Calling all triple negative breast cancer patients in the UK
With so many forums and threads on this site to go through for information, I thought it would be a good idea for all of us in the UK to form a forum specifically for us, and to give our details and experiences in a compact manner. Anyone else in the world is welcome to join in.
I was diagnosed with a very large tumour, triple negative, in 2005. I had pre-adjuvant chemotherapy, epirubicin, cyclophosphamide, and then docetaxel, followed by right breast mastectomy with removal of seven lymph nodes, only one affected, the sentinel node. I had three weeks of radiotherapy plus boosters. I had very few side effects from all of this treatment, except fatigue. I am still in the clear after 19 years. I still live with fear of recurrence or spread, but I live a normal active life. If I can do it, so can you!
I would love to hear from anyone in the UK or anywhere else in the world. It would be useful to find out how many of us are affected with triple negatives and to share information, comfort and support.
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Hi Sylvia
I was diagnosed September 2009. I had mascetomy in Oct with reconstruction using a muscle from my back and a tissue expander. Unfortunately the cancer came back in the skin of my new breast just a few weeks after the op - it was originally dismissed as a stitch, but I saw it grow on a daily basis, so they did a biopsy. So my chemo started in Nov 2009 (FEC x4) then I had another op in Feb 2009 to remove the new lump; then I had more chemo (Taxotere x 3), followed by 25 rads which ended late July. I am having more reconstruction next month hopefully.
I am suprised at the lack of information about triple neg on UK breast cancer sites. I have only met one other triple neg, at a Look Good Feel Better workshop, she was a similar age to me - I was 39 when I was diagnosed. The treatment for triple neg seems to vary from hospital to hospital you had your chemo pre surgery and I don't no why I didnt.
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Hi Sylvia
I was diagnosed September 2009. I had mascetomy in Oct with reconstruction using a muscle from my back and a tissue expander. Unfortunately the cancer came back in the skin of my new breast just a few weeks after the op - it was originally dismissed as a stitch, but I saw it grow on a daily basis, so they did a biopsy. So my chemo started in Nov 2009 (FEC x4) then I had another op in Feb 2009 to remove the new lump; then I had more chemo (Taxotere x 3), followed by 25 rads which ended late July. I am having more reconstruction next month hopefully.
I am suprised at the lack of information about triple neg on UK breast cancer sites. I have only met one other triple neg, at a Look Good Feel Better workshop, she was a similar age to me - I was 39 when I was diagnosed. The treatment for triple neg seems to vary from hospital to hospital you had your chemo pre surgery and I don't no why I didnt.
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Hi Freddie
I was very pleased to receive your message and I hope it will be the first of many to come on this forum.
I was sorry to hear that your cancer came back so soon after surgery, but the positive side is that your medical team were able to deal with it. I can understand how frightening that must have been for you. At least you have now been through the chemotherapy and have that behind you. It looks as though we had more or less the same chemotherapy, and this appears to be the standard treatment in a lot of countries. I was wondering what the F stands for in your FEC. I had three months of EC every three weeks and then three months of Taxotere (Docetaxel) every three weeks. The reason I had the chemotherapy before the mastectomy was because I had a very large tumour (7 cms) and the oncologist wanted to shrink it before surgery. It did shrink by a couple of centimetres. I think the reason you did not have chemotherapy prior to surgery is because your tumour was smaller than mine. I did not have reconstructive surgery, because I thought it would be easier to deal with any possible recurrence without a reconstructed breast. I can understand why you would want it, as a much younger woman. I had three weeks of radiotherapy.
It is now over five years since I was diagnosed and I have not had any problems, but I never take anything for granted. Somehow you learn to live with the possibility of recurrence and spread.
I hope everything will go well with your reconstruction next month and congratulate you on nearly being one year from your diagnosis.
When I was diagnosed neither my oncologist nor my breast consultant surgeon mentioned triple negative. They are both excellent professionals and I have no complaints about them. They told me that I was oestrogen and progesterone negative and HER2 negative. The HER2 negative means that you do not need the monoclonal drug Herceptin. They further said that this kind of breast cancer was difficult to treat because they had nothing to offer as a preventive, unlike hormonal breast cancer, which can, after the standard treatment of chemotherapy, mastectomy, and radiotherapy, be treated with oral drugs such as Tamoxifen and Arimidex.
I agree with you that there is a lack of information about triple negatives on UK breast cancer sites, but there is a lot more than five years ago. Back then I was the one who brought it up with my medical team. They were then very open to giving me whatever information they had. On the whole I did my own research. There is information on the internet if you type in "triple negative breast cancer".
I advise all women diagnosed with breast cancer to inform themselves as much as they can and to ask as many questions as they like at their appointments. My medical team told me that I was an exception in coming to my appointments with written questions. It is your life that you are dealing with and it pays to be informed.
Triple negative breast cancer has similarities with inherited breast cancer and it is a good idea to eliminate this factor by asking to have genetic testing for the BRCA1 and BRCA2 genes. I was told that I did not need it because I was sixty-two at diagnosis and it usually affects much younger women. It is also more likely to be inherited if several family members are affected, especially if they were affected at a younger age.
I feel that triple negative breast cancer needs more attention and swift attention. So much more is done with research for the 80% of women diagnosed with hormonal cancer. More attention is given to inherited breast cancer, which represents about only 4%. Triple negative breast cancer represents about 15%, but I have a feeling it is on the increase.
