Calling all triple negative breast cancer patients in the UK
Comments
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Thank you for sharing. Im also triple negative, newly diagnosed. Had fourth treatment today of Taxol and carboplatin. I’m glad you mentioned staying active while on Taxol. Stay well and take care.
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CocoonCat,
I wanted to comment on your post to Sylvia; as I read it I could share your feelings of anxiety, fear and the general fear of the unknown, I suppose. We all have these feelings but they do mellow a bit as we move along with things. You are in the thick of it right now, your body is still being beseiged by the strong drugs and your mind is still reeling from trying to cope with these new realities.
I will always wonder too, why did I get this disease? I was healthier than most people I knew, at least I thought I was. There seems to be no solid answer and when I don't know what caused it, how can I avoid it? So I take lots of supplements and try to eat healthily, and speak sternly to myself when I don't.
Making future plans is another thing. The first time I planned ahead for a trip, I was not sure if I would be able to go. When the time came, and I went on the trip, I had an awesome time. It was such a feeling of freedom, and a step out from under the cloud of this disease. I was told all through my treatment regimen, "just take it one day at a time." It was an effort to move from that mindset to a "maybe I can think about more than one day" mindset. It did take a while however, to get to that point.
It sounds like you are having not too bad a time with the chemo you are having, I hope you will recover from it quickly and can just put it behind you. None of us know the future, but you can still have a great life, it will just be a different life, a new normal.
I do know a couple of people with cancer who have an attitude such as your friend with prostate cancer. They follow the advice of their trusted doctor, and don't bother much with dwelling on it, or studying available research. I suppose that is just a different way of handling things, and seems to be working for him. I just think we all have different ways of handling things, and don't feel like you are wrong to feel as you do. When you are in the midst of BC treatment, it's very hard to think about much else. I ran into a friend the other day at the grocery store, he told me he had been diagnosed with bladder cancer, but it was localized and he had the spot removed and that was it. He will just have to go back for check-ups once in a while. He never felt ill, and never had to go through the process we all did, good for him.
I am glad you found your way here, and realize that we all know how you feel, and will help you through in any way we can.
Talk to you soon, love,
Mary
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Hello Minetta57,
Welcome to our thread. It is always interesting and helpful to read posts from the newly diagnosed and to learn how they are getting on.
I was interested to read that you have just had your fourth treatment today and that you are on paclitaxel (Taxol) and carboplatin. This combination seems to be increasingly used.
Is this the only chemotherapy regime that you are having? Have you had other chemotherapy drugs before this, such as the common one AC? This is doxorubicin (Adriamycin) and cyclophosphomide (Cytoxan).
Are you finding the treatment is not so bad or are you having any side effects?
Are you managing to stay active and live as normally as possible while on chemotherapy treatment?
I do hope you will stay with our active group.
Wishing you all the very best.
Sylvia xxxx
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Hello Mary !!! 😅 How I feel the news of the death of your first and second. I trust that every time you feel better with these losses .. they have been many in a very short time.
I hope you enjoy your little vacation in the big house you have rented with your family. I definitely think that despite the adventurousness we should make our lives the best we can. I would like very much to accompany you in this trip of illusion to see Scotland, Ireland and to visit Silvia in England. my mother always teaches that you have to get up with an illusion .... when I'm not physically or mentally capable of doing anything, I listen to Diana Uribe and she transports me to other countries and to other times. I'm surprised you can hear her there. . you listen in english. receive a big hug from my part and thousands of blessings. I'm in the physiotherapy. Now doing a bicycle, I'm improving a lot. I still have a lot of dislikes and there are times when I can not give a step. But I'm sleeping and I'm very relieved. another hug
Abrazos
Marias
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Hello Mary !!! 😅 How I feel the news of the death of your first and second. I trust that every time you feel better with these losses .. they have been many in a very short time.
