Calling all triple negative breast cancer patients in the UK
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Hello everybody,
I thought I would pass on a bit of information that I picked up yesterday. A friend of a friend was diagnosed recently with hormonal breast cancer and had a lumpectomy. She did not need chemotherapy, but she did need radiotherapy. She was offered a place in a randomised trial for radiotherapy, during which three different methods of radiotherapy were being trialled. She was given the middle method. I was wondering whether any of you recently diagnosed and going through radiotherapy can give information about these trials or let us know if you are in one of these trials. Do not hesitate to post your information, because we need to keep up to date and know what is on offer. I did read sometime ago about proton radiotherapy, which is supposed to be less damaging to the body, but I read it was not readily available on the NHS.
Last week, in one of the newspapers, there was an article about "Why is everybody getting cancer?" If you read it, your comments would be welcome. It stated that cancer rates are doubling or trebling. In fact, it said that breast cancer rates for men are quadrupling. It said that the natural causes of cancer were UV rays from the sun, radon gas, bacteria and viruses. It further commented on lifestyle, with smoking, drinking alcohol, obesity, diet and modern living being the biggest culprits, causing untold damage to our bodies. Also mentioned were pesticides, hormone disrupting and carcinogenic chemicals. Do you have any comments?
I have been reading more about TP53, which is said to be one of the most commonly mutated suppressor genes in human cancer. Silencing of this gene in a process known as methylation allows cancer cells to proliferate. As I have mentioned before, this came to my notice when I was first diagnosed as possibly implicated in triple negative breast cancer.
Another bit of information in the news recently is about the drug lapatanib, which looks as though it may help survival time for those with metastatic breast cancer. This was a drug that NICE was not recommending because of the cost. It appears that NICE has now changed its mind and will allow its use. It has also come to my attention that cisplatin (chemotherapy) is being used in the treatment of breast cancer. I think it is being added to taxotere (docetaxel).
That is about all for today, except to say hello to Spamy61 (Pam). I hope all is going well with your radiotherapy.
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I am posting just to say that there is good information about the radiotherapy trials on the cancer research web site.
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hi Karen
There are many BRCA genetic related BC respond well to chemo. Poor chemo responses is not correlated with being genetic or not;
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I have been reading various references to different breast cancer chemotherapy drugs and noticed that sometimes the brand name is used and sometimes the generic name, so I thought it would be useful to list them in an orderly manner, to help those newly diagnosed and starting chemotherapy, as well as those going through treatment. My main aim in starting this thread was for us all to inform and support. I have listed them, as brand name, generic name and any other information I have. I would be interested to know which drugs any of you are having. When I was going through treatment I had three months in three-weekly sessions of combined cyclophosphamide and epirubicin, and three months in three-weekly sessions of docetaxel. I know different trials were taking place at that time, so different combinations are probably being used.
Brand name Generic name Other information
Navelbine vinorelbine anti-cancer drug,
Gemzar gemcitabine anti-cancer drug,
Avastin bevacizumab an anti-cancer drug and anti VEGF drug,
Xeloda capecitabine anti-cancer drug,
Paraplatin carboplatin platinum-based chemotherapy drug,
Platinol cisplatin platinum-based chemotherapy drug,
Taxol paclitaxel belongs to the group known as taxanes,
Taxotere docetaxel belongs to the group known as taxanes,
Ellence epirubicin a cytotoxic anti-cancer drug,
Doxil doxorubicin a cytotoxic anti-cancer drug,
Lypholized/ Cytoxan cyclophosphamide an alkylating agent,
Carac fluorouracil an anti-cancer drug.I think in the US PARP inhibitors, such as iniparib are being used. I was told recently that PARP inhibitors were a long way off in this country.
For all of you about to undergo chemotherapy, if it still the same, I remember from my treatment that all of us patients were in a ward specially kept for those of us on chemotherapy. We sat in armchairs and were hooked up to our chemotherapy drugs. The drugs were not prepared at the pharmacy until we arrived for our appointment and before we were checked out to make sure that we were well enough to go ahead. This depended mainly on our blood test readings, especially the haemoglobin reading. The drugs were fed through a cannula attached to the back of the hand. Since I did not know about the ward etc., I was a little perturbed about everything, but soon settled down. You will all do the same. A chemotherapy day is a long day, so just be relaxed about it, and have a good rest when you get home. You will be told before leaving to make sure to flush out your system by drinking plenty of water and to take the pills that they give you for a few days. By doing this, it will help to prevent or alleviate any sickness or nausea. I did not suffer from any of this.
I hope you will all find this useful.
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Just to add to the thread about information and future treatments. One site I have found useful is from a lady in the US http://hormonenegative.blogspot.com/2009/12/triple-negative-breast-cancer-diet.html and the other is http://www.tnbcfoundation.org/ with the latter having a good booklet.
I have a friend who is an oncology pharmacist and she has told me that a company has the PARP inhibitor due to be ready for the end of 2011 for metastatic triple negative but at the minute it is only in the US but may be fast tracked here. I think I saw on a TV programme that there was a trial in Birmingham under a Dr Rea. I also think that Lapatinib is for Her2 positive.
Sylvia...thanks for your thoughts on the radiotherapy. All going well so far, although my arm swelled up a bit yesterday so called the breast care nurse in a panic over lymphodoema. Seems better this morning but keeping a close eye on it!
