Calling all triple negative breast cancer patients in the UK
Comments
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Hello Michael
I do hope you will find the links useful. You know I always welcome your comments.
Best wishes.
Sylvia
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Hello peterandliz,
Thank you for your post. You always write in an interesting way. I do agree with all that you said about the difference between Facebook and forums. Of course, one is for social networking and the other is for cancer support. I do appreciate that Facebook is now a way of life for a lot of people and is a way for the people of the world to keep in touch. I have quite a few cousins on Facebook and they post photographs of family weddings, birthdays, anniversaries etc. Raymond is on Facebook but he does not really post.
I am glad to know that you and Liz get so much enjoyment out of Facebook. It is a good way of keeping in touch. Do you use Twitter? Raymond and I sometimes use Skype to talk to a friend in Canada.
I hope you both have a good week and look forward to hearing from you.
Fond thoughts.
Sylvia.
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Hello everyone
I thought you would be interested to know about an article I found in a newspaper last week. It was entitled Short blast of radiotherapy curbs breast cancer best. It said that women with breast cancer get as much benefit from three weeks of radiotherapy treatment as from the international standard five week course. It also says that, of course, fewer trips to the hospital mean that patients do not suffer as much fatigue.
I did not know that five weeks was the international standard. I had three weeks of radiotherapy with boosters. Boosters meant a bit extra on each treatment and not something that was added on after the three week treatment.
I thought this might be useful information for any of you about to start radiotherapy. If you want to read more of this article from the Daily Mail by Jenny Hope, Medical Correspondent.
Shorter treatment will of course mean less harm done to the body. Research is looking into perhaps one week of treatment. Please read the article.
Best wishes.
Sylvia
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Hi ladies
I'm new to this so please bear with me. I'm a 40 year old Scottish girl and have just been diagnosed with Stage 1 or 2, grade 3 IDC TNBC. Friday I completed the first stage of my journey with surgery, left breast lumpectomy and sentinel node dissection. I'm feeling remarkably well and have done since diagnosis. I've remained calm and accepting of the situation even though there are still many unknowns whilst watching all of my friends and family fall apart.
Is it normal to be so calm? I'm not in denial but I haven't wasted a single tear on the situation. I'm a glass half full kind of person and I'm just grateful that I've found the tumour as early as I have, especially as it never reared it's ugly head in the mammogram. It was only when I asked for a scan due to pain I was having that it was seen. As for BC tumours not being painful, I can assure you that they can be!
My only worry is that I have a five year old daughter who needs me for a long time yet and I will do anything to make sure that she has me. I'm scheduled for chemotherapy (pending pathology report) followed by radiotherapy starting when the wounds have healed. Any information or advice regarding treatment and well-being would be gratefully received.
I have no idea of what to expect...
I hope all of you are doing well :-)
Sandra0 -
Hello Sandra,
On behalf of all of us on the thread I would like to give you a warm welcome. This is a place where none of us wants to be but we are here to help and support you.
I read your post with great interest and I must say that you have written in a calm and sensible way. I was glad to know that you are feeling remarkably well and have done so since diagnosis. It is good that you have remained calm throughout this and I am sure this will help you. There is no point in getting into a panic. When we get this unwelcome diagnosis, although we may be frightened we just have to accept that we have to deal with it.
It is difficult for friends and family in this situation because the word cancer is still a word that strikes great fear in people. They will need to come to terms with it and be strong to help you through. You could all get together and have some counselling so that everyone can explain what is bothering them.
With a cancer diagnosis I do not think there is anything such as a normal state of mind. We all react differently. I was quite calm when diagnosed and after a lot of hesitation about orthodox treatment I just got on with everything. I was very fortunate to have a strong calm husband. I hope that others on the thread will post their experiences and state of mind.
You already have one part of your cancer journey behind you, since you have had a left breast lumpectomy and a sentinel node dissection. Let us know your pathology report and whether you have any nodes affected.
I am assuming, since you said you are Scottish, that you are living in Scotland. It will be interesting to compare treatment there to that in England. There might be differences.
I can understand your worry over your five year old daughter. Your very calm attitude to your breast cancer can only help your daughter. She needs to feel safe and reassured and not be frightened. Children are very intuitive. This is another reason why friends and family need to stay strong and calm and be there for your daughter. She does not need to see worried faces.
Let us know what course of treatment is decided for you. It is quite usual to have chemotherapy and then radiotherapy. Chemotherapy is the longest part as it can go on for six months with a regimen of every three weeks or one of weekly. It will be interesting to know what drugs you have.
There is a lot of information on this thread about chemotherapy and experiences of different people. What you need to know is that chemotherapy and radiotherapy can be done and you do not need to be afraid. We can be here for you.