I hope you enjoy your little vacation in the big house you have rented with your family. I definitely think that despite the adventurousness we should make our lives the best we can. I would like very much to accompany you in this trip of illusion to see Scotland, Ireland and to visit Silvia in England. my mother always teaches that you have to get up with an illusion .... when I'm not physically or mentally capable of doing anything, I listen to Diana Uribe and she transports me to other countries and to other times. I'm surprised you can hear her there. . you listen in english. receive a big hug from my part and thousands of blessings. I'm in the physiotherapy. Now doing a bicycle, I'm improving a lot. I still have a lot of dislikes and there are times when I can not give a step. But I'm sleeping and I'm very relieved. another hug
Abrazos
Marias
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Hello CocoonCat,
Thank you for your post. I can understand that you have not felt like posting because of the mental fatigue that has crept up on you. Just take care of yourself and rest if you need it. You can just pop in with short posts to let us know how you are doing and how we can help.
Your post is of particular interest because it seems that like Minneta57 you are also doing Taxol and carboplatin. You must remember that as the chemotherapy sessions build up so does the fatigue that you feel in your body. It is accumulative. You will get through this.
It is good to know that you are at ease with your small hospital and your chemotherapy nurses. It is also good that you have not had any issues with your nurses finding veins. Having your partner with you for reassurance and support will make all the difference.
I do hope that when it comes to the hospital stay you will be able to have your partner with you. I get the impression that these hospital stays are kept as short as possible.
It is really good news that your genetic tests have all come up negative.
Do not torment yourself about what caused your cancer. There will not be one cause or risk factor. Breast cancer is a multi-causal/multi-risk factor disease. Some you may have been able to avoid and some you may not. Try not to focus on this.
I was interested in what you had to say about your family friend with prostate cancer. We all have to cope in a way that is best for us. I know when I was going through my treatment for breast cancer in 2005/6 my consultants were surprised that I asked so many questions and told me most patients just want to be treated and do not want to know anything about it. I am not that sort of person. The husband of a friend of mine diagnosed with prostate cancer and knowing about my breast cancer phoned me and asked me to support him through his prostate cancer treatment. I did this and he would talk about what was troubling him. It always helps to talk.
I definitely think it is best to stay off the internet.
Have to end now but will be back soon.
Best wishes
Sylvia xxxx
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hello sylvie does not stop worrying about chemotherapy and surgery here are different protocols. My aunt has hormone breast cancer and they sent her first a quadractomy and then 20 radiotherapy sessions and 5 years taking letrozole 2.5.
I think so far, my treatment was highly aggressive with triple negative diagnosis. FAC-T and then when I saw that it did not reduce the tumor much, they did quadracticectomy. then the 20 sessions of chemotherapy. When I was operated on, the tumor in the pathology turned out to be positive in one of the hormones and that's why I am taking letrozole 2.5 forma 5 years.
what the operation spreads the cancer has been a popular saying here in Colombia. they operated on it and senle.rego !! I think you have to dig very well when making decisions about it. but we will not know it with much certainty since many investigations are directed toward the part of the person who finances the research. The future continues to frighten me when I see patients with high side effects from chemotherapy, such as dermatitis on the feet and hands. that prevent them from walking and grabbing things with the hands. I'm scared of my overmedication by these very complex diagnoses of my breast cancer. and then the radioactive treatment for the thyroid cancer.
Ahora más tarde escribo
Abrazos
Marias
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Hello again CocoonCat,
I am finishing my post to you. I got interrupted.
If that were me I would stop looking at the internet. What is it you now need to know? All breast cancer has its different problems and all the emphasis seems to be on the receptor status and classifying the breast cancer according to that status. There seems to be very little emphasis on the kind of cancer, the most common of which is invasive ductal carcinoma (IDC) but there are other types that are a lot less common and perhaps they have their own difficulties. Information is power but you just need to know what your treatment is going to be (surgery, chemotherapy and radiotherapy). Hormonal breast cancer has its problems with having to be on tamoxifen or aromatase inhibitors for years and triple positive, HER2+, certainly has its problems with having to have Herceptin. For me I have always been positive about being negative and was so glad that after treatment I could look after myself and stay away from all medication. I take no notice of any doom and gloom about breast cancer with triple negative receptors.
You have to try to stop fretting and just get through your treatment. I do not really understand what you are expecting to find on the internet that will help you. You will probably get more help here, as we have all been through it.
