Calling all triple negative breast cancer patients in the UK
Comments
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Valstim,
I am so sorry this has happened to you, I am glad you say it was mild; however, hope you will make a full recovery and be able to have the life you want. I think I saw that the Caribbean had some rough weather anyway, I assume you did not get to go there? So glad your family is with you, we are all thinking of you, get well soon. Let us know how you get on.
Love, Mary
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Hi Val
So sorry about you being in hospital rather than in vacation but thankfully this has been caught early... I will have an extra prayer for you!
Hugs and positive vibes sent to you from France.
Please keep us updated.
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Oh Sylvia thanks so much. DD is typing for me. I so appreciate everyone's support.
I had a terrible pain in my lower left arm, then started slurring my speech. Dh called 911 and it was a blur. No high blood pressure or heart problems, so it was a surprise. A vein blew out in that arm, and that's why I had the pain, it was on my masectomy side. they had to make sure there were no tumors pressing on something causing the symptoms. though scary at least it ruled out cancer.
I feel a little weak on that left side, and will have therapy. Ugh.
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Hello 4everStrong,
I have just read your post from Friday August 26th. Somehow I must have missed it and for that I send my sincere apologies.
I was glad to know you have been reading the thread and that you have found them interesting. I know you are a busy lady and I do appreciate it when you find the time to post. You always have something interesting to say. I think all of us have got the message about the importance of vitamin D, green tea, blueberries and the Mediterranean diet. We all know we have to keep our immune system strong.
Thank you so much for the link, which I shall have a look at tomorrow.
I was glad to know that you had finished radiotherapy and that you are doing well. Did you have any nasty side effects or problems with your skin?
I think the rest of the ladies on the thread are all going through chemotherapy, which is probably the hardest part of the journey and we have to give them all our support, tips, motivation and encouragement to get through this long part of the journey.
I was very interested to read your statistics regarding your cholesterol level. I was puzzled that the LDL number does not figure. Overall, your cholesterol seems fine. I do wonder about all these numbers that doctors are continually throwing at us. They all seem arbitrary to me and doctors seem forever lowering the number in order to put patients on statins, which I would not touch. Cholesterol is important for the proper functioning of the body and statins seem to interfere with the making of cholesterol in the liver, and that does not seem quite right to me. I think low cholesterol diets are wrong. We need everything in moderation.
I am not sure how vitamin D is measured in all the different countries. Do you take any vitamin D softgel capsules? I have been taking them for years. The best source, of course, is to get some sunshine every day, about 15 minutes in the middle of the day and not wear sunblock. In the winter we all need to take supplements. You might like to sign up to Cancer Active and Chris Woollams free email newsletter. On the site there is a lot of information about vitamin D. we need about 4,000 to 5,000 IU a day.
You must be mighty fit with all the steps you are doing. How do you fit it in with your hectic life?
You seem very strong and determined. That is a good thing.
Take care and keep in touch.
Fond thoughts.
Sylvia xxxx
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Hi Val
So sorry to hear you are in such a situation, but happy it was mild and also not cancer. You are in my prayers.
Love
Hanieh
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Hi Sylvia
This term will finish in one week and I will have about 2 weeks off. I have reduced my classes for the fall as the teacher -observation has been added to my working hours. I'm so tired and need rest and peace of mind.
By the way, one of my closest friends is in the hospital delivering her baby. Though it is late at night, I can't fall asleep unless I hear some good news from her. I can feel the pain she is suffering now.
It reminds me of my wish I had some years ago to have another baby. I feel somehow down. I don't know why it didn't happen. My daughter is so alone having no brother or sister. If only I had to deal with baby issues rather than cancer issues.
Love
Hanieh
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Hello Val,
What an awful time you have been experiencing, just when you were so looking forward to that holiday after finishing radiotherapy. It just proves that when we get up in the morning we have no idea what the day will bring and in life we have no idea what can happen to us.