Wishing you well and please keep with us.
Fond thoughts.
Sylvia xxxx
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Hello again Sandra
There is another lady on the thread, apandy (Anne) from London, who has had a lumpectomy and is waiting for an appointment for chemotherapy on Tuesday September 30th, so that is two of you facing chemotherapy. Susaninicking, an American in Germany, has recently finished chemotherapy.
I was wondering whether you have any other family members that have had breast cancer.
Because of your young age I was wondering whether you have been offered genetic testing.
Best wishes.
Sylvia xxxx
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Hi Sylvia
Thanks for your reply.I will let you know all the details of the pathology report when I get it next Wednesday. I have been told that although chemotherapy is not always required with Stage 1/2, due to my age and TN it is very likely and well probably start a fortnight after the pathology results. Just hoping for clear margins and clear lymph nodes at this point.
My paternal grandmother has had breast cancer twice but as she was a German native, those medical files remained with the British forces in Germany when she moved to Scotland upon my grandfather's death (She married a British soldier), so we have no idea what you're of cancer she had even though she still lives today.
I have actually had two benign tumours previously (both removed), one at seventeen and the other at twenty one so I've always been on the lookout for more. I started having pain ten months and was sent for a mammogram but nothing was evident. I recently became aware that the rib where the pain was originating started to feel different so I went back and had another mammogram which was also clear. (Tumour was at the base of the breast on the rib right under the natural crease where your underwire would sit) I knew deep down that things were not right and insisted on a scan. The surgeon indulged me but stated that he was certain there was nothing there. Well, the scan showed it with bells and whistles on! Core needle biopsy same day and results a week later. Can honestly say, the surgeon was more shocked than I was, lol!
Nobody has mentioned genetic testing for me but he has suggested we get our daughter tested when she reaches puberty. I might ask for it though. He has put my diagnosis down as being in my thirties as he is now quite certain that the pain I had last year was connected to the cancer. Breast cancer is not painful, so I've been told a million times. Rubbish!! In my case it certainly was... x0 -
Hi ladies
Just to let you know, my lovely breast care nurse referred me to you guys... :-)
Sandra xx0 -
Hi Sandra, Good for you for pressing on when you knew something was not quite right. Like Sylvia said I just finished chemo in August and am getting ready to start radiation. I had the sister of a friend who was a year ahead of me with BC and also a friend who I met here who was also a few months ahead of me treatment wise, and both were super helpful with questions. Feel free to message me if there is anything I can answer or help with. I thought chemo meant 6 months of being sick but it for sure does not mean this. It means some periods of not feeling great, but during half of my chemo I actually felt just fine, just a bit tired at times. I think you have come to the right place for help and support. I had exactly the same thought as Sylvia about genetic testing at your age. I sat with a girl every week in chemo who was 39 and the insurance here in Germany paid for the testing due to her age.
OK hang in there and come back when you need help! Susan in Germany
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Hello Sandra
Thank you for your post. We shall look forward to hearing about your pathology report and we are all hoping it will be a good one.
I can understand why your medical team think chemotherapy would be a good idea, bearing in mind the TN receptor status and your age.
I was interested to know that your paternal grandmother had breast cancer but that you do not know the details. My maternal grandmother had breast cancer with metastases from which she died, but that was in 1955 and I do not think many details were given at that time. I just remember she had a mastectomy and radiotherapy. I do not think they did chemotherapy at that time or spoke about hormonal and non-hormonal breast cancer. It was all very hidden and hushed up. She was seventy when she died and had not had breast cancer for long. How old was your grandmother when she was diagnosed? Age seems to be very important, at least in the UK, in the decision whether to put a person forward for genetic testing and also the number of close relatives affected, especially mothers, sisters and daughters. Apart from my grandmother I am the only female on my mother's side of the family to be diagnosed with breast cancer. I have three female cousins and four nieces from my brothers' children. However, I had various maternal uncles with prostate cancer and one of them died from it and I have recently been seeing news about an association with breast cancer with triple negative receptors and prostate cancer. I have even read about a possibility of using the same drugs with both kinds of cancer. We have to remember also that breast cancer can be passed on through the males and not necessarily the females. I did request and obtained an appointment with a geneticist nurse and she took down all the family details. She said that, given my age on diagnosis, it would not be genetic but just a rogue occurrence. I did leave a DNA blood sample to be stored for future reference if needed. That nurse told me that she would not be referring me to a genetic consultant within the NHS, but if I wanted to do it privately it would cost £3,000!!!
I was interested to know your history preceding your breast cancer. I also had a benign tumour removed in the left breast when I was much younger, but the breast cancer was in the right breast.