You will find that the further you go from diagnosis, treatment and the end of it, the less you will think about cancer.
Keep looking forward.
Very best wishes.
Sylvia xxxx
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Hello Marias,
I have just read your post and I shall try to answer a bit later. I have some things to do at the moment.
I wanted to say thank you for your photographs. I do love the garden that is shown in the photograph. It looks so lovely and peaceful.
I was interested in the photograph of you doing physiotherapy on a bike. You are trying so hard to get back to normal. I think you have lots of willpower and you will succeed.
I do enjoy your posts.
Abrazos.
Sylvia xxxx
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hello silvie again. Now I am in the waiting room of the Clinica del Lili waiting for the endocrinology. I trust everything goes well and tells me that I am doing very well in the treatment.
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hello silvie again. Now I am in the waiting room of the Clinica del Lili waiting for the endocrinology. I trust everything goes well and tells me that I am doing very well in the treatment.
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Hello minetta 57.
Welcome to this group. Here one finds.words of relief support and.friends in the distance. I trust you to go well with your treatment and you are calm with the.caida.of.the hair, eyebrows.and eyelashes.and.with.the.maluqueras.that.may.will.give you the treatment. A hug from Colombia
Marias
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Hello Cocoocat
How are you. I trust you are better of encouragement and expectations regarding the treatment process and how uncertain it is. but equally we have to think that everything in the future is uncertain and sometimes we want to control it with the planning the self-care the prudence. but still remains uncertain.
The levels of anxiety that we have just started the treatment are often very strong, too. accentuated by the drugs that we receive during chemotherapy.
Regarding your friend who keeps his happiness, optimism and joy is due to his own
path ...
The chemotherapy to my mind did not only weaken physically and mentally, but also very scary. I went back.Board but I already finished.8 months ago and I am returning to be more trustworthy in the life. When I was in the chemotherapy, I got a yoga teacher, who helped with the part of the meditation, it was good for me.
a big hug
Marias
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HibSylvie!!
This morning the Endocrine told me that everything is going well that I got it in three months. I continue with the same treatment. so they are excellent news.
Now I am in the waiting room of the same clinic waiting for the gastroenterologist to confide that everything is going well with my vesicle.
Tomorrow I have to go to the clinic where he has to look because I'm still suffering from leukopenia despite having finished chemotherapy 12 months ago.
Receives a huge hug
marias
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Sylvia, there was no radiation used in the bone scan. I would think the statement about metastasis MIGHT be present is a given in every report; that way, no one can say they weren't made aware of the possibility, no matter how distant. I have had a great day. Bought more flowers and planted them today. A year ago I couldn't do that. My bones are aching tonight but it's because I've been going at things steadily instead of in bits and pieces. Today we also started preparing our trailer for camping and hope to get to a campground next week. Ifeel so good. And thanks always for your encouragement
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Hello Nancy,
Thank you for your post. I was glad to know that you have been having a great day and planting flowers in your garden. You can look forward to happy camping days, I hope.
For the sake of new patients I thought I had better explain about bone scans.
There is a scan called a bone nuclide scan. This is quite a complicated scan and takes quite a bit of time. I remember it because I had one both before and after my treatment. The reason that I had it was because my blood test showed high levels of calcium in the blood and this can be a sign that cancer has spread to the bones. When you have the scan you have to go and have an injection first of all. This is a radioactive tracer and you have to give it time to work. I think I had to wait around at the hospital for about an hour for the injection to do its work. I then had to go to the nuclear department and lie on a table where my body was scanned. I was very happy to know there was no spread to the bones. If there had been it would have shown up. The injection had made me radioactive for a couple of days and I was told to avoid being near young children.
My oncologist had to get to the bottom of the high calcium level in my blood. Fortunately for me she decided to test for parathyroid hormone level in the blood, and discovered that I had an overactive parathyroid gland. This causes calcium to go from the bones and into the blood. When I had finished my breast cancer treatment I had surgery to remove a non-malignant adenoma on one of my parathyroid glands and this cured the problem and my blood calcium level immediately became normal. As I have said before, some research finds a connection between an overactive parathyroid and breast cancer.
