Calling all triple negative breast cancer patients in the UK
Comments
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Sylvia, thank you for the warm welcome! I'm hoping the neuropathy I'm feeling is temporary, or at least doesn't get worse, but I will let my MO know on wed, when I go. I'm also going to talk to her about radiation plan, still concerned with the amount they want to do. So many decisions! Thank you for sharing your story, it helps to bind us all and makes us stronger!
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Hi again, I wrote a whole long post only to delete it somehow! Am still reading all the posts and trying to catch up with all the news.
I had an awesome game reserve trip with the sisters and son, we were so spoiled and saw so much game - it was seriously the holiday of a lifetime!! Then my son came back down to Plett with me for another week.
The weather didn't play fair so we were unable to paraglide, but it's still on the cards - did want to do it with Ben, my son, but we can do it another time. Meantime I'm going to still go do it with a friend.
Of course, after all the company and excitement and treats and spending loving time with the family, now that everyone has gone home, life has come back to whatever my normal is right now, and I'm having a bit of a down period. But I'm familiar with this, goodbyes are not easy. And it's part of the price we have to pay to spend time together! Also, having so much company and being so distracted by lovely things, I didn't think too much about cancer. Now I'm home alone again the reality is seeping in again - the little voice that yells out inappropriately in my head "you've got cancer!" is back.
I start on the first session of my 3rd cycle of Paclitaxol on Tuesday, will have a cat scan at the end of the month to see how those mets in my lungs have reacted to this chemo so far. My hair is falling out ever so slowly, balding at the temples and I'm getting a very intelligent high forehead happening! It's still enough to cover the bald patches and I'm not yet ready to cut it off, but I guess another couple of chemo sessions will see it go. Fatigue is, once again, the nature of the beast for me. The anti nausea meds still control the nausea and apart from headaches and migraines I don't have any other se.
Congrats on finishing rads, Mumtobe!! I was also so happy and so blown away by all I'd done (mx, chemo & rads) then I kinda felt that I'd been cut adrift. I'd gotten used to seeing the doctor regularly and felt that someone was always around if anything went wrong with me. After 5 weeks of travelling to rads every day, not having to do that was a bonus. It was a bit difficult picking up my life again at first. It's an awesome achievement to have done the surgery and then all the chemo and rads, I take my hat off to all of us who have done it!
Love to all
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Hello Carolben
I could not believe my eyes when I saw you had posted as I have been wondering what had happened to you. I was glad to know you are still reading the posts and catching up with all the news.
I was so glad to know that you have been away on holiday with your sisters and son. I am sure that such a holiday has done you more good than anything else possibly could. I was so glad that you then had extra time with your son.
Let us know when you paraglide with your friend.
I can imagine how strange it feels to be back on your own after having all that company and having an enjoyable time. It must feel quite empty and I can understand that you are feeling a bit down. All you can do is to try to keep as busy as your fatigue allows while you are going through treatment.
it was good that you were able to put cancer out of your mind for a while and let us hope that you will be able to do that again very soon.
I shall be thinking of you on Tuesday when you go for your chemotherapy and I do hope you will have good results from the CAT scan at the end of the month.
Look after yourself during your chemotherapy and get as much rest as you need. I thought of you last week when I bought some black grapes that came from South Africa and were called Autumn Royals.
Welcome back to the thread.
Fond thoughts.
Sylvia xxxx
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Hi again, I wrote a whole long post only to delete it somehow! Am still reading all the posts and trying to catch up with all the news.
I had an awesome game reserve trip with the sisters and son, we were so spoiled and saw so much game - it was seriously the holiday of a lifetime!! Then my son came back down to Plett with me for another week.
The weather didn't play fair so we were unable to paraglide, but it's still on the cards - did want to do it with Ben, my son, but we can do it another time. Meantime I'm going to still go do it with a friend.
Of course, after all the company and excitement and treats and spending loving time with the family, now that everyone has gone home, life has come back to whatever my normal is right now, and I'm having a bit of a down period. But I'm familiar with this, goodbyes are not easy. And it's part of the price we have to pay to spend time together! Also, having so much company and being so distracted by lovely things, I didn't think too much about cancer. Now I'm home alone again the reality is seeping in again - the little voice that yells out inappropriately in my head "you've got cancer!" is back.
I start on the first session of my 3rd cycle of Paclitaxol on Tuesday, will have a cat scan at the end of the month to see how those mets in my lungs have reacted to this chemo so far. My hair is falling out ever so slowly, balding at the temples and I'm getting a very intelligent high forehead happening! It's still enough to cover the bald patches and I'm not yet ready to cut it off, but I guess another couple of chemo sessions will see it go. Fatigue is, once again, the nature of the beast for me. The anti nausea meds still control the nausea and apart from headaches and migraines I don't have any other se.