Does anyone have any statistics about the actual number of women in their hospital being diagnosed with triple negative breast cancer?
Wishing you all the best and best wishes to all those women affected by triple negative breast cancer.
I was not given my stage when diagnosed five years ago. What does stage mean and how is it different from grade?
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There is a mistake in my diagnosis profile. It was IDC that I was diagnosed with, not, of course, DCIS.
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Hi Sylvia
The 'F' in FEC stands for fluorouracil.
Grade means how agressive the cancer is, most triple negs are grade 3 (the highest grade)
The stage is a number of factors, how large the tumour is, the number of lymph nodes affected and whether the cancer has spread further than the breast/chest/underarm area. The Cancer Research UK website gives a very good guide to the stages of breast cancer.
I agree triple neg bc is 'the poor relative' and it is very rarely mentioned in the media. Naomi Campbell's mum had it about 5 years ago but I haven't found any other uk 'celebs' with it.
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Freddie thank you for your information. I think that I must have been stage 3. I think the extra chemotherapy drug that you had may have been because of the difference in age. All treatments are very individual
I was interested to learn about Naomi Campbell's mother. The statistics that we have show that black women and Hispanics are more susceptible to triple negative breast cancer than white women, although, overall, more white women get breast cancer in general than black women. The statistics also show that younger women, that includes white women, are more susceptible to triple negatives than older women. I find it difficult to come to any real conclusions about this, as I do not have any statistics. Although I get the feeling that it affects younger women in general, there are always exceptions.
From the bc.org forum and the information coming in, it would appear that triple negative tumours can appear out of nowhere and grow very quickly in a short time. This seemed to be so in my own case. The good news is that triple negative tumours respond well to chemotherapy and radiotherapy. The bad news, I feel, is that there is no preventive treatment against recurrence or spread. We urgently need something like the equivalent of Tamoxifen that is used for hormonal breast cancers. In the meantime, all we can do is lead a healthy lifestyle and keep our fingers crossed that we shall be OK.
I am glad to see that people are viewing this forum and hope that there will be postings. American women are so active on the forum and give tremendous support, advice and information to one another.
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Hi Slyviaexmouth uk.
Thank you for your post about triple neg breast cancer. I have not looked in the sites on triple neg for ages. I am glad you are doing so well and have five years behind you trouble free. I had triple neg breast cancer in November 2007 aged 55yrs then. I had lumpectomy, then another tiny tumor found that didnt show on the mammogram, and had to have mastectomy. I had four rounds of chemo and that was the end of my treatment, and was told by oncologist that he was confident it would not come back, but he didnt actually say I was cured, but I expect it was the all clear he gave me by saying that. I had a clear mammogram last January, and my follow up appointment is in Dec. I am doing very well thank God, and I just thought I would reply to your post as I too dont know much about triple neg, and it wasnt actually said to me that it was triple neg, just that I did not have hormone receptors. Where in Uk are you. I am in Scotland. How often do you need to have checkups now? Thanks again for your post and inspiration. God Bless. Mary.
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Hi Mary
I was so glad to read your posting on this forum, as I am very keen to know what is going on with women in the UK with triple negative breast cancer, and I think it is important to have our own forum.
I am so glad to know that you are doing well and that you are coming up to three years survival. I think you did the right thing having a mastectomy after a small tumour being found after your lumpectomy. I had to have a mastectomy because my tumour was large, but I think I would have asked for it anyway, because that way you know that all cancerous cells within the breast have been removed. Did you have any lymph nodes removed?I was surprised that you did not have any radiotherapy. Was it mentioned to you? Here, in England, the usual procedure is chemotherapy before surgery, especially if the tumour is large, or chemotherapy after surgery and then three or more weeks of radiotherapy. I was told that the medical profession do not talk of cure or remission. I was told at the end of my treatment that there was no visible sign of cancer. I started on three-monthly check-ups for three years and then went to six-monthly check-ups, which I am still doing. I have a check-up on October 1st with my consultant surgeon and then a check-up in April with my oncologist.
I was told at the end of treatment that there was no preventive treatment with triple negative breast cancer, but if there was a recurrence or spread, I would be put back on chemotherapy. I think it is very important for all of us who have been affected by triple negative breast cancer to keep our eyes open for any new information, research or trials, so that we are up to date with everything, should we have to face recurrence, spread or even another primary tumour. I think we all need to be one step ahead of the experts!
I have mammogram checks every two years and my next one is due 2011.
By doing research I discovered that triple negative breast cancers behave like inherited breast cancer. The difference is that with the inherited cancer, genes are damaged, but with the triple negatives the genes have somehow been silenced. The gene implicated is p53 and with this being silenced, cancer cells multiply.I was very glad to hear from you, Mary, and from Freddie, because, at the hospital, everyone I met had hormonal breast cancer, with or without HER2. I had finished all my treatment when I discovered the forum "Not a Typical Triple Negative" and then "Calling all TNBCs". I also discovered "Breast Cancer for Older Women" (which is for all types of breast cancer). I still look at these from time to time, but wanted to concentrate on a forum for the UK. I also discovered on the forums "Triple Negative BC & Older Women". There are two other women in my apartment block that have gone through hormonal breast cancer and a couple that I know in the neighbourhood, but I have not met anyone with triple negative.