We hear different stories on the thread relating to pain preceding diagnosis. Some of us had pain and others did not. I did not have pain but my lump grew very quickly and in a short time, which is another frequently mentioned characteristic described by those later diagnosed with TNBC receptors. It is also frequently related on these threads that nothing was picked up on mammograms. That is why we have to be in tune with our bodies and if we feel there is something wrong we have to push the doctors to do something about it. Like you, my tumour was at the base of my breast where the line of your bra would be. Good for you to have pushed for a scan and to have been proved right. The specialists are not inside our bodies and tend to follow procedures and not look for exceptions.
I bet that consultant-surgeon was shocked to be proven wrong!
If I were you I would request genetic testing to see if you carry the BRCA1 or BRCA2 gene. It would give you some peace of mind and would spare your daughter being frightened by a blood test at puberty.
We have all read and been told that triple negative affects mainly young women, but on these threads we have discovered there are plenty of older women being diagnosed.
I am glad to know that you seem to be in control of your situation. During this breast cancer journey you have to be your own best advocate.
I was pleased to hear that it was your breast care nurse that referred you to this forum. Your breast care nurse will be a very important contact during your cancer journey. You must feel free to contact her with any problems.
Fond thoughts.
Sylvia xxxx
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Hello Sandra
Welcome to this wonderful forum, where you will find lots of helpful information and advice. We all care about each other and even though my posts are not as frequent as I would like I feel compelled to tell you this:
When I was first diagnosed with TNBC I like you, took it in my stride. My husband was angry with God for a while as he thought that it wasn't ''fair'' but as I explained to him, life isn't fair! There is nothing so special about me, that I shouldn't be the one in eight women who get BC, at least there are seven out there that didn't. I am a positive person too, although I am in hell at the minute but for an entirely different reason...long story.
Anyway, when I first went to the oncologist, he said that I hadn't accepted my diagnosis. I asked in reply that if I was a quivering heap of tears in front of him would HE feel that I had? He then concluded that I was indeed fully aware of my situation. My onco-plastic surgeon (another long story, but hey ho) told me that I think quite ''forensically'' and perhaps I do. I deal with the facts and the information and proceed accordingly. The ONLY time I had tears fall down my face, was when I had to phone my family to tell them...they don't know about my other surgeries, like titanium implants in my spine etc etc but because of the familial link, it was I felt, my duty. I have five sisters and five brothers. So I rang one brother who lives an hour away and had to do some serious apologising when I told him of the diagnosis as I was faced with comments such as ''that's going to be just a great thing to tell my daughter!''! Then one sister, whom I knew would tell everyone else ''How am I going to tell my daughters''...honestly, I felt and still feel horrendous guilt as I have always been there for anyone in my family, but all I kept saying was ''sorry, I didn't do this on purpose, I can't send it back''...that was the weak point in me...my 'family'. It has to be said that not one of them has picked up the phone to ask how I am and my support was from my husband and friends.
The chemotherapy sister took one look at me when I arrived and said ''I would never have thought you were going to be one of my patients'' when I asked why she said ''the way you just came skipping down that corridor as if to say 'hello I'm having chemotherapy'!''
Being positive got me through it. When I was asked if I wanted a wig (first day) I said casually that I wasn't going to lose my hair and if I happened to, then I would shave my head. I used the cold cap that thankfully worked for me. I lost pigment though, which even now means that I have to get my eyebrows and eyelashes tinted regularly, but that is one way of forcing me to the beautician! The pigment thing didn't show up until long after surgery. Oddly, even a little brown mole on my wrist went completely skin coloured and my hair grows out grey still, but that is such a small price to pay.
I take one day at a time and I got through it. I simply refused to listen to any negativity, but just took in all the advice the nurses could give to me.
Since then, I've been hit by a truck, in the form of my husband dropping a bombshell that he was leaving. Twenty years and he was gone. No goodbye, nothing. So I am still undergoing surgery as the first surgeon was not a good listener albeit eminent in his field. I developed a second tumour and my husband didn't wait for the results, so in a way I feel guilty about having cancer for that too. Doesn't take much mind you as I will always look at my own actions to see if I could have done things better etc before I would dream of going down the blame route.
My cancer hurt like hell. Forgive the expression, but it did. It developed within the space of a day, was bruised, it moved, in fact it did everything my GP said it ''shouldn't do'' and I quickly learned that for every woman the road is different. That is one of the lasting things that I have taken from this disease, there is no one-cures-all remedy and we are all individually treated. It is on this forum where I have found cohesion, togetherness. I have talked about my husband as I struggle with not having any family to speak of. They can't cope, so I totally get why people around you fall apart. I felt like a spectator at first, because I just didn't get the falling apart bit. I have met some wonderful people during treatment. Some who feel bad because they cry every day, but I think that's a wonderful thing to be able to release that stress and tension and that they find their own way of coping. I chose to laugh and at times a nurse would pop her head around and ask ''what's all the hilarity going on in here?'' ( I think that was nurse-speak for 'keep it down').
