Calling all triple negative breast cancer patients in the UK
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Hello everyone,
I forgot that I had another snippet of information. I read this past week that bevacizumab (Avastin) plus paclitaxel (Taxol) works about as well for TN metastatic BC as it does for non-metastatic TNBC.Good night from Exmouth.
Sylvia.0 -
Hello Everyone,
I thought I would add another snippet of information that I came across this week. It was that only one in fifty women in the UK knows that the risk of breast cancer is highest in women over seventy. Most believe that middle age women are the most at risk.
It is also those over seventy who are the most ignorant about the disease and are the least likely to carry out the necessary checks or request screening.
What I find odd is that if the over seventies are the most at risk, why does mass-screening for breast cancer stop at seventy in the UK? After that age, if you want to be screened, you have to make a special request.
The latest statistics for breast cancer in the UK, according to one article, is 48,000 a year. Another article quotes 50,000 a year. Breast cancer causes 12,000 deaths each year. I think these statistics are alarming and much more needs to be done, especially about causes and prevention. Is there the political will to do this?
In the over seventies, about one in thirteen will develop the disease, compared to a lifetime risk of one in eight for all British women.
There are many different risk factors quoted for breast cancer, such as weight and alcohol, but age is the most significant risk factor.
I do not think that this is the case for triple negative breast cancer, which seems to affect mainly younger women. There is such an urgent need for more research about TNBC and its treatment.
That is all for today.
Sylvia0 -
Hello Everyone,
I hope everyone is doing well, Maria, I hope you are healing up quickly and painlessly from your surgery. I went to my onc appt yesterday, now I won't see him for 3 months. Sort of weird, I'd rather still go for a visit every three weeks but I guess this is progress. I have my appt tomorrow for the Radiation dr so I'll get started on that quickly, I hope. And on a bright note, as a celebration of my treatment ending my husband and a couple of friends wanted to take a trip and it looks like we've decided on Paris and Rome in March on next year. We'll be booking soon and I just hope I've got enough hair on my head, really hate the thought of lugging that around.
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Hello mcrimmon 324,
I was so glad to know that all is going well. You will soon have all of this behind you. What a good idea to plan that special trip! It will give you something to look forward to and to work towards.
Is there anything special going on where you are to mark October as Breast Cancer Awareness Month? There is nothing where I am.
Best Wishes,
Sylvia.
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Slyvia, There is Pink EVERYWHERE to mark Breast Cancer Awareness Month. You can't escape it here. It is very popular, I believe and I'm not a real big sports fan, I'll have to double check with my husband but sports teams will wear a little pink this month in thier uniforms, it's always all over the news OR maybe this year I'm noticing it a lot more than I ever did.
Just wanted to mention something, yesterday at my onc appt, he mentioned that he plans to look for clinical trial for me to enter - something about vacinations. Apparently they have begun to take your own tumors and make vaccinations from them for you, however, there is not a trial for early stage TNBC but I do believe he said they have a few for Metastatic BC so one should be available soon for early stage. I think I'm going to google and see what I can learn and hopefully he'll find a suitable trail for me. I did ask about Zometa and Metformin, he didn't seem to want to put me on either, I think I'll ask the RO about that tomorrow and ask my onc again the next time I see him.
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Hi girls...thanks for all your kind wishes..
Today I read the last couple of pages (Sylvia you are always so busy digging up new info!) and I must say I found the association in the Swedish study between poor gums/missing molars and breast cancer very interesting. Like BernieEllen,I have had problems with my gums since my 20s, had gum disease during my last pregnancy, (when I was 37/38), which couldn't be treated with the usual antibiotics due to my pregnancy, and I have lost a number of molars over the years...As a result of all this I visit the dentist about 3 times a year for thorough cleaning, and try to look after my teeth as much as possible....I certainly seem to prove the point don't I?
The link to the page on radiotherapy in the Canceractive site is very interesting and crucial for me right now, as radiotherapy will be the next stage in my seemingly never-ending journey. So many thanks for that too, Sylvia! Yes I did have a significant number of lymph nodes removed on the right, and in fact it is my right arm pit which seems to bother me most, especially at the end of he day..it is quite numb and this numbness seems to spread down my right arm a bit...I presume this is to be expected, but I'll ask the bs about it when I meet him on Friday morning.
