Calling all triple negative breast cancer patients in the UK
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Good morning Sylvia,
Today looks like another glorious day.Oskar, Kerry and the baby spent all afternoon in the garden. Before that Damian took Oskar to the woods where he climbed and ran around.
Kerry and I took baby Max to a local clinic to be weighed. He had lost weight and has not put any back. This is a concern for Downs babies as it can indicate a heart problem. All kinds of prayers and thoughts are with him from so many people that we can only hope that it isn't the case.
Leigh is home too and has been an amazing help with Oskar. Oskar has accepted that Leigh is now to be called she although his mummy doesn't approve and is angry about it.
I get the e mails from Chris too but haven't managed to go through bit yet as my mind is not too receptive at the moment.
I really support the Mediterranean diet if nothing else it is appetising because of the colours and they say you eat with your eyes.
I popped over to the centre for half an hour and met my friend who did have the test to see if she needed chemo. She sadly has been told that the cancer is in her hip and leg. They were very slow to scan her when she did complain of pain originally. She is a woman who is the epitome of grace and goodness and not in an overpowering way.
Damian is in hospital today for his check up. He used to be able to get it done locally but the centre closed as it wasn't profitable. We will go to Limerick but I am not sure how long it will take. That means that Kerry, Leigh etc will be home for the day as we live in the country.
Our garden is looking really well but all our cosmos seedlings have died. Damian thinks he planted them too soon even though they were in a tunnel. I think that he will wait and plant them straight into the ground.
Well Oskar is snuggled beside me and it is time for breakfast, although we must keep the smells away from grandad as he is fasting.
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Hello everyone,
I thought you might like to see some more of our plants in the grounds of the apartment complex where I live.
Enjoy!
Sylvia
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Hi Everyone
I just posted on another thread then came across this one . Hope it's ok for me to join yours
. I live in the UK am 48 and dx with TN October 2014. I have had 8 cycles of FEC D. Am now waiting for surgery ... beginning of May. This will be Masectomy rt with immediate implant reconstruction.
I will be then having radiotherapy. The surgeon did say this may alter the shape of implant but seemed happy to do it. He said it could be replaced after if needs be.
I'm interested to talk to others with TN and see what treatment they have had.
The photos of the garden above are beautiful btw.
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Dear all,
The weather is so good, I sometimes forget about what happened in the last 12 months!
Today I received the news that I had been waiting for....I was accepted on the trial for Oluparib. I have had a few appointments over the last few weeks, blood tests, ECG, examinations etc, the drug company want people who are not going to have any babies during the the year and are relatively fit and healthy. At some point I will need scans, the trial leader said that will happen about three months in. I pick up the drugs next Wednesday, but obviously won't know if it's the drug or the placebo, i don't think the side effects are that bad from information from when people were taking it for other cancers so that won't be an indicator for me. The trial is still recruiting, so I am thinking about any new people to the thread who may also be BRAC1 or 2 as this is a prerequisite for being accepted. I notice that you are new Amanda, do you think you may have the faulty gene? It has to be taken 8 weeks post radiotherapy, so no good for a lot of people on here.
The trail organisers are very optimistic about this new drug for TN BRAC mutation, it has worked well for lung and ovarian cancers.
I will keep you updated,
Mary x
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Dear Amanda,
I was diagnosed May 18th. I had a double mast in December and then radio which was completed at the end of feb. My breast surgeon and onco advocated not to have any sort of recon but to wait at least one year as the first year is the trickiest time for recurrence....I would be worried if it did return and I wouldn't be able to feel it behind the implant and I would worry that the chest wall wouldn't get the full benefit of the radiotherapy ( and that the radio would definitely change the shape of the implant). I know that is probably what you don't want to hear, but its an honest opinion and one that I have asked and heard other surgeons and oncos advise. I chose to have the two removed as I kind of guessed I was BRAC1 or 2 and also having large breasts, one heavy prosthesis would be cumbersome. I am quite enjoying my athletic look!
Hope that helps.
Love,
Mary
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hi Mary
I did ask the surgeon re radiotherapy being as effective with implant and he said it would make no difference . Just not sure what to do at the mo.
I have had gene test just waiting for the result. It was not covered on nhs as I have no family history of cancer also I'm 48, you need to be under 40. I have a daughter who is 25 so felt I needed to know . X
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Hello Amanda,
First of all I would like to welcome you to our thread. It is not a place any of us want to be, but you will find great support here from a very informed and very likeable group of people. We are mainly women here, but we have two men as well. They are Tom and Michael and I do hope they will pop in to tell you how they have found themselves here. They are both very informed and am sure they will give you a lot of support.