At the end of my breast cancer treatment I had another bone nuclide scan and it was clear once again.
The other scan is a much simpler one, called a DEXA scan, and is very low in radiation, less than flying in a plane. It is used to look at the bones in the hip and spine to see whether there is osteopenia or osteoporosis. I had this can after treatment and was told I had osteoporosis. This would have been caused probably from the breast cancer treatment but the undiagnosed overactive parathyroid gland would also have contributed.
I have always said on the thread that it is useful to get one of these DEXA scans before and after breast cancer treatment to see what the status of your bones is before and after treatment.
I am not sure what kind of scan you had. There are so many different scans.
An MRI scan and an ultrasound scan have no radiation but a PET scan and a CT scan do have radiation, I think.
For you, you have been told all is clear and you must be glad of that.
I hope you have a good weekend.
Love.
Sylvia xxxx
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Hello Marias,
Thank you for your post and photographs. It is quite interesting having a video of your appointments.
I do hope you will have good news from all different departments dealing with your problems. I think it probably takes quite a time for the body to get back to normal after chemotherapy treatment. We know that these toxic drugs affect white blood cells and red blood cells, but they should get back to normal.
I know that you will do everything possible to get back to normal health and normal living.
Abrazos.
Sylvia xxxx
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Hello Marias,
I was interested in the post that sent to Minetta57. I understood what you were saying about hair loss from chemotherapy and also loss of eyebrows and eyelashes. We know how awful all that is.
I was interested in the word maluqueras that you used. I looked for it in my big Collins Spanish dictionary but I could not find it. I googled it and found that for Colombia it had the meaning fealdad which means ugliness. I suppose what you were trying to say was that the chemotherapy treatment that causes hair loss, eyelash loss and eyebrow loss makes us feel unattractive and takes away our normal looks. That is true. All this can make us feel depressed or low in spirits. We have to tell ourselves that it will pass.
That is all for today. I do hope you will have a good weekend.
Abrazos.
Sylvia xxxx
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Hello Marias,
I was looking at your post from yesterday. You were writing about how chemotherapy and surgery is worrying. You said that where you are there are different protocols.
I think that most of the time breast cancer treatment is more or less the same – surgery, chemotherapy and radiotherapy, but there may be slight differences. Surgery can be a mastectomy or a lumpectomy. Chemotherapy may be used, but is not always used, and sometimes the regime has slightly different drugs. Radiotherapy is used most of the time and it is to get rid of any stray cells. That is what I was told.
It is not useful to compare your treatment to the treatment of other patients.
Your treatment was based on your first diagnosis of triple negative receptors. It may have been based on the fact that you had ILC breast cancer and not the most common one IDC. You also had the complication of thyroid cancer.
Concentrate on the fact that you have survived all this and that you are making good progress. You are also taking letrozole, an aromatase inhibitor, for the hormonal positive part of your breast cancer.
I was interested to read the words senle rego. What does this mean?
I think the most important thing when going through breast cancer treatment is to participate in decisions that are being made about your treatment. It is your body and you must decide what you will do and will not do. Sometimes you have no choices but to follow harsh treatment to keep you alive.
We are all afraid of the future. With breast cancer this is even truer. There are no guarantees. For all of us humans death can take us at any time. Therefore we have to live the moment and live the day.
Abrazos.
Sylvia xxxx
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Hola Marías,
Estuve mirando tu publicación de ayer. Usted estaba escribiendo sobre cómo la quimioterapia y la cirugía son preocupantes. Dijiste que donde estás hay diferentes protocolos.
Creo que la mayoría de las veces el tratamiento del cáncer de mama es más o menos el mismo: cirugía, quimioterapia y radioterapia, pero puede haber pequeñas diferencias. La cirugía puede ser una mastectomía o una lumpectomía. Se puede usar quimioterapia, pero no siempre se usa, y algunas veces el régimen tiene medicamentos levemente diferentes. La radioterapia se usa la mayor parte del tiempo y es para eliminar cualquier célula extraviada. Eso es lo que me dijeron.