Sandra, being positive will help you to also help others, trust me it will. Stay positive and share your thoughts on this forum. Ask whatever you like and you will find someone who has an answer, or will know where you can get one.
WELCOME and I hope you find all the help and support which is here should you need it. Forgive me for any negativity that I have shown in my posts, as my marriage was my world...but I am so glad to be able to talk about something else. Even my woes have been generously tolerated here and I have found strength when I haven't been positive or strong, but cancer did not do that to me. Stress is my problem now and finding ways of dealing with it.
Ask about the cold cap option if you want to. Ask for a canula if you don't want 'a line' put in...keep asking and don't let anyone persuade you that you have no choice in your treatment, because yes you do! You will get through this Sandra, of that I have no doubt. Stay positive and please know that you have lifted my spirits today as I thought I was odd in that I didn't have tears either. Now I see my family with my rose tinted glasses off and it is a good lesson albeit not an ideal one. I can move on now without feeling responsible for the bad things that happen in their lives now. I have been set free of that and yes, it was hard, but now all I have to do is get over the husband thing and I will be back and smiling every day!
Thank you so much for cheering me up, when I need it the most right now. I hope that should you ever need it, I and everyone on here can do the same for you. Everyone is so kind and generous with their time and information. The support is just wonderful.
Thinking of you and as always, everyone on here who has helped me keep sane.
Sylvia, thank you for giving this forum to all of us.
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Hello all
Sorry for the mistake re last post which I accidentaly submitted twice :O
Anyway, having read the last posts can I just contribute what my oncologist told me regarding chemotherapy/radiotherapy?
- The chances of TNBC returning are highest in the first 1-2 years (I had fertility treatment before Chemotherapy and was advised to wait 2 years..but hey)
- If I get passed five years, then the chances of recurrence fall to the same as anyone who has had less aggressive BC.
- Radiotherapy increases the chance of survival by 75% compared to those who don't have it.
- Radiotherapy can cause a localised tumour (entirely separate from the original) which would be excised
- Having breast augmentation is more difficult on the radiated side as the skin can become hardened (and for me, boy did it ever)
I hope this helps with the questions I read today.
with sincere gratitude and best wishes to all
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Hello Sam_UK
Thank you for your post and for your PM. I do not know what happened with your post but if you read the thread you have only submitted one post.
Thank you for all your information about radiotherapy and chemotherapy. I am sure this will be of interest to everybody but especially those setting out on their breast cancer journey.
I hope all is well with you.
Fond thoughts.
Sylvia xxxx
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Hi all
Big leggy
I had a similar experience of being really calm on diagnosis and still have not shed a tear, I also found my lump through feeling pain...I am a little bit further along into treatment than you I am due my second chemo tomorrow,
I'm 45 and I'm being sent for genetic testing in November to see if I'm carrying the BRCA1 gene I'm surprised you havnt been offered this
Hi Sylvia
I was talking to my Neice yesterday to see how she was, shes already started chemo having four days running through a pic line, she's having I.G.E.V chemo....their going to see if she's responding to treatment in a month and if she's not their talking bone marrow transplant and have already told immediate family members to get ready to be tested
She was stage 3 on original diagnosis but are just saying now she's relapsed...we're praying it hasn't spread any further
I've been really busy this weekend photographing two weddings so got a lot of editing to do....I don't know how much I'll get done after tomorrow's chemo the first one really took it out of me for a few days but hopefully the second one won't be as bad,
Take care
Jackpot0 -
Hi Sandra,
I'm glad to be adopted here. I was calm as well, just like you, other than the day after the diagnosis, when my husband went to work, I fell apart, but it was a bit stressful as we waited through Christmas to get the results. However, once I met my Breast Surgeon the following day, I knew I would be okay.
Sandra, I believe you will do great, and like you said, you found this early. Did you know that the majority of TNBC women will not have a recurrence? If you PM me your email address, I'll send you out literature that references that, from the TNBC Foundation.
Hi Everyone - I want to know if anyone is taking Milk Thistle, and if so, what are the benefits of it?
Also, when posting statistics, please post the source of your information. The reason why, in reading a post just now on this thread, it was mentioned that you have a 75% better survival by doing radiotherapy, which can be taken out of context. Please try to post where your information is coming from, like a link, so that we can fully read who was compared, what where the circumstances, what was the stage, etc. There is just so much ambigouity from a statement like that, that it can really lead to fears in women who have not had it done - such as myself. And I know many women with a BMX who did not have radiation as it is not always a standard protocol - and the NCCN Guidelines does not reference radiation for some candidates meeting a certain strict guideline.
