Calling all triple negative breast cancer patients in the UK
Comments
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Hello Karen_Sheffield
I have just read your post with great interest and, although none of us wants to be here, I would like to give you a very warm welcome and tell you that you can get good support here.Please do not be alarmed by what you read on the internet about TNBC. This TNBC merely gives you your hormonal status and usually comes within the type of cancer known as IDC (invasive ductal carcinoma). The hormonal status means that you are oestrogen negative, progesterone negative and HER2 negative (ER-, PR-, HER2-). The doom and gloom seems to come about because after the standard treatment of chemotherapy, radiotherapy and surgery, there is no treatment such as Arimidex or Tamoxifen. Most often triple negative tumours are Grade 3. This is not to be mistaken with Stage which basically goes from I to IV.
I was interested to know that you were diagnosed 13 years ago with hormonal breast cancer and that you were on Tamoxifen for 5 years. I was surprised that at that time you had no chemotherapy or radiotherapy, so I suppose it was thought that Tamoxifen was sufficient to control the oestrogen.
It is interesting that you have now been diagnosed with triple negative breast cancer, because I have read that if you stay on Tamoxifen for a long time you can apparently end up with triple negative breast cancer.
I suppose that you are now classed as post-menopausal and would probably be considered old to have TNBC, but although we are told this usually affects much younger women, many older women are obviously being affected.
I was interested to read that you said this latest tumour appeared to come from nowhere. This also seems to be a common experience. I certainly felt that mine came from nowhere. One minute I could feel nothing and the next I had a large tumour. I was coming up for 63 at diagnosis, so did not fit into the younger women category.
It looks as though you have been through the standard procedure of today in that you have had the mammogram, ultrasound, needle biopsy etc.
I was surprised to learn that you have not had any chemotherapy this time around. It is quite common to do neo-adjuvant chemotherapy to shrink the tumour before surgery. I suppose all consultants work differently. I had chemotherapy for six months before surgery to shrink the tumour. I then had a mastectomy of the right breast. I think you have made the right choice in having a mastectomy.
Have you been told that you will need chemotherapy after you have recovered from surgery and then radiotherapy? I suppose that everything will depend on the pathology report post-surgery and whether any nodes have been found to be positive.
I hope you will get good results on March 29th and we shall all be thinking of you.
I am not surprised that no one has mentioned triple negative breast cancer. You can deduct it from what they say about your hormonal status. I was just told that my oestrogen, progesterone and HER2 were all classed as negative.
When I was diagnosed and started researching TNBC on my own and wrote to my consultants about what I had found, I realised that TNBC was in the dark ages. It has got a lot of publicity since then, especially in the US where patients seem to be given a lot more information. I am not sure what it is like in the UK really. What I do think, and what I always did, was ask my medical team more and more questions and was not shy about telling them what I had discovered on my own. For example, I discovered that some triple negatives, but not all, are sub-divided into something called basal type. I then asked about this but, of course, my tumour had been studied and sent off for storage somewhere. I was merely told that it probably was basal type, but I do not think my tumour was studied for it. You might like to ask whether your tumour is basal type, just to see what you are told.
When I was diagnosed I could not find anyone around me that was also TNBC. I thought that I may have had it, as an older woman, because I looked and probably was medically much younger than women of my age. I had never been ill before, was on a healthy diet and looked after myself.
I think it is a good idea, with reference to diet, to steer clear of animal products, especially meat and dairy, because of growth hormones. I eat no meat or poultry and no dairy products. I eat a little organic goats cheese and some fish.
I tend to think that stress plays a part in the development of breast cancer. I have had quite a lot of stress in my life and had quite a bit just before I developed breast cancer. I think we all have to try to relax, take one day at a time, and get the most out of it. I can get anxious about things, but I have learned not to worry so much and have learned to say no if I feel that people are putting me under too much stress.
Try to learn to relax and go for counselling if you can. There should be support groups at your hospital and charities such as Hospicecare can be of great help if you need someone to talk to. You can certainly come to this thread to let off steam and unburden yourself. On this thread there are a group of ladies who have all recently been through treatment and everything will be fresh in their minds.
Please keep in touch with us, Karen.
Best wishes from all of us.
