Join our Webinar: REAL Talk: Healthy Body and Mind After Breast Cancer Treatment - Jan 23, 2025 at 4pm ET Register here.

Calling all triple negative breast cancer patients in the UK

1325326328330331557

Comments

  • marias
    marias Member Posts: 265

    Hello, today I find this paper, about cistina and triple negative cancer, https://today.duke.edu/2016/11/breast-cancer-cells-starve-cystine

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Debra,

    I did read the link you posted, which was about people whose cancers vanished after they have been told there is no hope for them and that they will not have long to live.

    I did read all about these kinds of cases back in 2005, so it is not a new thing. Some of it is apparently explained by patients going into instant remission and still clear of cancer and living normally many years later. It is hard to explain this but I think the immune system must play a part.

    The cases that I have found most interesting are those where a cancer patient, diagnosed as terminal, has an infection of some sort and the cancer then disappears. I read a long time ago of twin brothers, with, i think, cancer in the lung and not expected to live. One of them somehow had an infection and his cancer cleared. The other one did not have an infection and died of his lung cancer.

    I tend to think the immune system must somehow be involved and comes to the rescue to fight the infection.

    We have to remember that we are all individuals with our cancer, even though we get the same basic treatment. When I was diagnosed the breast cancer consultant told me I should not have breast cancer. That was not much consolation knowing that I did have it. She told me that in women like me, who had never been ill, the immune system can become lazy and not fight when it should be fighting.

    This is all very interesting and shows us how complicated cancer is. This is why I do not take any notice of percentages and statistics.

    I was told my prognosis was not good because I was not hormonal, but here I am twelve years and one month later.

    Keep posting, Debra. It is a pleasure to know you.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello adagio, Mary and Marias,

    Thank you for all your posts and I shall be posting later today.

    Welcome back, Marias.

    Love to you all.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    Yes, my birthday is September 1st and I am a Virgo and fit the description that you find in astrology books. Can we really believe in this? I think, if we study it, we shall find all sorts. I do seem to have friends that are in September, as well, and we do seem to click together.

    I was glad to know that you had some rain. That must have been very welcome.

    I was sorry to read about the suicide of a friend and neighbour. I always say that we do not know what goes on in households behind the curtains. Nothing seems to shock me these days. In a quiet little cul-de-sac recently, in a Dorset village, a man was shot to death in what was thought to be a routine burglary. It turned out to be much more than that. Do we ever really know people? With your neighbour there was something that probably pushed him to do this.

    I was interested in the details of your daughter-in-law's breast cancer. It will be interesting to see what happens with her. A double mastectomy for small tumours would be considered drastic here in the UK, and I think she probably would have been offered lumpectomy and perhaps radiotherapy.

    I am not sure how old your daughter-in-law is, but, again, in this country, if she were pre-menopausal she probably would have been put on tamoxifen and if post-menopausal an aromatase inhibitor of some kind, such as Arimidex, or a combination of both. Here women are being put on these for ten years now, before it was five years. I have friends and neighbours who had this treatment for hormonal receptors and small tumours. They are all doing well but those drugs have side effects. Tamoxifen makes you put on weight and the aromatase inhibitors cause osteoporosis.

    I think, perhaps, that the medical experts may be trying to avoid chemotherapy if possible.

    As for reconstruction, I have always thought that it complicates everything. I wonder what is being stirred up with all that surgery.

    I can understand how you get behind with your reading. I am the same as I never seem to have enough time in a day to do everything I want to do. Sometimes in the evening I just want to relax and try to slow my brain down.

    I have not ordered any French magazines in a while and have given up on our newspapers. Most of them are not of good quality and thrive on sensationalism. I think you are probably right about print magazines and even books.

    These days I find it is quite difficult to find a book that really interests me. I have just read a non-fiction book entitled Prisoners of Geography by Tim Marshall. He has different chapters on different countries and shows how the geography of each country largely seals their fate. It has taken me a long time to read, because I have had so many interruptions. I have just started a non-fiction book in French, which is about the experiences of Bernard Pivot, a well known writer in France. He used to have literary programmes with well known authors as guests. He also used to take difficult dictations in French on the television and I used to participate in them at home.