Pam
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Hello Pam
Thank you for your latest posting. I have looked up the web addresses and the information is very interesting. There were some sad postings from some women and good news ones from others. I am convinced that you must adopt a positive attitude when diagnosed with breast cancer and decide to go through the treatment, listen to advice from your medical team and those who have been through treatment. You can get through treatment and you can survive this disease.
It is good news to know that the PARP inhibitor, now available in the US, may be fast-tracked to the UK for the treatment of metastatic triple negative breast cancer. Let us hope that NICE will not veto it on the NHS. I did read some time ago that the coalition government were not going to allow NICE to veto new cancer drugs, but I have not heard them say this lately.
I was glad to know that all is going well with your radiotherapy. With reference to the swelling, keep exercising your arm. I found it was very useful to do gentle brushing of the arm with a round brush that I bought in Boots. I still use this brush from time to time. You can also massage with your hand. There is a way to do it so that the brushing gets the lymph moving. I think this is called manual lymph drainage. During my treatment I saw some women with bad lymphodema after surgery, but I had only moderate swelling. I did request to attend a lymphodema clinic and I did see a specialist nurse on a few occasions. I refused to wear a sleeve that they do offer for lymphodema, but I did not feel I needed it and it was so tight on the arm that I knew I could not and would not wear it. I also went to see a physiotherapist and had a few appointments in which I was given exercises to do at home. I did them for a while, and I was then told I did not need to attend any more physiotherapy. To keep your arm or arms as normal as possible, it is important to do gentle exercises straight after surgery. I remember the physiotherapist came to see me in my hospital bed the day after my mastectomy and showed me how to do certain exercises.
With reference to diet, I think we must all know by now that we must emphasise healthy eating with plenty of fruit and vegetables, whole grains, nuts, seeds, pulses and beans. I eat some fish and seafood but I do not touch meat, poultry or dairy products. I think it is important to eat a balanced diet. I drink plenty of green tea and eat apricot kernels.
I hope all is going well with FreddieDLH, Jinglebell, Micheyd, Karen3 and Hymil. I would also like to say hello to NewAlex and welcome her to our thread.
That is it for today.
Sylvia0 -
Hello everyone.
I have been reading back through all the postings since the inception of this thread, to refresh my memory. I have noticed that we have not mentioned much about what goes on when a person is first diagnosed.
First of all, it would be interesting to know how we all discovered that we had a lump. How many of you out there discovered the lump yourselves and how many of you were informed after being called back after a mammogram? Since many of you are younger women, you were probably not getting mammograms, so I am assuming that you discovered the lump yourselves. Did you act immediately and get checked out by your GP or did you delay? Tell us your reactions. I delayed quite a while before going to the doctor, even though I knew what was wrong, so my advice to anyone discovering a lump is to get it checked out immediately. I know that on some of the threads there have been big discussions about the pros and cons of mammograms. Tell us your own views on this. Do you think the risks of exposure to radiation are worth it?
For those who are newly diagnosed with breast cancer, after seeing a GP you will be referred to a consultant. The consultant will do another physical examination and then will do a biopsy by doing what is called a fine needle aspiration. After that you will attend a clinic, have a mammogram if you have not already had one. This will be followed by an ultrasound, during which a piece of tumour is removed by a core biopsy for inspection. After that, in my case, possible options for treatment were explained. I returned to see the consultant about a week later. It was at that point I was told that the tumour was oestrogen negative, progesterone negative and HER2 negative and I was told that I would need chemotherapy, mastectomy and radiotherapy in that order. I was also told that the prognosis was not good, because, after treatment, Tamoxifen and the like would be no good. I was given a week to think everything over. When I returned I declined treatment for the moment and said I wanted to check out homoeopathy and private alternative treatment. The consultant was quite amenable to this and referred me to that Royal Bristol Homoeopathic Hospital. I strongly advise all newly diagnosed people not to delay orthodox treatment, but, by all means, to use homoeopathy and alternative treatments if desired. Only orthodox treatment, in my opinion, will bring you into remission. I took Iscador, as an adjunct, in oral form, for five years after diagnosis. It is an immune booster and I feel that it helped me. My homoeopathic consultant gave me other medications as I went through treatment, and I felt that they helped me a lot.
Before the basic treatment you will also have scans to find out what is happening in the rest of your body. You will have a CAT scan to see what is happening in the organs of your body and a bone nucleide scan to see if there is spread to the bones. In the US they seem to be having all sorts of scans, such as MRI scans and PET scans, but I do not know whether this is before or after treatment. On another thread I read about patients wanting MRI scans as well as mammograms, as part of their post-treatment check-ups. We always have to bear in mind that the health system is run differently in the US.
When you have been through the above procedure, you will then start on the long journey of chemotherapy if necessary, surgery and radiotherapy.
I hope this information will help all newly-diagnosed patients, whether triple negative, or hormonal sensitive.
That is all for today.
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The other day I decided I would take a look on the internet at information sites on triple negative breast cancer to see if there is any new information. Here are a few observations.