Sylvia0 -
Hello linali
Thank you for your post and thank you for explaining how things work at your hospital. I can only say that if I had any concerns about anything to do with the fact that I have had breast cancer, I would not be getting in touch with my GP. I would be straight on the phone to my oncologist and my breast cancer surgeon to ask to come in and be checked out. I am sure they would tell me to come in immediately. Even after six years and nine months since my diagnosis, I take nothing for granted and know that my cancer could reappear as a new primary, recur on the site of my mastectomy or spread. I am ever vigilant. I would not count on my GP for advice, especially if I had a rash.It is only my own opinion and I can only say what I would do, and that is get the cancer team to deal with my problems.
I was sorry to hear that your art class had to be postponed, but glad that you were able to have coffee and a chat with people who needed support.
I agree with you that singing must be a wonderful way to relax and get rid of stress. I love to listen to opera arias, but nothing too heavy. You might want to look up Gypsy Watkins on the internet. One day I was in Sidmouth, not far from Exmouth, and walking through the streets, when I heard this most wonderful voice, singing Time to Say Goodbye in the town square. It was absolutely fabulous. She could easily be rich and famous, but does not want the hassle. I bought two of her CDs, one is Close to You and the other is Purple Album. They have some wonderful songs on them. I also love the Three Tenors, Carreras, Domingo and Pavarotti. I also like the group Il Divo. I find all that kind of music can transport me into another world.
I do hope you are having a good Sunday.
Best wishes
Sylvia0 -
Hello bak94
I hope you have finished your radiotherapy now.I hope you have read the post from Karen_Sheffield. I am sure you will sympathise with what is happening to her after your own experience of having breast cancer again after eight years.
To everyone else, I hope you are all having an enjoyable Sunday.
Best wishes
Sylvia0 -
Hello bake 94,
I just wanted to say congratulations on having finished radiotherapy. You must be so relieved. I hope you will do something to celebrate and then do all you can to relax and recover.
Best Wishes,
Sylvia.
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Hello Sylvia
I have been for my results today, so I thought I would give you an update.
The news seems to be fairly good. The tumour was 30mm ductal, grade 3. They removed it with adequate margins (greater than 10mm). Four lymph nodes were removed and none showed any signs of spread. There was no lympho-vascular invasion. Overall it was a Stage I cancer. As it is ER- my only option now is Chemotherapy. I will be seeing the Oncologist in 2 weeks time, when my mastectomy wound has had further time to heal. No radiotherapy is necessary.
I'm not sure the Chemotherapy will be of any benefit to me so I will have to get the opinion of the Oncologist and weigh up the pro's and con's. There may be some trials I could take part in. Apparently Weston Park Hospital in Sheffield is a leading research hospital so if I am eligible for any trials I would probably take part.
I didn't specifically ask about TN sub-types but from what the Consultant said it appears she didn't have any further information she could give me. Perhaps the Oncologist will be able to throw more light on that. I mentioned the link between Tamoxifen and ER- tumours too. She answered my question but I can't say I really understood what she said! I'm not sure whether I was on Tamoxifen for 3 years or 5 years so will be asking my GP next time I go.
I forgot to say last time that my Thyroid is borderline and I am supposed to go back so they can keep an eye on it. I know this is something you mentioned previously.
I feel much better today, as the results could have been a lot worse. I will have to weigh up whether I am willing to take the risk of having no Chemotherapy. It may be totally unnecessary but no one knows and that is the risk - perhaps the Oncologist could put a percentage on it?
Anyway, just going to have something to eat. I hope all is well with you.
Regards, Karen
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Hello mccrimmon324,
Iwas glad to know that you are safely back from your holidays, and I do hope that you had a wonderful time. Please post and tell us all about it.
Best Wishes,
Sylvia.
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Hello christina1961
Have not heard from you in a while. I do hope all is well with you.
I have been having a quiet time here as I am still not fully recovered from the awful bug that is going around.
The weather here has been very unusual for March and has been more like June. The sea breeze has kept it cool in Exmouth, but the seafront has been packed with sun-starved people in their summer clothes and enjoying ice creams.
Best wishes
Sylvia
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Hello Bernie Ellen and linali,
Iam just posting to say that I hope all is well with you over there in Ireland. I do hope that you have had a good week.
Best Wishes,
Sylvia.