    I only have two books going at any time now.

    I think with reference to recurrence, the only thing is to try to read our body. I do my monthly breast cancer check just by physically going over my left breast, feeling for any lumps and for anything that seems unusual. I always feel under both arms and, remembering what my oncologist and breast cancer consultant said, I look for anything that is not smooth. I do the same over the area of my mastectomy and I look for any kind of rash. With the left breast I look for any swelling, for puckering and for an inverted nipple. We have to remember that recurrence can just be local or a new lump in the good breast. It does not have to be metastases. Even after all these years I still have periods of being anxious about having to go through this again. Somehow I think I would try something else first. I would not want to be having any scans. I think they may do more harm than good.

    Thank you for the information about Facebook. Some of it seems to be a bit pointless, especially the bit about the number of 'friends' you gather. I suppose it can help with loneliness. The obsession with smartphones is something that I think is getting out of hand, but I suppose that anything that helps a person get through their daily life is fine. I do worry about the lack of privacy and, like you, I think we are all spied on today.

    We do have another poster and we should have two posters. Someone who sent me a PM about her mother said she would join us.

    I am still hoping that Hanieh and Amanda will come back to us and I do hope they are not having any problems.

    That is about all for now. I just need to say that my neighbour's daughter, who was diagnosed in 2005 with TNBC, and had cancer show up in the other breast this year, is doing fine. It turns out the tumour is a new one and this time it is hormonal. She has had a lumpectomy and is now going through radiotherapy. After that she will be on tamoxifen etc. for ten years. It was all good news for her. She was 38 in 2005 and is now 50. The other people around me with metastases seem to be doing fine.

    Take care.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Marias,

    I am going to take a break and then get back to you. It is important for everyone on the thread that we discuss surgery, the possibility of lymphoedema and the treatment.

    Love.

    Sylvia xxxx

  • Valstim52
    Valstim52 Member Posts: 833

    Greetings Marias

    So glad to hear from you. We missed you dearly on our thread. Yes it is a fearful time, but now you know what is coming next, you can relax and heal. Know that we are here for support.

    vl22 i agree with adiago. Once your treatment plan is in place and moving along, things settle down.

    Adiago, when I was diagnosed in November 2015, I was sure i would not make it to radiation therapy. I had a large tumor, node and skin involvement. Yet here I am currently no evidence of disease. Even my brain was cleared in August of 2015 by an MRI. Though the journey has been tough, horrific at times, I'm getting better each day.

    Val

  • Valstim52
    Valstim52 Member Posts: 833

    I currently have lymphoedema in my arm and upper belly. I immediately was sent to therapy for my arm last fall. During this time, it also appeared in my upper belly. I have the flexitouch machine for home massage. You put it on, it resembles a gauntlet. I use it most evenings. My insurance provider paid for 80% of the cost. I'm grateful.

    I see my occupational therapist once weekly. That is likely to change to twice weekly due to my upper midsection swelling. It is near my mastectomy scar.

    It was important for me after surgery to do the arm exercises. As a result I have great mobility in my arm.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Marias,

    It was so nice to have you back on the thread. I was really concerned about you and just hoping that all was going smoothly. I do remember you were not feeling up to par. It is good news that you now have the surgery behind you. My understanding of a Quadrantectomy is that it is a partial mastectomy. If I understand you correctly, you have had four nodes removed during surgery and that one of them showed cancer, so the surgeon removed nineteen more and just one of those showed cancer. It is a good thing that those nodes have been removed. The sentinel node is the first node and there may be two of them. This is what I was told.

    How long did you stay in the hospital after your surgery? When I had mine in 2006 I was in hospital for five days, but today patients seem to spend just one day in hospital, including an overnight stay. Back in 2006 patients were in hospital until the drains put in during surgery ran clear, but I think now this is done at home.

    After surgery, in the hospital, I was told to put a pillow in the bed, on the side of the surgery, and to rest my arm on the pillow, so that it was elevated and not resting by my side. This is done to stop fluid building up. I did this for quite some time after I went home and I had no real problems with lymphoedema.

    The day after surgery I had a visit from the physiotherapist and she went through exercises with me to avoid lymphoedema or other problems. It is important to keep the arm active. Did anyone show you how to exercise your arm?