Like you, I had my chemotherapy before surgery and it was EC for three months and then docetaxel (Taxotere) for three months. Like you I had a right side mastectomy and had it about three weeks after finishing chemotherapy. I did not have any reconstruction and would not have wanted it.
I finished treatment with three weeks of radiotherapy plus boosters and was then told there was no visible evidence of disease. Like Marymargaret has said, if I were in your position, I would wait certainly until after the radiotherapy before having reconstruction. I would want my body to heal and to recover before any reconstruction. I remember my breast cancer surgeon telling me that a mastectomy operation was not considered major surgery and that it took about 45 minutes. However, I read that reconstruction makes the surgery much longer. Think about it carefully. It is only my opinion but I would not want to be having unnecessary surgery to replace implants. Surgery is not something to be taken lightly because of the side effects of anaesthetics and the possibility of things going wrong.
Thank you for the kind words about my pictures.
It would be useful if you could post your details under your profile so that we know your stage, grade, kind of cancer, node involvement etc.
I hope you get good news from the genetic testing.
Please keep with us.
Fond thoughts.
Sylvia xxxx
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Hello Marymargarethope,
It was good to hear from you. I shall post in more detail later today when I have more time.
Best wishes.
Sylvia xxxx
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Morning Amanda,
I really don't blame you. I was 39 at diagnosis and had two maternal aunties who had it too .... my siblings are in the process of getting tested but my children are too young yet. Let's hope you don't have it.
Can you ask for a second opinion about the recon to put your mind at rest? I did do a lot of research and I found that it was very rare that triple negs would have recon straight away. I know it's all so confusing, but I am seriously glad that I have waited.
Keep up posted.
Mary x
Sylvia!!
I will be in Exmouth this time in two weeks, my oldest is having a karate training weekend at the Haven holiday park there. Hope the weather is like this!
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Hello Lindsay
Thank you for your post. You always have something interesting to say.
This has been a busy, stressful week and I am glad Friday is here. I shall answer your post later on today when I can sit and concentrate.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Hi Mary/ Sylvia
Thanks for your reply. I've been thinking really hard about the immediate reconstruction. Also spoke in depth with my family and thinking now that I may leave it until after the radiotherapy. He said it would be 12 to 18 months if I do it that way.
Stuck in bed at the moment with a tummy bug
. But lucky it's this week and not week of surgery.Hope you all enjoying the sunshine xx
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Hello Hanieh
Thank you so much for your kind words. It makes me happy to know that you find all the information helpful.
I agree with your very wise words. How did you get so wise so young? We are the only ones that can take proper care of our bodies.
I found an interesting article in one of the newspapers yesterday it was entitled "I was 9 weeks pregnant when told I had breast cancer". I shall write more later about this.
http://www.express.co.uk/life-style/life/572326/La...
Wishing you a good weekend.
Sylvia xxxx
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Sylvia, the article you have posted makes me thankful that I found my lump at 7 months and was able to have the baby delivered then, I can't imagine the worry to go through a whole pregnancy not being able to have chemo.
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Hi Sylvia and everyone
This disease helped me achieve the wisdom I needed to lead a better life. In the middle of all my scares and fears and uncertainties, now I think I'm able to find more happiness in everything. I'm able to love more and forgive anyone annoying easier than before.
Sylvia what nice pictures of your garden. I really enjoyed them. Please post more pictures.
Though far away my heart goes with all my friends here and I wish we celebrate many years cancerfree all together.
Best wishes
Hanieh
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Hello Lindsay,
I do hope that Max will start to improve. I do hope he does not have heart problems. It must be a great worry to you all.
I was glad to know that Leigh is home and that he is so helpful with Oskar. Is Leigh still called Leigh or has he changed his name to indicate his change of gender? I do hope you do not mind me asking this. I am not sure whether Leigh is one of the names that can be used for both.
I was glad to know that you signed up for Chris Woollams e-mails. I find them all very interesting. It is quite a lot of work going through all the underlined titles in them but it is well worth the trouble. If he comes this way I shall certainly try to go to hear him speak. He is ten years in advance I think of everything to do with cancer and chronic disease in general. In his latest e-mail he mentions a woman who spoke at his last meeting who beat breast cancer with no conventional therapies but diet, exercise, IVC and Black Salv and a determined mental attitude. What do you think of this?
I am looking forward to his launching of Health Academy Live which I think should be up and running in a couple of weeks.
Cancer Active also has a couple of runners in the London Marathon.
There is also a "Special" for Manchester United supporters around the world. They are auctioning something on eBay.