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Hello Karen_Sheffield
Thank you for your post. I was so glad to know that you had some good news today. I am sure that you should make good progress with a Stage 1 tumour with no lymph involvement. It is strange how TNBCs invariably appear as grade 3, even when the tumour is small.Have you any idea why you are being offered chemotherapy rather than radiotherapy? It could well be because of the triple negative status. I know a couple of women here who had small tumours, but they were hormonal status and they had lumpectomies and radiotherapy. As you say, you will be seeing your oncologist in two weeks time and I am sure you can discuss chemotherapy treatment very thoroughly. If you follow the same treatment as I had it will be three months of epirubicin and cyclophosphomide and the three months of docetaxel (Taxotere). I had a large tumour so you may not need so much. I would think your oncologist might advise chemotherapy because of your TNBC status. TNBCs apparently usually react well to chemotherapy.
It is a pity that you did not really understand what your consultant said about Tamoxifen and later development of TNBC. Never be shy about asking anything you do not understand to be repeated.
Is it your thyroid or parathyroid that is borderline? I had problems with an over active parathyroid that was cured through surgery. With the thyroid you need to know whether it is over active or under active. Hypothyroidism (under active) is apparently very common and about 10% of patients can be borderline. If you are under active you can put on weight and feel very tired and lethargic.
I am glad you are feeling in better spirits and hope you are enjoying the unusually mild weather.
Thinking of you. Best wishes.
Sylvia0 -
Hello Maria_Malta, sam52 and Karen3
I do hope you are all keeping well, not working too hard and looking forward to your Easter breaks from teaching. I hope you are all having a good week.Warm thoughts
Sylvia0 -
hi Sylvia weather glorious here in ireland. Sending my thoughts to Bernie Ellen great news to have first year all clear.
Busy week. Met a fund raising committee from a village at the other side of our county, fabulous people. They running fun 10k on Easter monday and giving some of money to our support centre. We only get money from donations, no official funding.
I signed up for the Flora women's mini marathon and thanks to my DH have done 2 days training ,5k each day.A local village walking group are doing it for us and so a few of us have signed up too. I have sore legs, a blister and swollen arm but I'm sure I'll improve. We are all travelling by mini bus to Dublin on June bank holiday Monday 5th and I'm sure we will have a great fun day.
I decided the best way to stop worrying is to do things and meet people. There are so many interesting,funny and kind people out there!
Saw woman on tv that was celebrating her 60th birthday by starting on a list of 60 things she always wanted to do. Next year, I'll be 60 and my beautiful daughter 40 on 10th June { my 3 yr diagnosis] and DH 65 , so I must start thinking of MY list.
Looking forward to Easter but wish I was a child again so that I could take part in Easter egg hunt and get lots of chocolate! I love cadbury's creme eggs.
Our first woman to woman cancer group is on April 3rd I hope that it is a success. Will let you know.
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Hello Sylvia
I don't think Radiotherapy was necessary because I had the whole breast removed and there were clear margins around the tumour. Therefore, along with no node involvement, they didn't think it necessary to 'cleanse' the area of any remaining cells.
I have been offered Chemotherapy because there is no other treatment that can be offered. I am not keen to have Chemotherapy and wonder if the risks outweigh the benefits. The breast nurse told me the cancer has gone and the Chemotherapy is just 'insurance' in case any microscopic cancer cells are lingering anywhere.
I have just looked at Lindsay's Diagnosis details and wondered why she would be classed as Stage IIIb. Her tumour was the same grade as mine, was slightly smaller and had no node involvement. I was classed as Stage I. I am going to look at the literature I was given to check this.
With regards to my Thyroid. When I went to the GP about the lump in my breast I also asked for some blood tests because I had been feelng very tired. Everything came back normal apart from a borderline Thyroid. I was asked to make a non-urgent appointment with the GP to discuss this but, as yet, I have not been back because of the breast cancer diagnosis. I presume it will be borderline under-active.
For the time being I am going to concentrate on recovering from the mastectomy and doing my arm exercises to get rid of the tight feeling in my armpit. I will think about the Chemotherapy in a couple of weeks time!
The weather is lovely at the moment. I hope you have a good weekend.
