busy reading a non-fiction book by Jeremy Paxman entitled Empire, What Ruling the World did to the British.
Do you get much UK television?
Best wishes
Sylvia0 -
Here is a link to the center I would be going to if I do the tomotherapy. You might have to copy and paste it.
http://www.swedish.org/Services/Cancer-Institute/Services/Radiation-Therapy/Tomotherapy
And more info:
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BAK - glad to hear your surgery went well. I've been skimming the posts since we have a friend down on vacation. I don't know if your home from the hospital and I think I remember reading you had complete response to chemo. Congrats!
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Hello bak94
Thank you for your post and thank you for the two links which I have just looked at. I can see why you would be considering tomotherapy rather than going through the external beam radiotherapy that I had back in 2006. This tomotherapy would appear to be much more accurate and much more targeted so it does not damage healthy cells so much. I shall be very curious to find out what goes on with tomotherapy in the UK. I was surprised to find that it has been in use since the early 1990s and that there quite a lot of centres in the US.Do you think that tomotherapy is becoming standard practice in the US? If anyone has up to date information about tomotherapy in the UK or Europe please let us know.
Maria, I am wondering what you think about it. Is it available in Malta?
These threads are so important because we are picking up all sorts of information every day and it is important to post and let everyone know so that they can get the best treatment.
At the large hospital in Exeter where I go I have just been informed by a former neighbour that they do not have a PET scan and that you have to go to Taunton in Somerset for this scan. I do wonder whether this country will ever be truly up to the mark in the treatment of cancer. I have seen many references to PET scans from the US ladies on the forum, but the scan was new to me. I only knew about CAT scans, MRI scans and bone nucleide scans.
I hope you are doing well and am wondering whether you are now back home and how you are feeling.
Best wishes
Sylvia0 -
Thank you, Sylvia. I am having a rather hard time keeping my spirits up right now and I think it might be from the anemia and also stress at home. I am very tired and my white counts are low enough to cause me to be in the "precautionery range." I have to avoid people and grocery shopping, etc.. I have a cleaning frenzy planned for the day after chemo because my counts should be back up and I shouldn't feel too bad until that evening. I can't have Neulasta injections for the white counts during the trial and they haven't mentioned any treatment for the anemia. I have a wonderful trial nurse whom I see each week so I'm sure she would have brought up a solution if I could benefit from it at this point. I did walk 2 miles today- first time in a while. I hope to go again tomorrow. I do have to do some work due to a computer problem I had Friday afternoon.
BAK, congratulations on the complete response!! That is absolutely wonderful! Maria, I'm glad to hear you had a PCR also! I'm not sure about my hair either - I had colored it for years but it seems grayer than I thought it would have been. My eyebrows are falling out again from the new chemo but my hair seems to be ok.
I have the Emperor of All Maladies on my bedside table but haven't started it yet - I believe I may read it next instead of the Social Animal.
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I am not 100 percent sure on the complete response yet, just the initial report on the nodes and breast were good, I get the final word on Tuesday, so fingers crossed! They sent me home on Thursday, the day after surgery. Feeling ok, a bit tight like everyone seems to say. Trying not to take to much pain medicine, sleeping alot but managing a short walk everyday. I can shower which is good. I only have a plastic tape dressing which will be taken off on tues. He then says just to keep a clean t shirt on in between my skin and camisole, so no tape or anything, he doesn't like that stuff, says it causes other issues.
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Hello Christin1961,
I was sorry to read that you have been feeling so tired and exhausted and I do hope that things will improve for you. Try to get as much sleep and rest as you can. It is the best thing for reviving you and helping the immune system. Go easy on the housework even when you feel better. You need all your strength to fight tht poisons going into your body.
There must be something that can be done to help build up your white blood cell count. I think it is prudent to avoid crowds during chemotherapy as it is so easy to pick up something.
Best wishes,
Sylvia
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Hello again Christina1961,
I am sure you will find The Emperor of all Maladies totally fascinating. I just could not get into The Social Animal.
I was sorry to learn that the chemotherapy had caused the loss of your eyebrows. Was this new drug supposed to cause hair loss?
How many more treatments do you have to go through?
Best wishes
Sylvia.
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Hell bak94,
I was so glad to know that you were allowed home the day after surgery.It is amazing how quickly they send you home from hospital these days. I am sure you recover better at home. The drains are annoying but you will soon be free of them.
We shall all be thinking of you tomorrow and keeping our fingers crossed that all is still well.
I admire you so much doing this all over again. I hope you are giving yourself some well deserved treats.
Best wishes
Sylvia
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Hello Bernie Ellen,
I do hope you will have a good week. I think that aches and pains keep with us after our breast cancer treatment, but we learn to live with them. I know my own body has never felt quite the same since I had my treatment, but there is not much that can be done. Your treatment is so recent that your body has barely begun to recover. Give it time. Is your husband away with his work?