The titles underlined in this e-mail and so to be clicked on at Cancer Active are
Do Your Gut Bacteria Control Your DNA?,
Dementia/Alzheimer's and Weight,
Signed Shirt on eBay,
Rainbow Diet has Marked Effect on Telomeres,
Rainbow Diet.
This was an extra e-mail. There was a lot of information in the preceding one, especially about stem cells, vitamin D and environmental toxins. Apparently, it is official now that Roundup weed killer is connected to cancer, especially lymphoma. This weedkiller is now officially classed as carcinogenic.
Like you, I firmly believe in the Rainbow diet, which is the Mediterranean diet and it is so easy to follow. Chris was talking about it all long before it hit the news. I am not surprised he has such a great following.
I do hope all will go well with Damian and his check up.
I think it is so sad that everything local is being closed. The same things are happening in Devon and it is not making it easy for patients. The powers that be are destroying our neighbourhoods. I find Exmouth councillors live in cloud cuckoo land. They know how to waste money but will not provide basic services.
I was glad to know that your garden is doing well.
Have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Lindsay,
I do hope that Max will start to improve. I do hope he does not have heart problems. It must be a great worry to you all.
I was glad to know that Leigh is home and that he is so helpful with Oskar. Is Leigh still called Leigh or has he changed his name to indicate his change of gender? I do hope you do not mind me asking this. I am not sure whether Leigh is one of the names that can be used for both.
I was glad to know that you signed up for Chris Woollams e-mails. I find them all very interesting. It is quite a lot of work going through all the underlined titles in them but it is well worth the trouble. If he comes this way I shall certainly try to go to hear him speak. He is ten years in advance I think of everything to do with cancer and chronic disease in general. In his latest e-mail he mentions a woman who spoke at his last meeting who beat breast cancer with no conventional therapies but diet, exercise, IVC and Black Salv and a determined mental attitude. What do you think of this?
I am looking forward to his launching of Health Academy Live which I think should be up and running in a couple of weeks.
Cancer Active also has a couple of runners in the London Marathon.
There is also a "Special" for Manchester United supporters around the world. They are auctioning something on eBay.
The titles underlined in this e-mail and so to be clicked on at Cancer Active are
Do Your Gut Bacteria Control Your DNA?,
Dementia/Alzheimer's and Weight,
Signed Shirt on eBay,
Rainbow Diet has Marked Effect on Telomeres,
Rainbow Diet.
This was an extra e-mail. There was a lot of information in the preceding one, especially about stem cells, vitamin D and environmental toxins. Apparently, it is official now that Roundup weed killer is connected to cancer, especially lymphoma. This weedkiller is now officially classed as carcinogenic.
Like you, I firmly believe in the Rainbow diet, which is the Mediterranean diet and it is so easy to follow. Chris was talking about it all long before it hit the news. I am not surprised he has such a great following.
I do hope all will go well with Damian and his check up.
I think it is so sad that everything local is being closed. The same things are happening in Devon and it is not making it easy for patients. The powers that be are destroying our neighbourhoods. I find Exmouth councillors live in cloud cuckoo land. They know how to waste money but will not provide basic services.
I was glad to know that your garden is doing well.
Have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Amanda,
I do hope you are feeling better and that your tummy bug has gone. You need to be feeling strong and well for your surgery. Please let us know the actual date so that we can support you.
Let us know when you get the results of your genetic testing. I do hope all goes well for your surgery and that you make a swift recovery.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post. It is good that a disease that is so traumatic has helped you to achieve the wisdom that you need to lead a better life. I think we can all understand the fears, scares and uncertainties that go with a cancer diagnosis. It is good that you can now find more happiness in everything. I think we all need to live on a daily basis, living that day to the full and as best we can and not taking tomorrow for granted. I think we can all learn a lesson about forgiving and forgetting. There are so many petty quarrels and feuds that go on in families and among friends. Life is too short for all that.
The world is in such a mess and I do wonder whether there will ever be world peace. In this country we seem always to be celebrating the past, especially wars and battles, but we do not seem to learn from these. Last year the country was celebrating the start of World War 1, this year it was seventy years since the end of World War 2 and yesterday and today it was Gallipoli. All those people killed in all of this for no real purpose. Next year it is going to be the celebration of the battle of Waterloo in which the English Duke of Wellington defeated Napoleon. There is no end to it.
I shall certainly post some more pictures. It is my husband Raymond who is taking them. We all need something to cheer us up.
Sending fond thoughts your way.
Sylvia xxxx
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Hello Michael and Hello Tom,
We have not heard from you two great men in a while and are wondering how you are. Please pop in to let us know all is well.
Fond thoughts, Sylvia.
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Hello suewirral, jackpot (Gill),adagio, inspiredbydolce,(Debra) carolben,
Missing you all and wondering how you are.