I am in the south-west of England, in Devon. Whereabouts are you in Scotland. I keep hearing that the NHS is better in Scotland than in England. Have you been happy with your treatment?
Pleas keep posting and encourage others to view and post. I would be interested to know the percentage of women under 50 diagnosed, compared to those over 50.Best wishes to you, Mary.
Sylvia.
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Hi Sylvia,
Thank you for your post and I am also grateful to have someone to talk to about hormonal neg receptive cancer. I am in Strathclyde, Scotland. No I did not have radiotherapy, I think they maybe only do that if there is any lymph node involvement, which you say you had 1/7 nodes, but I am not entirely sure why some people have radiotherapy and others dont, so presume it had somthing to do with the lymph nodes. Did you find the radiotherapy very severe or was it not too bad? My sister -in-law has had hormone receptor breast cancer around the same time as me, so she had 26nodes removed, and radiotherapy and chemotherapy also. She is on arimadex for 5 years, and doing good. I had 0/10 lymph nodes, grade 3 poorly differentiated ductal carcinoma, no hormone receptors. I finished treatment in April 07 and did not have a check up for eight months after that, then every six months, and now it will probably be yearly. I dont know a great deal about the cancer because I was so scared to ask any questions and told them not to tell me anything bad, now I wish I had tried to find out, but still a bit scared, as I beleive myself to be cured and that helps me every day. I am not sure if the treatment is any different or better in Scotland to England. Yes I think I am happy enough with the treatment and try to keep positve that it wont come back when the oncologist said he was confident it wouldnt return. I was very reluctant to have chemotherapy due to all the side effects,when I fist visited the oncologist and he said I could probably do ok without it, but said the statistics for my type of cancer without chemo was that 67% would live and 33% would die so I decided to have it. I just had the four rounds of AC chemo, and oncologist said then it was too toxic for me so I did not have anymore, thank God. I have not seen the oncologist since April 2007 and as far as I know I dont need to see him again. I gathered from that statistic that they are not sure who would survive and who wouldnt minus having chemo.
How do you manage with your arm after the mastectomy? I have no grandchildren but often wonder if I would be able to push a pram, or lift a child. My husband cuts the grass, but I doubt if I could mow a lawn. I am able to do most things with my left hand and do not lift heavy shopping if possible. Thank you for your input on the boards and support. There is not much about triple negative cancer in UK and I wonder what causes it as I think the other breast cancers are caused by hormones in the persons body. Glad you are keeping well, and keep posting. Mary.
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Hello Mary
I was very glad to hear from you again and to learn about your details and experiences.
I did not suffer very much from my treatment With both the chemotherapy and the radiotherapy I was just more tired than I usually was. I did not suffer much from my surgery either. I suppose this could be because I had never been ill before. A diagnosis of breast cancer came as a big shock, especially because a large tumour appeared to come from nowhere. I hear this comment quite a bit from women diagnosed with triple negative breast cancer. The tumour seems to come from nowhere and grow very quickly. I was very frightened, was in pieces for a day, then became very quiet and started to think about treatment etc.
The first thing I did was to start serious reading about breast cancer and I read a book entitled The Cancer Directory by Dr Rosie Daniels. I would recommend it to anyone diagnosed with breast cancer or any other cancer. I delayed treatment for quite a while, and I would not recommend this to other women. I did see alternative doctors, and they were very honest with me, and told me to have the conventional treatment. Once I had made that decision I went through everything very calmly. I had an excellent woman consultant, and excellent woman oncologist, and an excellent homeopathic doctor. The homeopathic doctor was recommended to me by my consultant and I saw that homeopathic doctor for almost five years and found her really helpful. She gave me medication at each stage of my treatment, and I believe it helped me.
Before accepting conventional treatment I went armed with written notes full of questions to both my consultant and oncologist, and they were always willing to answer any questions. I found out about triple negatives through my own research and then asked my consultant/oncologist any questions. It was very frightening to discover that a diagnosis of triple negative breast cancer is generally considered not to be good. However, I wonder if it is any different to any other BC diagnosis. Women do survive it. The difficult thing is that you feel strange, even lonely, because you do not have the back up medication that women with hormonal breast cancers have. However, hormonal medication, such as Tamoxifen and Arimidex, do have their side effects, and do not work for everyone.
I also found out that most, but not all, triple negative breast cancers, are described as "basal like", but I am not sure what this means.
I did see a genetic nurse, buit she said that I did not need genetic testing for the BRCA1 or BRCA2 gene. She said this because of my age and because only one family member, my maternal grandmother, had had breast cancer and that was in old age. If anyone feels they would like to have genetic testing, they should press for it, because I think it may be easier to get it than it was five years ago when I was diagnosed. At least I discovered, on my own, that triple negative breast cancers acted in a similar way to genetic ones, because of silenced genes, not damaged ones.
One thing that did surprise me, during a conversation with my oncologist, was that she said my triple negative breast cancer may not have started as such, but may have mutated from a different kind.
I recently read that research was being done in trying to sensitise triple negative breast cancers to oestrogen, so that they could be treated with Tamoxifen. I would welcome any information about this from anyone viewing this forum. I do not know whether changing breast tumours like that is a good idea.
I have also been reading about proton radiotherapy that is less damaging than the radiotherapy that we currently have. Apparently it is available in other countries, but NICE is only just starting to think about it for the NHS. I think there may be certain hospitals here where you can get it.