Hang in there.
Best wishes,
Sylvia.
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Hello mcrimmon324(Heather)
I was sorry to learn that you are so full of aches and pains and that you feel as though you have aged thirty years! I am sure that you look just fine. You are getting towards the end of your treatment so you will be feeling worn out and not looking your best. You will gradually start to pick up as soon as your treatment is finished. I know it is not easy but you will need a lot of patience. We become so focused on ourselves and cannot help studying every minutedetail about hair growth, eye lashes, eyebrows and so on. We are so anxious and impatient to become normal again. It will happen, but it is a long,slow journey of recovery , both physically and emotionally. Focus on other things and other people.
Keep looking on the bright side and shrug off anything on the forum that frightens or upsets you. Your husband was right about that. We do not hear from all of those that have put breast cancer out of their mind.
Keep looking forward with optimism.
Fond thoughts are coming your way from all of us.
Sylvia
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Sylvia,
Thank you for your reply. I read that 45% of the patients in one of the trials with eribulin had hair loss. I need to find some grey colored eyebrow powder to go with my hair on my head!
I've been avoiding all crowds. It is hard because my diet has become restricted as a result. I have to depend upon others to shop for me right now. I have 8 more infusions (four cycles) left.
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Hello Maria Malta,
I hope you are starting off the week in good spirits,and that you had a good weekend.I would love to hear a bit about life in Malta. England is so dismal at this time of year. You feel you want to run away.
Best wishes, Sylvia.
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Hello christina1961
Thank you for your post. I was very interested to know that only 45% of the patients in one of the eribulin trials experienced hair loss. I wonder why it affects some and not others? Do the experts have any explanation for this?I am glad to know that you have a good sense of humour. Good luck on your search for grey coloured eyebrow powder. Do you think that when hair grows back grey it will eventually go back to its normal colour? It took ages for my hair to get back to its dark brown colour.
You are right to avoid crowds as you do not need to struggle with infections picked up from elsewhere. I can understand your problem with food but just do what you can and then pick up when you have finished the chemo. Do you have a finishing date for your chemo?
I see from the other TN thread that suze35 is having a difficult time and that she will be joining an eribulin trial. She has tremendous determination and willpower and I do so hope that eribulin will work for her.
That is all for now. Best wishes.
Sylvia0 -
Hello sam52
I have been wondering how everything is with you. I hope you are managing to find a bit of relaxation. It must soon be end of term so you will have a bit of rest from your teaching. With Christmas Eve being on a Saturday I was wondering when your school breaks up.Have you had any more news about the parathyroid monitoring?
Hope to hear from you.
Love
Sylvia0 -
My final path report is all clear! I had a complete response to chemo. Surgeon said that 25-35 percent of triple neg have complete response and out of that group 90% do not recur. Is that true? I knew about the percent that have complete response but not the 90% chance of non recurrence. I don't think he meant just local recurrence either because of some of the other positive things he said, but I don't want to repeat as I don't want to jinx myself! I am very cautious about this NED thing. I thought both my bs and mo were going to do back flips, they were very excited about my report! I still have to do radiation, but I knew that from the beginning. The only person that said that I may not have to do rads was the ro, but he recommended rads over not doing them. I hope everyone is doing well, always thinking of the women on these boards.
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Hi Sylvia, hope you are keeping well.
The pain in my leg is getting worse, Onc is sending me for a bone scan, probably won't be until after Christmas.
DH will be away Dec 18 - Jan 5. I have family and friends coming for Christmas so that will keep me busy.
Hi to all, sorry but i do have trouble keeping up with everyone
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Hello Bak94,
I am so glad that you have had a complete response to your chemotherapy treatment and that there is now no evidence of disease. You must be feeling so happy and relieved. I do hope you will not have to wait too long for radiotherapy and that this long second journey will soon be over for you. How will you be celebrating this good news?
I shall try to find some information about the numbers that have a complete response to chemotherapy.The percentage quoted is quite low, but I have read that chemotherapy is quite drastic given the success rate. It does keep us alive!!
I think you are wise to do the radiotherapy as it will give you complete peace of mind.
Best wishes
Sylvia.
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Hello Bernie,
I was so glad to hear from you. I was sorry to hear that you are still suffering from pain in your leg and hope that you will not have to wait too long for a scan. Do not be afraid to push to try to get it done before Christmas so that you can have peace of mind.
I was sorry to hear that your husband will be away for Christmas and the New Year. That will be hard for both of you. At least you will have plenty of other company over Christmas to keep your mind occupied.
What do you think about all the austerity measures being taken in Europe, Ireland and the UK? As usual it is the little people who pay.
