Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia,
I dont think that my friends believe that but in a country that is predominantly catholic I suppose they do not think about other religions in general.Yes, I was a little disappointed that I didnt sense a feeling of spirituality in Knock.
I am wondering has anyone else experienced a feeling that your ribs are cramping or dislocating when you turn. This has been happening to me more frequently over the past few weeks and is very painful. It can happen when I turn over in bed or turn to pick something up.
I didnt mention it at my check up because quite honestly I forgot and had already asked so many questions without satisfactory answers.
Just wondering has anyone else experienced anything similar
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Hello Michael,
Thank you for your posts. When you do have a chance to read all the Chris Woollams information I would value your opinion.
I was sorry to know that you are suffering from very stiff upper legs. If that were me I think I would get it checked out for peace of mind. Steroids do seem to have nasty side effects. Are you taking statins by any chance? I know from many people that they cause all kinds of aches and pains in the legs.
I hope you will have a good week. It is pretty cold here in Exmouth.
Thinking of you.
Sylvia.
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Hello Jackpot,
I was glad to know that the nausea seems to have subsided. Let us hope it stays that way. I was sorry to know that you now have other problems. As you know, I did not have any side effects to speak of but do think you should get anything checked out. It must be awful to have a constant headache that nothing will shift and lower leg muscle aches. I do hope these will go away as you get past the first week of treatment.
it does not sound as though the people at the chemotherapy ward were of much use. They are the breast cancer experts and the ones delivering the drugs, so they should be the ones to help. I cannot see what your GP can do other than tell you to take pain killers. I keep reading about how lax everything is with cancer patients. What about going to your cancer centre for help?
Make sure you are getting enough to eat as you can get really bad headaches if you have low blood sugar, and keep drinking plenty of water to keep your blood pressure from going low.
Thinking of you and hoping things will get better.
Sylvia xxxx
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Hello sam52,
Thank you for your post. It is always good to hear from you. Thank you for your information about TN. I am sure it will be of great comfort to many people. I do not think of myself as cured, as I am still going to see the oncologist and she has never mentioned cured.
I was interested to know what your BC oncologist friend at the Karolinska Institute said about grade 1.
I do hope everything will be a bit easier for you this term.
There is a definite feel of end of summer now. I have been busy this morning checking the monthly accounts for our apartment complex and yesterday I was busy preparing a newsletter for the residents. It is never-ending work. I have been busy reading through all the links on Chris Woollams' e-mail. So much of what he says makes sense. I have also been reading through the September issue of What Doctors Don't Tell You. It is such an interesting magazine.
It was my birthday on September 1st and I have been trying to read the books and magazines that my brother bought me. I love history and he had bought me the September edition of History magazine and I was reading about how everything went wrong for Robespierre after the French Revolution. For relaxation he gave me the novel The White Princess as I told him I had been following the White Queen on the television. Did you watch it? I am also trying to keep my French going.
Keep in touch.
Love.
Sylvia xxxx
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Hello linali (Lindsay)
It was nice to hear from you. Religion and politics are dangerous subjects so perhaps best avoided.
I have not experienced anything like the pain and cramping you are experiencing but I hope someone will post in if they have. On my right side where I had the mastectomy it does feel very strange to the touch because all you can feel are your ribs. If you are concerned it is prudent to get it checked out. I know it is difficult to get full attention and treatment. I have been reading lately about how cancer survivors are not being looked after either physically or psychologically when their treatment comes to an end and how this needs to be rectified because there are so many survivors suffering from psychological and physical problems that are being ignored.
Keep in touch, Lindsay, and take care.
Fond thoughts.
Sylvia xxxx
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Hello papiDen38US
Thank you for your PM with the suggestion as follows:
You might consider joining our support group:
https://www.facebook.com/groups/59853196480/
I do not belong to facebook at present and I would need more information. What would I gain by it? Is it a closed group and what exactly do you do? How many closed groups for TNBC are there?
What information can you give me about yourself, especially in relation to TNBC?
To everybody on the thread, if you know anything about this group or indeed belong to it or any other group on facebook about TNBC, I would be grateful if you would let me know.