    I was glad to know that your sister was able to come from Bogotá and stay with you for ten days.

    Wearing a bra straight after surgery is quite difficult. Since I had a full mastectomy I was given 'softies' to put in my bra, until I felt able to wear a proper prosthesis.

    It is good news to know that you can now move your arm and that your breast is getting better. Just take things slowly. It is only three weeks since your surgery. Everything takes time and you must be patient. If you think you have any swelling in the arm or hands, get it checked out and, if necessary, ask to see a lymphoedema specialist. She will take various measurements and decide whether you need special treatment and visits to the lymphoedema clinic. Decisions about this are based on those measurements. Some women have to wear a special sleeve sometimes to keep things in order for a while.

    I have just realised as I read the last part of your post that you were sent to the physiotherapist and for lymphatic drainage. I hope all will go well when you start this week. You will be shown how to gently massage your arm.

    Do not worry about your tumour not having disappeared completely with the neoadjuvant chemotherapy. With large tumours the chemotherapy is done before surgery to shrink the tumour to make surgery easier. I had a large tumour, chemotherapy to shrink it, and it did shrink but it did not completely disappear. After surgery my medical team were delighted and told me that I had had a complete response and that my pathology report was excellent with no evidence of disease (NED). I had radiotherapy about three weeks after surgery and was told it was done to get rid of any possible stray cancer cells. Ask your radiologist how many weeks of radiotherapy you will have. It is usually done five days a week with the weekend off.

    Do not be afraid. You are going to get through this.

    Buena suerte.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Marias,

    I noticed that you posted again and that you sent a link. I shall have a look later and reply.

    Fond thoughts.

    Sylvia xxxx

  • 4everStrong
    4everStrong Member Posts: 88

    Hello to all.. have been back to my day to day life.. so far so good.. have been so busy.. rarely have occasions to relax.. looking forward to my annual leave .. taking two weeks off late august.

    Hugs to all.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Marias,

    I have just read the link that you posted yesterday. I found it very interesting. It is all about treating TNBC by depriving cancer cells of one of the fifteen essential amino acids, namely L-cysteine. I have not quite worked out why the research calls it cystine. Apparently it has been found that cancer cells have "cystine addiction" and research is based on finding a way to deprive the cells of this 'cystine'. Apparently tests are being carried out to see how they can bring about this cell deprivation.

    As far as I am concerned, it all seems well and good but how far into the future will it take to bring anything about. I do not base my own survival on the what-ifs of the future. It could be another blind alley.

    What I did not like in this article was the nasty frightening description of breast cancer with TNBC receptors. I think it serves no purpose to the newly diagnosed who need to be positive about their treatment. We all get a variation of surgery, chemotherapy and radiotherapy and then we are on our own. These frightening terms about TNBC are used solely because after this treatment, the hormonal treatment through tamoxifen and aromatase inhibitors for ten years is of no use to us. It does not stop us surviving and the standard treatment does work for us and it is not right to say it does not. We are not all dropping dead as far as I know. Metastases is a possibility for all of us, whether we are ER-, PR-, and HER2-, or ER+, PR+ and HER2+. It so happens that the people I know around me have had metastases with hormonal breast cancer!

    I think on our cancer journey we should work with our medical team, question them all the time, and make sure they are working in our interests.

    Stay off the internet!

    Wishing you well.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello 4everStrong,

    It was a nice surprise to see you back on the thread.

    It was good to know that you are keeping well and that you are leading a normal life. This is the best way to go.

    I do hope you will find time for a bit of relaxation in your busy life.

    I am sure that you must be ready now for your two weeks off. Late August is not that far off.

    I am able to watch two channels from France through the satellite box that I have installed on my television. One channel is from France but in English. It is a 24 hour news channel. The other is in French, TV5 Europe, and is a most interesting channel. I have watched some really interesting films and also entertainment. Some of the programmes come from Quebec, Belgium and Switzerland.

    The other day there was news about the summer holidays and the great exodus from Paris, for some in July and for others in August, and how at one point those returning from their July holiday crossed with those departing for their August holiday. I do love the words used, les juillettistes, les aoutiens (I know there should be a circumflex accent on the u but I do not know how to put it in) and les chasse-croise des juillettistes et les aoutiens.