Let us hope that some kind of preventive treatment will soon be available for us triple negatives. As for the cause of our cancer, we may never know, but there is almost certainly not one cause.
Is there anybody out there that was diagnosed with hyperparathyroidism at the same time as their breast cancer or before or afterwards? I was diagnosed with hyperparathyroidism at the same time as the breast cancer, and had surgery to correct this only last year. Some research indicates a connection between hyperparathyroidism and breast cancer. You can find information about this on the internet. There is also research about breast cancer and exposure to light at night. I have intiated forums about these on this site.
That is about all for today. Please keep this forum going. Sylvia.
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I am posting to say that I had my breast cancer check up yesterday with my consultant and I was told that everything was fine. Of course, I feel relieved, but, at the same time, I do wonder how much a consultant can tell from a physical examination. At the hospital where I go the doctors do not take blood tests or organise any scans. I would be pleased to hear if this happens in other hospitals or whether there are more stringent examinations. I get the impression that there certainly are in the United States. It is now five years, three months and twelve days since my initial diagnosis. I am due to have a mammogram in January 2011. I have been having these every two years since diagnosis, but after January 2011, I shall go to every three years.
I was also told that patients are usually discharged after five years, but I have asked to continue my check-ups next year. Like this I feel a bit more secure.
At the check-up I asked the consultant whether there were any preventive treatments in the pipeline for triple negative patients, and she told me "no". There are the PARP inhibitors, but they are only in the trial stage and she said they were years away from being available for patients.
I was wondering whether any of you have recently read about scientists carrying out research that will enable them to sensitise triple negative tumours to oestrogen, so that they will become positive and can then be treated with Tamoxifen! I must admit I was surprised and somewhat concerned about this. I do not feel happy about this kind of tampering and wonder whether it is being done in the name of cheapness, as Tamoxifen is very cheap, but not without side-effects. I would welcome your views on this, as I am worried about the idea of changing one tumour to something else. For those interested please have a look at http://www.sciencedaily.com/releases/2010/07/100708152105.htm.
I did mention the above information to my consultant, and then she told me something else that made me feel concerned. She told me that a lot of research has found that long term use of Tamoxifen may increase the risk of a triple negative tumour being found in the other breast to the one being treated for hormonal positive breast cancer! Needless to say I researched this as soon as I got back home, and found some information at http://www.breastcancer.org/treatment/hormonal/new_research/20090825.jsp. Long term use of Tamoxifen is considered to be five years or more. I know people that have been on Tamoxifen for more than five years, but, in the past few years the pattern seems to be two or three years on Tamoxifen and then on to a drug such as Arimidex, which I think is known as an aromatase inhibitor. They both deal with oestrogen but in different ways. Apparently research also shows that post-menopausal women with hormone receptor positive breast cancer are better off taking an aromatase inhibitor drug, after initial treatment, rather than Tamoxifen.
I think that is enough for today. I hope to hear some comments. The more people that come to this site the better we shall be able to judge how many women are being diagnosed with triple negative breast cancer.
To all of you going through treatment be positive, you can get through this as I did. As you go through chemotherapy, surgery and radiotherapy, keep looking ahead to the date when it will all be finished.
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Hi slybiaexmouthuk, Just coming back on to post to say how pleased I am that your check up went fine on the 1st Oct. and long may it continue. I think it says somewhere that after five years there is less risk of re-currances with triple neg breast cancer, but still it does not stop us from worrying about it from time to time.Yes its hard to know how much they can tell from a physical examination, and they do not do anything for the mastectomy side liked MRI or anything, but they must know if anything would be not right. My next check up is in Dec and I had a mammogram last January, which means I only now have yearly checkups up here in Scotland. I was supposed to have one in June there, but it got cancelled til Dec. I do tend to feel a bit left out in the cold when that happened, and long time I have to wait, but they must be confident that things are ok. Have you had any of your appointments cancelled for six months at a time? I think in a way we are lucky not to have any hormonal treatments because the side effects from armidex are quite severe on the bones and things, so we dont have to put up with that. Its good you are getting follow up checks after the five years are up. It is coming up for three years since I had my mastectomy in December, 2007. so am hopeful the cancer is gone for good now. I also meant to ask you if you got offered a clinical trial after your had your treatment. I got offered one but I declined, because I dont like taking lots of medication with all the side effects from it etc. I hope some more people will come on the boards too and share their experiences. Thank you for starting this post and support. God Bless. Mary.
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IF you want UK stats you could start here:
http://info.cancerresearchuk.org/cancerstats/types/breast/incidence/ and here:
http://library.ncin.org.uk/docs/091019-wmciu-all_breast_cancer_report.pdf
please forgive me if these links don't work, i am a bit technologically challenged especially when i should be asleep! also try Dr Google, there is a lot on the net (much of it second or third hand but a bit easier to read than some of the primary sources). Also various documents about standard pathways for care and decision protocols that different NHS trusts have made publicly available
Can't help you much with personal stories on the triple negative experience as I'm very hormone-sensitive. You could ask on the UK forum or Macmillan site.
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Hello hymil
Thank you for your post and for the information on sites. I have looked up some of them and found them very helpful for the statistics on breast cancer rates. It looks as though breast cancer rates are still rising at present, but, because of earlier diagnosis and mammograms, not to mention effective treatment, more and more women are living in remission for long periods.
