Calling all triple negative breast cancer patients in the UK
Comments
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Hello Marymargarethope,
Thank you for your very detailed and informative post. I shall answer later this afternoon when I have more time.
Fond thoughts.
Sylvia xxxx
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Hello Marymargarethope,
It was really nice to hear from you. You must be feeling relieved that your radiotherapy is behind you. I know that most patients find it a lot easier than chemotherapy, but it is nevertheless just as lethal and, although the immediate side effects are usually fatigue and for some burning to the skin, there are other possible and long term side effects. I remember my oncologist told me that you can get inflammation with the lungs. Fortunately this did not happen for me. I have recently read the following: "Radiotherapy bombards cancer cells with gamma or x-rays from a powerful radioactive source, causing total cell collapse by destroying cancer cell DNA. Side effects in patients are thought to be minimal – mainly fatigue and localised skin burns. The long term risk of secondary cancers is acknowledged, but considered rare and, on balance, worth it."
The article I read goes on to say that later evidence shows that side effects are much worse than first thought. It lists a whole load of side effects in breast cancer from scientists at Leeds University. These side effects are mostly to do with damage to the heart, such as fluid around the heart, inflammation of the pericardium and irregular heartbeat. These side effects can occur twenty years after treatment.
I was not too happy when I read all this but we just have to accept it if we have opted for treatment. I have survived nearly ten years and do not think I would have survived without the standard treatment, but I do read articles about those that do. I do not think I would have had the courage to risk it.
I am not surprised that you have been very busy. Going through all your treatment, looking after four children and being the chairperson at your local school.
I can imagine how tired you must be and you need to try to rest so soon after your treatment. You need to let your body recover and your immune system to get fighting fit. It has been through hell.
It must have been a shock to finish radiotherapy and then be told you have the BRCA1 mutation. I think young women are more likely to have the BRCA1 and BRCA2 mutation.
Like you, I do not understand why they are dragging their heels with Suewirral's genetic testing. I think the younger you are the more likely you are to get the testing.
I do hope you will have a meaningful discussion with your gynaecologist. I remember that Jackpot (Gill) has been through all that kind of surgery, so she may be able to give you some useful information. I think she had a total hysterectomy. Deal with one thing at a time. Have your surgery and make a full recovery before thinking about anything else. Do not be afraid to ask questions.
I can understand how you have had to contact family members. It is useful to know how this has been handed down in the family. Remember that it can have been handed down through your father and not just your mother and that male and female members of the family should be tested if they want. Are you thinking of going on the trial with the Olaparib drug? Of course you will not know whether you will get the drug or a placebo.
I think it is still true that some women choose to go through cancer treatment without wishing to know anything. In a way it might be less worrying. You just know you have cancer and there is treatment to bring you into remission. I could not have gone through my own treatment like that.
I think the least you need to know is what kind of cancer you have, what your receptor status is, whether you need a lumpectomy or a mastectomy, node involvement, chemotherapy and/or radiotherapy. There is so much news everywhere about cancer, especially breast cancer, so I cannot see how you can avoid not picking up some information.
I found it easier to go through treatment trying to be one step ahead of my medical team. I always researched everything before appointments, but not on the internet. I always books.
You did the right thing being in control of what you wanted and what was happening to you.
Like you, I believe in bitter apricot kernels and have been taking them for nearly ten years. I also have been taking vitamin D softgel capsules from Solgar for a very long time. I take from 3,000 IU to 5,000 IU a day and I have got Raymond on the same regime, although he has not had cancer, but I think they are a good preventive. We also drink lots of green tea.
I love the bitter kernels and I really like strong leaf green tea.
It is good that the news is spreading about bitter apricot kernels.
Your friends would do well to look into all the information on the Cancer Active website. I think they have always been well in advance of all the news pertaining to cancer.
You should be able to get a blood test for your vitamin D levels, either through your GP or through the hospital.
As for low dose aspirin, I have taken it from time to time but I hear good and bad things about it.
You sound as though you are planning a very busy year but please do not overdo it.
I do hope you and your family will have a good time at Centre Parcs. You probably all need a break.