Kind regards, Karen
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Hi Karen, will check my own details too because on last hosp visit a registrar told me I wasn't stage 3.My sister took down details of results as I couldnt take all info in I have some of letters re diagnosis but not all. I too had chemo to wipe up any left over bad stuff. I decided to have it as it was my only option. More as a safe guard than anything.Hope I havent confused you
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Hi Lindsay
I have just spoken to a Breast Care Nurse over the phone about my Staging (my Nurse wasn't available today). She said that I was classed as Stage 1 because the cancer was localised to the breast and, to their knowledge, had not spread beyond. I quoted the definition of Stage I and Stage II to her and she said the staging wasn't as important as the grade and was surprised it was even quoted by my Consultant. The reason they had recommended Chemo was because grade 3's can sometimes spread even if there was no evidence in the lymph nodes, so it was 'insurance' in the absence of other targetted treatments.
For your information The Breast Cancer Care leaflet 'Treating Breast Cancer' gives the following definition:
Stage 1 - the tumour is less than 2cm, the lymph nodes under the arm are not affected and the cancer has not spread outside the breast.
Stage 2 - this is divided into two groups as follows:
2A, the tumour is less than 2cm, the lymph nodes under the arm are affected but are not stuck to each other and the cancer has not spread; OR the tumour is more than 2cm but less than 5cm, there are no cancer cells in the lymph nodes under the arm and the cancer has not spread; OR although no tumour is seen in the breast, the lymph nodes under the arm contain cancer cells but are not stuck to each other or to other structures and there is no sign of spread to other parts of the body.
2B, the tumour is more than 2cm but less than 5cm and lymph nodes under the arm are affected but the cancer has not spread; OR the tumour is bigger than 5cm, there are no affected lymph nodes in the armpit and the cancer has not spread.
I would have thought I fell into the 2A category. I will see if the Oncologist can throw any light on it when I see him in 2 weeks time. From the information you have given it would appear that you would fall into either Stage 1 or Stage 2A. The definition for Stage 3B is 'the tumour is fixed to the skin or chest wall, the lymph nodes may or may not contain cancer cells, but there is no further spread'.
I don't want to get too hung up on technicalities, but you probably know what it's like when you get something into your head, you need to have your questions answered!
You may like to check your details next time you go to the hospital. It is easy to get things wrong when you are being given so much information and you are feeling stressed.
Take care, Karen
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Good morning from across the pond! I am doing well, working too much but managing to walk almost daily. I am grateful for each day, even the difficult ones. I have not had too many problems from tamoxifen. I think it makes me a little anxious, but not so much that I cannot deal with it.
My brother and I went to see B B King last night in concert. Our outing was long overdue; it has been over 30 years since we went together to anything. B B King is 86 years old. We saw him in a small theatre with excellent acoustics. The concert was very good, and he has a wonderful brass section in his band.
I hope everyone has a wonderful day!
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Hello linali
Thank you for your post. I am glad to know you are also getting some good weather. It is a lot cooler here today and overcast.I was glad to know you are keeping busy. That is the way to go, so that your breast cancer occupies only a small part of your brain. It is good to know you are getting out and meeting other people. I do admire all those people who are running to raise money.
I do hope all will go well for you in the Flora women's mini marathon. It sounds as though you have a good trainer in your husband. I hope all goes well when this happens in June.
You are right in deciding that worrying does no good and that it is best to get out and meet people. It is all good experience.
The woman who is celebrating her 60th birthday by starting to carry out a list of 60 things she always wanted to do deserves our admiration. I wonder what kind of things she wants to do. Let us all know what kind of things you are thinking of putting on your list. In fact, it would be interesting to hear from people about any regrets they have about the past and whether they are trying to put any of them right.
I hope you have a good Easter and have plenty of Cadbury's crème eggs to enjoy. You can always have an Easter egg hunt with your grandson and his friends.
Best wishes
Sylvia0 -
Hello Karen_Sheffield
Thank you for your post and thank you for the details about why you are not being offered radiotherapy. I can understand you have a hard decision to make about whether or not to have chemotherapy. I think it is probably unusual today not to have some kind of treatment in addition to surgery. If that were me I would want one or the other in order to have mopped up any possible stray cells that are not visible. Let us know what you decide.I have noticed that you have not put your full details under your post as most people do, so I cannot tell what kind of breast cancer you were diagnosed with, in addition to your hormonal status, for example most of us with TNBC or hormonal positive status have IDC (invasive ductal carcinoma). linali has DCIS (ductal carcinoma in situ), so the stage that she has is within the DCIS category. There is high grade and low grade DCIS and I think treatment depends on that. It would be useful for you to find out whether you have IDC or DCIS.