Congrats on finishing rads, Mumtobe!! I was also so happy and so blown away by all I'd done (mx, chemo & rads) then I kinda felt that I'd been cut adrift. I'd gotten used to seeing the doctor regularly and felt that someone was always around if anything went wrong with me. After 5 weeks of travelling to rads every day, not having to do that was a bonus. It was a bit difficult picking up my life again at first. It's an awesome achievement to have done the surgery and then all the chemo and rads, I take my hat off to all of us who have done it!
Love to all
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Hello slv58
Thank you for your post. It would be interesting if you ask your oncologist about what can be done to alleviate or cure neuropathy to see how it compares with what I have been told.
I hope all goes well on Wednesday and make sure you get answers to all your questions. Remember the posting I did about Informed Consent.
B Benefits
R Risks (and in this case short and long term risks)
A Alternatives
I Intuition (what is my gut feeling about proposed treatment?)
N Nothing (what happens if I do nothing?)
I think it is a good idea to use the above when faced with doctors, consultants, oncologists etc., to get everything about your treatment out in the open and to help you make decisions.
Wishing you well.
Sylvia xxxx
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Hello peterandliz
Thank you for your post and filling in some more details.
I think it is true that we are all in charge of our treatment and after being fully informed we make our decisions. None of us really knows the effectiveness of chemotherapy and how we would do without it? I have a neighbour who had breast cancer about twenty five years ago, had just surgery and is still alive to tell the tale. I do not know the details, but back then I think patients were told next to nothing.
I was glad to know that you have changed your doctor for Liz's next check up, as it is important to be able to feel at ease with your doctors. I had an all female medical team and I had confidence in them as well as being at ease with them. I think that helped me a lot.
I think you have the right attitude in deciding to get on with your life. We cannot spend our time worrying about whether it is going to come back, spread or whether we have a new primary. All we can do is live in the here and now and face whatever we have to in the future.
I do like your plan to enjoy life and see as much of the world as possible.
Best wishes to both of you.
Sylvia.
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Hello everyone. I have followed this discussion since I was first diagnosed. In 2011 a tumour appeared in the space of a day...not there after my morning shower but showed itself when brushing my teeth later that night. It was 4.5cm in diameter and looked like half of a bruised golf ball. The diagnosis was stage II, grade 3, triple negative 'basal- like' BC. I was 45 at the time.
Not once did I feel compelled to cry. Out of the 1/8 women who now get this disease, I can honestly say that there is nothing so special about me, that I shouldn't be the one...at least 7 others didn't get it.
I have been through hell and back with neo-adjuvant therapy with a lumpectomy and bi-lateral reduction. Too many complications to list here, but my lymph nodes were clear 0/5.
Now I am with another surgeon whom I will see this afternoon...only now I have another lump in my other breast. I don't know how or what to feel, as my husband of 15 years wants to leave me. I have 5 sisters and not one has picked up the phone. Telling them was the hardest part of all...I had to repeatedly apologise as I was asked how they would tell their daughters. When I put the phone down, only then, did tears of guilt stream down my face. Like most people here, my life has been spent looking after everyone else. I wouldn't know how to put myself first.
The out-of-the-blue statement from my husband is the hardest to deal with. I've known him 20 years and gave up my dreams to support him and his career. Yes, I know...how dumb can one person be?
I wish all of you the best that life has to offer and the strength to keep going. I have always been a very positive person and maybe that got me through the first lot of surgery...along with good friends.
Now I don't know how to feel, as my husband ignores me, but has a public persona that belies who he really is. I can put my hand on heart and say that I gave him everything. What now?0 -
Hi Sam,
I am very sorry to here you are going through this again after only 2 years. I guess if you have had a good 20 years with your husband he is just looking for a way out from what has probably been a nightmare the last 2 years for him as well as for you. Speaking as a man I can see how many men take the easy option. Liz is on a facebook thread of about 30 women that went through Cancer treatments at the same time and many of them are single now, have new partners or are going through a bad time with their partners. I see you have not mentioned your own children so I presume they are grown up or you do not have any? This also makes it easier for him. My OWN opinion is talk to him be very honest with each other and if he still thinks he wants to leave aim any anger you have at him, get as much out of him as possible and enjoy spending it.
Your sisters are not helping you. If they are local go and see each one and get them on your side. If your husband leaves you, you may need them. It is also important for them IF you carry the BRCA gene, as they have daughters of their own.
Sorry if my comments sound hard to anyone on here.
You need to be strong and possitive at this point, you cannot let anyone around you bring you down. Getting through the next year is the most important thing for you.
Peter
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Hello Sam_UK
Thank you for your post. Thank you for all the details about what has been happening to you. I am so sorry that you have been diagnosed with breast cancer but glad that you have now joined us to share your story with us. I hope that you will find some support and companionship as with cancer it is not good to go on a lone journey.
I was sorry to know that you had such a bad time with neo-adjuvant chemotherapy, a lumpectomy and a bilateral reduction. What combination of chemotherapy did you have and how many sessions? What kind of breast cancer did you have? A lot of women have invasive ductal carcinoma (IDC). I think it is about 85% of women and some have positive receptors and some have negative ones. The good thing about all of this, if anything can be said to be good, is that you were stage 2 and had no lymph nodes affected. I was so sorry to know that you had a lot of complications.