No es útil comparar su tratamiento con el tratamiento de otros pacientes.
Su tratamiento se basó en su primer diagnóstico de receptores triples negativos. Puede haber estado basado en el hecho de que usted tuvo cáncer de seno ILC y no el IDC más común. También tuvo la complicación del cáncer de tiroides.
Concéntrate en el hecho de que has sobrevivido a todo esto y que estás haciendo un buen progreso. También está tomando letrozol, un inhibidor de la aromatasa, para la parte hormonal positiva de su cáncer de mama.
Estaba interesado en leer las palabras senle rego. ¿Qué significa esto?
Creo que lo más importante al someterse al tratamiento del cáncer de mama es participar en las decisiones que se toman sobre su tratamiento. Es tu cuerpo y debes decidir qué harás y qué no harás. A veces no tienes más opción que seguir un tratamiento severo para mantenerte con vida.
Todos tememos el futuro. Con cáncer de mama esto es aún más cierto. No hay garantías Para todos nosotros, la muerte de los humanos puede llevarnos en cualquier momento. Por lo tanto, tenemos que vivir el momento y vivir el día.
Abrazos.
Sylvia xxxx
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Hello Sylvie. Thanks for all Your words. Is true everything You write.
Se les rego is the cáncer spread out all the body after the surgery.
Maluquera.. are all the bad things that You feel
Have a beautiful datos.
Abrazos
Marias
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Hi, Sylvia
Yes, it's been a busy week, and then we will go off to family visit. It will be good to have a quiet week one of these days.
The "new" protocol for E+ and node negative women does not seem so revolutionary to me. I had 2 aunts, one on my father's side, and one was the wife of my mother's brother, who had BC about 40 years ago. They both had mastectomy and that was it. They both lived long lives afterward and died of other things. As I said too, I know probably 6-8 young-ish women who have had only mastectomy, some of them are taking a pill afterward and some are not. Just sitting here I can't think of anyone with hormone-positive BC who has had chemo who did not have node involvement. It seems to me it has been up to the doctors all along. Now, when the diagnosis is TNBC or HER2+. there is not so much flexibility. We all seem to get basically the same regimen of drugs and radiation, although I did not have radiation, for better or worse.
There are new genetic tests out there that were not offered to me. I did have the BRACA test, it was negative. I do remember at one point about midway through my chemo regimen, my MO came into the room where the chemo was administered. He was talking to my nurse about me, and he told us that I could possibly have the ONCOTYPE test, and I think that is the test you mentioned that points to whether or not chemo would be successful. At the time the MO mentioned it, I didn't know what that was all about, I have since learned that it is a test given to see if chemo will do any good. I think a low number result means the patient can be successful without chemo, and a high number would mean the patient needs to have chemo. The middle numbers would be a matter of weighing all considerations. Thinking back, I wonder why my MO would bring this up after I was already well started on the chemotherapy. And my guess is because I was having so many side effects. At any rate, that was the last I ever heard about it, I think the test is used quite a bit now, although it is not a new test. It's probably geared more towards hormone-positive women.
As for us with TNBC, we go on as before, although many women now seem to be receiving the Carboplatin drug along with the regular line-up of drugs. We must remember TNBC is not a death sentence, it does have harsher protocols of treatment, but having hormone-positive BC is not an easy road either, even though the treatment may be less taxing. We are all left with the mental stress, and surgery scars!
I will close for now, I want to go outside before the heat of the day settles in. We are having very hot weather here.
Love, Mary
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So, I had the last of my three FEC treatments today. Docetaxal starts in three weeks. The Head Chemo nurse said to let them know at once if I experience any numbness in my extremities with that so they can take evasive action. My vitamin D levels are low (fair Irish skin: no sunbathing) so I've been given a supplement for that.
Having trouble with the District Nurses who have to flush and dress my PIC line on the Fridays when I'm not in the unit. No matter how many times I explain that they need to come 2 weeks out of 3, they cannot seem to grasp it. Naturally, they came this morning while I was out, having managed not to turn up last week.