    Again, I do not know how to put the acute accent on the e of chasse and croise. I must learn how to do this.

    Thinking of you and wishing you all the very best.

    Keep in touch. Our group of friends here is important to us.

    Fond thoughts.

    Sylvia xxxx

  • maryna8
    maryna8 Member Posts: 1,832

    Hello Marias!

    Marias, welcome homeHeart!! I am so glad you're back and doing okay, but battle-scarred like the rest of us! I had not heard of a quadrantectomy before, a partial mastectomy. I gather it has left you with part of your breast, including your nipple.

    When I had my rt. side mastectomy, I stayed one night in the hospital. The nurse came in very early the next morning and showed me a paper with exercises and had me practice them right then, and told me I had to do them several times a day. I was barely awake from a drugged sleep, and it wasn't long after that I was wheeled out of the hospital and taken home. It seemed very rushed to me.

    Did they tell you to do exercises and show you how to do them? You say you will start physiotherapy, is that when they will show you how to exercise your arm? It's important to get your movement back.

    You mention lymphatic drainage, does the doctor think you have developed lymphedema? I was sent to lymphedema therapy after chemo ended, but I didn't have lymphedema, but I do have an injured shoulder. Val has explained her lymphedema treatment for us.

    From the way your treatment has proceeded, I don't think you will need more chemotherapy. The radiation should finish things up.

    So glad you have come back and told us what has been happening with you!

    Talk to you again soon,

    Love, Mary

  • maryna8
    maryna8 Member Posts: 1,832

    Hi VL22,

    I also wanted to say welcome! How odd to have 2 lumps in breast that are E+, and then find another that is E-! I bet you were shocked, and now you will do the standard treatment that we do for TNBC. That should also zap the tumors that are E+.

    Looks like you have just started your chemo journey, best wishes and we are here for you!

    Talk to you again soon, Mary

  • maryna8
    maryna8 Member Posts: 1,832

    HI, Sylvia,

    When I was much younger I did read the books on metaphysics that I could find. I also read quite a bit about astrology, most of which I have forgotten. I did have my birth horoscope done at one point, it does explain the wide variations between people who have the same sign, but are very different. According to this, it depends on the sign the moon was in when you were born, what star was rising when you were born and so on. It all gets very detailed. I had not thought about astrology much for many years; but it's funny that many of my closest women friends have been Virgos. I have also had friendships with some Virgo men, but we would usually get on each other's nerves quickly for some reason.

    You are right about the pre-menopausal women getting tamoxifen, not an AI. I tend to get those mixed up. In the case of my DIL, she will do no tamoxifen, no chemo and no radiation. Her medical team is very confident that it was caught very early and was very slow-growing, they got it all, and she will need nothing else. She will visit them every 6 months for 2 years and have bloodwork. That is all, as far as she's concerned, her cancer journey was short and she only has to get through the reconstruction.

    I also hope Hanieh and Amanda are doing okay. Amanda loves to travel, and may very well be off somewhere. Hanieh may be trying to put cancer and thoughts of it behind her; I did get the feeling at times that her family was wanting her to do that. But I am just guessing.

    I also check my breast area frequently for any lumps or oddities. But I am also concerned about the other areas that I can't check, so I try not to worry needlessly since there seems to be no good test for them, except for the brain MRI. I see that Val had one of those in 2015, it is a good feeling to get the all-clear. I had one in 2014.

    I will close for now, the funeral for our suicidal neighbor is happening this morning. I have been hearing now that he had some health problems that he didn't tell a lot of people about, it is all so sad.

    Talk to you again soon,

    Love, Mary


  • Lou2016
    Lou2016 Member Posts: 68

    Hi Ladies,

    I have been very busy since I return from Philippines. I barely have time to sit down and check online forum because I have been organising daily outing with my LO. I am back to taking care of him full time and also trying to find a kindergarten school for him for next year.

    I am now 12 weeks PFC and so far my energy level is quiet good. I just started taking Chia seeds soak in water everyday.

    My very first mammogram with breast ultrasound will be on 5 Sept.