I was interested to know that you will be in Exmouth in May for your oldest child who will be training for the Karate England squad. We do know Haven Park. We know it as the Sandy Bay holiday complex and it is truly huge. We always know when it has opened for the season because everywhere is so much busier. If we can arrange dates it would be nice to meet up. How long are you going to be staying in Exmouth? Where are the world championships taking place?
I am sure you will find Lourdes interesting. I went there many years ago.
With your holidays in Spain, Menorca, and another visit to Centre Parcs and two weddings, I think this year is going to fly by for you. It sounds as though you need to get your surgery out of the way in March or April.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hi Marymargarethope, in response to your question I asked my gp and I had blood test on friday to check my vit d levels. I will let you know how I get on.
I have to pay for my brca test as my risk is only 'moderate' after having my family history examined by the family history nurse but I want to know for sure so am going to pay. I will get onto them again this week
Sue x
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Dear Sylvia and all,
It has been almost a month since my husband has passed, I miss him so much but then I think about his state of ill health and realize it was just time for him to go. His body had played out. Through looking at pictures of younger days I have been helped to remember that our lives were not always consumed by illness, we were younger and healthy and happy and had many good times. I know quite a few widows; 2 of them my younger sister-in-laws, several close friends etc. So I have a support system there and also the help of his 3 children.
As to my cancer; I have had a couple of visits to the BC surgeon. I had a seroma and she drained 22 cc of fluid from it. I went back 2 weeks later and she drained out 9 cc. I went back after a month+ and she looked at it and said she guessed it to have about half that so she was going to leave it alone for now and I will see her again in June. I have my next oncologist appt. in April. Before I go there I will have another MRI on my lower back. It will be my third one, they are watching a spot on my lower spine. She is not too worried about it but wants to check it one more time. I have a lot of arthritis and degenerative disc disease there so do have pain on a regular basis. I also still have pain in my damaged rotator cuff rt. shoulder (even after all the phys. therapy). I am thinking (reluctantly) of having a cortisone-type shot in my shoulder but have been dragging my feet. I am just so tired of being limited in my activity. I too like messing about with flowers in the summer, and working in the dirt, and this will really hamper that. I also have a lot of pain in the stressor muscles in the shoulders and neck. My sis-in-law said it was explained to her that stress builds up over time in that area and takes time to get out. She went thru 3 years of cancer treatment with her husband before he died and knows what stress is too. She has regular massages to try to deal with it and is back on an exercise regime.
Something else interesting: when I was last at BC surgeon she looked me in the face and asked me if I had considered reconstruction surgery. I was so surprised and just said no, it's been the last thing on my mind. She said it was definitely doable and was something I could be thinking about. A new idea for me, I didn't even know it was possible so long after mastectomy. Being 62 and not too excited about another surgery, it is probably not in my future. But I do have to admit I do not like the prosthetic bras and wear no bra whenever possible.
Mary Margaret, it sounds like you are doing well and have a very ambitious vacation schedule planned! Enjoy every moment you can, and rest when you can. I had the BRCA test done too, because of my age they were not going to do it. Then they realized I had a much younger sis and decided to test me. Mine was negative and the insurance did pay for it.
So life goes on for now, and we all put one foot in front of the other and keep going forward, right? Monday was the 31st anniversary of the day my husband and I met, half my life ago.
Wishing all of you the very best,
Mary
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Hello maryna8 (Mary),
Thank you for your post. It was nice to hear from you. I can understand how much you miss your husband and the grieving process will take a long time. You are very sensible to think about his state of ill health and how much it was robbing him of quality of life. It is good that you have been looking at photographs of younger days and thinking about healthy and happy times together, when illness was not all consuming. Cherish those happy days and all the good times you had together over a very long time. It is good that you have other people around you that have lost spouses, can understand what you are going through and can give you support. Just as only people that have been through cancer can understand what other cancer patients are going through, so it is that only those people that have suffered the loss of a loved one can understand others in the same situation. I am so glad that you are well supported.
I am sure that Suewirral will understand all your feelings as it is not that long ago that she lost her beloved partner, Colin.
As for your cancer, I think that seromas are quite common and I hope it will soon clear up altogether. Be sure to keep us up to date about what goes on in June.