It is good to know that you have no high blood pressure or heart problems that might have made things worse. Do your doctors have any idea why a vein blew out in one of your arms. It is strange that it was on the side where you had your mastectomy. It does make you wonder whether the mastectomy surgery had anything to do with it. It is good to know that there is no cancer involved in all of this.
I can understand that you feel a little weak on that left side and I do hope you will be able to get started on some therapy to help you on. Is your speech still slurred or has it normalised? Sometimes this can take quite a while.
I do hope you are resting well in hospital. I am glad that your daughter is there taking good care of you and typing for you so that you can keep in touch with us all.
Love and hugs.
Sylvia xxxx
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Hello Hanieh,
I was glad to know that your term will finish in one week and that you will have about two weeks off. It is good that you have reduced your classes for the fall as your teacher-observation has been added to your working hours. You must not overdo things. It is only just over two years since you were diagnosed and that is not that long ago. Your body will not have recovered yet. It still needs tender loving care.
I can understand that you are tired, in need of rest and peace of mind. All that is understandable.
You must try to relax and get off to sleep at a decent hour. We are told we should try to be in bed by 10pm because the two hours sleep before midnight are the most beneficial. We also need to sleep in completely darkened rooms so that melatonin kicks in.
I can understand that sleep is not coming easily to you as you wait for news that your friend has safely delivered her baby.
Do not give up on the idea of having a baby brother or sister for your daughter. You are still young enough. I am sure that your daughter has plenty of friends and cousins. She will be fine.
I do hope you get a really good rest when you get your two weeks off.
Here in the UK the school summer holidays (6 weeks) are coming to an end and the school term will begin on Tuesday September 6th. The children have had their GCSE level exam results (taken at 16) and will be deciding what to do next. If their results are good enough they will be able to start their two year A level course at school or in a post-16 college. You need good A level results to get to university, but there are other ways to further your education. The universities and colleges will soon be going back. There is definitely an end of summer feeling and it is dark by 8:30pm.
That is about all for today, Hanieh. Another week begins tomorrow and I always wonder what it will bring. There is quite a lot going on here in the UK.
Thinking of you and sending my love.
Sylvia xxxx
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Hi Val,
My thoughts are with you during this difficult time. Recovery from stroke needs you to be all rested and focused on the positives. Thank god chemotherapy and radiotherapy are behind you, and most importantly cancer is out of the equation..
You are with professionals at hospital, put your mind at rest, they will worry for you while you chill and try to recover .. may be starting a daily pattern of exercise
Of course it isn't easy but it is doable so go for it!! stay strong and do what you like the most, listening to music watch comedy shows.. taking it step by step!
Thinking and praying for you..
Hugs and strong vibes to you.
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hi Sylvia
Had my oncology teleconference today and it went ok. Spoke to him about shoulder and abdo pain which he will review when he comes to town on 12tg. In the meantime he made a very good point. I have previously dislocated that shoulder and I have had an MRI of my chest which included all the bones in that area plus a ct only 8!weeks ago so therefore I should be concentrating on get through the Chem because that is what it's designed to do. He reinforced the 90% risk of non reoccurance and the small tumour completely excised with great margins and no sentinel node involvement plus a ki67 of 10%. Secondaries are usually present with disseminated disease and I have always suffered from osteo arthritis.
I need to put away all the worry now until chemo and radio finished and take each day at a time. Still very scared but it's time to start living each day. sooo very hard to do and still very frightened but I need to do this for me and my beautifuL family
Cheers
Kat
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Hello Kath,
I do hope you are feeling better about things today. You must just concentrate on your chemotherapy and get through that. If you do not do this you will just have a very confusing time. Chemotherapy is challenging enough for your mind to cope with.
The way to deal with all of this is one day at a time.
Thinking of you and sending fond thoughts your way.