Best wishes.
Sylvia.
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Hello everyone,
I am just popping in to wish you all a good week and to let those going through treatment know that we are thinking of them.
Special hellos to peterandliz, EmmaL, adagio (on holiday), Carolben, susaninicking, InspiredbyDolce (Debra) and PeggySull.
Best wishes to all of you.
Sylvia.
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hello Sylvia
Just a short note to wish you a very belated HAPPY BIRTHDAY! Sorry I missed it and I hope you had an enjoyable day.
With love,
Sam x
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Hello Sylvia,
Liz has joined the Facebook group you mention today. There are many TN groups on Facebook.
Most groups on Facebook are more social groups than factual groups and the members will chat and comment a lot more as that is the way Facebook is designed. Every time any of us post on this site its like writing a letter. Were as on Facebook its more like texting or 1 or 2 sentences in a message. Its a way of life for many people and very easy to use.
Liz's friend has had a bad reaction the last 2 times she has had her chemo so they are taking her off this one. She could not breath and her lips and fingers turned purple, Eyes went very red. She is in a lot more pain but was told this would happen when she started the chemo.
She does not know what is happening now. She has a scan on Friday to find out if the chemo has had any effect. But does not have an appointment with her Onc for another couple of weeks. Liz has told her to phone up and request an earlier one. The problem is not knowing whats happening is not good for the mind as you feel they are not doing anything for you.
Yes we have finished travelling for a while. The soap company was not as good as we had hoped so have not taken that any further. Trying to tidy up the house after not doing much over the summer as we have been away a lot. I must say we feel we have got a lot out of this summer enjoying holidays etc often at no great expense.
Regards
Peter
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Sylvia, Happy Belated Birthday! I'm sorry I missed it, I hope you had an excellent birthday. I love birthdays, I love cake and I love candles. Seems like a perfect day to me!
I was just logging on to post this article I came across, it was really full of interesting information about TNBC, myths disspelled, etc. Thought of all my sisters, so I'm posting this here for you girls. I'll be back again soon to say hi and chat!
http://nosurrenderbreastcancerhelp.org/breastcancer101/TNBC/TNBC.html
xoxo
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Hi everyone,
I hope you don’t mind me posting on here – it is on behalf of my mum who is not good with computers!
Just to share a bit of our story. There is a line in the Baz Luhrmann song “Wear sunscreen” (you should have listen if you have never heard it) with a line that says “Don’t worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum. The real troubles in your life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday.”
It was a normal year, everything was normal – how we wish for normal again – then my mum discovered a lump in her right breast, she didn’t say anything and really thought it was nothing, she is a very healthy 76 year old going on 18 – she mentioned it to a friend who confirmed a hard lump and she decided to mention it to the doctor – thank god!
From then on it has been a whirlwind, not only for my mum, but myself and the family – no one every expected that the lump would turn out to be cancer – our 4pm idle Tuesday day had arrived! Then come the emotions and the questions - Worry, fear, shock, bewilderment , loss of faith, questions, endless questions - why us, why our mum, she doesn’t smoke or drink she eats healthy, what caused it, questions that go on and on…..
After the biopsy the surgeon confirmed it was cancer but said not to worry, it was curable and a Lumpectomy was scheduled as soon as possible, they said she was lucky that she had found it the size it was!We waited nervously for the operation day to arrive, we had been given a big information pack about Breast Cancer but decided not to read it – there was nothing we could do now – I think the total lack of control is another factor that makes the whole thing even harder to deal with.
The operation went well – we felt relief the cancer had been removed and apart from a sore breast and bruising my mum made a fast recovery. Then comes the wait for the results – those two weeks were a blur – everything was on hold!
My mum emerged from the hospital smiling – it was good news it had not spread to the surrounding tissue or the lymphnodes – we were given a summary sheet but none of it was explained, we just saw Negative, Negative, Negative – this surely was good – wasn’t it?!?!? It is only be researching on here that we have found out this extra information – but the doctors and oncologist seem really positive, why!!