In addition to the usual things about being diagnosed more frequently in younger women, women with BRCA1 mutations, African-American women, and Hispanic ethnic groups, I noticed that women who have recently given birth was added to it.I felt discouraged by the often mentioned fact that TNBC had a poor prognosis. I feel that this is very frightening and discouraging, especially for newly diagnosed patients. It was further mentioned that the prognosis was poor because there was no targeted therapy for TNBC patients, such as Tamoxifen and Herceptin that are targeted therapies for hormonal patients. The good news is the arrival and success of PARP inhibitors that are producing good results for TNBC patients in clinical trials. We all need to be aware of these PARPs and fight to make them available. Those of you going through treatment and dealing with metastatic breast cancer should mention PARPs to your consultants and oncologists. The PARP inhibitor mentioned is BSI 201. A targeted anti-body drug is also mentioned, Glembatumumab vedotin (CDX-011), also proving successful in recent trials.
Another piece of information of which you are probably aware is that TNBCs belong to a sub-group of cancers known as basal-type. TNBCs are the biggest group in this sub-group. When I started researching on my own TNBC, over five years ago, I asked my consultant whether my TNBC was also basal. I was told that it probably was, but I do not think that the tumour that had been removed was re-analysed to confirm this. Another doctor said that she thought that all triple negatives were basal-like. She also referred to TNBCs as phenol. A lot has gone on since I was diagnosed, so if you want, you can probably talk more freely to your medical team and get more answers.
Through more reading I have discovered that all breast cancers that are not ER+, PR+ or HER2+ are classed TNBCs.
Apparently, nine out of ten women with TNBC also had faulty BRCA1s. I feel that, if this is the case, we should all have a right to genetic testing, so that we know whether we have this faulty gene or not, and that this testing should be done regardless of our age at diagnosis and whether we have a strong family history. We should all have a right to know whether there is an hereditary factor in our TNBC or whether it is just a random occurrence.
Most samples of TNBC showed very low levels of 53BP1, which can make them, apparently, less sensitive to radiotherapy. However, there must be a lot of success stories, given the survival rates of TNBC. I am coming up to nearly five and a half years since diagnosis, and I had one of the largest tumours that I have seen mentioned on any of the threads, so do not be discouraged at some of the information given through research and trials.
The good news about TNBCs is that they are responsive to chemotherapy.
Another piece of information has linked diabetes to poor breast cancer outcomes.
However, metformin, a common drug for diabetes treatment, is now being mentioned as a promising treatment for TNBCs. It is thought that metformin may be able to influence the destruction of cancer cells. If this is so, are we to understand that, in the future, TNBCs may be able to have metformin as a targeted treatment.
Another thing I have recently read is a possible connection with taking oral contraceptives and an increased risk for TNBC. This applies in particular to women 40 or younger, with the risk increasing the longer the oral contraceptives were taken. This made me start wondering whether all this was linked to low levels of oestrogen brought about by the pill. This made me wonder even more because I read sometime ago about the possibility of women taking Tamoxifen for a long time for hormonal breast cancer, developing TNBC in the other breast.
We are probably better off not taking any information we find as gospel, because there is so much information out there. What we should be doing is getting as many answers as we can from our medical team.
We should all be grateful that TNBCs, representing 15% of all breast cancer cases, is beginning to get more attention and the search is on for targeted therapies.
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Hello everybody,
I just wanted to finish what I began about the basic stages in the treatment of breast cancer. There is not much more to say. I thought I would just say a word about vascular ports. These are inserted under anaesthetic for feeding chemotherapy drugs into you. At the start of my treatment I had the chemo through a canulla at the back of my hand, but was offered a vascular port to be inserted at the same time as my mastectomy. I was told that this would be useful in case the cancer came back and would avoid the problems with veins that can happen with a canulla.I was told that if it did not need to be used it could stay in for life. I accepted having this done. What I was not told was that I would have to have it checked out at the chemo ward and cleaned every three months I went for the first check up, and every thing was fine, but on the second visit I was told there was a problem. An x-ray showed that the port had fractured and that I would have to have it removed under general anaesthetic. I had to go into hospital for day surgery. I was not entitled to another port and would not have wanted one.
At the end of your treatment you will go through the usual scans and be told,if all has gone well,that there is no visible cancer in your body. At least that was my personal experience.
After that you are put on three monthly physical checks, alternating between the oncologist and the consultant surgeon. This will later go to six months and then twelve months. After five years you are usually discharged. I have now gone nearly five and a half years and will probably be discharged next year. That is if all continues to be okay. Mammograms have been every two years but will go to every three years starting next year.
I hope my outline of the basics of cancer treatment have been helpful to all of you.
I would love to hear from you and to know how you are getting on.