    Best regards,

    Lou

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary and Lou,

    Thank you for your posts. I am sorry I did not get to answer them today, but I hope to answer tomorrow.

    To Rhonda, I was wondering how you are getting on. Is your radiotherapy now behind you and have you started Xeloda (capecitabine)? I ask this because a friend of mine was telling me about a relative whose breast cancer has come back and she is on oral Xeloda. I understand it is used to slow down the growth of cancer cells.

    Does anyone know anything about Xgeva/Prolia (denosumab). I think the friend's relative is also on this. I think it may be injections.

    Best wishes to all.

    Sylvia xxxx

  • marias
    marias Member Posts: 265

    Helloooooooooooooooooo Sylvia, Mary and all!!

    Today was my first day of lymphedema treatment was a nice massage and very gentle massage. The physiotherapist do it in both of my arms. And also in my right mama. I dont have a lymphedema but the physiotherapist said to me this is progressive so it is necessary to do the lymphatic massage in a preventive way. I will have 20 sessions of that.

    Tomorrow Im going to star the physiotherapist for my arm. Nobody tell me about the exercises in the hospital but one of my aut send my pictures about the exercises I have to do. So I did since the first day. Now I can move my arm but there is still a little bit to be able to stretch it completely.

    The radiotherapist send me 20 sessions, I dont know still when I will began.

    Next friday I will know how many chemotherapist I will take this time.

    Sylvia, yes yes I will be out of internet... thanks for your advice.

    Thanks all for your words.

    Have a nice time there.

    Marias



  • marias
    marias Member Posts: 265

    Helloooo again, I want to share with you this picture. those birds make the nest on my balcony

    image

    image

    image

    BYYYY

    Marias

  • maryna8
    maryna8 Member Posts: 1,832


    Hi, to all

    I thought this was interesting, this research is happening fairly close to where I am.

    http://krcgtv.com/news/local/mid-missouri-research...

    Mary

  • maryna8
    maryna8 Member Posts: 1,832

    Hi, Marias

    I understand now why you say you may be getting more medication. I'm glad you find the lymphatic massage pleasant. I am very surprised you were not told about the exercises in the hospital, but it's very good that you are moving your arm again now.

    Your balcony is very nice, the birds are mourning doves; they come to my birdfeeder too and eat seeds and cracked corn off the ground around it. I have heard that they mate for life. I have a bird that nests in the same place under my balcony every year, it is a swallow and it's very messy, but I leave it alone since I tried to get rid of it in the past but it won't stop building nests! Your doves are very pretty.

    Talk to you again soon, love,

    Mary


  • maryna8
    maryna8 Member Posts: 1,832

    Hi, Sylvia and all,

    I watched a TV show the other night and part of it was about screening mammograms. There was a doctor interviewed who has done research on the subject, and the findings were surprising to many people who have been told that mammograms are the "creme de la creme" of breast cancer screening. She found that was not necessarily so. For the tv program's purposes, they kept it simple, and divided breast cancer into 4 types. One is the very aggressive type that grows so quickly mammogram cannot catch it, one is a type that starts to grow, but then stops for unknown reasons. One grows so slowly that it would never bother anything( one would die of something else eventually), and one grows quickly but can be caught but not necessarily by a mammogram. Sometimes the slow-growing ones can also disappear on their own. The TV show did not name these cancers, i could tell this was aimed at an uninformed public. The doctor went on to say that screening mammograms cannot tell the difference between these cancers, and if they are seen they are the cause of many biopsies, many of which are unnecessary(I had one of those years ago). But it made me wonder.......we are always wondering why there seems to be so much BC these days. Is it possible there are just more diagnoses now, and is it possible that some of these cancers may be being treated over-aggressively? There was a statistic that stated 1 in 5 cancers might be over-diagnosed, and the doctor said that it is very likely some of these cancers may be being treated too aggressively.

    All of this made me wonder about my DIL's treatment. In her case she had a mammogram and reconstruction only. She was told that the cancer was very slow-growing and very small, smaller than the docs thought. I wonder if a complete mastectomy was even necessary? I am wondering this only here to all of you, I will not try to make her second-guess her decision.