I was interested to know that you have an appointment with your oncologist in April and I do hope all goes well. I hope you have good news from the MRI scan on your power back and I do hope the spot on your lower spine is nothing to worry about. How are you dealing with the pain from your arthritis and degenerative disease?
I was sorry to hear that you still have pain in your right shoulder from your damaged rotator cuff, even after a lot of physiotherapy. I can understand your reluctance to have a cortisone-type shot in your shoulder. My information from those who have had such a shot is that it does bring some relief, but the effect does not last for long and you have to have another one. I can understand how you might be tempted to have one because of being limited in your activity.
I do hope that time will make things better. I think that when a person is under stress, everything seems to accumulate around the neck and shoulder area. The only answer seems to be some kind of relaxation therapy, especially massage.
I was interested to know that your breast cancer surgeon was offering reconstruction. That is something that I would never have contemplated for myself, but I can understand those women who opt for it. I know that, if you have reconstruction surgery at the same time as your mastectomy surgery, that it makes the surgery much longer whereas a mastectomy is relatively short and straightforward. The mastectomy time I was given was about 45 minutes but it went into hours if you wanted reconstruction. I think about three hours. My own view is that the less surgery the better, just in case you start stirring up stray cancer cells and helping them to spread, not to mention the effects of the anaesthetic and the vulnerability of the area where you have just had a breast removed. I think all that needs time to heal and that if you are thinking of reconstruction it should be done much later. Remember, this is my own personal view.
When a patient is wearing a prosthetic bra, my oncologist told me that if the prosthesis is your proper size, you should not really be aware of it. I have just continued wearing the same bra that I wore before surgery and I get flaps from Amoena to sew into the right cup and then just fit my lightweight prosthesis into it.
I was interested to know that you had had the BRCA test done and that you were negative. Was your sister negative as well? If you have brothers were they tested? I have a friend whose sister died of breast cancer and so she and her three brothers were all genetically tested. She and two of her brothers tested positive, but one brother, who had a different blood group to them, was negative. My friend had both her breasts removed prophylactically and so far so good.
Yes, Mary, it is true that life goes on for now and that is the same for all of us. We just keep putting one foot in front of the other and going forward.
Just keep all the happy memories and keep going with that support group. I know that special dates such as anniversaries and birthdays are very difficult. I always think of family members and friends who are no longer with me on all the special dates associated with them.
Let us all keep looking forward with optimism and for those of us who love to get out in the gardens, roll on some nice weather.
Take care.
Love.
Sylvia xxxx
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Hello everyone,
I saw this link on the other thread and have started to read it. It was posted by InspiredbyDolce (Debra) so I am sure she will not mind my posting it here. Anything to do with exercise and nutrition are two things we can control, so have a look at it if you can in your busy days.
http://fitness.mercola.com/sites/fitness/archive/2012/11/30/exercise-protects-immune-system.aspx
The following is an item I found in my Cancer Active e-mail, under 5, A high fibre diet has been linked to a lower risk of death from any cause and the sub heading the 12 foods that fight cancer.
They are:
Oily fish.
Carrots.
Red and yellow peppers.
Sunflower seeds.
Pumpkin seeds.
Nuts (especially Brazil nuts which will give you your daily selenium).
Mushrooms.
Tomatoes (especially cooked ones for lycopene).
Green leafy vegetables (along with avocado, beans, carrots, pumpkins and egg yolk – green leafy vegetables will give you folic acid). This will help your DNA to replicate properly and protect it during radiotherapy.
Broccoli (and other green cruciferous vegetables, such as cabbage, kale, Brussels sprouts).
These all have fibre which helps to eliminate toxins.
Garlic.
Beetroot.
Pulses.
If you look at the list you will see paragraphs on each of the twelve mentioned foods with lots more information.
I would be interested to know how many of you receive this e-mail or read the information on line and whether you try to follow the nutritional information.
I definitely have all of the above included in my regular eating.
There is a lot of miscellaneous information after the listed food items. Green tea is the drink of choice and extra virgin olive oil the oil of choice, along with fish oils, flax seed, nut and seed oils and coconut oil.