As always, I'm so appreciate for all the collective advice we share with each other.
Have a great day!
Editing to include this information - would like everyone to know about this valuable service:
-John Hopkins Breast Cancer Center has a free question-and-answer service, and they provide answers to a wide range of topics from symptoms of breast cancer, to breast cancer diagnosis, question about breast cancer risk, mastectomy, radiation and many other topics. Ask An Expert: John Hopkins Breast Cancer: http://www.hopkinsbreastcenter.org/services/ask_ex...
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I am sitting here reading posts and admiring y'all who remained calm at your diagnosis! Ahhhhmazing! I struggled to stay calm during the time with the doctor who reviewed the path report after the surgery with me, got to the car and FLIPPED OUT! 15 minutes of complete hysteria. My gynecologist who had earlier reviewed the path report from my biopsy (and who saw TNBC) told me my cancer was "medium aggressive" and would likely just require "a little radiation" so I could not nave been less prepared to hear the word chemo. Those of you remaining calm have my utter respect and admiration! Did you also stay calm about the issue of hair loss? You ladies rock!
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Hi ladies
I can tell already that you lot are going to be a life line. Thank you so much! I WILL be annoying you all as I move through my treatment and I WILL bug you with lots of questions.
Sylvia.. my grandmother was 42 when she had her first breast cancer. Right mastectomy followed by chemotherapy. She was 45 when she had her second one. Again on the right side. They removed her breastbone and followed up with chemotherapy. We don't have her medical records. She is a German native and married a British soldier in Germany during the war. They lived their entire life together in Germany. When my grandfather died 20 years ago, my gran moved to Scotland to be with us but her medical records never made it here. She's still going strong now. A healthy pain in the backside 86 year old (love her really). My paternal Uncle currently has prostate cancer and my father has been borderline for many years. His prostate problems are controlled with medication. I have no Aunts on the paternal side.
I have been told to get my daughter tested when she reaches puberty and I think I may ask for myself to be tested as I have a sister who is freaking out big time, poor soul..
I think all of you girls are amazing. I think I only stayed calm, even now, as I fear that if I fall apart I may not get it back together again. I have a little one to think of and I WILL get better!!!
Thank you all for your support... :-) :-) :-)
Sandra xxx0 -
Hi Everybody and especially Slyvia,
It has been wonderful to read the positive messages on the Forum, I have tried not to look into things too much as I think sometimes it doesn't help! I have also been very selective on what I tell my mum, I think thats the best way.
Thanks Sylvia for thinking of us although it has made me chuckle that you have given me a sex change as I am male lol.
Things seem very normal again at the moment which is nice, my mum has gone back to worrying about the silly things in life, which makes me smile as she not thinking about you know what. Her trip to see the oncologist was extremly positive and very funny too I am told as he was trying to explain things to her using a black board and some rather bad drawings!
She starts Radiotherpy on Monday, which is a step into the unknown but we are looking at this as a positive thing and it destorying any cancer that maybe left.
She went today for a flu jab, she admitted to me after that she did shed a few tears with the nurse who said she is welcome to come and chat anytime which is nice of her. I think being a healthy person and having this as a bolt out of the blue is the most upsetting thing, she assured her that thankfully a lot more is known about breast cancer than ever before and this is good news for everyone.
I will pop on again soon once we are into the next stage of this journey.
Thank you for everything,
Martin.
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Hello Jackpot
I just wanted to say that I shall be thinking of you today as you go for your second chemotherapy treatment. I am sure we are all thinking of you and hoping you will have a better experience in the days following than you did for the first one.
This morning I have volunteered to go to the hospital, where I had my treatment, with a friend who has no transport and is going through chemotherapy for the second time round as it has come back and spread. She is not TNBC but must be triple positive as she has been treated with Herceptin in the past. Today she is going to have IV Herceptin plus another drug for HER2+ combined with docetaxel. I feel so sorry for her. In a way, I think triple positive is probably worse than triple negative. I remember being told at the hospital that it was much better to be HER2-.
I do hope that everything is going to be alright with your niece. I was surprised that she is having chemotherapy four days running. What an ordeal for her. I do hope those drugs ifosfamide, gemcitabine, and vinorelbine will not be too harsh. I have read they are for relapsed Hodgkin's lymphoma. Let us hope she responds to the treatment.
This must be an anxious time for immediate family members and talk of bone marrow transplants. Let us hope it has not spread and she is still stage 3. Do you know what causes Hodgkin's lymphoma? On the thread we have Michael who had non-Hodgkin's lymphoma which recently came back and he has been having treatment. I am not sure what the difference is between the two.