Love and best wishes to all xxx
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Hello mccrimmon324
I was interested to know that there is pink everywhere where you are. I feel that here the month is going unnoticed.I was most interested to know what your oncologist told you about vaccinations and clinical trials. There is quite a lot on the internet about vaccinations, but the idea of taking your own tumours and making vaccines from them is intriguing. Let us hope that there will soon be trials for early stage TNBC. It is good that they have them for metastatic breast cancer, as that is obviously the most challenging. I do hope there will be swift progress for TNBC because I think it is so tragic that young women are being affected by this. It must be so difficult when you have young children to cope. I still remain convinced that it is somehow connected to the birth control pill.
Please keep us informed about anything your oncologist tells you. I know we have the treatment, but it is awful treatment, and we need better.
Good luck when you start your radiotherapy.
Sylvia.
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Hello Maria_Malta
I was glad to know that you had read the information about poor gums etc. I believe there is always some kind of connection between health problems and ending up with breast cancer. I know that gum disease is very serious and can lead to all kinds of health problems. It would be great if we could get the laser treatment, but here in the UK everything lags behind. I feel this is a country that lives in the past and cannot look forward. I go to the dentist for cleaning etc. four times a year, and have always looked after my teeth.I was glad to know that you have been reading about radiotherapy on CANCERactive. I find the site incredible.
Your journey will soon be over. Most of it is behind you. Once you start radiotherapy, the days will go very quickly.
Do not worry too much about the numbness in your right armpit. I went through the same feeling, and it does get better. Talk to your breast surgeon about it on Friday.
Keep looking forward.
Sylvia.0 -
Maria, I am interested in knowing how your surgery turned out, it sounds very interesting. I may ask my surgeon about it. Do they still take all of the breast tissue and just use the skin? How is your recovery? My surgery for bmx is nov. 30th, no reconstruction right away. BS said he was going to leave everything as flat and smooth as possible, not leaving extra skin. I need to do a little research on future reconstrustion to see if this is the best way. I think they usually like to leave a bit of extra mskin for future reconstruction.
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Sylvia, did you read about the new zometa study that they mentioned on this site? I am not really sure if I am considered younger or older at the age of 44. Not even sure if I am post or pre menopausal, I think post because of chemo, but was pre or peri before I started chemo. I think they are saying Zometa is good as preventing mets if you are post menopausal but not good if you are pre, which I seem to think is the opposited of some previous studies. I am so confused! I am doing monthly zometa and I hope it is good for me! I do trust my doc and he has said he has good results with patients on it. I am also taking a blood pressure medicine called proponal, a beta blocker that is suppose to be good for preventing mets My blood pressure and heart rate shot up after being put on Avastin, so I asked if I could be put on a beta blocker to control it.
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Are there vaccination trials for triple neg metastatic patients?
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Bak, my onc didn't really go into what trials are currently available but he did say that there are more and more every day but they are for metastic BC first and is hoping one will open for early soon. I think I'm going to email him a little more about it sometime this week, if/when I get an answer I'll let you know. I tried to go onto the TNBC Foundation and go to the clinical link but reading all the info about how TN is more agressive, blah blah blah, freaked me out and I don't want to read it. I'll just stick with with doc has to say. I'm going to the RO tomorrow so maybe I can ask him too. Good luck with your surgery and the end of your chemo.
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Sylvia,
I read about the Duke University find but haven't found any additional information yet. It sounds very positive to me!
McCrimmon, my surgeon left me with absolutely no excess skin (I had unilateral.) I have had very little problem with radiation - I have 3 boost treatments left and have worn a bra right on the radiated area every day. My radiation oncologist advised not using any creams unless I developed itching so I have not used anything at all on my skin. I wash with a goat's milk soap or Ivory soap without a washcloth and do not rub the skin with my towel. I do treat myself everyday to a smoothie with protein powder that has 45 grams of protein. I had read somewhere to aim for 70 grams each day while undergoing radiotherapy. Please keep us advised on the clinical trial using vaccines - I am very interested in that. I am soon entering a clinical trial with eribulin to hopefully reduce my chances for recurrence. I have one more scan before I can start - a brain MRI.