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hello again Slyvia, and thank you for all your postings and helpful info, and for all the research you have done, and I would also like to welcome all the other people who have came to the board. I have read back through all the postings and I think I read somewhere on the board that all breast cancers that are not estrogen postivie, progesterone postive or her2 are classed as triple neg. I wonder if there is any other type of breast cancer (apart from triple neg) that causes cancers without hormone receptors. None of the medical staff actually said my breast cancer was triple neg, and that "term" wasnt used to me, so I am presuming it must have been triple neg when I did not get offered any hormonal treatment. I got offered a trial (the drug was the same that arthiris sufferers take, but cant remember the name). Anyone know of breast cancer caused by anything else other than it being triple neg. Otherwise I am doing well and everyone there going through treatment I say keep positive, and things will get good again for you. Diagnosed Nov 2007 lumpectomy/mastectomy 0/10 nodes er- pr- her2- grade 3 IDC
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Hello Jinglebell
I was glad to hear that you are still doing well. I think that is what we all want to hear as we go through life after a diagnosis of breast cancer. I would like to join you in welcoming everybody to this thread and to let you know that we shall all give you all the support you need and will try to find the answers to any of your questions.I was very interested to know that you had been offered a trial with a drug used for arthritis. I have to admit that I have no idea what that drug can be. If you can try to find out the name, or if anyone else has any idea or information, please let all of us know. I continually ask about any new drugs that might be in the pipeline for the prevention of triple negatives and I have been told, so far, that there is nothing available, but that PARPs are most promising. As I said in one posting, I did read that the diabetic drug metformin was showing to be promising in experiments with mice. If that proved to be effective it would be an inexpensive drug for triple negative, in the way that Tamoxifen helps hormonal breast cancer patients.
I think that if you are ER- PR- and HER2- you must be in the triple negative group. It is something about which you should ask your consultant. When I was diagnosed in June 2005, my medical team did not use the term "triple negative". I was told that I was ER- and PR- and that there was nothing that they could give me to prevent the cancer coming back, after chemo, surgery and radiotherapy. I was the one that started researching all this and asking questions. It was a bit later that I was told I was HER2- and that that was a good thing because HER2+ breast cancer was aggressive. I was not in fact told that, being negative, meant that the cancer was aggressive. They said the prognosis was not good, because they did not have anything like Tamoxifen to give me.
I wrote asking about triple negative and basal-like breast cancers. The answer came back that I was probably basal-like, because most hormonal negative cancers were. I do not think they had tested the tumour for basal-like characteristics. I do not even know if they did such things back in 2005. I think there are different subgroups of hormonal negatives, but that the largest group is triple negative. The good news is that the emphasis now appears to have shifted from the hormonal positives (for which there are various drugs, post treatment) to finding treatments for triple negatives. I doubt if any of us will ever have the answer to what caused our cancer. What is hopeful is for drugs to become available that will help to keep it at bay.
I hope all of you going through treatment are keeping positive and looking after yourselves. It is now nearly five and a half years since I was diagnosed and my tumour was very large. If I got through all of this then so can all of you.
Please do not be shy about posting. Everybody has something useful to contribute. If any of you with hormonal positive breast cancer are looking at this thread, I hope you are also finding it useful. The basic treatment is the same, so anything you have to say is equally valid.
Let us make sure we keep this thread going, as it is a way of obtaining information and getting support, that is not always forthcoming in our very busy NHS hospitals.
Best wishes to you all.
Sylvia
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Hello Jinglebell
Your posting aroused my curiosity and I have been looking up arthritis drugs for TNBC. I think the drug that you were offered was probably celecoxib, which is a non-steroidal anti-inflammatory drug and is a cyclooxygenase II inhibitor. It has obviously been used in trials, but I do not know what is happening with it now. It was stated to be a possible preventive drug for TNBC.
Does anyone have any further information?
I found some TNBC conversations going on at the Cancer Care website, under triple negative. The postings I found did not seem to be later than 2008, so I do not know what is going on with that forum. People sounded very pessimistic about TNBC. I think we all need to remain optimistic and to search for facts and reliable information about TNBC.
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Hello Everyone,
I have been doing a bit more research after reading Jinglebell's posting. There are quite a few different types of breast cancer. I shall name a few and suggest that any of you that want more details Google for the information. The following is the information I have.Medullary breast cancer.
This is a rare type of breast cancer that represents 3 - 5% of all breast cancers and affects all ages. It is more common in women diagnosed with the faulty BRCA 1 gene. It is generally triple negative but not always. It has a better prognosis than women with other types of breast cancer. The name comes from the fact that it looks like medulla, the grey matter of the brain.
Lobular breast cancer.
This type of cancer represents about 15% of all breast cancers. It is usually ER+, but can be negative. Most lobular breast cancers are HER-. On the information I was reading there was no mention of progesterone status. Another piece of information mentioned that lobular breast cancer represented 5 - 10% of all breast cancers, and that this type of cancer does not always appear as a lump.
Basal-like breast cancer.
These are usually triple negative, but not all triple negatives are basal.
Triple negative breast cancer.
These can be basal-like but not always. The majority of BRCA1 cancers are triple negative. This type of cancer represents about 20% of all breast cancers. This figure probably includes the various sub-groups of triple negatives.
Paget's disease.
This type of breast cancer affects the nipples. It represents 1% of all breast cancers.
Inflammatory breast cancer.
This is a very serious form of breast cancer and represents 1% of all breast cancers. Women are surviving this because of very effective chemotherapy drugs.
Non-invasive breast cancers ( Ductal Carcinoma In-Situ DCIS and Lobular Carcinoma In-Situ LCIS).
I do not know what percentage of cancers this represents. Some people have told me they are not included in the breast cancer statistics.
Tubular breast cancers.
These are slow growing tube-shaped cancers.
Mucinous breast cancers.
These contain a mucous protein.
Rare breast cancers.
These include sarcomas of the breast.