I wish you all the best.
Hello Mary
Thank you for your recent post.
I have never had any appointments cancelled. I have an excellent oncologist and consultant, both women, and they have given me excellent care and have faithfully carried out all check-ups. I had about three years of alternating three monthly check-ups, and since then alternating six monthly check-ups. Having seen the consultant on October 1st, I shall see the oncologist in April 2011. I shall have my two-yearly mammogram in January2011, and then go for three-yearly mammograms.
I was not offered any trials during my treatment, but half of my chemotherapy was with docetaxel (taxotere), which I think was the latest drug at the time, along with paclitaxel (another of the taxane drugs, which includes docetaxel). I can understand your reluctance to go in a trial, because, like you, I do not like filling my body with drugs. I was very unhappy about having to take chemotherapy drugs, but I had no choice. Before that I had taken only a few antibiotics in the whole of my life.
I agree that, in a way, we may be lucky that we are not taking any hormonal medication. As you say, these all have side-effects. I know that Tamoxifen, and Arimidex, both have nasty side-effects, and the pattern now seems to be two years of one and then two years of the other.
I think the problem with a triple negative diagnosis is that we read such pessimistic things about it. All we can do is live one day at a time and do our best to keep fit and healthy.
That is all for today.
All the best.
Sylvia0 -
Some hospitals do put quite a lot online. Each health region should have a committee to coordinate Cancer care for that area, in Cancer Network Site-Specific groups (site in this context means body-part eg Breast cancer as opposed to, Colon cancer) search keywords: [Cancer service network] and [place] Here's one example http://www.aswcs.nhs.uk/main.cfm
from which you can get to regional protocols like this one: 135 pages and will definitely cure insomnia! but detailing exactly what care you can expect eg radiotherapy schedules, followup appointment frequencies etc. http://www.aswcs.nhs.uk/documents/website/SSGs/Breast/ASWCS%20Network%20Agreed%20Breast%20Cancer%20Referral%20and%20Clinical%20Guidelines%20Final%202010.pdf
Here's another document i found from Liverpool, it's bit unwieldy at first but I found it useful to compare with the treatment I was being offered, for me it offered a detailed insight into the question Why do they want me to do radiotherapy after mastectomy?: http://www.cms.livjm.ac.uk/2nrich/docs/treatment/christie.pdf (hope that works!)
The following guidance is from NICE and represented national best practice from initial suspected diagnosis and referral through follow-up and discharge: feb 2009 www.nice.org.uk/CG800 -
I thought I would do a post today, to say how pleased I am that people are looking at this thread, but I would love to see more people posting. The more input we get, the better informed we all are. Nothing that anyone has to say is irrelevant, so please do not be shy about posting. We all learn from other people's experiences and information.
I was wondering whether any of you were given causes or risk factors for your triple negative breast cancers or breast cancer in general. I was not given any causes or risk factors for triple negative breast cancer in particular, only general causes or risk factors. You probably know them already. The following were mentioned to me.
Early onset of periods.
Late menopause (55 and over).
Not having had any children.
Having had children late in life.
Being overweight.
Smoking and drinking alcohol.
Perhaps diet, especially too much fat, meat and dairy products.
Perhaps stress.
Chest X-rays as a child.
A strong family history of breast cancer.I think a lot of these would apply more to hormonal sensitive breast cancer and the oestrogen factor. However, my oncologist told me recently that my triple negative breast cancer may not have started as that and it may have mutated from something else. That is quite difficult to comprehend.
I discovered through my own research the possible connections with an over active parathyroid gland, exposure to light at night, and even a connection with root-canal work. I wonder whether we shall ever know for certain what caused our breast cancer, but am convinced it will be multi-causal.
Of course, with triple negative, there are the statistics about younger women being more affected, and white women being less affected than black women and Hispanics, especially in the States. I would be interested to hear some of your own views and experiences.
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Thank you for starting this thread and giving us the chance to pass on our experiences in the UK. I have found this site useful for both support and knowledge....something that I never found on any UK sites! I was diagnosed in March and found the lump myself. Within 3 weeks I was starting chemotherapy.I was given the choice and decided to have it first so they could monitor the tumour and change the chemo if necessary. It was scary living with it but thankfully after 3 sessions we knew it had shrunk. I was due to have 3 courses of FEC100 and then 3 of Taxotere but I reacted badly to the latter so my oncologist decided to continue with the FEC. As she put it I was "having such a good clinical reaction".Within a month of my last chemo I was undergoing a lumpectomy and full clearance as I had 2 positive lymph nodes on diagnosis. When I got the results back post surgery I found out that all lymph nodes were clear and there was only 6mm of tumour left. Unfortunately I needed further surgery as there was some DCIS in one margin but that is all clear now and I go for my radiotherapy planning next week and hopefully start end of October. I will have 16 in all spread over 6 weeks but at least there is a light at the end of this long tunnel!