I do hope everything will go well this afternoon when you see another surgeon and I am so very sorry to know that you have a lump in your other breast. Please let us know how you get on and whether this is a new primary in your other breast or whether it is something that has spread from the original tumour in the other breast. Please let us help you through this.
I cannot believe that your husband of fifteen years has chosen this very difficult time to tell you he wants to leave you. I have heard this quite a lot over the years and on this forum. For some reason men cannot deal with their wives having breast cancer and others are of huge comfort and cannot do enough to support their wives through this awful ordeal which goes to the heart of their femininity and sexuality. Have you and your husband thought of having counselling? There should be something at your hospital to help you through this. I do not know where you are in the UK but the hospital that I attend in Exeter has a lovely modern house where a charity known as FORCE offers all kinds of free counselling and complementary services. What is it that your husband cannot deal with? You have to try to look at it from his point of view and from the family's. Often they are afraid of everything and afraid for you so have this feeling of needing to run away. He needs to realise how frightening it is for you and, somehow, has to step up to the plate and be there for you. If he were the one with cancer would he expect you to support him or to run away? That is a question that I would put to him. He needs to remember that we marry and promise to be there for each other in sickness and in health.
As for your sisters, I cannot understand why they are not there to support you, but again it could be fear. Again, if I were you, I would be asking them whether they would expect support if they were the ones with cancer.
You have no reason to feel guilty about having been diagnosed with breast cancer and you certainly had no reason to apologise. None of us knows why we get diagnosed with cancer. There are multiple risks but we cannot say for certain what the cause was. I tend to think it is the luck of the draw.
As for your sisters worrying about telling their daughters, it is up to them to find a way depending on the age of their daughters. I have four nieces, but no children of my own, and no sisters, but it was not a problem for the nieces to be told and they supported me. Your sisters need to do a bit of thinking and give you some support.
Right now you must think of yourself and concentrate on getting better. Now is the time to put yourself first and get through whatever treatment you will need to have.
Please come to the thread and talk to us and we shall try to comfort you and get you through this.
Unusually for the forum, we have two men on this thread who have had wives with breast cancer and I do hope they will be able to help. We have Peter who has just joined and I noticed that he has already posted. We also have Michael, whose wife unfortunately died of breast cancer (TNBC) last year, so he will be able to tell you his experiences. Michael had already gone through non-Hodgkins lymphoma himself and is now dealing with it again. You might like to look at the foundation he set up in his wife's memory. It is the Janette Collins Foundation.
You are still young enough to make a new life for yourself if it has to be. After twenty years of living for someone else, perhaps it is time to fulfil your own dreams. I hope you can sort it out one way or another.
I am glad to know that you have some good friends and I am sure they will help you through this. It is good that you are a positive person and this will help you get through whatever you have to face. You can come to us for support.
Sending warm thoughts your way and hoping you will keep in touch.
Sylvia xxxx
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Hello Sam_UK again,
I just wanted to say that it would be a good idea to ask to get genetic testing for BRCA1 or 2, given the relatively young age at which you were diagnosed. Have you any close family members that were diagnosed with breast cancer at a relatively young age? Remember too that breast cancer can pass down through families via male members as well as female members. You might also want to check out cases of prostate cancer as these tumours are similar.
Hope to hear from you.
Sylvia xxxx
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Hello Peter,
Thank you for posting in to support Sam. I have tried to make this thread all about mutual support and to be as interactive as possible. You are exactly what we need.
Best wishes.
Sylvia
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Hello PeggySull,
Thank you for your PM.
I was very pleased to hear from you and am replying on the thread because I think it is important to share experiences and treatment with everyone, so that we encourage and make progress.
I was so glad to know that you are doing so well and that your treatment is now behind you. Well done. It looks as though yoga is very beneficial in keeping fit. I was glad to know that your surgery and reconstruction went well and that you are recovering well with not too much pain. I was glad to have the information about reconstruction as it is not something that I opted for. It is useful to know that you found a plastic surgeon that could do a direct implant procedure and that you did not have what you describe as painful tissue expander plus exchange surgery. I am sure that will be useful information for other women who are planning on surgery with reconstruction. It is good that you will be able to get periodic scans free of charge.
Thank you for the information about the pathology report on chemotherapy response. I had neo-adjuvant chemotherapy as I had a large tumour and did not have a complete shrinkage and I do not think the oncologists expect you to. However, after chemotherapy I had a mastectomy and then radiotherapy and then was given an excellent pathology report and told there was no evidence of disease.
I would think that your medical team will be able to deal with the newly discovered DCIS.
Give yourself time to recover from all this before getting into too much exercise. Gently does it!
I think a healthy diet is very important and I think we all know on this thread that sugar and dairy products are not good for us. I think it is very important to be on a healthy diet, based on lots of fruit and vegetables.
Please let us know how you get on and what treatment is being proposed for you.