I think you are right to leave the thyroid problem alone until you are recovered from your breast cancer treatment. If you see your GP I think you will probably be advised to go on synthetic thyroxine supplements. My husband and I were both told we had borderline under active thyroid problems and advised to take thyroxine. We were not keen to do this as we know people on thyroxine and they are usually told it will be for life, and the doctor keeps increasing the doses. Our own research told us not to take thyroxine because it makes the thyroid gland lazy and it produces less and less real thyroxine as the synthetic thyroxine kicks in. My breast cancer consultant told me not to take any synthetic thyroxine as my level was borderline and many other people were in the same category. Instead we try to get iodine in our diet through eating some seafood regularly and taking either kelp powder or kelp supplements. The last time we were tested my thyroid level was normal and my husband's had improved. If I were you I would not go for synthetic thyroxine on the basis of one test. I think that GPs are too fond of dishing out pills and thyroxine and statins are much in vogue. We steer clear of both of them.
It looks as though the unusual weather could be coming to an end. People have been going quite mad on the beach here. In fact, looking back, I think this has been a mad week here in the UK. It started off with the revelation of "kitchen suppers" for huge sums of money on Downing Street. It then went on to the absurd publicity about hot and cold pasties and how hot was hot? Then came the mass hysteria over petrol and everybody rushing to fill up their tanks, not to mention their jerry cans. To finish off, we have had the big election victory for George Galloway's Respect Party in Bradford West. Of course, we must not forget George Osborne, the "Granny tax" and the tax break for multi-millionaires. Do you have any strong opinions about these matters?
Best wishes
Sylvia0 -
Hello everyone
I think that it is probably prudent not to worry too much about grade and stage. Most TNBCs are Grade 3 and you will probably have a mixture of chemotherapy, radiotherapy and surgery. I think they are Grade 3 because they tend to grow very quickly. We all know that if you are stage IV it means that the cancer has spread to other parts of the body, such as lungs, liver, brain, bones etc. It is then that treatment is more challenging.I have finally begun to read Icon magazine from CANCERactive in more detail and I think that this magazine is essential reading for everyone affected by cancer. In the first edition of this year (volume 9 issue 4) there is a lot of information about breast cancer. I found pages 22 to 32 of particular interest. The title of these pages is CANCER WATCH, The latest cancer research from around the world. There are short articles on all kinds of things. I shall try to give details of some of these in future posts. I shall start today with three of the headlines. They are as follows.
1. Hyperthermia breakthrough treatment for breast cancer.
I cannot give all the details, but basically it is a new treatment for breast cancer which kills breast cancer cells by heating them up. Doctors at the Karolinska Institute in Sweden are pioneering this treatment. Apparently within five years this could be mainstream treatment. This new treatment seems to avoid the possible complications of surgery that some research suggests seems to speed up metastases. You might like to look at www.canceractive.com where you will find an article entitled "Does surgery spread cancer?"
2. Radiotherapy damage may be prevented by flaxseed.
Eating flaxseed could help protect patients from the damaging effects of radiotherapy on healthy cells. See page 22, Icon.
3. Radiotherapy damage can be lessened by taking probiotics.
Some research shows that patients that take probiotics prior to treatment may experience less intestinal damage. See pages 22-23, Icon.
That is all for today.
Best wishes to everyone.
Sylvia0 -
Hello christina1961
Thank you for your post. It was so nice to hear from you and to know that you are doing well. Please do not work too hard. I was glad to know that you are managing to walk every day and that you appear to be taking things in your stride.I was glad to know that you have not had too many problems with the Tamoxifen and I know you will monitor it carefully.
How nice it must have been for you and your brother to go to a concert. I do not know much about B B King. Tell us a bit about him. It is amazing that he is still performing at 86.
Wishing you a good weekend and a pleasant week to come. At least it will be short because of the Easter break.