Bone scans and CT scans were clear back in April and I will be monitored every 6 months for at least 2 years. I know its something that will always live with me but in some ways many good things have come out of this.On the bright side I have lost 20lbs (its not a diet to be recommended lol) and my hair is coming back darker but unfortunately the grey bits are also there! I have had wonderful support from family and friends. I dont know where this came from as we have no history in the family but I plan on exercising more, cut down on alcohol and try not to get stressed
Pam
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Hello Pam
I was so pleased to read your post with all its information and views. It is exactly what we need on this thread. With breast cancer we all know the basic treatment of a mixture of chemotherapy, surgery and radiotherapy, and then many years of check ups and mammograms, but we all experience these and react to these in different ways, and that is why it is useful for us all to communicate with one another and support one another.
I was interested to know that, like me, you had chemotherapy before surgery, medically known as pre-adjuvant chemotherapy. This seems to happen a lot now, especially when the tumour is large, as it often is with triple negative breast cancer. As you say, it is frightening, doing it before surgery, because you are living with the tumour all those months. However, you also know or keep your fingers crossed that the chemo is shrinking the tumour.
It would appear that many women have problems with the taxotere. The only side effect was a browning of the toenails and the loss of eyebrows and eyelashes, but I did not feel ill, just tired. Ironically, when I started the chemo with three sessions of EC (epirubicin and cyclophosphamide) I was told that epirubicin was the worst of the chemo drugs. Again, I had the predicted side effect of hair loss after the second session, but nothing else other than tiredness. I do know that some women are unwell to the point of having to stop the chemo or try a different drug. To all those newly-diagnosed women you just have to decide to have the treatment and deal with your own personal side-effects and problems as they arise.
Everything seems to be going well for you, Pam, and we, at this site, wish you all the very best. Good luck with your radiotherapy treatment at the end of October. Radiotherapy is tiring in that you have to keep going backwards and forwards to the hospital, usually on a daily basis. I had three weeks of radiotherapy with 15 sessions plus boosters. Going in every day, five days a week, was tiring, but the actual treatment is very quick. Going in to the radiotherapy room, placing yourself on a table of a large machine, and then being carefully put in position by a radiologist, can be quite daunting, but you soon get used to it. The radiologist leaves the room, and switches on the machine, and the treatment is soon over. I used to close my eyes and count the seconds as the machine functioned. Some women feel very tired during treatment and suffer with their skin, but you are given creams to help you with this.
Being diagnosed with breast cancer comes as a huge shock to all of us, but somehow we learn to accept it, go through the treatment, come out of all that and somehow move on with our lives. It is not easy, because of fear of recurrence or spread, but we do it, with a flare up of anxiety before each check-up or mammogram. As the years go by, we manage to put it at the back of our mind, most of the time, but knowing that we cannot take anything for granted. A diagnosis of breast cancer does change you for ever. TNBC is particularly difficult, because we feel very isolated and alone, all the more so because, for the moment, there is no preventive treatment, after we finish with chemo, surgery and radiotherapy.
Please keep up the good work of viewing and posting.
Sylvia
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Thanks for the reply....it's good to see this keep going with posts of different experiences.
The treatment does seem to differ from patient to patient. My lump was only 2.5cm so I think the reason why chemo first was suggested was because they knew it was TN. I wanted to know it was working and knowing that there is nothing else that was important to me. I met one other lady during chemo who was TN and she had surgery first then chemo (TAC) and then rads. I reacted to the Taxotere as soon as they gave it me so they had to stop the treatment. I have a friend who is an oncology pharmacist and she said it happens in around 1/33 cases.My rads will be spread over 6 weeks and I will have 16 in all. It's a bit of a drive to Cheltenham but I have friends and family who will help out. I cannot fault the treatment at Worcester and my surgeon and oncologist are wonderful. I go with a list of questions every time I see them!! I have been reading up about TN as I wanted to be informed but we all go into this with different ideas about how much info we want to know. I had my wobbly moments in the beginning. My son has just gone off to medical school and I did wonder if I would see him qualify but I have learnt to live with this and as you say we continue to do so.
Thank you for the info on the radiotherapy....another new experience to get to grips with!
Pam
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Thank you Pam for your post and for relating your experiences.
I hope all will go well with your radiotherapy and am glad to hear that you have help from friends and family with your trips to Cheltenham. It is the travelling every day that gets exhausting. It was not too bad for me as I had to go from Exmouth to Exeter to the Royal Devon and Exeter Hospital. I forgot to mention that if everything is the same for you as it was for me, you will be given a hospital gown as well as cream when you go for your measuring up. You will keep this for the duration of the treatment, and when you arrive at the radiology department you will be directed to a changing room to remove your top clothes and put on the gown, in preparation for your treatment.
Like you, I like to be very informed and I have lost count of the number of books that I have read since diagnosis. Like you, I went with a long list of written questions about everything to do with breast cancer and treatment. I also looked at all the research on the internet. There is a lot more on the internet about TNBC and I keep myself up to date. At the hospital I was told that most women do not ask many questions. However, I think that will change because of the internet.
I also thought that I was going to die, especially because my tumour was so large and they said that negative tumours were hard to treat. I now take one day at a time.
I have just been reading about the latest chemotherapy for metastatic triple negative breast cancer. Apparently TNBC responds well to a drug known as cetuximab when it is added to chemo. I have also read that cisplatin and cetuximab work well together and prohibit EGFR, which I think must be something that grows on TN tumours. Its full name is epidermal growth factor receptor.
Will you get checked for osteoporosis, which is often a result of cancer treatment. All you need is a DEXA scan, not to be confused with the bone scan that we have to see if the cancer has spread to the bones.