Like you, I do not like ambiguity and I need to get everything clear in my mind.
Today has been the mildest day in a long time. It has been dry and mild and just the day for a nice walk.
Thinking of you and wishing you well.
Sylvia xxxx
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Hello adagio,
I just wanted to say what a brilliant book Your Bones is. Thank you so much for telling me about it.
I have read the section on Strontium and found it most useful. I now know to steer clear of the patented and artificial strontium ranelate that is being prescribed by the doctors. The possible side effects are awful. Strontium citrate appears to be safe and I am thinking of buying some and integrating it into my own devised osteoporosis treatment and seeing how I get on.
I hope you will have a good week and that your radiotherapy will go well.
Keep well.
Sylvia xxxx
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Hello everyone,
To all our regular posters I just wanted to say that I hope you have a good week and that those on treatment will not have too many side effects and will keep looking forward to the end. Anyone who can, please try to pop in, especially if you have finished treatment, and offer comfort and encouragement to those who need it.
Thinking of you all.
Sylvia xxxx
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Today I had my 14th radiation treatment and I am amazed that my skin is holding up beautifully - I am so grateful. Only 6 more times to go - yeah!!!
Sylvie - I must get "Your Bones" to read myself - it sounds good. I talked to the woman at my local health food store and we were talking about calcium supplements - she believes that magnesium is even more important than calcium for the bones. I mentioned Strontium to her and she said it was very good, but she also felt that if I was taking VitK2 - that it would have the same effect!! I wish I had more time to read up on all this stuff - maybe after my treatments are all over.
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Thank you so very much for taking the time and for making the effort to help me. I am genuinely moved that there are people who care. My cancer was IDC which was shrunk over 5months of chemotherapy: Epirubicin and Cyclophosphamide (EC?). I had one treatment of Docetaxel but had a "severe toxic reaction" including hallucinations, loss of nails and plantar palmar syndrome...it was decided to put me on double doses of Dexamethasone and my weight rocketed (on the way back to 'normal') now.
After that, the tumour was removed along with 7mm of DCIS, which was a worry, but unfortunately my bilateral reduction was not symmetrical ! So many issues and scarring, that if I had been through a mastectomy, the scarring would have been considerably less. I have lost count of the surgeries but one operation left me with a post op haemorrhage that was missed. Despite addressing the severe pain numerous times, I was given two ECGs and told that I was fine. Three weeks later the large haematoma that covered my breast, broke away from my chest wall and I began haemorrhaging again...drama, ambulance and eventually resuscitated.
Sorry if this is long and monotonous, but I am trying to keep to the major events, ignoring the horrific asides along the way!
Oh the radiotherapy was the IMRT type, 3 weeks of 10 mins per day, then a week of a booster of 10 seconds per day.
On the marriage side of things, I should have known better but took my vows seriously. I only married to have children and have none. Intimacy stopped long ago, just as it did with his first wife of only a few years. When my mother died, he told me to stop crying as HE couldn't handle it...so I didn't cry when my dad died. When I needed both shoulders operated on, he told me not to have the second shoulder done as he 'couldn't go through that again'...it was six years later when I couldn't move my arm at all, that I had the surgery. His excuse is not that of a frightened man, but one who probably thinks that I have outlived my usefulness. A particularly hurtful comment was " I just want to be on my own" , oh and the not-so-subtle "I can't imagine ever wanting to be intimate with you"...always had a knack of doing something worse when I am down...which isn't often, but I am ashamed to finally admit, I am so tired. I don't fear death...living is the hard part for me. It's like trying to hold water in my hands.
My family think I am invincible and bizarrely, really strong. I have always been there for them and I feel almost betrayed, deserted even. Do I sound self-pitying? Gosh I hope not. This is the first time that I can admit that I am scared. My marriage, which was not showing any signs of problems until a week ago...more cancer? They didn't want to discuss the new lump today, only how to fix all the things that have gone wrong before. Is it me who is the dumb one here, or are they putting the cart in front of the horse? I was told if it came back then it was terminal. Today, the new team completely disagree. Crystal ball anyone?
Once again thank you so very much for your encouragement and support. Please forgive me if I have made this too long. I truly appreciate your help and advice.
I wish you all much happiness and better health.0 -
Hi Sam,
I just wanted to send you support and admiration for all that you have been through ,essentially on your own. No wonder you are tired and worn out both physically and emotionally.
I was feeling low and unable to speak about how scared I was or how I felt about my body or the person that I had become and found this thread so supportive and somewhere that I could say how I really felt.
I have no crystal ball but what I do see is a woman who deserves to live, do not give up.You are not self pitying you are going through a tough time.
I am so lucky to have found a support centre near me and I go to counselling and meditation there. I probably wouldnt have considered them before the cancer but for me they are a lifeline and help me with other aspects of my life.Is there anywhere near you?
Even though we cannot be there physically please know that Sylvia and the others on these boards become a virtual family who care about you unconditionally.