    I am assuming that the IBC, TNBC and H+ types are the most aggressive and need to be treated. But this made me wonder about some of the others, and could answer some of our questions about the large number of women being treated for BC. since the largest percentage of women do not have one of these types.

    In my case, mammogram did not find my cancer. It grew in the 3 months between my previous mammogram and diagnosis.

    What do you think?

    Mary

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    Thank you for your first post, in which you mentioned astrology. I have no idea about the time at which I was born or what was going on with the stars or the moon. All I know is I was born in London in 1942 during the blitz. I was not born in the place I normally would have been born, because my parents' home had apparently been bombed and we were living a few miles away because of that. At that time Londoners would have been busy avoiding bombs. It is lucky no one was in the house at the time.

    By the way, please tell me when your birthday is in September.

    It is strange about birth dates. About two years ago I was in our local supermarket standing looking at the fruit, when a woman standing by me said hello and started to talk. From her accent I was sure she was French, so I said hello and then said a few words in French. I was intrigued when she said she had watched my husband and me in the supermarket and that she felt we were a 'real couple'. We became friends and I found out she had published a book, fiction, about her childhood and youth in rural France. It was in French and I bought it and read it with great pleasure and interest. She was very talented, painter, potter, writer and so on. Circumstances dictated that she returned to France this year and I did not get to say goodbye. I have no idea where she is. I found out recently that her birthday is September 3rd. It is odd that we clicked straight away.

    By the way, Raymond is a Capricorn, January 4th and Virgos and Capricorns are supposed to make ideal couples.

    Do you think that the Virgo men with whom you were friends were too fussy for you?

    I think it is good news that your daughter-in-law will not have to go through any further treatment. It is good that she will have check ups every six months for two years.

    I do remember that my breast cancer surgeon told me that breast cancer surgery was not considered major surgery and would take only about forty-five minutes. She said major surgery would be a hysterectomy or hip operation. Of course, breast cancer surgery becomes more complicated and longer if you have breast reconstruction, especially if you have it done at the same time as the breast cancer surgery.

    Let us hope that Hanieh and Amanda pop in sometime to say hello.

    I do hope you got through the funeral of your neighbour alright.

    Love

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Lou,

    It was nice to hear from you and I am glad to know that you are busy keeping your LO busy with outings. Enjoy every moment of it.

    It is good to know that you are pleased with your energy levels. I hope this continues but remember to give yourself plenty of time to recover from treatment.

    I was interested to know that you are taking chia seeds. We are told that all these seeds are very good for us. I regularly eat sunflower seeds, pumpkin seeds, linseeds, and sesame seeds. From time to time I mix in chia seeds and hemp seeds. I grind them up, put them in a cereal dish, put Sojade soy yoghurt with live culture on top and sprinkle goji berries on the top. It makes a very nice snack at any time of the day. If you leave it standing for a while, the seeds absorb the moisture from the yoghurt and it is a bit like eating cheesecake except that it is healthy!

    Be sure to let us know how you get on with your breast mammogram and ulttrasound on September 5th.

    That is all for now.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Marias,

    I was glad to know that you enjoyed the massage that is part of your lymphoedema treatment. I think it was a good idea that your physiotherapist did it in both arms and on the side of your mastectomy. It is good that she is doing this as preventive treatment. I hope you enjoy all 20 sessions.

    It is good that you are going to do physiotherapy exercises on your arm. Just be gentle, but it is important to keep the arm moving. You will gradually be able to stretch it more.

    I was interested to know that you are going to have 20 sessions of radiotherapy. It will probably be the same routine as for all of us, which is five days a week, Monday to Friday, the weekend off and then five days again. It looks as though you are having four weeks of radiotherapy. The treatment does not last long, but it can get tiring going in five days a week. Remember this treatment is toxic, even if it seems easier than chemotherapy. You will need to take good care of your skin.

    Here in the UK, before you start the radiotherapy, you usually have to go for an appointment on a prototype machine, where the area to take the radiation is marked out through indelible pinpoints.

    If you need any advice about dealing with the radiotherapy, do not be afraid of asking your radiotherapist about anything that is bothering you.