They assured her the cancer had gone and even were confident it would not return but wanted to do Radiotherapy just to make triple sure, which she is waiting to start.We all should be delighted but, I’m not – have we been just really lucky, or is it just too soon for a big sigh of relief! Was my mums cancer different or is triple negative the same for everyone, it is all very confusing!
With thanks,
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I'm glad to hear that the reports have been good for your Mom! You can definitely breathe a sigh of relief for that. She is very fortunate to have caught this early. As time goes on and you get further out from the diagnosis you can breathe easier. But I would most certainly trust and have the same confidence as your medical team! I read an article once that said they examined 600 TNBC tumors and each one had different characteristics. However, the majority of TNBC patients will not have a recurrence and chemo is suggested in this literature from the TNBC Foundation as the best treatment for it. It is very important to consider chemo for systemic treatment as radiation is for local treatment. However at age 76 they might have different protocols so it's understandable if chemo is not a recommendation at this point. If you PM your email address I will send this article to you. Congrats on all the great results and for going through all that you both have gone through.
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Hi MartOne,
Sorry to here you need to be on here. I know exactly what you mean about everything changing in a flash from a normal life to one with cancer. It really does change everything and the way you look at life. We have changed so much over the last 2 years, when Liz my wife was diagnosed.
I think they have decided not to give your mum Chemo because of her age. It really does age you 20 years. Liz is only now getting back to anything near normal. They poison you until you are very weak then stop, hoping it has killed all the cancer cells.
The doctors will always be possitive as it is what they are instructed to do. You need to ask as many questions as you can when you have appointments. Liz's friend has terminal ovarian cancer and it has come back. The doctors were very possitive telling her she will have more Chemo etc, all sounded very possitive! Liz also went to the appointment and was very blunt asking "but how long has she got"? After asking a few times the doctor said "6 to 9 months at worst and 2 to 3 years at the very best" Now everything was very possitive what they can do but they will never mention the outlook unless you really press them for an answer. This is not meant to frighten you as your mums is different but it does show you how they hide the facts as they feel most people do not want to know or cannot cope with it.
We had to ask Liz's surgeon about 8 times what her outlook was before we got the answer. It was 66% chance of being alive in 10 years time without Chemo and a 75% chance with chemo. Liz was only 41 at the time.
Peter
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Hello sam52
Thank you for your birthday greetings. Raymond and I spent the day quietly with my brother Ray.
I have been busy today working in the grounds. It is quite cool and people have their winter jackets on. The seafront was deserted today, but people were still buying ice creams. Raymond and I had a quiet lunch in the small restaurant to one of our garden centres.
Keep in touch, even if it is just a couple of lines.
Love.
Sylvia xxxx
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Hello peterandliz
Thank you for your post and thank you for the information about Facebook. I am wondering why there are many different TN groups on Facebook. Would it not make more sense to have one big group? Are the groups divided into the different breast cancers that have in common the triple negative receptors or how are they broken up?
The way you have described it appears to be more getting together for social conversation and I suppose that is one way of getting mutual support. I have a feeling that I would not fit in to this kind of thing, although I can fully appreciate its use. I think I prefer the way this thread has developed and I do want it to be informative and supportive, at the same time as being friendly and taking time to laugh and joke. I am not into texting at all, although I know it is a way of life now for many people. Of course anyone on Facebook is welcome to post here if they need support and comfort.
I was very sorry to read that Liz's friend has had bad reactions to her last two chemotherapy treatments and I do hope they will find something more suitable for her. It is absolutely dreadful what people go through on chemotherapy and there is an urgent need for a new and less lethal treatment. it is so awful that she is in pain.
Let us all hope that with all the nasty side effects she will have good news on Friday when she has a scan and that the chemotherapy will have produced some positive results.
I do agree with Liz that, with all the problems that her friend is having, she should not wait a couple of weeks for an appointment. It is not fair for patients to have to wait while in pain and in a state of anxiety. Patients need to know they are important in the eyes of their medical team and need to be shown compassion.
I think we are all going through that end of summer feeling and are settling back in the home and doing various chores. We are waiting to get our boiler serviced and I hate those kind of jobs.
It is good that you have enjoyed your summer holidays. Do you have any projects for the autumn and winter?