Best wishes
Sylvia0 -
Hello mccrimmon324 (Heather)
I was catching up on some of the threads and saw that your husband had been ill with pneumonia during your trip to Europe and that you had ended up with it. I was so sorry to hear that as it must have been hard to be on holiday and to be unwell. I do sincerely hope that you are both better now.I hope that you will have a good weekend and that you will have some leisure time during the Easter weekend.
Exmouth is looking very colourful now with all the bulbs and spring shrubs in bloom.
Best wishes
Sylvia0 -
Hello bak94 (Brenda)
I was catching up on the threads and saw that you were going to have some surgery in the summer. I am sure you will be glad when all of this is behind you.I also saw that you were concerned about some hardening where you had your port. I do hope all is OK.
How are your studies going?
Best wishes
Sylvia0 -
Hi Sylvia!
I am doing good, still a bit sore from radiation. I do have a hardened area where I had my infection by my port. It was biopsied when they did a scar revision on it and it was fine. All of my doctors have seen it and are not concerned, but I see my MO on Tuesday and I will ask him again about it. It is not completely hard, a bit rubbery feeling, my pt therapist says it is scar tissue, but it seems like it would get better. I might have to have it removed because it is bothersome. I finished my quarter at school and I did very well! Both A's! I start again on Monday, this time English 235, which is a report writing class and Geology. The school book store sent me a box of rocks with my books! My husband is so excited, he loves rocks! It counts as one of my science requirements!
I hope you are feeling well! I start back to work on Tuesday, just 2 short days a week, and I don't know if I am ready for it! I have gotten used to not working:)
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Hi Karen yes must check it out again.I remember the day that I went to check out the lump the consult told me at first that all was ok but sent me for mammo ultra sound and biopsy that day. When I went back an hour later she apologised and told me there and then that it was breast cancer but to come back for official diagnosis 10th june. my birthday. She told me that it was tethered so maybe that accounts for something. I was told at first that I wouldnt need chemo but I think that they tell you bit by bit so you dont get overloaded with decisions. The oncologist told me that the decision was mine as he couldnt guarantee that it would work and gave me the choice of which one. Cant remember the other one but I had 6 FEC. I would make the same decision again despite the side effects as it was the only thing offered, but that is only my opinion.
Yes it can be difficult to take in all info and even if you bring some one with you they can hear the same info differently. You are so right to ask the questions and it can be difficult to get answers. What I have learnt is that there are no definates, everyone is different but never to be afraid to ask. I wish I could take my own advice.
21 months on I still have questions and the support centre has been a brilliant resource. We have our first woman to woman group on tuesday.
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Just loggin in to ask you all to celebrate International Autism Day with me.
Leigh is my 25 year old who has Aspergers and other physical and mental health issues. He lives as independently as he can in Cork. I want to celebrate his uniqueness and the love and pride that I feel for Leigh. Leigh has faced and still does many many issues and feels very lonely at times as a result of Aspergers. Leigh is home for some pampering as he has recently been ill with stress induced psoriasis, so I am cooking all his favourite food and giving him lots of hugs and love.
Anyone else out there that has been touched by autism?
I also am beginning to feel rather stupid as I see how clued up everyone is about their diagnosis and treatment. I think all I was focused on was firstly getting through the treatment so that I would be well for my new grandchild and then I became obsessed with the fear that TN would re occur.
I need to get a detailed diagnosis so that I can ask proper informed questions at the woman to woman group.
Painted tulips at the art class , they look a bit abstract but not bad for a 1st effort !
The hairdresser is coming to the centre this afternoon and she is putting low lights in for me and blonde ones for my friend.
thanks
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Hello Sylvia
Thanks for telling me about you and your husband's Thyroid problems. I have a friend who is also borderline so it appears that your breast consultant was correct about it being quite common. I am in the process of making changes to my diet and will certainly consider taking Kelp when I am through the Chemotherapy. I have already started taking a high-dose multi-vitamin and a high dose-Vitamin C (the timed-release kind) as well as improving my diet and cutting out dairy products. I am also making a determined effort to drink more water. I have had Patrick Holford's Optimum Nutrition Bible for a few years, but intend to follow his recommendations more closely now. I have also ordered the book by Prof Jane Plant which details her experiences with recurrent breast cancer and her conclusions about dairy products being a factor in the high level of breast cancer in the West as opposed to the low level in China. Are you familiar with either of these books?