    I may have misunderstood what you meant about next Friday and seeing someone about chemotherapy. Are you going to have more chemotherapy? If so what is the reason for this? It is anything to do with the fact that the type of breast cancer you have is lobular?

    We are all thinking of you and sending very best wishes.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello again Marias,

    Thank you for those lovely photographs. What kind of birds are those in the photograph?

    I do love the colourful decorations/ornaments on the walls. What exactly are these?

    Fond thoughts.

    Sylvia xxxx


  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    Thank you for the link. I shall have a look at it tomorrow.

    Thank you for the information. I have never been very happy about mammograms and in fact was not having them until I was diagnosed with breast cancer in 2005. I have had about three since then and had them reluctantly. I do wonder whether they may be causing breast cancer and over-treatment. A nurse friend of mine told me she thought that mammograms found all sorts of things that were not a threat. This friend has had DCIS for years and no treatment and no development.

    I remember that Chris Woollams is not in favour of mammograms.

    I think that hormonal breast cancer is just as problematic as the non-hormonal ones. We all get the same treatment anyway, minus tamoxifen and the aromatase inhibitors. The people I know who have had metastases have all been hormonal.

    As for my own cancer, it arrived from nowhere and I discovered the lump myself.

    That is all for now.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    I have just read the link you kindly posted. I let Raymond have a read of it to get a second opinion. I am somewhat sceptical about it. So many of these so-called wonderful and ground breaking miracles never come to fruition. As cancer patient survivors we have to live in the here and now and in the full knowledge that cancer cells behave in all different ways and they may come back to haunt us. In the meantime, we live normal lives with optimism.

    Here we are again, Friday, and the end of the week. Here in Exmouth the forecast is for rain later today and on and off rain for the weekend. It is sad for the children on holiday because they broke up from school a week ago and they have not had nice summer weather.

    I see the Donald Trump saga about Russian interference continues. It is like a soap opera. The people who put Donald Trump into power are those who went to vote for him and I think the rest is a load of rubbish. Would it have been any different with Hillary Clinton? I doubt it. We are going through a period of bad losers. I am fed up to the teeth with politicians and think they are all self serving.

    Brexit rumbles on here, but I think it is not going to happen. The establishment, the rich and powerful, are against it and they always crush ordinary people. They are now talking about a transition period after we officially exit in March 2019 that looks likely to go on indefinitely. The Brexiteers in charge have turned out to be weak and disloyal. What is new? In the meantime free movement of people continues. The powers that be are now debating where the border between the Irish Republic and Northern Ireland should be, and think it should be in the middle of the Irish Sea! I think Northern Ireland is a remnant of English Colonialism and should be reunited with the Irish Republic.

    Are you doing anything special this weekend?

    I am glad to see that our group is coming back together again as summer passes.

    That is all for now.

    Love.

    Sylvia xxxx

  • marias
    marias Member Posts: 265

    Hello Sylvia, Mary, Val, and all of you.


    Sylvia the name of the birds is torcazas. They are really comun here in Cali. You can find them everywhere. The boy and the girl keep the babies bird.

    https://www.google.com.co/url?sa=t&rct=j&q=&esrc=s...


    They make the nidus over a piece of "guadua". This is a kind of bambu that you find here near the water.


    https://www.google.com.co/url?sa=t&rct=j&q=&esrc=s...

    Image result for guadua

    And them some artesans paint a "tucan" over this. Is a bird you can find in the "Valle del Cauca" the place where I live.

    tucan

    Today I went to the oncologist, she said to me, that I need 6 ciclos of "Create Trial" with capecitabine.

    But we are going to wait for the Immunohistochemistry to know if the tumor is still TNBC or if I mutate to another.


    I like the picture you take in your livingroom? with your husband.

    Thanks all of you for your words of support to me.

    I have a surgery of 4 of July at 12:00 am, and I went out of the hospital the same day. I had a Conservative surgery the doctor made a Quadrantectomy. Today I feel really good with my breast and my arm.

    Have a beautifull day.

    Marias

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Marias,

    Thank you for your post and for the links. I have looked at them and find them intriguing.I love that colourful picture.

    I am going to see what I can find out about capecitabine. It is a well known cancer drug.

    I shall talk to you later,

    Fond thoughts,

    Sylvia.xxx.