Thinking of you
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Hi Sam,
Sorry to here of all the problems you are having or have had in the past. I would have thought if none of the past problems they were trying to correct yesterday are life threatening the new lump would have been the most important thing to look at and get diagnosed? I would not have left the hospital yesterday without having tests on the new lump unless they could convince me otherwise. I have been thrown out of hotels before for complaining to much but we need to stand up for what we want as it is our lives.
Did you go on your own yesterday? If you did and you have a good friend that will go with you next time take them. Especially if they will speak up. I know at our hospital they have more cancer patients than they can cope with so will hurry through the ones they can to get to see everyone.
As far as your husband is concerned if he is only bringing you down and is not any help at all get rid of him. Sorry to be blunt but you only need possitive people around you. If he is not going to support you and only thinks of himself why keep him? I know You will not believe me but there are many men out there that will treat you right and with the respect you deserve.
Peter
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Thank you Linali, I wish that I could adequately convey in words just how much the support means to me. I am isolated where I live, as I found my husband the job he had been hoping for, after searching for over 3 years. I am unfamiliar with the area and to make things worse, he is very well known in the locale because of his job. Not once have we been out where he hasn't run into people (no he doesn't feel the need to introduce me), but I feel so mutilated that it doesn't bother me.
This morning he announced that he is going to move out...I cannot afford to stay in this house on my own, which I spent the last four years renovating. The housing market makes it impossible to sell without going into serious negative equity.
My brothers and sisters don't live anywhere near me. One brother who lives 70 miles away sends the occasional email, but he thinks the world of my husband (if only he knew) and would undoubtedly blame me for any break-up. Gosh even typing those words feels like my heart is being ripped out. My brother is every inch a 'man's man' and doesn't have a clue what life is like for me. His reaction to my call about the diagnosis was an immediate "well that's going to be just great to have to tell my daughter..." followed by my profuse apologies, yet again....will it ever stop?
There is no familial history of breast cancer or prostate cancer. One brother died aged 19 of leukaemia, when I was little. In a way, it is a blessing that my parents don't have to live through another child with cancer. My mum never really got over the death of my brother.
On Thursday, I see the surgeon, re the new lump in my left breast. My husband is working but a good friend changed her work schedule around so that she could be with me. I'm just so grateful, for my friend and to everyone here. I am lost for the right words...truly. I have been afforded more support in the last few days, than I have in the last 20 years! I am so humbled and feel so privileged, that you are out there for me.
I wish you all, improved health and much happiness. I hope too that you can find many precious moments along the way. Thank you for helping me, a stranger...but a very grateful one too! Please forgive me for feeling pathetic...I don' t know what happens now but your words of kindness give me solace.
In closing may I include some advice given to me by the radiologists? To help your skin to cope with the radiation, I was advised to use 100% aloe Vera mixed with equal parts of aqueous cream...every day and for 3 weeks after treatment. It worked! I had no external adverse skin reaction whatsoever. These creams are easy to buy and the aloe Vera was in a gel like pump at 99.9% content. Hope this helps.
Thank you everyone, sincerely,/p>0 -
Thank you for your opinion Peter and Liz, but I don't have much choice. The feeling of powerlessness is overwhelming. It's good to hear your point of view as it helps me to try and wrap my head around it all.
I am very grateful to you. I couldn't understand why they refused to even consider the lump? It was only after saying that I would cut it out myself, that I was told to return on Thursday. I think that as good as health professionals are, they forget there is a human being behind the diagnosis. I've heard patients being referred to, by their medical condition rather than their name...I find that hard.
I live in the south- east, just..and my second surgeon is in London! Believe me when I tell you that I have only ever been there to go to hospital! Gosh I'm such a pushover : ( I rely on taxis to know where they are going. My husband goes regularly for work and when he first brought me by train, he took off at such speed, I just stopped and looked at him off in the distance. I haven't got my full strength back and it was so disheartening.
My life for the last 20 years has been, project manager, accountant, career manager, travel agent, cook, landscaper, interior designer, sounding board and general dog's body. So maybe I made this monster, by doing it all? Whatever he wanted he got. He doesn't even push the button on the shredder! I had a year's worth of paperwork piled up for me when I got through chemotherapy.
I want to go to a lovely small villa somewhere in Europe, maybe for a month or so...to empty the poison I feel has taken over. Now I don't know if I can afford to, or if I'll even have a home upon my return!
How naive I was sitting in front of the first surgeon and saying, ok fix me please?
I was CLUELESS...nobody tells you how cancer takes a huge bite out of your life. It touches everything as you all know. Perhaps if the medical profession told us upfront, the enormity of each eventuality could be lessened?
Just a thought.
Thank you for your support which is probably more than I deserve. I am a fool to myself.0 -
Hello adagio,
Thank you for your post. I was so glad to know that everything is going so well with your radiation as far as your skin is concerned. You are nearly there. This time next week you should be finished and can look forward to the enjoyable days of spring and summer.