There appears to be so much more information available since I was diagnosed five and a half years ago. I think that those of you going through treatment today would be advised to obtain as much information from your medical team as possible, because it is in your interests. It is only my own personal opinion, but I think that everyone should know the precise details about their tumour, and the treatment available. It seems to me common-sense that those of us with triple negative should know more than just ER-, PR- and HER2-. I think those of you going through treatment now should know whether it is basal-like, whether it is medullary. I also think that a diagnosis of triple negative should enable everyone to be tested for the BRCA1 or BRCA2 genes. I think the NHS should provide this, as going privately is too expensive. There is a lot of waste in the NHS, and I think that our taxes should give priority to first-class treatment for every patient and accessibility to all available drugs and tests. We have to learn to push, as the American women do.
I do hope there will be more postings. Hello to Freddie DLH, Jinglebell, Hymil, Spammy 61, Micheyd, Karen 3, and Newalex. How are you all doing?
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hello again Slyvia Thank you for reading my post and for all the helpful information you have researched and written. Yes I think that it was celexicob, spelling?? as I remember being offered a sheet with all the info on it about the drug in the trial, but I declined it because one of the side effects was possible bleeding from the intestine (I think). Also I am now a bit confused why you were told after your treatment that there is nothing further they can do to prevent it coming back. My oncologist stopped my chemo at four cycles (thank God) and said it was too toxic for me, but said he was confident the cancer would not come back, but didnt say I was cured. I have taken it to be the "all clear". Maybe all triple negative cancers have a better prognosis in the past four years with better treatments etc. as some of the women on the American boards are having many years survival. We can only hope for the best and live one day at a time. Once again thank you for your help to everyone on the boards.
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Hello Jinglebell
When I was diagnosed nearly five and a half years ago I think that, at least in this country, that we were in the dark ages for TNBCs. I think that a lot of progress has been made since then and that there is a lot more information. I was not offered any trials, because I had had my treatment and been told there was no visible cancer left in my body. As I finished treatment some women, not necessarily with TNBC, were being offered weekly treatment of chemotherapy, whereas the norm had been every three weeks. The oncologist told me that, if I had recurrence or spread, I would be offered chemotherapy, but not necessarily with the same chemotherapy drugs I had already had.I think when, with TNBC, your medical team tells you that there is nothing they can give you after treatment, they mean they do not have anything like Tamoxifen or Arimidex. In fact, I think, some years ago, before they started distinguishing between the different breast cancers, they put everybody on Tamoxifen. Then, they must have started to realise that certain women were not responding, and these were probably the non-hormonal ones.
As you say, on the American forums, women seem to be surviving after a diagnosis of TNBC. If they can survive, so can we. We must make sure we get whatever treatment we need.
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Hello everyone
I thought I would just wish all of you a very Merry Christmas and a Happy, Healthy, New Year. For those of you going through treatment at this special time of year, please remember that we shall all be thinking of you and wishing you the best. Keep looking forward and remember that the long treatment of chemotherapy, surgery and radiotherapy does come to an end, and that your life will get back to normal. I have now just passed five and a half years since diagnosis and I hope this will encourage you all, all the more so because I had one of the largest tumours that I have heard mentioned on the forums I have looked at.I do hope that we shall be able to continue this thread next year, and that we can get more postings. This thread can work only if we share our thoughts. Does anyone have any idea who might be the youngest person to be diagnosed with TNBC and who might be the oldest?
Try to forget TNBC for Christmas and enjoy your time with your families, especially your children, and friends.
That is all for now.
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Hello Everyone
I hope you all had a good Christmas and that you are ready to face the new year with optimism.
If there is anyone starting the new year with a breast cancer diagnosis, I hope you will post in and let us know, so that we can support you.I have a few bits of information. I have read that some women in America are being given Abraxane as an alternative to docitaxel (Taxotere), if they have allergic reactions to this drug. Do any of you know anything about Abraxane?
Here are some terms that may also be useful.
High grade = more severe abnormalities in the tumour.
High mitotic index = fast growing.
TNBC tumours are poorly differentiated = they no longer look like normal breast cells.
TNBC tumours are more likely to be node positive.
The average age of women with TNBC tumours is 53 to 57.7 years old.
I have also read that American women are being given Neulasta shots after chemo when they have problems with low blood cell counts .Are any of you receiving this drug. It seems to have a lot of side effects?There has been recent research about the benefits of physical activity in surviving breast cancer. Some research says it does have benefits,other says that it has no benefits.
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Hi, I have not posted on this forum before, but I have (most likely) triple negative IDC. Diagnosed June 2009, 11 nodes negative. The reason why I say ? triple negative is that there was a discrepancy between the ER status on the core biopsy (4/8) and the 2cm tumour they removed by lumoectomy (ER-, PR- HER2-). I had dd ACT plus 36 rads, and just in case tamoxifen which I did not get on with at all but persisted. I suspect that the Tamoxifen did nought, as my persisent cough over the last few months (despite clear Xrays, and CEA plus other antigens being normal) turned out to be lung adenocarcinoma and met to rib. I am having all tests done before starting treatment. Most likley will include avastin + ? There is a very good review in NEJMReview Article
Current Concepts
Triple-Negative Breast Cancer
William D. Foulkes, M.B., B.S., Ph.D., Ian E. Smith, M.D., and Jorge S. Reis-Filho, M.D., Ph.D.N Engl J Med 2010; 363:1938-1948November 11, 2010
(could not see it mentioned before).