Fond thoughts,
Sylvia xxx.
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Hi Sheila/ everyone
Thanks for asking Sheila I'm over my tummy bug now.
My surgery is going to be 5th May ( very scared). I've only been in hospital once and that was to have my daughter. I've decided to go for just the Masectomy and then in 12 months time I can go for the reconstruction if I want. I would have liked it straight away but it does make sense to wait.
Hope everyone is doing ok. I feel so lucky to have found this site the support is brilliant.
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Hello Amanda,
I was glad to know that you have got over your tummy bug. Rest and relax as much as you can as you wait for your surgery. We shall all be thinking of you on May 5th as you have your surgery. I can understand that you feel frightened, but you will be fine.
Like you I had not been in hospital, except once, when I lived and worked in France in my younger days. I had never been ill and had never been in hospital in England. I was dreading being away from home and I told my breast cancer surgeon how I felt. She arranged for me to be in a room on my own just off the ward. I had the surgery in the morning and was in recovery for sometime while they found a bed. I stayed in hospital for five days until the drains were clear and then I was allowed home.
I think today patients are kept in for a much shorter time and are allowed home with the drains in and have a district nurse come in to deal with them. I think sometimes patients are allowed home the same day. ..Have you been told anything about any of this?
How is your family coping with all this?
Fond thoughts,
Sylvia xxx.
Not Sheila.
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Hello Amanda again,
I just wanted to say that I think you have made the right decision about your reconstruction. It is good to take one thing at a time. Like this your body has time to recover. You should be given some softies to put in your bra while you recover and your surgery heals. You should also have been given a breast cancer nurse whom you can contact if you have problems through all of your treatment.
Take care.
Sylvia xxx.
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Oops sorry Sylvia for calling you Sheila I don't know where that came from.
I've been given some leaflets on what to expect re surgery. The surgeon when I went to the appointment did explain the procedure along with showing me photos of what to expect( including implants that had gone wrong / infected etc). I don't know if this is the standard thing to do but it didn't help me or my mum or daughter who were with me. I'm just putting that at the back of my mind now. I think I will be better once the surgery is done.
I do have a breast care nurse she is really nice but they are so busy don't have a lot of time to spend with you.
Xxxx Amanda
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Hi Amanda,
I am so glad that you have decided to wait for the reconstruction. I came home the next morning after a double and had drains. I felt like i would never be able to lift up my arms again but that does not last long. You will have pain, so keep the pain killers topped up, don't be brave !!
I will be thinking of you next week.
Mary x
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Hi Sylvia,
I have done reading to do to catch up on the thread. I have had two friends over from England and so I have been busy entertaining ☺At least they have missed the bad weather there was some hail this morning.
Michael
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Hello Amanda,
Please do not worry about the surgery. I was surprised that your breast cancer consultant showed you pictures. I would not have wanted to see anything like that. I do remember my breast cancer consultant asking me if I would like someone to visit to show me their own mastectomy and I said absolutely not. You will find that the after-surgery look is very neat. There is just a line of stitching and a neat scar is the end result. I do think it is wise to wait for surgery for implants. On this forum I have read posts from women who have had problems with their implants. A rash appearing on the scar is a sign of recurrence. That is what my oncologist told me, so I keep a keep eye on that scar.
There has been a lot of drama on television about mastectomies and looking at your body after surgery. I looked at mine straight away and I was fine.
Let us know how long they keep you in hospital and whether you go home with the drains. I was fine to remain in hospital until the drains ran clear. The nurse looking after me, on the day the drains were removed, told me to breathe in deeply as she removed them and I felt nothing.
I did not have any after surgery pain and I think my female breast cancer surgeon did a really neat job. I took no painkillers and started to think I would be put in a black book for refusing them! I had no pain.
Tell yourself you are going to be fine and all will be well.
Thinking of you.
Sylvia xxxx
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Hello Michael,
It was nice to see you back on the thread. I was glad to know you have been having a nice time with friends and tht the weather was kind while they were there.
Here in Exmouth we are supposed to be having days of rain but so far it has not amounted to much. I cannot believe how dry April has been.
Keep in touch with us all.
Best wishes.
Sylvia.
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Hi Amanda,
Just to reassure you, I wasn't saying that you will have pain to scare you, every person's surgery is different, it's just that if it does hurt after, it's very normal. The standard now is that you go home very quickly and the community nurse visits to check the drains, they are a vacuum and she will remover the drains when they either run clear or reach 7 days post surgery. The removal does not hurt at all.
Mary x
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Thank you so much for your support Sylvia and Mary it is very much appreciated
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