Keep happy.
Best wishes.
Sylvia.
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Hello InspiredbyDolce (Debra)
Thank you for your kind greetings.
Thank you for the link which I am sure all of us appreciate.
I have just started reading the link and I do like the upbeat way in which it is written and the very clear explanation of what TNBC is and why it is not all doom and gloom. I have always felt very glad that I did not need to take drugs such as tamoxifen and Arimidex as I know they have nasty and undesirable side effects. I was more than glad that I did not need to take Herceptin, as I know it has bad effects on the heart and I remember my consultant telling me from the beginning that it was better to be HER2- than HER2+. Over the years, over eight now, I have been quite happy to look after myself and do everything to have a strong immune system that would fight off cancer attaacks. On the whole, I have been positive about being negative and have not dwelt on all the doom and gloom. Everyone should read your link as it will make them feel good.
I shall post more when I have read the rest of the information, but this site looks like one to look at frequently.
I hope all is well with you, Debra, and keep posting.
Sending fond thoughts across the ocean to you.
Sylvia xxxx
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Hello MartOne
You are quite welcome to post here as much as you need and I know we shall all help you as much as we can.
Thank you for giving us all the details of what you and your mum have been going through and it looks as though, so far, so good. We can all understand that change from normal which you describe so well to abnormal as that diagnosis of breast cancer is delivered. We go into shock but we do recover. I think we can all appreciate everything that starts to whiz around in our brain but again we do recover. What none of us really knows is what caused our cancer, as there are many causes and risk factors. I was told not to torment myself trying to find out what caused mine but to focus on the fact that there was treatment and that I would be able to get on with my life.
Your mum has had the surgery and come through that. That is something to be positive about and the fact that the lump was found early.
We can all understand the anxiety of waiting for results, but somehow we get through it all.
It is also positive that the cancer was confined and had not spread to the lymph nodes.
I can understand how you felt on reading all this negative, negative, negative, and were happy about that until you started researching. This is where the internet is bad for patients as it can scare you to death. Read the link that Debra has just posted and my post in response to this and it should lift your mood, make you feel better and able to pass this to your mum. Take no notice of all the doom and gloom.
It is quite normal to have radiotherapy after a lumpectomy. This is done to mop up any stray cells and your mum should be able to cope with radiotherapy. It is quite tiring in that you have to attend for treatment five days a week for the number of weeks that the oncologist has decided you need. Let us know when your mum starts radiotherapy.
I am not sure which country you are in, but in the UK it seems to be quite often that chemotherapy is not offered in more elderly patients, probably because it is lethal and the immune system of an elderly person might not be able to withstand it.
We are told that every person's cancer is individual but there are some things that are the same. Your mum was diagnosed with invasive ductal carcinoma (IDC) and that is the most common breast cancer. The triple negative means that she is oestrogen negative, progesterone negative and HER2 negative. All this means is that after treatment she will not be given hormonal treatments, such as tamoxifen and/or Arimidex, with all their nasty side effects and which they have to take for years. She is also HER2 negative which means she does not have to take the monoclonal antibody Herceptin, which is another nasty drug. As I have said many times, I was glad about that for myself.
Help your mum, concentrate on the radiotherapy and recovering from that. She should then go on to regular check ups at the hospital, commencing with every three months and then every six months.
Be happy that the breast cancer was found early, the surgery was successful and the radiotherapy will complete the treatment.
Stay away from all the doom and gloom on the internet. If you have any questions please feel free to ask them on the thread. We have all been through it.
Sending fond thoughts to you, your mum and your family. You can get through this.
Sylvia xxxx
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The LBBC (Living Beyond Breast Cancer) has just posted a link to download a sample PDF of the following:
LBBC Releases Guide to Understanding Yoga and Breast Cancer
The new guide introduces readers to the practice of yoga and its benefits for women with breast cancer.
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That's funny - I don't know how I made that box, it just appeared.
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Many thanks for your reply and warming words – amazing to hear about the different characteristics too – I have PM’d my email address.
Thanks again Debra for your kind post and message, it means a lot.