I did have a friend some years ago who had non-Hodgkin's and the hospital gave up hope, but he then went into some kind of spontaneous remission and died several years later of something completely different. Spontaneous remission from cancer is another interesting subject.
I was glad to know that you are keeping busy as you go through your chemotherapy. It is good to keep your mind occupied. Remember to drink plenty of water after your chemotherapy, get plenty of rest and keep looking forward. Some women say that they find the chemotherapy makes them feel more and more tired as the treatment continues, so you will need to take good care of yourself and eat even if you do not feel like it. Small nutritious snacks seems to be the answer.
Thinking of you and wishing you all the very best for today.
Sylvia xxxx
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Hello Debra
Thank you for your post and nice to hear from you. You know how much I value your posts and that anyone from anywhere in the world can post on here.
I noticed you mentioned to Sandra about literature from the TNBC foundation. Why not post it on here for everybody's benefit?
I do not know much about milk thistle except that I have seen it in my local health food store and I understand it is something that cleanses the liver. I hope anyone with more information will post, especially anyone who is taking it.
It could be that, when Sam_UK posted about the 75% better survival rate by doing radiotherapy that she was told this and thus does not have a link. I do not take much notice of statistics, whether they be percentages or year survival rates. The body does not work in statistics and they can make you feel depressed or overly confident. I work on a daily basis and tell myself I am fine today and I count on my immune system to do its work, which is kicking cancer-butt!!! I did post recently about an article which stated that a short radiotherapy regime, three weeks rather than five, is just as effective and that research is looking into the efficacy of just one week treatment. again, Debra, we have to remember the UK may be quite different to the US. Here the system is always looking at saving money and getting the best treatment for the least cost. I had three weeks of radiotherapy with boosters and no other regimen was offered. I was told simply that the radiotherapy was being given to mop up any stray cancer cells that might be around. I have friends who had much smaller tumours who had lumpectomies and radiotherapy but no chemotherapy. They were all oestrogen positive, progesterone positive and HER2-.
Keep posting, especially with nutritional information which is something in which we are all interested.
Thank you for all the time and effort you put into threads on this forum.
Love.
Sylvia xxxx
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Hello susaninicking, Sandra and Martin
Thank you all for your posts and I shall respond later when I get back from the hospital.
Martin, I had to laugh about the sex change and it is good to have another man on the thread. We now have Michael, Peter and you and it is wonderful to have you here.
Best wishes.
Sylvia
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Hello susaninicking
Thank you for your post. You always write with a good sense of humour and I enjoy reading what you have to say.
I am sure that hair loss must be a very big issue with a lot of women. I know it concerned me but the shock really comes when it begins to fall out. My hair was medium length and I did not do anything beforehand. I did not have it cut short and I am definitely not the type to have had it all shaved off. It began to fall out not long after the first dose of chemotherapy and I was wearing my wig at my second appointment, even though I still had some hair. I let it take its own course in falling out. I was never completely bald but always had a bit of stubble. As soon as I started wearing my wig I was fine but the thought of hair loss was a big issue for me. I am not one to scream and rant about breast cancer, as I know there are things happening to people that are far worse.
The other big issue for me was the thought of being in hospital for surgery, as I seemed able to cope with treatment just as long as I knew I was coming back home. The five days spent in hospital seemed never ending for me.
What are you doing as you wait for radiotherapy?
Thinking of you.
Sylvia xxxx
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Hello Sandra
Thank you for your post. Feel free to ask as many questions as you like as you go through treatment.
I was interested to know about your grandmother's history. At 42 she would be considered quite young when she had her first breast cancer. It is a pity that we do not know what chemotherapy drugs she had, but it could well be that she had some of those that have been in use for quite some time. I do remember my oncologist making some reference to first generation drugs and second generation ones. I am not sure but I think drugs such as cyclophosphomide and epirubicin and doxorubicin have been around quite a while, longer I think than the taxanes such as docetaxel (Taxotere) and paclitaxel (Taxol). She was still quite young at 45 when she had her second one. It seems to me quite possible that she had breast cancer with triple negative receptors. It is a pity that you do not know what kind of breast cancer she had. The most common one is invasive ductal carcinoma (IDC). It seems to me that our medical records should follow us wherever we go. Your grandmother at 86 just proves how long you can survive after treatment, as that was over forty years ago since the second one. That has to be a record for survival! It looks as though she had the treatment and put it behind her and got on with her life. I think that is what you have to do. You have to try not to let breast cancer possess you and become too obsessive about it all. Keep everything simple is my motto. Eat good simple food, keep active but do not overdo it and try to be happy and content with your life. I think it is prudent not to swallow too many pills. They are no replacement for good wholesome food.