Suffering rather with hay fever this week. It seems that loss of eyelashes aggravates this. When I got my bloods done on Thursday, I dropped into Maggie's cancer support centre to enquire about their Preparing for Radiotherapy course. The woman I spoke to saw my red eyes, assumed I had been crying and became quite annoying -- special caring voice, tilt of the head: 'Are you okay? Are you sure? Would you like to talk to someone?'
Waiting for a lift at Charing Cross this morning (and waiting and waiting), I got talking to a slightly older woman who was also heading to the Chemo Day Unit and who also has breast cancer (HER positive). She collapsed during her first chemo session and came round to find half a dozen horrified nurses staring down at her. Her first thought was that she'd died and they were angels, all dressed in blue, which was odd since, as she said, she doesn't believe in angels. They switched her to another drug and she's all right with that. You have to laugh.
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hi everyone great to hear u are all well. I’ve just been at the National immunisation conference which was really interesting. Australia has vaccinated cover 14 million people for flu vax this year which is a record! I’ve just finished my first 9 units of my nurse practitioner program and seem to be doing really well.
I’m feeling better physically but mentally have such a long way to go. Still have very dark days. I’m off to see a plastics dr to get them to remove the small hemangioma at the corner of my eye on the skin on Tuesday and the terror is back! I know I had it before diagnosis and I aggravated it through squeezing and touch it but I still keep think worse case scenario so it will be better off! Wish I wasn’t so terrified tho. Great to hear u are all keeping well
Much love
Kat
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Hello Marias, Mary, SusieW5 and Kath,
I have read your posts and shall try to answer them during the weekend. Remember to exchange posts with one another so that everyone is up to date and each of you can offer information, support or just friendly chat.
Best wishes also to Pam, adagio, Nancy, Hanieh, Sarah, CocoonCat, Sid, Minetta57 and Jags56, and thank you for your contributions to the thread.
I hope all is fine with Dark13 from the Caribbean.
Best wishes.
Sylvia xxxx
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Hello everyone
Its really hot here in New Delhi. It's very difficult to go out anywhere. Even the evenings are warm.Waiting for the rains so that it becomes cool.
Sylvia how do you spend your days? Do you travel ? I used to earlier but now I don't.My granddaughter keeps me busy. Indirectly she has really helped me in healing as I don't think about the disease and enjoy spending time with her. I think this therapy is better than any other medicines or supplements.
Mary I am sorry about the death of your loved ones. This is life. It is good that you will be spending some time with your family.
Sid I have not heard from you. Are you alright? Hope everything is ok.
Best wishes
Jags56
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Hello to all,
Jags56, thanks for condolences, it is a mystery to me why death is always such a surprise when we know it is inevitable. It never seems to be the right time for it, too early or too late, too sudden or too lingering. Seems like it is hot everywhere now. Except maybe for Kath in Australia, who should be cooling off.
SusieW5, glad you are getting through your chemo reasonably well. I hated losing the eyebrows and eyelashes, I was expecting to lose the hair on my head but not my eyes. I thought I looked like an alien being. Sorry about your Nurses, I guess all you can do is try and try again to get through to them. My husband had a PIC line at one point, I remember it needed flushing regularly.
Sylvia, I am off soon to funeral and then out of town for a few days. I am mad at myself (again), I stubbed my toe a week ago and I think it may be broken. I talked to 2 nurses, they both said there is not much to do about it except wait for it to heal. Then I was buffing my feet last night to make them presentable, I was overzealous and have a raw spot on big toe. Also banged the dishwasher door and have large cut above ankle. All on same leg, and I am not happy about it all, and all due to my own carelessness. There, I feel better, I have commiserated about it all! I will try to keep up with the thread in quiet moments, if there are any!
Talk to you all soon, love, Mary
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Hello Marias,
Thank you for your post. It is nice to know we agree on so many things. Thank you for the explanation of those two Spanish words.
Keep up your good work of getting better.
Abrazos.
Sylvia xxxx
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Hello Mary,
I do hope that you are now happily installed with your family members for a nice break together.
I agree with what you said about the 'new' protocol for E+ and node negative women. It does not seem very new.