Maria, I'm glad you are feeling ok. It sounds like your surgeon is very progressive - I would love to have a "start" on reconstruction. My oncologist has advised me to wait a year from radiation. Some women seem to be very happy with nipple tattoos. I think I will get a reconstructed nipple as I have had a unilateral MX.
Hope I'm not leaving anyone off - I am working (as usual!) and if I go back a page to read, I lose my post - and my memory is still rather challenged so I mix things up if I read back several pages then post!
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bak & christina, the point about the bmx I had is that it doesn't actually count as a "reconstruction" as such, and, unlike implants, it can precede radiotherapy although the rads might apparently interfere with the nipple, but I wouldn't have had a nipple anyway if I'd had a traditional mastectomy! For obvious reasons this procedure works best for women with big breasts....since I wasn't thinking of reconstruction, this solution appeared to be the best one for me. Look up 'Goldilocks Mastectomy' on Google and you'll get the general idea.....
One thing I should add is that unlike reconstruction the surgeon has no control over the size of the breasts you end up with.and once the inflammation goes down they will be pretty small I think...but this doesn't bother me one bit afer a lifetime of big boobs!!!! And it means I can get away without prosthetics.
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Hi to you all. Now done 17/30 rads, so pleased to be over the half way mark. Very red and slightly sore. The cream they gave me has stopped the itching. Stopped wearing bra's, moved into comfy cotton camisoles.
Hi Sylvia, don't know why things double post, nearly always does it with photos. Love the wine glass theory.
Keep the spirits up ladies, one day we may all be able to lunch together.
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BernieE congrats on passing the half way mark! I can imagine a bra would be very uncomfortable!
Maria-Your procedure still sounds very interesting to me. I am probably average sized for my body type (ok, overweight!). I would rather have smaller breasts than larger ones, when I am healthy I like to jog, so I don't need to much extra jiggling! I may find I like being flat, but worry that I my will look concave chested because my belly is not flat. I saw "goldilocks mastectom" online and thought it looked great! Im not worried about nipples either way, I am funny about mine and oversensitive, I am thinking I will like fake nipples or none at all!
Thanks McCrimmon. My doc is going to put me back on Avastin after all of my surgeries and rads, I am always looking for other options also to reduce risk of recurrence.
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BernieE, well done you're over half way there!!!! Will be asking your advice on radiotherapy soon as should be starting in about a fortnight or so I think.
Went to hospital today and surgeon v pleased with my progress..am healing well, 'boobs' upright and firm, nipples doing well but still not 100% certain that they'll take..only time will tell. My right arm pit numb as a result of the lymph nodes removed, and I've noticed it gets worse as the day progresses...but I can't say it's actually painful and I'm trying to train myself to start to use my left arm to do most things. Also religiously following exercises given to me by the PT. Bak I'm really pleased that my surgeon just happened to attend a conference where the technique he eventually used on me was being demonstrated... it appears to have all the advantages of a mastectomy, but you are left with boobs rather than a totally flat or concave look. Apparently what the surgeon keeps inside is the fat under the skin (not the skin as I'd thought previously) after having removed all the breast tissue... After having accepted the fact that I was having a bmx without reconstruction I can say that I'm really pleased to have allowed my bs to experiment on me!!!
Today it is a beautiful October day, clear blue skies, sun but not too hot, and I think I'll go for a walk....
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Hello bak94
Could you tell me exactly which thread it is that you read about Zometa? The one I saw recently was about Zometa and osteoporosis prevention after breast cancer treatment. No one had posted on that thread.I would think that you are considered younger at 44. Remember that we are told that TNBC affects mainly younger women, from which I presume that the experts mean under 50. Of course, there will always be exceptions. There used to be a thread on this forum entitled Not a Typical TNBC. From the postings it looked as though TNBC affected all ages, but on the whole it is considered something that affects mainly younger women.