The following important piece of information comes from the National Cancer Institute in America from research in 2012, it is stated that too much glucose, bad fats, cow's dairy, too much salt, too many refined and junk foods – a poor diet, could cause a cancer to regrow from any cancer stem cells left behind after orthodox treatment.
It would be nice to have some comments about all this information from those of you viewing it.
Best wishes to everyone.
Sylvia
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Oh Mary I do feel for you It is so hard to have this horrid illness and lose your loved one and it is so raw for you. Tell us a bit about your husband if you want to? and the good times you had when he was well?
What is the weather like where you are living? Here in the UK we are promised a bit of spring weather soon so will help for us would be gardeners messing about with the plants.
Keep posting love and use us all to support you, I know I have got a lot of support here
Love Sue x
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Hello everyone,
I do hope you will all have a good weekend. It is feeling very spring-like in Exmouth and the grounds here are really coming alive.
I do not know how many of you read the magazine What Doctors Don't Tell You or whether you read anything on line about it. I have just read the March edition and there is a very long article about all aspects of cancer treatment etc. It is entitled Weapons of Mass Destruction. Have any of you read it?
Sending you all best wishes.
Fond thoughts.
Sylvia
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Dear Sue
I had a reply written and somehow lost it, this is #2.
Thank you for your loving support, I know you understand. I have 3 widowed sis-in-laws, and several widowed friends; i now understand them much better too. Even though my husband was ill, and I had been watching his illness progress over the last several years, and then being diagnosed with cancer myself, it is still such a hard thing to watch and then to lose him. It has only been a month and there are so many things I want to ask him that I didn't ask when he was here.
Thank you for asking about our lives before illness. I had somewhat forgotten that we had different lives before illness took over. His daughters and I were going through pictures before the funeral and I was amazed not only by the number of pictures I took, but at how happy and healthy we were. Then the memories came flooding back. We loved to take his small boat onto the clear rivers near where we lived and fish and float. We would fish in the cool mornings and float in the hot afternoons. He enjoyed cars, and was frequently looking for something different to drive. We traveled a little, our favorite places were tropical islands, the mountains of the American West, and occasionally a cruise or Las Vegas. He wanted to go to Germany and Australia especially, but wanted to wait till he retired. He worked in a family business and truly enjoyed it, and didn't like taking off work more than a week or two at a time. We always counted as an anniversary the day we met, it was 31 years ago March 1.
The weather here has turned nice, it promises to be in the 50's and 60's for a while. Spring is in the air, and I am sure there will be lots of people out messing in their yards today even though everything is still muddy and brown.
I hope you are healing from losing your loved one Colin. It definitely does not make things easier by having to deal with this blasted cancer and the fears that come with it. My husband always thought that I would come through mine well, he always thought I was stronger than I felt I was.
Did you have your BRCA test? I had one and it was negative. A little more peace of mind to know, though.
Wishing you the very best, talk to you soon,
Mary
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Hi Sylvia,
It wasn't anything that I read about cancer that made me feel depressed, it was watching the program "The truth about cancer." I think it was supposed to be uplifting but it had the opposite effect on me, especially the Yong people's stories.
It was interesting what you said about the old drugs. When I receive neupogen after chemo I find that antihistamine is the only drug that provides symptomatic relief.
I am supposed to be going to Bruges tomorrow, that is if my youngest turns up. I think he has fell in love and I bet he is kicking himself for ever suggesting the trip. 😐
Michael
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Hi Mary, oh it was lovely to hear your happy memories of times with your husband. It is so hard at times but these memories are golden aren't they?
I received my vit D levels which were 57nmol which I believe is within the normal range so will continue with my daily cod liver oil capsule. I am waiting to hear more about the BRCA testing so watch this space...
I have had care of my totally gorgeous grandson all this weekend. The first night was for parents to go out for a meal, the second night was to help them rest while getting over food poisoning!! I must admit I am shattered so altho its been fun I will gratefully hand him back to his parents tomorrow!
Love to you all Sue x
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Hello Michael,
I do fully understand what you said about cancer. I still think the greatest hope is in preventing it. All the treatments bring problems but they keep us alive. I am sure you would be interested in that article entitled Weapons of Mass Destruction.
I do hope you manage to get to Bruges as you are probably all keyed up to go.
Do you have three step-children?