I will try anything including PARP inhibitors (only in phase II at the moment by Sanofi)
Will keep you guys posted
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Hello Josephine
Thank you for your post.I am so sorry to learn that you are having to deal with lung adenocarcinoma and met to the rib. I am sure that everybody reading this thread will have you in their thoughts and will be wishing you all the very best. With reference to the lung adenocarcinoma, I am assuming that this is not another primary tumour, but that it has spread from the primary breast cancer.
I have been reading some of your posts to other threads, so I know that you are a very well informed person and that you will make sure you get the very best treatment. Please let us know what chemotherapy drugs you will choose. I know that Avastin is used and from reading other threads there could well be a variety of drugs. The carboplatins seem to be widely used now. I have read very good things about PARP inhibitors and I hope you will be able to get them, if they are your best possibility. My consultant told me it would be quite a while before they were available here. However, with determination, it is amazing what one can achieve. I am sure you will remember the fight that went on to obtain Herceptin for those women diagnosed as HER2+.
I am surprised that your consultant put you on Tamoxifen, when the tumour removed by lumpectomy clearly showed triple negative. As you say, it probably did you no good at all, and it does have nasty side effects. I know that some years ago, before all the knowledge about triple negatives, all breast cancer patients appeared to have been given Tamoxifen.
Please let us know how you get on with your tests and treatment. Good luck and take care.
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Hello Sylvia
The lung adeno does orginate from the orginal BC, is tripe negative but is positive (I am trying to remember what my onc said, for CK 17) so definietly a basal tumour. I have had Muga and kidney clearance tests this week before the all clear for chemotherapy. I shall certainly give you up to date on what treatments I get. I am determined to do what ever is necessary. The lung tumour is quite susceptible to bleeding so hopefully will be hit with avastin. However, I am more concerned about halting this cancer, as clearly it is agressive and still growing.
The reason that I had tamoxifen was because the core biospy indicated ER+ (albeit reatively weak with a score of 4/8) the main tumour was negative, but could have been due to fixation of tissue. Anyway it is definitely a triple negative, and one positive is that I can at last kick the tamoxifen into touch
Thank you for your best wishes
Josephine
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Hello Josephine
Thank you for your post.I hope that you will be able to start your chemotherapy drugs very soon, and that they will get rid of these tumours. There seems to be a lot of new drugs available since I had chemotherapy in 2005/6. On behalf of all those viewing this thread, I would like to say that we shall all be thinking of you and wishing you the very best. Let us know what treatment you are offered, because it could help others in the same situation as you.
Take care of yourself.
Sylvia
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Hi Josephine
Just to echo what Sylvia has said.....sending lots of love and good wishes. I will keep logging on to check on you so please keep us updated XX
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Thank you Karen for sending your support to Josephine. It must be a very worrying time for her. I hope everything is fine with you Karen.
I have to go for my two-yearly mammogram on January 19th, so I am starting to get a bit anxious. I have been told that, if everything is fine, I shall go back to the normal three-yearly mammogram. I do not know whether this is a good or bad thing. There is a lot of controversy about mammograms. This year I have a check-up with the oncologist in May, and a check-up with the consultant surgeon in October. After that I shall probably be discharged, as I shall have gone over the five years since diagnosis. In fact, it will be over six years. Again, I do not know whether this is a good or a bad thing, as the evidence shows that you can have metastasis or recurrence years after diagnosis. With our state-based health system I suppose rationing has to begin somewhere.
I regularly check the Calling All TNBCs thread on this forum and it is obvious that in the US with their insurance-based medical system, they get a lot more check-ups than we do. They seem to have a lot more scans. I do not know whether this is a good or bad thing, as scans are not without their side-effects. I had only a couple of CAT scans and one bone nucleide scan during my treatment. It would be useful if some of you could post in and let us know if there have been any changes since my treatment in 2005/6.
It would be useful to know whether any of you have had PET scans. Apparently these are very good at detecting cancer anywhere in your body. You are given a sugar drink which shows an uptake wherever there is a cancer cell present. Do you think patients should be having these? Do you think you should be asking for them? Are any of you now having MRI scans?
I have discovered that the term triple negative breast cancer first started to be used in October 2005. That explains to me why this term was not used with me when I was diagnosed in June 2005. I was the one who mentioned the term to my medical team.
I have also found out that there are 30 lymph nodes under the arm. I think you probably know that the first one is called the sentinel node. However, I found out recently that the sentinel node can be one node, also known as the first node, or a group of first nodes. If no cancer is found in the sentinel node or first node, it is unlikely that the cancer has spread.
How many of you are being offered a sentinel lymph node biopsy? I was not offered this, but apparently it is more commonly offered now. This is a procedure where a radioactive substance, injected into the lymph system, takes up blue radioactive dye. These blue nodes are then removed. A pathologist does a rapid exam under a microscope to look for the presence of cancer.
Are any of you being offered Avastin + Xeloda? I have read that it is being given as part of a trial, probably in the US, as a primary treatment to stop recurrence of breast cancer. Also in the US, women appear to being given Neulasta shots after chemo. Are any of you being given this?
That is all for today. It needs more postings to keep this thread going.