That is all for now. To all of you TNBCs please keep viewing and posting your experiences and sharing them with us.
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Hi.... I have just been diagnosed with triple negative. I had surgery 2 weeks ago to remove lump and 11 out of 15 lymph nodes affected. I have no family history of breast cancer. I am starting chemo next week for 6 cycles, then will have radiotherapy and then a mastectomy is planned. I am absolutely petrified although not showing it outwardly because i have two little boys. I'm 44. I'm almost too scared to search the internet for answers as I'm too frightened. My consultant did say that we have to hope that I'm receptive to chemo otherwise we are in a totally different ball game. That really scared me. I'm so pleased I've found this website as I suddenly feel that I'm not alone.
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Hello Micheyed
I am so sorry to hear of your diagnosis and I can understand your fear. It is something that all of us go through and I am sure that you will get a lot of support here. I was absolutely terrified and had a good cry and said that I could not face the treatment. In fact I delayed treatment for quite a time,but I would not advise anyone to do that. You can get through this.
Try not to take too much notice of anything you read. Everyone is different and everyone's cancer is different. Just take each stage of your treatment as it becomes due, and do not think about the rest of the treatment. You have got through surgery to remove a lump and I am assuming that the affected lymph nodes have been removed. That is now behind you. Your next challenge is the chemo. If I were you I would ask what drugs or combination of drugs are going to be used and what side effects there will be. Remember, we all react differently to those drugs. My own personal opinion is that is better to be informed and to know what to expect, then, whatever happens is less of a shock. Most upsetting to me was my hair starting to fall out after the first chemo treatment. You can ask to wear an ice cap during treatment, but I understand it is quite gruelling.
You have to be careful on the internet and make sure you are looking at reputable sites.
I hope you have been given a cancer-care nurse, who is supposed to support you all through your treatment, and from whom you should have a phone number so that you can contact her when you feel the need. You can also phone Cancer Research and other charities for support and information.
It must be very difficult hiding your fear from your two little boys and you have all my sympathy.
I hope the chemo will be successful. There are marvellous drugs available today and so far, on the postings on breastcancer.org I cannot remember reading of anyone having a chemo failure, but then there are many threads here about chemotherapy.
I wish you all the best. Please let us know how you get on.
Sylvia
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Hi - just introducing myself to you ladies in the UK.
I am from West Yorks and was diagnosed with triple neg IDC in September 2009 at the age of 46. I was given neoadjuvant chemo and had epirubicin and cyclophostimide X 2 and the Taxol X 1 and Taxotere X 1. I was supposed to have 8 rounds of chemo but my treatment was withdrawn half way through as the regular MRI's revealed that the chemo was not shrinking the tumour. So, I had a lumpectomy on 4th Jan 2010 and then 20 rounds of radiotherapy. I am back at work now and trying to get on with my life - but of course the 'fear' that this cancer will return is always with me (especially since the chemo did not work). I did have genetic testing for BRCA as my mum had ovarian cancer, my maternal aunt with breast cancer and my maternal uncle died recently with pancreatic cancer. They did find a mutation in the BRCA 1 test of 'unknown significance' so I was invited to take part in the BRCA 3 trial in the UK.
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Back from the radiotherapy planning and marked up all over! Start 1st Nov and finish 10th Dec so roll on Christmas and 2011
.Sylvia - I will ask about the DEXA scan. Its not something that has been mentioned so thanks for bringing it to my attention.
Karen3 - I saw your previous posts re your experiences when I was looking for info at the beginning of my treatment so I knew about your issues with chemo.At least they didnt put you through all of it and got on with the other treatments that are available but I understand the worry.....something we all live with in one way or another.
Micheyed - sorry to hear about your diagnosis but you are not alone. I found this website a source of comfort and info when I was looking for some but as Sylvia says be careful if you do look on the internet.The Macmillan info is also very good and they have support available if you want to talk to someone.In the beginning it can be difficult to take in and the "wobbly moments" are natural along with wondering what the treatment will be like. Take it a step at a time, everyone is different and your reactions will be different to others but your hospital should explain about the drugs and the side effects. My hair fell out after about 10 days and in the end I pulled it out as I couldnt cope with the gradual loss and the mess it made...... I put it in the garden for the birds to use in their nests.....recycling in a different way! I have been wearing scarves and sometimes the wig that I chose. The wigs look so natural that people who didnt know about me thought I had just changed my hair.
My thoughts are with you as you start your chemo and the next step towards the end of your treatment.
Pam
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Karen
Welcome to our thread. It was most interesting to read about your case. I do remember you from another thread, probably NOT A TYPICAL TRIPLE NEGATIVE or a similar thread. I picked up on your name because you were from the UK and because, like me, you were a teacher.
I was glad to know that you are getting on with your life, but can understand your fear. The radiotherapy, we are told, does a marvellous job of mopping up of cancer cells, so always try to look on the bright side.