The Your Bones book is well worth having as a reference book. There seems to be so many problems with bones in women especially and I am going to read this book from cover to cover. I have just started and am about to read the chapter on bisphosphonates, which is chapter 2. The title is not very encouraging but then even before I read it, I have already given a resounding NO to bisphosphonates as far as I am concerned! The title is The Bisphosphonate Patent Medicines Prescribed to Prevent Osteoporosis Should be your LAST Choice for Healthy Bones. I shall let you know more details when I have read the chapter. This chapter starts at page 11 and ends at page 81. The book is divided into parts and chapters and part two is entitled Why Conventional Medicine is NOT the Answer for Strong Bones.
As far as magnesium is concerned, I have read many times that it is very important in the treatment and prevention of osteoporosis. The Solgar supplements have half magnesium to calcium (250 mg calcium citrate to 125 mg magnesium citrate). I usually add a 100 mg magnesium citrate supplement. I am also taking vitamin K as part of the Solgar supplement but every other day also take a separate vitamin K supplement. I think a combination is needed.
As for strontium, having read that part in this book, I am also saying a big NO to the patented drug strontium ranelate, which seems to be as bad as the bisphosphonates. I have ordered, on line, some strontium citrate supplements to try. At least strontium citrate is a natural form of strontium, whereas the ranelate is a synthetic form made up by the drug companies, whom I do not trust.
I think all women need to be aware of how fragile their bones can get and need to take care of them, by eating a calcium rich diet (but not dairy as far as I am concerned). We also need to walk regularly.
As we age our bones seem inclined to thin so we have to help ourselves to keep them strong.
Waiting eagerly for you to announce to all of us that you have finished with radiotherapy.
Has your medical team mentioned any long term side effects of radiotherapy that patients may have? We need all the information we can get, even if we have to drag it out of the medical experts. Our bodies belong to us.
Thinking of you.
Sylvia xxxx
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Hello Sam_UK
I am so glad that you are posting and getting some support from us.
You had the same chemotherapy drugs as I did.
I was sorry to hear that you had a severe toxic reaction to the docetaxel (Taxotere). I do know that loss of nails can be quite common with this drug. With me some of the toenails just turned brown. It was while I was on the three months of docetaxel that my eyebrows and eyelashes disappeared. They grew back but they have never been quite the same. The toxic effect of these chemotherapy drugs is unbelievable but they are all we have to keep us alive. The only real answer is prevention and before this can be done we have to know the causes. In the meantime we can get through the short term side effects while we are on treatment, but the real concern is the damage these drugs have done in the long term to our bodies. One of these seems to be damage to our bones, resulting in osteopenia and osteoporosis, not to mention possible damage to our hearts and blood vessels.
I can imagine how awful it must have been for you to be on double doses of dexamethasone, which is a powerful steroid. I had just a few dexamethasone tablets for the first couple of days after chemotherapy treatment, but my weight remained stable throughout my treatment. I think the medics were cautious with me because on my consent form for treatment I had said I was against steroids, would not take them long term and would not take them if I felt I did not want to.
I cannot believe all the trauma you have been through and all the problems you have had with various surgeries. This is not the first time that I have read this on these threads. I am reminded of a dear woman called Dulcie who used to post and had had all kinds of bad treatment and experiences and ended up with metastatic breast cancer. She stopped posting so we have no idea what has happened to her.
You must be a very strong woman to have got through all of this and this makes me think that somehow you will get through the rest. Please feel free to write as much as you like and get all of this out of your system, and hopefully we can help you to get rid of stress and get some relief and relaxation. Stress increases the levels of the hormone cortisol in your body and you do not want this. You have enough stress already with a new tumour.
Try to clear your mind as much as possible of all the worries going through it. Try to put them all away in a corner and then deal with one thing at a time. Your priority at this time is to deal with the new tumour and to take control of your treatment, make sure you get what is best for you, and take care of yourself to recovery.
I know I am only judging your marriage side of things as an outsider, but I get the feeling that this man has some serious problems. It looks as though he cannot deal at all with other people's emotions. Crying is a natural process in grief and sadness and it is far better to cry than to bottle up your emotions. I know that if my husband had said half the things that yours has said to you, I would have shown him the door. It is a very stressful time when a relationship ends but there is life after it. I can understand your tiredness, breast cancer treatment does that to all of us and you have all this emotional anguish in addition. It seems to me that this man is not worthy of you. Get rid of him, get yourself to the end of this cancer journey and then look forward to making a new life for yourself. There are plenty of other men out there and you can find happiness.
I do hope your family will rally round you. With five sisters and a brother they could give you so much help and support.
Make sure that you speak up for your self at the hospital and that you get prompt and excellent treatment. This is your body and you are your own best advocate. Be strong and above all do not allow yourself to be talked down to. It is my understanding that you are considered terminal only when you have metastases (spread) from the original tumour to other organs of the body. Terminal can be something that can last for years. It just means that you can be treated but you cannot be 'cured'. If you have recurrence or a new primary my understanding is that this is not considered terminal.