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Dear Sylvia and Karen
Thank you for your best wishes. I was waiting to post again once a concensus on my treatment had been reached which will be next week after I have seen another Prof and got a view from a leading US oncologist. My oncologist is wonderful. Very smart, but clearly did not choose the high power route, and does not have a big ego. He is very co operative and sends my notes to others for comment. Had brain scan yesterday (just to be sure) because if you read the NEJM article I mentioned, TN/Basal tumours tend to migrate differently to ER +ve tumours. Sylvia you are in a great position, and whilst there is always a risk of recurrence, you would have seen from that article that with TN BC if you manage three years without a recurrence you are virtually home and dry. The peak of recurrence for TN/basal BC is between 12 and 18 months (I was bang on the money!!)
The issue of performing scans routinely is difficult. I have had just about all of them (except PET) as the need arose. Earlier last year I had spine pain (degenerative vertebrae) but I got a second bone scan and MRI , anyway and it was negative. I just wish my persistent cough had been worse earlier because it was only with its continuation and blood in mucus that a CT scan was ordered. In otherwords routine scans for the sake of it are questionable? what is needed are more accurate tumour markers indicative of recurrence or mets. Again the normal marker (CEA and 15-9) that I have done on my blood sample were negative, but when CA 12-5 was added (associated with ovarian cancer, and lung mets) the levels were sky high.
Treatment wise I most likely will have avastin with platinum salts. I have tracked down PARP inhibitor trials. THey are phase III EAP in the US, but still only phase II here. It is a matter of finding out who is doing them, and whether they are planning more trials. As you know , the issue with trials is that the combination may not be the one you wish (for example avastin has never been partnered in iPARP trials).
Anyway I will keep you posted. Currently I am getting my family jabbed for flu (have to buy it from the chemist as our GP surgery will not immunise them, because I am not yet on chemo!!) Ha ha!! and if I get sick, my lung will collapse and chemo will have to be delayed!! I love the NHS!!
My luck has been that my husband has private mediacal insurance that includes me (just the year before I got BC). I have been (previously) a real supporter of the NHS and said I did not want that 'rubbish' but I have been so grateful for it now because of the service I have received. One issue though is that private medicine does not often do trials, so you have to ensure your oncologists are up to date and have good contacts.
All for now.
I am doing fine, and feel very positive
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Hello Josephine
Thank you for your posting. I am so glad to know that you are getting such good care before you decide what to do. I am also glad to know that you like your oncologist. I think it is very important that we get on well with our medical team. I had an excellent medical team at the NHS hospital in Exeter. My oncologist is a woman and my consultant surgeon is a woman and they were very kind, patient and thorough with me. I asked so many questions and wrote letters and they always gave me answers. They said it was most unusual for someone to write out so many questions and that a lot of patients did not want to know much. I think they respected me very much, because I was so interested in every aspect of my breast cancer.I hope you get good news from your brain scan. I remember reading a few years ago about TNBCs having a tendency to spread to the brain, and I was terrified about this.
I agree with you that routine scans for the sake of it are probably questionable, because these scans are not harmless. In the US the medical profession might be overdoing things. They seem to do very frequent mammograms. I just wonder how the women in the US get their breast care treatment if they do not have insurance.
I agree with you that more accurate tumour markers indicative of recurrence or mets would be useful, but when I mentioned to my oncologist at a check up about having blood tests for this reason, she told me that blood tests were not that useful, because they were only good for that day. I did not really understand, but put this answer down to the fact that everything is rationed on the NHS. I know that private doctors will give you all sorts of blood tests for tumour markers, but it is very costly if you do not have private medical insurance.
I do hope you will get the treatment that you want. I have just read an article online in the NEJM. It is about the PARP inhibitor Iniparib plus Chemotherapy in Metastatic Triple-Negative Breast Cancer. They were trials that were comparing treatment with gemcitabine and carboplatin with or without iniparib. This was a phase 2 trial and they were going to go on to phase 3. Have you read this article? There is also another interesting site at www.Med-IQ.com/a519. This is about a course on triple negative breast cancer, but I could not get into it because you have to pay for the course and be in the medical profession.
I understand your frustration about the flu jabs. Your GP's reasoning makes no sense. You are very lucky to have private insurance. I think the NHS is overloaded and NICE is not very nice! I thought the new coalition government was supposed to get rid of NICE. It is quite unsettling when you see in the papers and hear on the news that the UK is one of the worst places to be in for cancer treatment!
That is all for today. Once again, good luck and best wishes.
Sylvia
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I am posting a few more bits of information.
Are any of you that have been diagnosed recently with TNBC now being told more details? Apparently a patient can be basal-type, basal-like or true TNBC. My information is that basal-type is the most aggressive, basal-like less, and true TNBC less. I do not know whether this is true.Have any of you been told about the diabetic drug Metformin as a potential inexpensive way to treat breast cancer?
I have read that a medical doctor in the States is predicting that PARPs will soon move beyond metastatic breast cancer trials into the adjuvant era.
The drugs gematabine (Gemzar) and carboplatin (Paraplatin) plus irinotecan (Camptosar), a PARP inhibitor, is promising treatment foe breast cancer.
Have any of you read about the gamma camera that can show up tumours in dense breast tissue?
Have any of you been reading about new research indicating that it is better to start chemotherapy with the taxanes, specifically mentioned paclitaxel (Taxol), and then go onto epirubicin and cyclophosphomide.
Research has found better long-term results for adjuvant and neo-adjuvant chemotherapy, using the taxanes first. It has found better survival rates at five years and ten years. It is not clear why taxanes first have better survival rates.