What it is to be young and discover love!!
Here we are with a new week beginning and not knowing what it may bring.
Are you following the run up to the General Election?
Wishing everyone a positive week and hoping to hear from some of you who have been out of touch for a while.
Fond thoughts.
Sylvia
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Hello jacqueline 1963,
I think you must have now finished treatment and I was wondering how you are feeling now.I do hope all is fine,
breastcancerhusband(Tom) I miss you on the threads and do hope you are still coping well. I know you must be very busy.
carolben- I just wanted to say that you are always in my thoughts.
Best wishes, Sylvia.
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Hi Sylvia
I have three step children and we are all meeting in London on Thursday evening for dinner on what would have been Janette's birthday.
I am not following the election too closely as we cannot vote for the main stream parties in N I. I would have voted for Sinn Fein purely for their anti austerity and social policies but they refuse to take their seats in Westminster do what is the point of eating a vote?
Michael
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Hello Michael,
I just wanted to let you know that I shall be thinking of you on Thursday March 12th when you have dinner with your three children to honour Janette's birthday. That is such a lovely gesture.
I can understand what you said about the general election. I think it is becoming a bit of a farce with no one being really honest. Debates and sniping about debates have become the story rather than issues. I would be happy to have legally binding manifestos sent out rather than all this time wasting with empty promises. We now have seven parties supposed to be taking part in two debates but the Northern Ireland parties have not been included. The latest was that Cameron was asking for the DUP to be included, so why not the other Northern Ireland parties? I suspect we shall probably end up with no debates!
Sending you best wishes.
Sylvia
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hi I was diagnosed in January and only found out this week I am oestrogen negative - feeling scared but trying to remain positive. Am having chemo followed by surgery then radio therapy. It does feel comforting to know there are survivors out there as the idea of no follow up drug options was traumatic. I am currently trawling the net for any recent research or info I can get comfort from.
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Hello Andreabpositive,
I was glad to know that you had found this thread. None of us wants to be here, but I hope you will find a lot of hope, comfort and information here.
Since you were diagnosed as recently as January, you will still be adjusting to the fact that you have been diagnosed with breast cancer and it can be very frightening. Once you start the treatment you will get into a routine and find things easier.
If I were you I would not overwhelm myself with information but would get the basic facts about your own particular case and settle into your treatment.
There are a few basic things that it is useful to know. I am assuming that you have had a mammogram, ultrasound and a core biopsy to establish what exactly is happening and am assuming that before that you had a fine needle aspiration to establish the diagnosis.
Have you been told what kind of breast cancer you have? The most common is invasive ductal carcinoma (IDC).
Since you say you are going to have chemotherapy first, I am assuming you have a large tumour. When this is the case you often have your chemotherapy first. This is what happened to me. Have you been told when you are going to start chemotherapy, how much you are going to have and what regimen of drugs you will have. One of the most common is epirubicin and cyclophosphamide (EC) for three months, followed by three months of a taxane drug, either paclitaxel (Taxol) or docetaxel (Taxotere). I had EC and then the Taxotere. There are other drugs and other combinations.
It is useful to know the stage of the tumour. There are various stages going through I to IV. It is also useful to know the grade. Most TNBC – triple negative breast cancers – are grade 3, but some are grade 2.
In your post you have said that you are oestrogen negative but you do not mention the other receptors. To be diagnosed with triple negative breast cancer you have to be told that you are oestrogen negative, progesterone negative and HER2 negative. Have you been told this?
It is standard procedure to ascertain whether any lymph nodes have been affected by the cancer. Have you been tested for this through a blue dye procedure? Have you been told whether any lymph nodes have been affected?
Do not try to fill your mind with too much information all at once. Just concentrate for the moment on getting through your chemotherapy. Most women find this the most difficult and it is the longest part of the treatment, but you can get through it and hopefully will not have too many side effects.
Have you been told how the chemotherapy drugs will be administered? There are different ways for this to be done. I just had a cannula on the back of the hand and drugs were administered that way. I had them through a pump and this was all done at the hospital. It took about an hour. You can opt for a port or a pic line. These are all things that your oncologist should be sorting out with you.