I hope your uncle is doing fine with his prostate cancer treatment and that your father's will remain controlled with medication.
I do hope you manage to get genetic testing, because at least you will know where you stand. It may help your sister as well. It is not long to go now for your path report on October 2nd and that will help a lot.
Fond thoughts.
Sylvia xxxx
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Hello Martin
I was so glad to know that the positive messages on the thread are helping you as you help your mum. I think you are right not to go too deeply into things, as I agree that it does not always help. You can have too much information and this can make you feel a bit confused and muddled. I am a great believer in dealing with one thing at a time. Breast cancer is something that you deal with in stages and it is best to take one stage at a time. You do not want to frighten your mum or tell her anything that is going to dampen her spirits.
It is good that everything seems normal for you and your mum, as that will be less stressful for both of you. It is good if she can keep thoughts of breast cancer at bay.
Whatever was the oncologist trying to explain to your mum by the use of a blackboard and some rather bad drawing? I think this is probably the first time that I have heard of an appointment with an oncologist being funny! They say laughter is the best medicine, so it is good that you could all laugh.
I was wondering whether your mum had her pre-radiotherapy appointment with the oncologist who was doing drawings. When I had mine I was shown a prototype of the actual radiotherapy machine and had to lie on it and have the part of my body, to be radiated, mapped out. I was also given a smock to take to each appointment and put on during treatment. I was also told not to use any talcum powder and not to use Dove soap during treatment because of the metal in it. I was told to use aqueous cream to wash in to keep my skin moist. The radiotherapy goes pretty quickly because you do not have many minutes of the radiotherapy beam on you. You lie on the machine, are put in position and then the radiologist leaves the room and switches on the machine from outside. Before you know where you are the treatment is over and you are going home. The most tiring is having to go every day five days a week. I did it for three weeks and had boosters at the same time as the treatment. some women say they feel tired, but I just carried on as normal. I met some nice people during those three weeks and we used to chat while waiting for the treatment. I met some men who were having prostate treatment.
I can understand how your mum must feel having this diagnosis at age 76 after being such a healthy person. She needs to know that she will be well looked after and should be fine. They say cancer is much less aggressive in older people. Back in June 2005 when I was diagnosed, my elderly neighbour was diagnosed with cancer in both breasts and she was in her eighties. She had both breasts removed and then had radiotherapy. Because she had hormonal positive receptors she then took tamoxifen. She remained cancer free and died in 2011 of old age. Your mum can do this breast cancer journey.
Pop in as often as you like and post about anything you like. A diagnosis of cancer is very difficult for family members and friends of the person diagnosed and you need to take care of yourself. I encouraged my husband to join the group of carers at Hospiscare and it was very good for him to get out and mix with others who were taking care of family members with cancer and other illnesses such as motor neuron disease.
There is a lot of help out there for those diagnosed and their carers.
Take care and keep everything calm for you and your mum.
Best wishes.
Sylvia
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Hi Sylvia,
I am training for a 5K breast cancer run-walk next weekend. I will be walking mostly of course, just past chemo and all....I walked all through chemo weather permitting but now I realize not enough and not far enough! Before BC I was swimming a couple times a week, once a week Zumba and then I was also a bit of a gym rat. All came to a screeching halt and I became a slug. This is now ending and back to fitness and I must say that at the moment it is doing me in!
Today I did a few hours of gardening, tomorrow Ikea, always fun, and my brother was just here from Indiana. Oktoberfest is now so there is no real shortage of fun to be had here at the moment.
This is probably mentally ill but I actually miss the hospital and the chemo people! I have a CT scan on Tuesday to get marked for rads which starts October 10th, but the happiest of all news lately is that I can do my radiation at the hospital which has become home sweet home. The rads department was doing maintenance on the machines and if all had gone to plan and I had started rads right after chemo I would have had to go to downtown Munich....fun for shopping but daily for rads, blech! Because of the delay with mammos, MRI's and biopsy, I can now go to the hospital. Much closer, no problems with parking....there is actually close parking for radiation so you can park, run in, get zapped and run back out.
So that's what I'm doing, thanks for asking.
Anyone have any advice about port removal? I was out cold when it was installed but I'm wondering if I can take it like I'm brave (hahaha) and just have local anesthesia for removal. Is the removal any easier/faster than when they go in? After all this time I'm still kind of creeped out by the lump so saying auf wiedersehen to Little Lord Portleroy will be one happy day!
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Hi Everyone!