Do you know if there is any link between blood type and breast cancer? For example I am O rhesus negative and wondered if this was anything to do with me now being TN. Logic tells me it can't be, because I had an ER+ tumour last time, but I wondered if you had read anything about it in the past.
I have not heard about the topics you refer to in your post. After I started suffering with anxiety I stopped watching the news and reading the papers because I found most of it depressing. In fact I hardly put the TV on these days. I tend to watch documentaries on i-player when I want to watch something. There are also some interesting things to be found on You-Tube. I'm afraid I'm quite ignorant about current affairs at the moment!
Kind regards, Karen
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Hi Lindsay
My natural inclination is to get as many details as possible because I know I will worry about things I didn't ask or didn't understand later on. However, second time around, I seem to be taking it harder, and sometimes have to make myself ask the questions even though I may not want to know the answers.
You are right, there are no definites, so with regard to Chemotherapy you are in the position of having to poison your body ‘just in case'. Chemotherapy scares me more than the surgery did. My mother had breast cancer and survived it. However when she was older she developed Rheumatoid Arthritis. She had Steroids as part of her treatment and ended up with Leukaemia. So I am frightened that the Chemo will do more harm than good. I believe they also use Steroids in the Chemo mix!
Anyway, I don't want to sound depressing. Enjoy the time ‘pampering' your son and forgot about all this stuff. You seemed to enjoy your art class, I hope you keep it up. I used to go to photography classes which I really enjoyed. I have a lot to learn but have found that having an interest in photography makes me a lot more observant than I used to be.
Anyway, bye for now.
Karen
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Hello bak94 (Brenda)
I was glad to know that you are doing well and I am sure that the soreness from radiation will soon wear off. I was glad to know that the hardened area where you had some infection appears to be nothing of concern. I hope that the scar tissue will clear up in its own good time.Congratulations on doing so well with your studies. I got the impression that you really enjoyed what you were doing. I hope that everything will go well with your new studies starting today. Your courses sound very varied. Let us know all about them.
I hope everything will go well when you start back to work tomorrow. With two days a week it will give you time to get used to the routine of going back to work. Make sure you do not overdo things.
Keep in touch with us all.
Best wishes
Sylvia0 -
Hello linali
Thank you for posting to tell us that it is International Autism Day and for telling us about your son Leigh, who is 25 and has Aspergers syndrome. I am sure that Leigh will benefit from being home with mum and having some pampering and I am sure that doing this for him will do you a lot of good.If any of you reading this thread has had experiences with sufferers of Autism I am sure that linali would appreciate hearing from you.
You do not have to feel that you have not been clued up enough about breast cancer. We all learn as we go through treatment and when first diagnosed I do not think you want to be overwhelmed with information. The day that you are diagnosed with breast cancer is an overwhelming day and your emotions are all over the place. You need to get through that and then take things slowly as you begin to get yourself examined and a treatment plan is set up. You then have to get through mammograms, fine needle aspiration, ultrasound and core biopsy. After that it is the long haul through a combination of chemotherapy, surgery and radiotherapy. Finally, the pathology report and the announcement that there is no visible cancer in your body. After that the years of regular check ups and the anxiety that builds up as these approach. In between the standard treatment there might be problems with lymphodoema, but that can be treated. There will usually be various scans before and after treatment, but they are nothing to be feared. You will find that after the initial diagnosis, you will settle down into the routine of your treatment, and you will deal with any problems that you have to face. Do not worry too much about positive or negative status, stage, or grade. Just tell yourself that you will get through everything. There is such a thing as too much information and this can be as frightening as too little. Remember that breast cancer is very individual, and what happens to others may not necessarily happen to you.
Make sure that your medical team treats you as an equal and does not talk down to you.
I think it is such a good idea for you to be taking art classes. Keep up the good work.
Keep smiling, linali, and enjoy each day as it comes.
Thinking of you.