A few women on this thread have only quite recently finished their treatment. They are maryna8 and marymargarethope, so I hope they will post and let you know their experiences. There is a man on the thread, Tom, whose wife is going through chemotherapy and expecting a baby at the same time, so I hope he will be in touch. There is also Jacqueline1963 who has also recently finished her treatment.
I do hope this information will help. Do not be afraid. You can get through this. Do not worry about there being no follow up drugs. The drugs used for hormonal positive breast cancer all have nasty side effects and are no picnic. It is better to let your immune system kick in and fight after you have finished your standard treatment. I am very positive about being negative and am nearly ten years out since diagnosis and I had a large tumour.
Sending fond thoughts your way.
Sylvia xxxx
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Hello everyone,
I hope some of you will post in to support Andrea. We all know what it is like to get a diagnosis of breast cancer, the shock and fear and then the stress and strain of going through treatment.
To Gill (Jackpot), it is a long time since we heard from you. I do hope you recovered from your surgery and that all is well.
To Suewirral, I hope your therapy continues to help you and that we shall hear from you soon.
To linali (Lindsay), have you decided to move on from the thread? I hope all is well with you and your family and that everything is fine at the Centre.
Thinking of you all.
Sylvia xxxx
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Hi Sylvia and others. Im new to this thread. Of course I m not from UK. But I wish to get the emotional support I need in this thread. Im 32 diagnosed with tnbc. Though I mentioned my desire to get pregnant again after2 or three years to my oncologist he has prescribed dipherline every three month for 5 years which is really odd. Does any of the members here have any information about it? Being young when your periods are shut down is really overwhelming.
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Hello HanTagh,
You are quite welcome to post here. I set the thread up nearly five years ago as I thought not enough was known about TNBC in the UK and even less when I was diagnosed nearly ten years ago. Anyone from any country is welcome to post here and we have had women from the US, Canada, Australia, South Africa, Germany and Malta.
Now that I have read more of your details, I can see that you have been through the standard treatment for TNBC and as far as I can remember, I have not heard from anyone on this thread that has gone on to have additional treatment after the standard treatment we all go through. It will be interesting to see if anyone posts in to say they are having the diphereine injections that you are having.
Are you posting from China or another country where treatment is slightly different?
You said that you have no other family members with breast cancer, but I was just wondering, because you are so young, whether you have been tested for the faulty BRCA1 or BRCA2 genes. Triple negative breast cancer, we are told, affects mainly young women.
There has to be a reason why your oncologist has decided on this and you have a right to know.
There has to be a reason why your breast cancer consultant does not agree with your oncologist and he should also explain very clearly why he is against.
I do hope we can get to the bottom of this.
We shall certainly give you all the emotional support that we can and help you through all this.
Take care and try not to worry. You have come through all the standard treatment and that is a plus.
Fond thoughts.
Sylvia xx
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Thanks a lot Sylvia for your inspiration. My oncologist told me there is no need for brca testing as I have no family history and it was just a bad luck to be affected by tnbc at such a young age. I hope to be an inspiration like you in ten years.
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Hi there, I am new to your forum and keen to hear other peoples stories and views. I was diagnosed with TNBC a few weeks ago after having a routine mammogram. It was a total bolt out of the blue as I had no idea I had a tumour. I am having 6 months of chemo which starts next week, then surgery followed by 3 weeks of radiotherapy. After seeing my oncologist and hearing about the type of cancer I have, I googled to get more info. The phrase ignorance is bliss came to mind! I felt confident I could beat the cancer but am very worried about it reoccuring. My surgery is planned to be a lumpectomy but I am wondering whether it would be better to have a full mastecomy. I spoke to one of the breast nurses in the oncology dept and she has suggested speaking to my surgeon after the chemo has finished. Do you know of others that have taken this route.
Thanks Lisa
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Hello HanTagh,
I was so glad to know that I have been able to help and please come here any time you like.
I do hope you have a lot of support from family and friends, as that is very important. However, as we all say on this thread, there is nothing coming to talk to those who have been through a cancer journey or are going through it, as only we know what it is like to be diagnosed with breast cancer, the ups and downs of the journey, and the fears and panics we can experience.
By the way, I like your smiley.
Take care.