I know three women around me with this status and they did not have chemotherapy, but I think they had radiotherapy. I wonder if the new therapy will cut this out and it will just be surgery, which is what it used to be, until they discoverred chemotherapy from World War II.
I do think that women with triple positive receptor status have a hard time with the drug Herceptin for HER2+.
I did see a letter in response to the article I read in the i paper this past week about being spared chemotherapy. It was in the same paper and the woman was saying she had not been offered chemotherapy and she was now suffering from metastases. This 'new' treatment might open itself up to problems, if women are told they do not need it and then the cancer comes back or spreads. There will always be exceptions to the established norm. I was told I should not have breast cancer and at the time it also seemed strange that they were saying that triple negative affected younger women and I was diagnosed at nearly 63.
I enquired about the genetic test and was told I did not qualify. No one ever mentioned the oncotype test to me either.
The other article in the i paper that I mentioned last week was entitled TAILORx trial – Predicting if disease will return. This is what it said.
"The TAILORx trial used the Oncotype DX test, currently available on the NHS, which allows doctors to predict the likelihood of breast cancer returning. A sample of the tumour is tested after surgery for 21 genetic markers, which indicate if it could grow and spread.
"Patients with a recurrence score of up to 10 out of 100 have previously been shown not to benefit from chemotherapy, and instead need only hormone treatment. Those who score 26 or higher do benefit and currently receive chemotherapy.
"The TAILORx study found women older than 50 with this form of breast cancer and a score of up to 25 did not need chemotherapy.
"Under 50s with a score of up to 15 can also be spared the treatment and only receive hormone therapy drugs after surgery, according to the research."
Reading this I think I would be concerned that, if you are over 50 and have 26 or higher you do receive chemotherapy but if you have 25 you do not need chemotherapy. How accurately can they measure these numbers and what about the margin of error?
I find it odd as well that under 50s with a score of up to 15 can be spared the treatment and only have hormone therapy.
I do not feel happy with age and numbers games deciding on treatment. The body is not made up of statistics.
All this reminds me of all the strange age numbers that are being used here for the shingles vaccine. The qualifying date changes each year on Sept 1st and different age groups are used. My birthday is on September 1st and so I have never qualified for the age in vogue. Even my GP told me she did not understand the shingles thing.
After my experiences with that flu jab, last October, I shall be refusing anything on offer anyway.
Medicine is not an exact science. I wonder about the different criteria and numbers that are being used to decide whether people should have statins, blood pressure pills and whether or not they have diabetes. Who decides on these numbers?
As you say, if a patient has triple negative receptor status, there is no change (for the moment!) but I think the drug companies would love to find a way of putting these patients on pills long term.
The same is for patients with triple positive receptor status. There is Herceptin but it has nasty side effects.
I think all breast cancer is aggressive, if that is the word we use, and that there is no easy road. With hormonal breast cancer I think ten years of a mixture of tamoxifen and/or aromatase inhibitors is not an easy journey and it is certainly not one that I would have wanted to take.
That is all for now.
Love.
Sylvia xxxx
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Hello Susie,
I do hope all will go well when you start docetaxel (Taxotere) in three weeks.
I think it would make more sense for your medical team to take action to prevent numbness (peripheral neuropathy) before the numbness starts. We all know that the two taxane drugs (the other one is paclitaxel – Taxol) cause peripheral neuropathy in the hands and feet. Have they mentioned what the preventive action is? I think some women have iced the feet and hands.
I was glad to know you are taking vitamin D supplements. I take vitamin D capsules every day and have done so for the past 13 years. I take 4,000 iu a day. Remember that low vitamin D has been mentioned as a risk factor in breast cancer and that many breast cancer patients have low levels.
I do hope you managed to sort out the problems with your District Nurses and the flushing out of the PIC line.
It sounds as though you had a good idea to go to the Maggie centre about that preparation for radiotherapy course.
Have you already lost your eyelashes? With me this happened with the docetaxel. The eyebrows disappeared as well. They do grow back but I find my eyelashes are very sensitive and I often get redness around the eyes if I am in the grounds here.
I was amused at what you said about that older patient you met.
Keep looking forward.
Love.
Sylvia xxxx
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