When you have spread to another organ some seem to class themselves as stage 4 breast cancer, but I have read that you are only stage 4 if that is what you were at your original diagnosis. That at least is my understanding. I think I have also read that some say you are still classed in the original stage, that is, for example, stage 2 breast cancer with metastases to whatever organ, for example the lungs.
I do not really understand the cure or not cure bit. I do not think the word cure should be used. You can be free of cancer for years and then it can come back, so I do not see how any of us can say we are cured.
Please remember write as much as you like, as long as you like and get it out of your system.
Big hugs from all of us here.
Fond thoughts.
Sylvia xxxx
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Hello linali,
Thank you for popping in to support Sam_UK. I know how kind and supportive you are to others. I do hope all is going well with you. Is there anything new at the centre?
Thinking of you.
Sylvia xxxx
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Hello Peter,
I just wanted to say you are dead right about speaking up for yourself wherever you may be. You cannot let people walk all over you and when it comes to medical treatment, you have definitely got to defend yourself.
You are right, too, to tell Sam_UK to take someone with her. It is always better to have two people listening and watching as one person alone can miss important information. My husband came to every chemotherapy session with me, practically lived at the hospital when I had surgery, came to radiotherapy and still comes to all my check ups. He was an absolute rock for me.
I feel very concerned at what you said about having so many cancer patients at your hospital that they hurry people through. This is not what cancer patients need.
Best wishes.
Sylvia
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Hello Michael,
I just want to say that I hope all is well with you as we have not heard from you. I hope the treatment is going well and that you are taking good care of yourself. I hope work is not too stressful and was wondering what interesting topics you are dealing with nowadays.
Fond thoughts.
Sylvia
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Hi Sylvia
I had my third treatment on Monday which was only 17 days from my last. The change was to fit in with my consultants clinic rather than see the registrar. There was a trial recently where treatment was given every 14 days but I don't know the results of it.
Today is damp and windy so the dog and I are just going to loaf about the house. Thankfully she isn't too demanding and as long as I play ball and tug-of-war she is happy and when my neighbours wee girls get home from school she will go out and play with them in the courtyard.
I am not working at the moment; I am sure I could but considering the weather I didn't fancy going door to door.
Hopefully I will be at my sister-in-law in Hackney next week and then down to my friend in Dorset for an evening.
I posted this link in the research section on the Foundation website
Omega-3s especially good at inhibiting triple-negative breast cancer
Perhaps you had read it, I found it interesting. I was reading yesterday about some recent Australian research where they have successfully treated rodents for TNBC but I didn't post the link because they have been curing mice for years but more often it doesn't work for humans.
I hope you and your husband are well and that the weather has picked up in your part of the. World.
Best wishes to everyone
Michael
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Hi Sylvia,
Leigh's birthday was yesterday and so have been busy with that. Unfortunately I had to miss a meeting about a booklet that we are putting together at the centre. Mary is trying to make it as comprehensive as it can be and will cover everything that may be useful when you are diagnosed. The HSE have promised to publish it and also we will be officially recognised in may. A big achievement and thanks to Mary and her persistence.Any tips would be welcome.
The centre has become so busy especially on Tuesday and Thursday when the main activities take place. Sadly more and more people are contacting the centre. We were saying on Saturday that it is like an epidemic sweeping through Clare.There are all different cancers and more young people and their families contacting the centre. The requests for counselling have spiralled and so one of the counsellors has suggested a group be set up that she will facilitate.
I have 3 appts coming up ,pain consultant, radiotherapy and lymphadema and then to get results of my bloods. So fingers crossed that nothing bad shows up.
I have actually stopped procrastinating.....a big personal fault , and booked a flight for my 60th in June. I will spend a week with my 2 sisters and we will meet up with the other for a weekend in Chester.
Quite a few people being re diagnosed but are doing well with treatment so whilst it is very worrying its good to know that there are options.
I'm just off to town as Leigh bought a second hand games console and they gave him the wrong charger. Also Kerry and my beautiful little man are coming to visit so I need to do a big food shop. Wonder if they sell energy in bottle as I need so much to keep up with him!!!!
Very windy here. Meditation at 11 and will think of everyone in the healing session.
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Hello Michael,
Thank you for your post. It was nice to hear from you. Thank you for letting us know that you had your third treatment on Monday and that it was done so that you could fit in with your consultant's clinic rather than see the registrar. I feel it is always better to see your consultant if you can.
I was interested to know that there was a trial recently about giving treatment every fourteen days. It would be interesting to know the results. I know the women having chemotherapy every fourteen days have found it easier and with side effects than having it every three weeks.
I do not blame you for staying put at home, especially when the weather is not very good. It must be nice just to relax in your home and have your dog for company. A bit of rest can only do you good.
Thank you for posting the link about omega-3s and their beneficial effect on inhibiting TNBC. It is a very interesting article and gives some hope and encouragement for all the women diagnosed with breast cancer with triple negative receptors. I do urge all of you viewing and posting on this thread to read the article that Michael has very kindly taken the trouble to post. This is the only way that we, the patients and survivors can make progress in our knowledge and talk to out medical teams about what we know. It is not good enough to sit back and be passive observers. We have to be active in this challenge with cancer.