Fond thoughts.
Sylvia xxxx
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Hello iluvcooking (Lisa),
I would to give you a very warm welcome to our thread and let you know you can get a lot of support here.
I was sorry to read that you have just been diagnosed with triple negative breast cancer, but want to reassure you that you can get through this. You must be feeling in shock at the moment so soon after diagnosis, but you will settle down and then be kept very busy as you go through your chemotherapy treatment.
You said that you had no idea that you had a tumour and that it was discovered after having a routine mammogram. Because of this, am I right in assuming the tumour was small, could not be felt by touch and showed up only on a mammogram. Did you have an ultrasound along with the mammogram, as sometimes happens. Have you had the fine needle aspiration that shows up cancer cells in the blood? This is usually routine after the discovery of a lump.
I discovered my own tumour, went to see my GP, who examined me and said she was pretty sure I had breast cancer, but it now had to be proved. I saw a breast cancer consultant surgeon, who again examined me and then took the fine needle aspiration blood test. She made an appointment for me to see her the next day. That day I had a mammogram, ultrasound and a core biopsy. A core biopsy is where a piece of the tumour is removed and analysed. By the end of that day I had to return to see the breast cancer consultant and I was told I had breast cancer. I was later told that it was non-hormonal, and that it was oestrogen negative, progesterone negative and HER2 negative. That is that all the receptors were negative and that tamoxifen would be of no use. Nearly ten years ago when I was diagnosed the term triple negative breast cancer was not used for me.
Before I started treatment I also had a CAT scan and a bone nuclide scan to see if anything else was happening. I do not know whether this is standard. I had a large tumour and so I suppose the consultant wanted to see whether it had spread.
Which day will you be starting your chemotherapy and what drugs will you be having? Looking at some of the other threads the same drugs seem to be used for chemotherapy whether you are hormonal or not. It would be useful if you could let us know what drugs you are having by putting your details under your personal details. You will see what I mean if you have a look at the bottom of my post. The most common chemotherapy drugs are a combination of some of the following – epirubicin, doxorubicin, cyclophosphamide, fluorouracil, and a taxane drug, either paclitaxel (Taxol) or docetaxel (Taxotere).
If I were you, for the moment I would concentrate on the chemotherapy and not think about the rest. Chemotherapy is a long haul since it takes six months. Which regimen are you having for your chemotherapy? Will you have treatment every week, every two weeks or every three weeks? Women on this thread say they have found that having it every week is easier on them.
Have you been told that your breast cancer is just invasive ductal carcinoma (IDC) which is the name given to cancers of no special type and represent the majority of breast cancers diagnosed? There are less common breast cancers, such as lobular, inflammatory, medullary and others.
Be careful about reading too much information on the internet. It tends to be rather frightening. Like the rest of us you can get through this.
For the moment do not fill your mind with anything except getting through chemotherapy. Do not think you will suffer the same side effects as someone else. The most common is fatigue ans so rest as you need. Keep well hydrated and drink plenty of water, especially in the first days after treatment. Keep looking forward.
Do you know how your chemotherapy drugs will be administered – cannula, pic-line or port? I had mine administered through a cannula. Others opt for pic-lines or ports to avoid trouble with veins and difficulty getting blood for blood tests, which you will have regularly through treatment to make sure your blood levels are fine to continue with the next dose of chemotherapy.
All this seems a lot to take in but you will take it in your stride once you begin.
Have you got yourself a nice wig to get you through. Hair loss begins after the first treatment.
If I were you I would get through chemotherapy before thinking about surgery and whether to have a mastectomy rather than a lumpectomy. You need to find out whether any lymph nodes have been affected. Have you been tested for this? There is a blue dye test that can show up affected lymph nodes.
You need to discuss all of this with your oncologist and breast cancer consultant surgeon.
I think that is enough for you to digest today.
If I can help in any way, please let me know.
Fond thoughts.
Sylvia xxxx
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Hello Andreabpositive,
I was just wondering whether you found my response to your post. If you did I hope it was useful.
I was wondering when you are starting your chemotherapy and what drugs you are having.
I hope to hear from you.
Fond thoughts.
Sylvia xx
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Hello everyone,
I just wanted to say hello and wish all of you a very happy Mothers' day (in the UK).