That is all. I hope all of you going through treatment are coping well.
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Hello everyone.
This thread has been very quiet since somebody, other than me, posted on January 8th. I do hope that everyone is making good progress with their various treatments. Please post and let us know how you all are.
Breast cancer has again been in the news lately. The bad news is that breast cancer cases are increasing. According to the statistics for 2007, one in eight women will be diagnosed with cancer, up from one in nine. Something like 46,000 women a year was quoted. The good news is more and more women are living longer and that breast cancer is becoming more of a chronic disease.
Again there was mention of hormonal breast cancer and genetic breast cancer, but no mention of triple negative.
I was wondering how many of you subscribe to the free magazines Amoena and Vita. I do subscribe and find them quite useful. How many of you read Icon magazine? I have not read it in a while, but it is a most informative magazine.
At the moment I am waiting for the results of my recent two-yearly mammogram. This is always an anxious time.
That is all for today.
Sylvia
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hello Slyvia, Glad you are doing well. Yes the thread is rather quiet at the moment and hope some other readers will post soon. I have not been back to the boards myself for some time. I am hoping the results of your mammogram will be good, and fingers crossed for you, and please keep us posted. Up here in Scotland the wait for the two yearly mammogram results is about three weeks, and expect its the same there, so its a bit of a worrying time (but I expect if anything was wrong the results would be through quicker). I went for my yearly check up two weeks ago, and everything is fine and dont need to go back for one year and have mammogram then. How often do you have mammograms, its every two years for me. My sister-in-law who is on Arimidex has a mammogram every year, and bone scans. Perhaps its because of the hormonal treatment they do that, but Im not sure, as Ive never had to have bone scans. Its over three years now since I got diagnosed and things seem to be good, so long may it last. The magazines you mentioned, I have not heard of them, but thank you for posting about them and I will check them out. I hope all the other people undergoing treatment are getting on good. Thank you Slyvia for all your information and research and support to offer to everyone. Take care. Mary.
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Hello Mary
It was so nice to hear from you and to know that all is well with you. I think it is so important to try to keep our thread going. It can be really useful for newly-diagnosed patients and helpful for the rest of us to keep track of how we are all doing and of any new treatments.I am still waiting for the result of my latest mammogram. It is now nineteen days since I went to the hospital, so I suppose something will happen soon.
I was glad to know you had good results from your mammogram. I was surprised to know that you are having yearly mammograms, as I have only ever had two-yearly ones. My consultant surgeon told me that, if all is fine with this latest mammogram, I shall then have only three-yearly ones like women who have not had breast cancer. I think all treatment is slightly different. A friend of mine in London, with hormonal breast cancer, recently went for a two-yearly mammogram and she gets her results by actually attending the hospital for a results appointment. She was diagnosed back in 2001. Your sister-in-law is probably having a bone scan because Arimidex is very hard on the bones. Is she having a bone nucleide scan or a simple Dexa bone scan for osteoporosis? I had a bone nucleide scan before and after all my treatment.
I had a couple of Dexa scans at my own request because I noticed in 2009 that I had lost some height. I was diagnosed with osteoporosis. I am sure that this was a result of my cancer treatment. It was also a result of an over active parathyroid gland with which I was diagnosed in 2005 at the same time as my cancer .If it had not been for the breast cancer I would not have known about the over active parathyroid gland for which I had surgery in 2009. An over active parathyroid gland causes calcium to leech out of the bones into the blood. Some research connect an over active parathyroid gland to the cause of breast cancer or to breast cancer causing an over-active parathyroid gland. I think everyone having gone through breast cancer treatment should have a Dexa scan to detect osteoporosis. I think they should also have a full blood test for calcium levels and parathyroid hormone levels.
I hope all of you are doing well and that those of you in need of support or words of comfort will post and let us know how we can help.
Take care.
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Hello everyone
I have just been reading back over all the postings that there have been since I began this thread. There have obviously been more viewings than postings. It is good to know that people are still looking at our information, but it would be nice to have some more postings.
Looking back I was remembering certain names and the information given and this got me wondering about those of you who have posted are getting on. I want to say hello inparticular to FreddyDLH, Spammy61, Micheyd, Karen3, Newalex and Josephine. I have not forgotten Jinglebell, who posted recently. How are you all doing? I would love to hear from you all. I was wondering how Josephine was getting on, because I know she had some serious problems.
I try to keep up to date on everything to do with breast cancer and triple negative breast cancer in particular.
All of you might be interested in an article about "Three myths of triple negative disease". The link is http://bcwatchdigest-triple.evidencewatch.com/
I think this article will fill you with a great deal of optimism about TNBC. It has something to say that is very different from the usual doom and gloom.
There is another article about TNBC, but is does not say much that is different from the usual information, but it still makes interesting reading. The link is http://www.medscape.com/viewarticle/736911
Lymph nodes and axillary lymph node dissection appears to be back in the news. The only reference I have is Elsevier Global Medical News. 2011 Feb 8 2011, MA Moon. I think you will find this interesting.
I do hope that I shall hear from some of you and it would lovely to hear from some new people. You can say anything you like and we can also have social discussions. It would be nice to know what you do, where you live, what your interests are etc.
That is all for today.
Sylvia
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