I was very interested to read about your genetic testing for BRCA and the fact that they had found a mutation in the BRCA1 test of unknown significance, so that you were invited to take part in the BRCA3 trial in the UK. Am I to understand that there is now a BRCA3 gene, in addition to BRCA1 and BRCA2? Are they tying to find out if there is a possibility of hereditary cancer? I did ask for genetic testing, but was told it was not necessary because I developed breast cancer at 62. My maternal grandmother died of metastatic breast cancer at age 70. Of her nine children, two sons have died of prostate and lung cancer, another son is dying of throat cancer, and another one probably has prostate cancer. My brother died of bowel cancer at age 56 and a deceased cousin had prostate cancer. I was told this was not a strong family history. It is strange how these cancers seem to mutate. As I have said before, my oncologist told me that my triple negative breast cancer did not necessarily start as such, but that it could have mutated from something else. So far, apart from my maternal grandmother, I am the only person in the family to have been affected by breast cancer.
Pam
Good luck with your radiotherapy starting on November 1st. At least it will all be over for Christmas.
Do ask about a DEXA scan and the possibility of osteoporosis or bone problems from treatment. Experience has taught me to keep being informed and asking questions, otherwise you will not necessarily be offered more than the very basic information. Some women do not want more than the basic information.
Micheyed
I just wanted to let you know that we are all thinking of you and supporting you. You will get through chemo. I chose to wear a wig all through treatment and people thought it was my own hair. At home I wore ready-to-wear turbans and they looked very smart. They were similar to the ones the French writer Simone de Beauvoir used to like to wear. They kept my head warm at night.
Sylvia.
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Hello everyone
I was just wondering how you all are, as this thread is now very quiet. I hope all is well.
I would like to say a special hello to those who have posted, FreddieDLH, Jinglebell, Spammy61, Micheyd, Karen3 and Hymil. Please let us all know how things are going.
For anybody else viewing this thread, please share your experiences with us about diagnosis, chemotherapy, surgery, radiotherapy, lymphodema, any personal tips for dealing with treatment.
Here are a few of my own personal tips. When going through chemotherapy it is important to keep drinking plenty of water. I used to sip water all day. Canned pineapple in its own juice is very beneficial for mouth problems. Ginger and lemon tea and ginger biscuits help with any feelings of nausea. Rather than medication, I would eat plenty of prunes, especially canned, and figs at the first sign of constipation. There is special toothpaste and mouthwash to deal with dry mouth. For scalp problems following hair loss I found massaging with pure avocado oil before shampooing with a baby shampoo to be very helpful. Does anybody else have any tips?
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Hi all
just to reply to Sylvia - it seems that, like me you have strong evidence of 'clustering' in your family. I would ask your Oncologist to be referred for genetic councelling / testing. As a result of this and the finding of a 'mutation of unknown significance in BRCA 1' I was invited to take part in the BRCA 3 research which is ongoing. they have evidence for BRCA 1 and BRCA 2 at the moment and they do know other mutations exist. But, they need to provide a strong database of evidence before they announce a new BRCA gene. This could take years to accumulate. I am taking part in The Genetics of Familial Breast Cancer Study, Institute of Cancer Research, Sutton, Surrey. The pathology of my tumour suggests a genetic link too - the fact that I am triple neg and also the poor response to chemo suggest a genetic mutation.My Oncologist said that the research was unlikely to help me personally though - I may / may not hear anything back from them. But, I figured that if my experience can help at all in furthering research in to this disease then all well and good.
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Hello Karen
Thank you for the information about the trials for a possible BRCA 3 gene. I shall mention it to my oncologist next time I see her. I did ask for genetic testing about two years ago and I did see a genetics nurse, but she told me that she would not be referring me for genetic testing because of my age at diagnosis (62) and because there was not a strong enough family factor. The fact that my grandmother had it in old age also went against testing.
I feel that we should all be genetically tested. I think they do this in the US.
I think I read somewhere that BRCA1 was associated with hormonal breast cancer and BRCA2 with triple negative breast cancer. Do you know anything about this? I also read that the difference between inherited breast cancer and triple negative was that in the former the genes were damaged and in the later they had been silenced.
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Hello everybody,
I have noticed that the women posting are all younger women, so this seems to bear out the fact that triple negative breast cancer is more likely to affect younger women. I was wondering if anybody has any ideas about why this should be, or whether any of you have been given information about this. I would love to hear from any older women, so that we can all get an idea about what is going on. Are older women more likely to get triple negative breast cancer if they are very fit and healthy and look much younger than their age, and perhaps have bodies that have not aged so quickly.
I welcome your comments.
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Hello everybody,
I thought I would check this thread after a few days absence to attend the funeral of an uncle who died of throat cancer recently (a most horrific cancer) and noticed that there had been no postings or viewings. I hope this means that those of you going through treatment are going through without too many problems and that there have not been too many newly diagnosed cases of triple negative breast cancer. This thread will only be as good as its postings or viewings.
I listened to Weekend Women's Hour a few weeks ago and they were talking about breast cancer, but there was no mention of triple negative breast cancer. I also watched a programme about the human genome on television. Breast cancer was mentioned, but again, no mention of triple negatives. We are not getting enough publicity or attention
A friend of mine was diagnosed with hormonal positive cancer a few months ago and had a lumpectomy. She is now going through radiotherapy. I was surprised when she developed oral thrush after just two sessions of radiotherapy. Has anyone else experienced this?
I was wondering how many of you took up the offer of complementary therapies during your treatment. I was offered aromatherapy, reflexology and head massage, but did not feel the need. Did any of you have any one to one counselling? I had one session and found it helpful. Did any of you go to relaxation classes? Did many of you suffer from lymphodema? Did many of you need physiotherapy after surgery?
I look forward to hearing from you.
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