I hope some of you will be posting soon.
Best wishes.
Sylvia xxxx
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Hi Dear Sylvia. Thanks a lot for all your warm welcome. I m sure you are much comfort and inspiration to everybody here. Against my oncologist s idea I have decided not to have dipherline injection as the side effects really bother me physically and emotionally and nowhere could I find any evidence regarding the efficacy of dipherline for triple negative medullary breast carcinoma. I also have decided to have my check ups only with my consultant surgeon who is a well known expert and professor in the field of breast disease and cancer. I wish I have made the right decision. What do you and other ladies think of my decision?
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Hello HanTagh,
Thank you for your kind words.
I can understand how you feel about these diphereline injections that your oncologist wants to give you, especially because of the emotional and physical side effects. Have you actually had any of the injections or does your oncologist want to get you started on them? You could always get a second opinion from another oncologist. I am not sure where you are posting from, but I would think that in the west there would be no problem. Where are you posting from? Have you had a heart to heart talk with this oncologist?
I have looked at the book I have here but I cannot find any mention of diphereline. Does it go by any other name?
I have just had another look at the BMA New Guide to Medicines and Drugs that I keep at home for reference and found Diphereline which I now know is a brand name for triptorelin.
The following is a quote from Wikipedia that I found under triptorelin on line and it states the following.
"By causing constant stimulation of the pituitary, it decreases pituitary secretion of gonadotropins luteinizing hormone (LH) and follicle stimulating hormone (FSH). Like other GnRH agonists, triptorelin may be used in the treatment of hormone-responsive cancers such as prostate cancer or breast cancer, precocious puberty, estrogen-dependent conditions (such as endometriosis or uterine fibroids), and in assisted reproduction. It is also used as therapy for gender identity disorder."
It all sounds a bit complicated to me but I am not a doctor.
I really think you need to know from your oncologist why she wants to do this and then you need to know from your breast cancer consultant why he thinks your oncologist should not go down this route.
I know from my own oncologist when I was first diagnosed that cancer cells can mutate. She told me that my IDC with triple negative receptors may not have started off as such and that it could have mutated. It could have started off as hormone positive. We have to remember that cancer is a very complicated disease.
Try to sort it out in a friendly manner as you do not want to get on the wrong side of your oncologist. Be firm and assertive and let her see the situation from your point of view because it is your body and you have to be in control of it and make the decisions that you think are best for you.
Here in the UK our medical cancer teams work together and not as individuals. They have meetings and discuss patients collectively. Here in the UK it is usual on diagnosis to be introduced to a breast cancer care nurse who is there for you throughout treatment and whom you can contact any time you have anything you want to discuss.
I do hope you have managed to have a nice Sunday, with all this going through your mind. I hope you have had a lovely day with your daughter. Here in the UK it is Mothers' day or as we used to call it, Mothering Sunday.
Thinking of you and sending best wishes.
Sylvia xxxx
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Thanks alot Sylvia for your response. Let me introduce myself completely. I m Hanieh Taghadosi from Persia ,an English teacher, having MA in English literature . Im deeply interested in English language, culture and literature. One of the blessings of this disease was to get to know great ladies like you through this discussion board. I have already had two injections which caused sever hot flashes and great depression as a result of not being fulfilled in sex matters.In fact my oncologist told me the hormones that triggered periods and breast growth at puberty should be shut as they can give the chance to any remaining cancer cells escaping from chemo and rads to grow. Yet if he is right there should be a mention of his theory somewhere. Or maybe he is conducting an study on me as he is an assisstant professor in a breast cancer research center. Even so he had to mention it to me. That s why I do not want to have any more checkups with him.Best wishes to you
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Hi,
Sorry for not having posted but I want t:-) o welcome our new women.
Not a place you want to be but somewhere that you will find support, encouragement and love.
I will be 5 years in June and could not imagine when I was diagnosed that I would be here. I was scared and confused with the words........ You have an aggressive cancer..... Going round and round in my head.
No info and no-one else with this TNBC.
Well I am here and have had such great support and information from everyone on this thread.
I will post later, but in the meantime happy mothers day to all women who care and support .
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