Hello peterandliz many thanks for your reply and for telling me about Liz and I’m pleased hear that normal is once again on the horizon. I can’t imagine what the last two years have been like for you both!
They have said she doesn’t need Chemo, hopefully for the right reasons and my heart goes out to anyone who has required such treatment - as you mention. it is unpleasant to say the least!
I think them being positive keeps you positive and looking forward so I can see the logic.
Thanks again Peter – greatly appreciated
Hello sylviaexmouthukThank you so much for your detailed reply and explanation – that makes things so much clearer and is very helpful and comforting.
I think you're right about the cause issue; you could keep going round in circles!Yes I do think we have a lot of reasons to be grateful and positive and completely agree that the internet is sometimes the worst thing to look at, so rather glad she can’t get on! I will certainly pass on Debra’s info though.
I think the radiotherapy starts in October, she was offered a new test 1 week treatment but we have decided on the traditional 3 week plan. Just to confirm we are in the UK, in the Midlands.
Thank you again Sylvia and for your kind message it means ever such a lot.
Mart x
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Hello everyone,
I am just popping in this morning before I start the day to say it is three years today since I started this thread to try to bring TNBC out of the dark, especially where it seemed to be in the UK. I did not imagine all the people that would view or post. I see now that there are more than 40,000 views and over 4,000 posts and I would like to thank all those that have viewed and those that have posted. There is now so much more information and such a lot of support and comfort to all those going through this breast cancer journey.
Many thanks to all the regular posters who have become friends.
Thank you for the latest posts from Debra, Mart and the new post from jodywood. I shall be responding later.
Wishing everyone a good day.
Sylvia xxxx
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Hi Everyone
I had my results yesterday and was diagnosed with triple negative cancer and was also told I am in a rare subtype of that cancer called 'apocrine'. From my internet searches there is not a lot of information out there on it, but I understand my treatment will be the same as for TN. I also understnd the prognosis is the same.
I was diagnosed on 16 July with Stage 1 grade 2 IDC with some surrounding DCIS. I had my WLE and SNB surgery on 30 August. Yesterday I saw my surgeon to get my results and have been told I will be receiving chemotherapy and have an appointment with the oncologist for 30 September. I imagine the treatment will start in October some time.
I have also been told I will be referred to a family history clinic. Although there is no history breast cancer in my family that I aware of, I am an identical triplet so this could impact on my two sisters. It would be good to know whether there is any genetic disposition towards this. Even if there isn't, being identical will mean their chances of having breast cancer are multiplied because their sibling has it.
I am a teacher (part time 3.5 days in a senior school) and have not been to school this term. I was told by the surgeon I should have 9 months off in total so I don't anticpate going back to school until the summer term at the earliest.
After my initial diagnosis I worked out that I was likely to be TN, since I had already been told I was ERPR negative, so it's not too much of a shock. I also knew this was bound to lead to chemo. I am not looking forward to the chemo but I'm glad they are going to do the right things. One question I have is: is the chemo for TN more onerous than chemo for others or is there really no difference? I undersand there will be taxanes involved which can have bad side effects.
Good luck to everyone,
Anne
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Correct me if I'm wrong ladies, but I think during my chemo that I was the only TN in the fabulous Friday Frauen lineup but I think we all had the same infusions at least for the first 6 months. My hospital does EC (3 months) and then Taxol for 3 months weekly, tho the hospital where I started does FEC and Doc for the chemo. We switched to the local reseach- teaching hospital and the much longer chemo that was said to have less side effects....12 weeks of weekly Taxol vs 3 infusions of Doc.
So in summary, maybe you can post your exact chemo plan and lots of women here will be able to fill you in!
Anne I feel sure it is a difficult and scary time but you've come to the right place for support!
Just one suggestion would be to not spend too much time with Dr. google. He has a way of scaring everyone half to death!