Michael, what do you think about the article. I do take omega-3 fish oil capsules and I eat a lot of fish, especially oily fish. I also eat plenty of seeds, especially linseeds. These are easy things to do. I still believe that, although the causes of cancer are probably multiple, our diet plays an important part and that the western diet is very bad for us. It is not that difficult to eat a healthy diet, it just requires a little effort and a willingness to dump junk food.
I think I remember reading the importance of the length of telomeres in our body and how omega-3s help to lengthen them.
I was surprised to learn from that article that multiple births may be one of the causes of triple negative breast cancer. What do you think? A lot of us with TNBC seem to have had no children at all, which is my case. On the other hand, my maternal grandmother died of metastatic breast cancer in 1975 and she had had nine children. It makes you wonder what to think. I am also wondering why Latina and Afro-Americans are said to have more triple negatives than white women, but in general have fewer cancers than white women.
I found the article most interesting and was especially interested in the four categories of breast cancer, luminal A, luminal B, HER2+ and TNBC. I think all four categories have their downsides. It is not by any means all easy going if you are not TNBC.
I would be most interested in reading about the successful treatment for rodents with TNBC. I have a thirst for knowledge in all things that is unquenchable.
Raymond and I are well and we try to keep busy. We are looking forward to some better weather, so that we can do more walking. We have a bit of sun today, but we had a huge downpour about three hours ago just as we were gong out.
I hope you have a good time with your sister-in-law in Hackney and a good evening with your friend in Dorset.
I have been trawling through some of the threads and again feel concerned about the number of people being diagnosed with breast cancer. I still think that the birth control pill plays a part in this as I think it upsets the hormones and natural processes in the body. I am also concerned about the number of people saying they have acquired auto-immune diseases following chemotherapy and probably radiotherapy.
Thinking of you, wishing you well and sending fond thoughts your way.
Sylvia
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Hello linali (Lindsay)
Thank you for your post.
I do hope that you had a good time on Leigh's birthday.
I was very interested to know that you are putting together a booklet at the centre. That is an excellent idea. It will be so useful to have at your fingertips comprehensive information that may be useful when you are diagnosed. You and Mary and the rest of your team are to be congratulated for your dedication. It is so easy when you are diagnosed to pick up a lot of support and information and then disappear when you have finished your own personal journey. I can understand people want to put it all behind them, but if everybody did that, there would be no support systems for anyone. Dedication is the name of the game. I think the main thing about a booklet is to keep it simple and easily understandable. Let me know how it goes.
I am not surprised to learn that your centre has become very busy. It seems to me that more and more people are being diagnosed with cancer of all kinds all over the world, but especially in the west. It is very frightening and I just hope treatment does not deteriorate as the numbers increase. I still think there is not enough emphasis on prevention and I think that goes for all aspects of health.
I think counselling is very important and all hospitals need to offer it. Here in Exmouth we have Hospiscare that offers counselling, help and visits to cancer patients and their families. In Exeter there is FORCE cancer charity in a modern house in the hospital grounds. The president is my own oncologist and she is a really dedicated woman.
I do hope that all your appointments will go well and that you will get any help and support you need. I shall certainly be thinking of you and hoping all news will be good.
I was so glad to know that you have made plans for your sixtieth birthday and I am sure you will have a good time with your sisters. Is your birthday June 10th? I seem to remember that you share a birthday with your daughter or am I wrong? There are so many people that have been through this thread since September 12th 2012 that it is not always easy to remember all the facts. I do remember you made a special point about the date of your birthday. Was that the date you were diagnosed?
I do hope you have an enjoyable family time with Leigh, Kerry and little Oskar. I think we could all do with some bottles of energy.
Keep well, Lindsay, and enjoy your days to the full.
Best wishes.
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
We have not heard from you in a while and I just hope all is fine. I have missed your informative posts and the useful links that you often post.
To Placid44, Cynthie and adagio, I hope all is going well with your radiotherapy.
To Sjesse12345 in Edmonton Canada, I hope all is going well with your chemotherapy.
To Carolben, I hope you have managed to pick up after your holiday and that all is progressing with your chemotherapy. Please keep in touch.
To PeggySull, I hope you are having a good week.
To Sam_UK, I hope your spirits have picked up a bit and that you know what is happening with your treatment.
To Lolalee, how are things going in Hong Kong?
To sam52, thinking of you and wishing you well. I have decided to start taking some natural strontium citrate to help with my osteoporosis.
To Mumtobe, I hope you are still enjoying life.
To EmmaL, we have not heard from you in a while and I just wanted to say I hope all is progressing well with your chemotherapy.
To PeterandLiz, I hope all is well with you and thank you for your contribution this week.
To slv58, I was just wondering how you are.
Best wishes to all of you and hope the week has been good to you.
Sylvia
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