Sylvia0 -
Hello Karen_Sheffield
Thank you for your post. I did read Patrick Holford's Optimum Nutrition Bible some years ago and he has a lot of good ideas. He has written a huge number of books.Professor Jane Plant's books are very interesting as well. I read them when I was first diagnosed. I do remember that she was not doing at all well until she cut out dairy products and that when she did everything seemed to clear up with her breast cancer. She did have hormonal breast cancer but I think that no matter what kind of cancer you have, dairy products should be avoided. We have to remember that there are growth hormones in dairy products, meat and poultry and I think we should not be eating them. I do not eat any of these, and if you feel you must, if it were me, I would eat organic only. It is true that in countries where there is a high consumption of animal products, there is a lot of cancer.
I feel sure you will get a lot out of reading any of Prof Jane Plant's books. I would also recommend Dr Rosy Daniels The Cancer Directory. It is very informative and it will give you all the things you need to think about when you have been diagnosed with breast cancer and it will enable you to make a list of questions to ask your consultants.
It is only my opinion but I feel you can make yourself feel stressed out by trying to get an answer to why you developed breast cancer. I drove myself silly trying to answer this. I remember writing an e-mail to Prof Karol Sikora (a renowned oncologist) about breast cancer and a possible connection with an over-active parathyroid gland. I had a really nice response from him, but he told me to concentrate on the fact that I had survived and was living. I feel that is what you have to focus on.
I do remember reading about blood types and breast cancer, but do not know what to think. There are so many theories and so many factors put forward as possible risks. I feel that breast cancer develops over a long period of time due to some kind of breakdown in the normal functioning of the body. I am not a doctor, but I am pretty good at reading my own body. I feel that stress is one of the big enemies of good health.
I understand that you have switched off watching the news etc. It is very depressing and there is not much we can do about it.
Yesterday I listened to some of my favourite music to relax my mind. I love the song "Time to Say Goodbye" and yesterday I listened to it sung by Il Divo group and Joe McElderry (from Pop Star to Opera Star fame). I also listened to Il Divo singing, in Spanish (llorando), "Crying", the wonderful song by Roy Orbinson. I think Roy Orbison and Elvis Presley are the best.
Thinking of you, Karen, and wishing you all the best.
Sylvia0 -
Hello sam52
I have just remembered that I forgot to wish you a Happy Birthday. I think your birthday was about March 15th. I do hope you had a wonderful day.I have been trying to get my strength back after this awful bug and have been busy with my work in the running of our apartment complex. I have been organising fire alarm servicing, lift maintenance servicing, and a Fire Risk Assessment for tomorrow.
I do hope you will have some relaxation during your school holidays.
Love
Sylvia0 -
Hello Karen_Sheffield
I noticed in your post to linali that you mentioned that your mother had breast cancer and survived it, but later developed rheumatoid arthritis as well as leukaemia. How old was your mother when she had breast cancer and how many years later was it that she developed these other problems?I have read about how you can develop leukaemia years after chemotherapy treatment. I do not know how common this is. I do understand your reservations about chemotherapy. There is no doubt that it is very harsh treatment, but, as the women on this thread can tell you, it can be done and immediate side effects managed. At the moment this is the only treatment we have, along with surgery and radiotherapy, that can keep us alive. We have to count our blessings.
If your mother had not had chemotherapy she may not have survived at all. As it is, she was able to add all those extra years to her life. I am certain that if I had not made the decision to have six months of chemotherapy, followed by a mastectomy and then radiotherapy, I would not be alive today.
As for steroids, I had exactly the same concerns. Yes, they do mix some steroids with the chemotherapy treatment, but that is on the day of treatment only and for the six months or for however long your treatment. They do give you a few steroids to take orally at home for the first few days after treatment. I do not think this constitutes long term steroid treatment. What the steroids do is to help alleviate the side effects of chemotherapy. Because of my concern, when I started chemotherapy and had to sign a consent form, I wrote on it that I reserved the right to refuse steroids if I wanted to. There was no problem with this. The amount that I had was minimal. I had no problems with nausea or vomiting with chemotherapy, just tiredness. Of course, there is the problem of hair loss, which is perhaps the biggest worry for all of us. Even this you can survive. I wore a wig for quite a while and it did not bother me at all. In fact, those around me thought I had not suffered hair loss!
If I were you, I would listen carefully to what your oncologist says and then come to your own decision.
This is a difficult time for you. We all wish you the very best.
Sylvia0