Best wishes
Sylvia
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Hello bak94
I forgot to say that with the chemotherapy treatment, especially where large tumours are concerned and where chemo treatment is before surgery, the idea is to shrink the tumour so that it is easier to carry out surgery. I had a large tumour that did shrink but did not disappear, but it made the surgery successful and gave me an excellent pathology report with no visible evidence of disease. The radiotherapy is vital for mopping up any stray cells.
Best wishes
Sylvia
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Hello everyone
I am posting some more information that I thought might be of interest.I have just received my latest newsletter from Chris Woollams of CANCERactive. There are four main headings,
1. What if you could "melt away" a breast tumour? A genuine breakthrough in breast cancer treatment.
2. Crucial evidence that developing skin cancer is not "your own fault". Time to rethink.
3. Two "foods" that can reduce radiotherapy damage.
4. A natural compound that kills cancer cells? A government study shows just how powerful it is.
Number one is all about the research from the Karolinska Institute that I mentioned in a previous post. It is all about the new non-invasive treatment that destroys tumours through heat. It would be wonderful if this treatment could do away with the devastating treatment that is now used, disfiguring surgery, chemo, radiotherapy, with its possibility of damaging your heart and lungs, and for those with hormonal breast cancers years of drugs with all their complications and side effects.
Will there be a backlash against this non-invasive treatment from the drug companies and medical profession?
This treatment would be most welcome, I am sure, to all of us women.
Number two is all about melanoma skin cancer and that half of melanoma skin lesions are in places on the body that are not exposed to the sun. Apparently there factors other than sun to blame.
Number three is all about two things that you can take to reduce radiotherapy damage. We all know that radiotherapy can damage your heart and lungs. It can also damage blood vessels, tissue and bone as well as having bad effects on your white blood cells and immune system.
The two things mentioned are eating flaxseed and taking probiotics.
Number four is all about a natural compound that can stop blood vessels forming for cancer tumours. Apparently it can even shrink cancer tumours and kills cancer cells. The conclusions about this compound does not come just from individual studies. It is stated that the major supplement study in the USA (VITAL) puts it way above other antioxidants. This compound has an effect on cancers such as colorectal, BREAST, prostate, leukaemia and brain tumours. The compound is GRAPE SEED extract.
I have outlined the basic subjects covered but there is a lot more detail on the website. You need to click on the following links at CANCERactive:
Breakthrough breast cancer treatment:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3155
Latest melanoma research:
http://www.canceractive.com/cancer-active-page-link.aspx?n=2186&Title=Latest%20Research#DEC259
Revised Sun Safe campaign:
http://www.canceractive.com/cancer-active-page-link.aspx?n=2988
Two foods that reduce radiotherapy damage:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3159
Twenty tips for radiotherapy (an updated version):
The powerful antioxidant with other properties:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3156&Title=Grape Seed Extract
I hope you find this interesting and I welcome your comments.
Sylvia0 -
Hello christina1961
I have been thinking about what you said about your low white blood cell counts and looking for information. These are bits of information that I have found.The common drug when on chemotherapy is Neulasta to increase white blood cells, but I remember that you said it was not being used on you on the trial. It may be of use to others going through treatment.
Eat lots of fruit and veg but you may have to avoid raw foods if your white blood cell counts are lower than 1 k/ul. Check with your doctor.
GET PLENTY OF REST. I think you may be overdoing things, Christina. You have been through full standard treatment this year and now you are on a trial.
Extra vitamin C, zinc and beta-carotene may be helpful but apparently you must not overdo them.
Moderate exercise can increase counts.
Avoid people who are sick, wash your hands often, use good hygiene and call your doctor any sign of infection.
BE HAPPY!!! Your mood apparently helps your body to fight off infections. The happier you are the more likely you are to fight off infections, which increases your white blood count.
Eat foods that contain folic acid, so your body can produce more white blood cells. Folic acid is a type of B vitamin and is often added to ready to eat cereals. It is also present in milk, citrus fruits, spinach and beans.
Drink green tea to boost your immune system. Consume foods rich in protein, eggs, lean meats, fish, cheese and soy products.
Take a multivitamin if you are not getting enough nutrition from your diet.
Avoid sugar and keep sweet stuff to a minimum. Eliminate unhealthy fats.
Lose weight if you are overweight.
Drink plenty of water to boost the immune system and flush out toxins.
Take probiotics - yoghurt.
I hope you will find this of some help. There is lots of information on the internet about white blood cells and how to help increase them if they are low.
I think we all know that we have to take great care of ourselves when going through all the stages of breast cancer treatment. We have to get plenty of rest, eat healthily, take some quiet walks and avoid stress. We have to do all we can to boost our immune system and keep our red and white blood cell counts up.
I hope you are feeling better Christina.
Best wishes
Sylvia0