Best wishes from Susan0 -
Hello InspiredbyDolce (Debra),
I have just been reading through the notes from the link that you posted.
http://nosurrenderbreastcancerhelp.org/breastcancer101/TNBC/TNBC.html
It was many pages long but my husband, Raymond, found a way of to print it out for me with a lot fewer pages than the original but with no information missed out. It is very useful information about TNBC and I thought it would be useful for future reference. I must admit it does tend to get a bit heavy after the first couple of pages. Nevertheless, I think it leaves a lot of room for optimism about breast cancer with triple negative receptors and I think we should ignore all the doom and gloom on the internet. In view of what I have just read, I tend to think that some of this doom and gloom should be removed and some of the updated opinions put in their place. I hope everyone will take the time to read the main points, even if some of this gets heavy.
There is a lot of information about possible new treatment and it makes one feel optimistic that patients will be alright even if they have local recurrence or a distant recurrence (metastases).
I read your post on the other thread about what you are eating in the way of healthy snacks. They all seem good to me. It would be useful if you could paste the information to this thread.
I was wondering how much time you spend on breastcancer.org and researching. I cannot whether you are working or not. How are you getting on with the metformin?
I noticed when reading through the latest notes that there was mention of the benefits of caloric restriction and keeping blood glucose level under control, which we recently discussed on the thread. These are things that we can do ourselves.
Thanking you for your great contribution. Look after yourself over there in Arizona.
Fond thoughts.
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
Thank you for the latest link that you posted. I shall look at it later. I keep coming across the benefits of yoga during cancer treatment.
Fond thoughts.
Sylvia xxxx
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Hello MartOne,
Thank you for your post. I was so glad that what I was able to tell you has helped clarify things. I feel that it is best to know a few basic details as a patient is preparing to start treatment. one thing that puzzles me with some patients with whom I have had contact is that they will mention TNBC, or triple positive breast cancer, or other indications of receptor status, but not the actual breast cancer with which they have been diagnosed and there are many different breast cancers, such as DCIS, LCIS, Inflammatory breast cancer, and less common ones such as metaplastic breast cancer. It is important to know what kind of cancer you have as well as the receptor status. I know that your mum has IDC, which is among the most common ones.
Please stay in touch with us and let us know when your mum starts her radiotherapy. We can all help and support.
I hope you are satisfied with the treatment at the hospital that your mum attends. It is so important to make sure you are getting the maximum treatment and support from the medical team, especially the oncologist and the breast cancer surgeon. You should have a breast cancer nurse that you can phone on behalf of your mother if you feel the need. I found mine most helpful.
Thinking of you.
Sylvia xxxx
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Hello apandy,
Welcome to our thread and a special welcome to a fellow Brit and a fellow Londoner (I was born in London). None of us wants to be here but we all get together, cope, help and support.
I was most interested to read all the details about your diagnosis. I found this link which has specific details about invasive ductal carcinoma (IDC) and the rare subtype of it known as apocrine carcinoma.
I think you will find the details here encouraging about successful treatment.
The chemotherapy drugs used are basically the same for breast cancer with slight variations in the regimen. Your oncologist will decide what is the best for you. The most frequent ones we see on this thread are cyclophosphamide (Cytoxan), either epirubicin (Ellence) or doxorubicin (Adriamycin). In the UK it tends to be a combination known as EC (epirubicin and cyclophosphamide). I had this for three months. Then there is usually a taxane, either docetaxel (Taxotere) or paclitaxel (Taxol). I had docetaxel for three months. You might want to discuss with your oncologist what drugs are to be used and why.
I can understand why you are being referred to a family history clinic, given that you are one of identical triplets. For peace of mind it will be good to know whether there is a genetic disposition. May I ask how old you are, because we are told that TNBC affects mainly younger women and that there is more likely to be a possible genetic connection in younger women.
I can understand that you are not doing your teaching work as this is very stressful and you need all the rest and relaxation as you go through cancer treatment, especially chemotherapy. I used to be a teacher teaching 12-18 so I know how stressful that can be. I was retired when diagnosed so I did not have the worry of work. I know women do work through their treatment but it must be difficult. You need to take care of yourself during treatment, as you have a weakened immune system and are very vulnerable to infection etc.
Do not be afraid of chemotherapy. All of us here can tell you that you can get through it. On this thread we all have information and tips on how we got through our journey and we can help you through yours. You asked about whether the chemotherapy for TNBC is more onerous than the chemotherapy for others. It is not more onerous, it is the same.