If chemotherapy stops your periods permanently, then you will be considered post-menopausal. However, younger women, I would think, need to wait a while after finishing treatment to see if they do come back. This is what happened to an acquaintance of mine who was 38 at diagnosis.
Did your first lot of BC treatment back in 2002 affect your periods?
You need to ask your doctor whether a definition of post-menopausal applies to you.
I am a bit confused about the use of Zometa. It was explained to me that it was used to alleviate pain in BC patients whose cancer had spread to the bones. It is also used to treat osteoporosis. I still do not understand how a bisphosphonate such as Zometa can act as a preventive for mets whether you are pre or post-menopausal, but I am not a doctor.
I think this is something about which you need to talk to your doctor. With research I find there are often conflicting ideas or ideas that change radically. You can end up so confused, especially with all that is posted on the internet.
I am wondering what your doctor means by he has good results. Is he saying that his BC patients who are taking Zometa do not become metastatic and that those who are not taking Zometa do become metastatic? If this is the case, how many women are involved? How do we know that the same thing might have happened if no one was taking Zometa? We all know some women become metastatic and some do not.
I do not know anything about Proponal. I do know that betablockers have all kinds of side effects and I think a person can lower blood pressure through diet, exercise and avoiding stress. Of course, this is my own opinion and my philosophy has always been to avoid medication if I can. I have osteoporosis but I have made up my mind that I shall never take a bisphosphonate such as Zometa. I believe as my motto on this thread says, "Let food be your medicine and medicine be your food".
I am very wary of doctors because they just match symptoms to pills and you end up taking a whole load of them to counteract all the different side effects. The other day I was talking to a friend and he was telling me about his mother. Two years ago she was put on all different kinds of pills. This past week the family discovered that she had not been taking any of them. Her check-up showed that everything was now normal!!
If I were in your situation, I would have a frank discussion with my doctor and then make up my own mind what I wanted to do.
Best wishes
Sylvia0 -
Hello christina1961
I was glad to know that you had read about the Duke University research. Let us hope that it leads to good things for all of us.Do you now have a date for the clinical trial with eribulin that is being used to prevent recurrence?
Do you have a date for your brain MRI?
Have you now finished radiotherapy and how are you feeling?
Best wishes
Sylvia0 -
Hello BernieEllen
I was glad to know that you are not doing too badly on radiotherapy. It will soon be finished for you. Not long to go now before you can get your life back to more normal and settle into a routine of regular check-ups and mammograms.Best wishes
Sylvia0 -
Hello Maria_Malta
I was glad to know that you are doing so well and that you are pleased with the results of your surgery.Please remember to use your right arm as you would normally use it. That is what I did and I managed to avoid the awful lymphodema problems that I saw in a lot of women.
Sit back and enjoy life while waiting for your radiotherapy. This will all be over for you soon. It has probably seemed a long journey.
Best wishes
Sylvia0 -
Hello mccrimmon324
I was wondering whether you now have a date for your radiotherapy and whether you have had the test for BRCA1. You will be able to get plenty of support and information from BernieEllen who will have finished her radiotherapy in a couple of weeks. If Maria starts her radiotherapy in a couple of weeks you and she could be going through it more or less at the same time. I feel so glad for the three of you that you are on the end part of your BC treatment. christina1961 is also approaching the end of radiotherapy, so she will also have recent information and experiences for you. She will then go on a trial with eribulin and her experiences will be great information for all of us.Are you American ladies all looking to go on trials after your conventional treatment has ended? Are you being offered these trials now almost as part of your treatment to prevent recurrence or mets?
I have no idea what is happening in the UK with respect to trials after finishing treatment. No new patients from the UK are posting on the thread at present. I am hoping this is because not many are being diagnosed with TNBC. However, it could be that they are getting enough information from all of us and do not feel the need to post. Doing that is fine, but it makes for a solitary journey unless patients have joined a local support group.
I think we have all become good friends on this thread and we have learned so much more through our communications than just information about TNBC.