I just had my ultrasound done today and all was normal. I had one done 4 weeks ago and it was normal. But I came across something and went it to have it looked at, and it was normal. The Radiologist said I did the right thing by getting it checked out. It was scar tissue, and he showed me the image, and showed me what we were looking at, the implant, etc. My appt was at 10 this morning, so I got up at 6AM and did my 90 minute workout first, then had some steel cut oatmeal and then showered and then went to appointment.
Oh Sylvia, I would absolutely love to post the literature, it is in a PDF though, and so there is not a direct link to it, like to an article on the internet and there is no way to attach a PDF in the forum. In fact, I don't think I can even attach one in a PM, which is why I have to send through outside e-mail. I've looked at the TNBC foundation for a link to it previously, but I didn't see it available on there anymore. I will have to contact them and find out why they don't have it on their site anymore. From what I remember it looks like they went with a smaller mini-version.
Well I'm off to make my smoothie.
Oh - here is new creation I made yesterday for lunch.
Ezekel wraps - given a grade of A on Fooducate. Steam cabbage, chopped green opinion, chopped raw carrots, and chopped celery into pot, with just a dash of low-sodium soy sauce. Once steamed, place on the wrap and roll it up. Stick in heated oven turned off (heat oven then turn it off) and let it hang out in there while you wash the pan you steamed it in. So healthy and tastes sort of like an eggroll, but no grease and no fat. The Ezekel brand of bread is one of the best ... they are made from sprouted grains, which are given healthier marks than whole wheat ... this is because sprouted means younger and more nutrient dense. But you can use whole wheat tortilla or wrap if you prefer.
Cabbage is powerful nutrient against c!
Have a great day everyone - you all are amazing. And I agree with SusaninIcking - all the newly diagnosed sure are taking the world by storm, and handling things so well, true role models!
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Hi Sylvia and all
Well second chemo done and dusted...2 down 4 to go....nausea not as bad as last one so far, I got some anti sickness wristbands as recommend on here and so far so good they seem to be doing the trick....huge relief and inexpensive would definitely recommend to all currently going through chemo....
How did your hospital visit with your friend go?
The difference between Hodgkin's lymphoma and non Hodgkin's lymphoma from what we know is one cell called the reed sternberg cell and is a lot rarer compared to non Hodgkin's and the treatment apparently is different....their also going to remove and freeze her stem cells to return them at a later date...the four day running chemo has really taken it out of her and she's sleeping a lot....her little boy is coping well and is seeing staying with his cousins as a bit of a holiday....but we realised he knew more than we thought when he asked what cancer was...kids listen more than you realise!
Take care
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Hello Susan, Debra and Jackpot,
Thank you all for your interesting posts. I shall be posting later on today.
A big thank you to all of you who have posted or viewed this last week.
We now have several people going through or about to start chemotherapy and some waiting to start radiotherapy. If any of you have information, tips or words of wisdom on how to get through these treatments with minimum side effects or discomfort, please post.
Wishing everyone a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Susan
I do hope all goes well on your 5K breast cancer run-walk. I think you are to be congratulated for taking part so soon after chemotherapy. Take it easy with the exercise as you recover from chemotherapy. Remember, you still have radiotherapy to do.
Enjoy yourself as much as possible.
By the way I do like your new avatar.
I can understand that you miss going to the hospital. It is a big adjustment after being so busy with chemotherapy and being around other patients. It will feel the same after you have finished radiotherapy and you have to adjust to getting on with your life and having three-monthly and then six-monthly check ups. It is very important to move on from cancer and to put it into a small corner of your life.
Do you know how many weeks radiotherapy you will be having? It is good that you are going to a hospital near you as it can get quite tiring going in for treatment every day five days a week, even though the treatment itself is very quick.
I think what to do about the port has to be your personal decision. If it is the same port as I had, which was installed during my mastectomy, in case I needed more chemotherapy, it was completely inside me and had to be done under general anaesthetic and it was taken out under general anaesthetic when it kinked. It was never used because of this and I did not need any more chemotherapy anyway. It is something about which you need to ask your medical team.
Have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Debra
I was glad to know that everything was normal with your ultrasound.
Thank you for the explanation about the PDF. Please do not worry about it.
Thank you for all your information about what you are eating. It is useful for all of us and gives us new ideas. Your wrap sounds very healthy and you are dead right about how powerful cabbage is against cancer or indeed any member of the cabbage family. Broccoli, Brussels sprouts, cauliflower, all sorts of cabbage and greens are a regular part of my shopping.
Enjoy your weekend. Are you doing anything spectacular? I did enjoy reading your post about how to tackle tidying and cleaning a house. I am a very clean and tidy person and minimalist so I find cleaning very easy. I get the impression that in the UK there are many hoarders who cannot get rid of things. There are lots of programmes on the television here about this. Some people cannot even get into their rooms!
Thinking of you.
Sylvia xxxx
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