Do not get worried about taxanes. Concentrate on the fact that they are very effective treatment. We all react differently to these drugs and we all have different opinions about them.
To get through chemotherapy you need to drink plenty of water, get plenty of rest and keep looking forward. You need to keep your immune system as strong as possible by eating healthily.
The dose of the drugs you are given are based on your weight and height.
We can give you all sorts of information and tips but it is best for us to it gradually in order not to overburden you.
Keep positive and take care of yourself. Post as much as you like and ask as much as you like.
Fond thoughts.
Sylvia xxxx
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Hello susaninicking,
Just popping in to say I agree with you about not overdoing the time with Dr Google. I think patients need to listen to their medical team, ask as many questions as they like and get a clear idea of the treatment they are going to have and why. We all know that we have to be our own best advocate. In the UK we have to fight quite hard and make sure we are getting the best treatment possible. We all get the same chemotherapy drugs with a few variations, such as instead of EC we may have FEC (for everyone's benefit F=fluorouracil). I do not know why some of us have EC and others have FEC. It is probably a good question to ask one's oncologist. There must be a reason.
You are right in saying that when Anne (apandy) posts the details of her chemotherapy we can all help. I know that my oncologist put me on docetaxel rather than paclitaxel because she said it was less harmful on the heart.
How are you, Susan? How is the radiotherapy going?
I hope things are going well.
Sylvia xxxx
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My rads have not started yet. I had a mammogram 2 weeks ago to check for the all clear between chemo and radiation and all was not clear. Trauma. Then had an MRI which found the problem from the mammo was scar tissue but the MRI saw something else. None of my docs think it could be tumor immediately after chemo, but wanted it biopsied now so that I do not have to deal with this with a radiated breast. Went last week to the biopsy. Machine broken. Delayed until today. I managed to work myself up into a major lather in the last few days based on the fact that my initial biopsy back in January was a HORROR. One side of my breast was numbed, the other not, and the first needle was shot all the way through and OOPS out the other side. Bad beyond description. The first biopsy was stereotactic and this one was done with a MRI and a really kind doctor. I had some Ativan and being a huge chicken I just plain took too much. Got through the biopsy (eww, but not a horror), sat up and realized I was pretty stoned. Went to the room to get dressed and was in there so long they came and called for me. Then I staggered out and started vomiting. I'm such a doofus. Someone helped me get in a wheelchair ( thank you kind lady) while I threw up the whole way to the car. Got in the car and passed out and then slept all day. Still feel awful. I did not take too much on purpose but thought according to the dosage that this would be the right dose for the circumstance.
Results on Tuesday. Your prayers are appreciated.
Hope to start rads when I'm healed from today and want to just get on with my new normal life.0 -
Hi Sylvia
Thanks for your post. You are very welcoming to everyone here.
In answer to your question I am 53 years old. I am a single mother with a 12 year old daughter. So far she is coping well but I do worry how things might pan out if I am particularly ill. Friends and neighbours have offered to help and I have my sisters and brother not too far away too. I just want to keep things as normal as I can for her. She is in Yr 8 of the school I teach in and already her classmates are asking where I am and she has told a few close friends. Some of them I was due to teach English this year and they have another teacher for the time being who has told them the situation.
My daughter is feeling rather awkward about it at school. She is dreading me turning up with no hair but I don't plan to do that for the time being. I would like to go back about Easter time, and maybe my hair will be back at least partially by then if my chemo ends at the end of January/February, as it should do if I start next month.
I am lucky that school will give me full pay for 6 months and then half pay and my sister has offered to help out financially if needed, so I'm not too worried about money right now. I also have some savings and no mortgage so that will help.
Anyway, lots to think about, including how I will pass the time over the next few weeks waiting for my oncology appointment on 30th and then the start of chemo. I plan to go for regular walks (if it stops raining!) and catch up with some reading and the box set of Downton Abbey!
There is lots of advice on this website so I feel pretty well informed. It's a very strange time but I am sure I can handle it despite the obvious anxiety!
Anne x
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