Best wishes
Sylvia0 -
Hello Suze35
I just wanted to say that I hope all is going well with your clinical trial and that you are keeping in good spirits.Best wishes
Sylvia0 -
Hello everyone
I just wanted to say that I hope all of you have had a good week. You certainly seem to be coping well with your various stages in your treatments.If I were you, I would ignore all the doom and gloom that you find on the internet about TNBC. All breast cancer can be aggressive. Whether you have hormonal receptors or not, you do not know the path that your particular cancer will take. We have to remember that those with IDC +ve receptors do not stay on Tamoxifen or Arimidex for life, and not all of them benefit from these drugs. There are failures. Those that are HER2+ are also dealing with an aggressive tumour and may or may not respond to Herceptin.
Breast cancer is a long journey for everyone and while we are on that journey we just have to do all we can to live life as normally as possible and do all that we can to help ourselves get well again and get on with our lives.
Best wishes to everybody and remember that you are all welcome here. Have a good weekend.
Best wishes
Sylvia0 -
Good Morning Sylvia,
I will be starting Radiation on 10/31/11 - I have an appt today for a CAT scan to start setting me up for it. I forgot to ask my onco about the BRCA test when I was in, I need to email him and ask. I did ask my radiologist and he told me that since my mother, aunt,.... didn't have breast cancer I am most likely negative, but my mother was an only child and I'm an only child so it's not like I have a large family that could have gotten it so I still want to be tested.
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Hello mcrimmon 324,
Thank you for your post.Thank you for letting us know the date of your radiotherapy treatment. You do not have too long to wait now and it will soon be behind you. I hope that all goes well with your CAT scan today. Please let us know how ou get on.
I can understand how you feel about being tested. If you are fairly young I would wanted to be tested for a genetic link, especially as you are an only child and your mother was an only child. It is important to remember that the link could be on your father's side. Breast cancer does not have to go through the female side of the family. I feel strongly that we should all be genetically tested.
Best Wishes, Sylvia.
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Hello everyone
I was wondering whether any of you have read the information on CANCERactive about screening mammograms and radiation. The link is:
http://blog.canceractive.com/2010/06/screening-mammograms-increase-risk-of-breast-cancer/
Let me know what you think on the comments about mammograms and radiation.
Have a good weekend all of you.
Sylvia
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Hi S,ylvia, that is such an interesting article. However, i know that if i tried to discuss that with the doctors here they would still be recommending the treatment i am having - rads followed by a yearly mammogram. So what do we do going forward?
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Hello everyone!
I finish up radiation Monday with the last "boost" to the scar area. For those starting radiation, don't worry - at least for me it was not difficult nor did I have a bad skin reaction. I had some fatigue but I worked throughout and napped when necessary.
My clinical trial with eribulin starts this coming Friday with the first infusion - then another infusion the following Friday, then a week off. Then the cycle repeats for a total of six (two dose) cycles. During the trial there are restrictions on drugs I can take, including over the counter antihistimines, I am having a very bad allergy attack tonight so I took a benedryl but will abstain the rest of the week as it will be getting close to the trial. I will keep everyone posted on my experiences with the eribulin (Halaven.)
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Hello Bernie
Thank you for your post. I was glad to know that you found the article about mammograms interesting. I agree that you cannot discuss such things with orthodox doctors. The treatment for cancer is chemotherapy, surgery, radiotherapy, scans etc. and then post-treatment regular check ups and regular scans. There can be no doubt that this treatment is saving lives and that if we want to survive we have no alternative but to go through the treatment. I think we all know about side effects, short term and long term, but we put up with them in order to survive.In the article there was mention about a blood test that could replace mammograms. I think that would be real progress. It is only my opinion but I think more use could be made of markers in the blood. Radiation is not good for any of us in the long term.
I feel that before we were all diagnosed, found a lump by our own breast check or through mammograms, abnormalities must have been showing up in our blood.
I do not know how we go forward, but somehow we must go forward and find less devastating means of treatment. Unfortunately, the way forward appears to be more and more drugs.
I suppose you will be celebrating the end of your treatment this week. Let us know how you feel. I feel there is a lack of fighting spirit in the UK with breast cancer, but you, Bernie, seem very determined and do have fighting spirit. We need women like you.
Best wishes
Sylvia.0