Sylvia xxxx
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thanks Sylvia,
Try very hard but so scared about the feeling I have over my liver area. I know I had a liver ct which was clear 8 weeks ago so it's not logical for mets and liver already and bloods all goodbut the chemo is play with my head. Feeling so isolated today. Just try hard to think about 1 day at a time
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Hi Sylvia
Today I had another songraphy, as I couldn't stay calm. As I had guessed, there is a new mass near the area of my surgery. Im so worried. This afternoon, I'm going to see my surgeon. I'm alone as my husband is on a business trip. Pray for me.
Love
Hanieh
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Hello Hanieh,
I was sorry to read that you have so much worry. I do hope all will be fine. I am not sure exactly what is happening with what we call an ultrasound scan. I thought the first one showed that everything was in the clear. This one seems to be saying that there is a new mass. Does this mean that something else has shown up since the first ultrasound? In younger women breasts are often dense so ultrasounds and mammograms are not as reliable as they are for older women with less dense breasts.
This mass that is showing in the area of your surgery could be some form of scarring. I would think that if your surgeon is concerned he will probably want a biopsy done to ascertain what is going on.
Please let me know what happens when you see the surgeon. Try to stay as calm as you can as worrying will not solve anything, and probably make things worse.
It is unfortunate that your husband is away, so I hope you have found someone else to accompany you to see your surgeon. Being alone and worried affects concentration and often the ability to take in what is being said.
We shall all be thinking of you and wishing for a good outcome.
Love.
Sylvia xxxx
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Hanieh,
I will send up prayer for you that all is okay, I am glad you are getting things looked at. Hopefully it is only scar tissue, but better to know and have peace of mind. I will be thinking of you and waiting to see what you say about this.
Talk to you soon, Love
Mary
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Hi Sylvia and Mary
Thanks for all your kindness and care. Unfortunately, my doctor was not in the clinic and I have to see him on Saturday if I manage to set an appointment. Thankfully my class observations have finished due to the last days of our present term and I have some extra time to devote to myself.
I had a songraphy about 4 months ago which was clear. last week, I went to the clinic where I usually have my sonos. Yet, the doctor who used to do them was not there and another doctor who was a woman did my sono. She found a mass in my lumpectomy area. My husband took the result to the doctor' s to set an appointment. Yet , my surgeon, by looking at the songraphy results decided it wasn't anything important and decided to see him in six months. However, today when I woke up touching my breast I felt that mass and I felt dubious whether it had already been there or not. So I went for another songraphy to have it done by the doctor who had that clear sono 4 months ago. He decided I have fibroadenoma near my lumpectomy place. He believed the sonographic view was benign. Yet, I need this to be ruled out for my peace of mind. I know my surgeon is always busy and it's really difficult to make an appointment with him. But should I wait in such stressful situation for 6 month.
I need all your positive energy and prayers.
Love
Hanieh
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Hello Hanieh,
I was sorry to read that you were not able to see your doctor, as he was not available at the clinic. I hope you get to see him on Saturday.
If it is a fibroadenoma, apparenty these are very common in young women like you and are linked to the sensitivity of breast tissue to female sex hormones. They do tend to grow more quickly during pregnancy, probably due to the increased levels of female sex hormones.
A sample of the tissue from the lump can be removed and examined to confirm the diagnosis, this is called a biopsy.
In my medical book it says that fibroadenomas are harmless and do not require treatment unless they become very large or cause discomfort. It further says that fibroadenomas are non-cancerous and that multiple tumours may develop in one or both breasts. They are painless, firm, round lumps that are usually between 1 and 5 cms in diameter and movable.
It looks as though if you want peace of mind you will need to have a biopsy.
Let us know how you get on.
Fond thoughts.
Sylvia xxxx
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Hanieh,
I would not want to wait 6 months to see the doctor, I hope you can get an appointment for Saturday. We tend to worry and then sometimes the worry takes over our lives. Better to find out what's going on and deal with it, or be able to put it out of your mind because it's harmless. I have heard of many women having a fibroadema, when I first found my lump I hoped for that diagnosis. Hopefully the first doctor is right and that is your diagnosis.
Prayers for good news for you!
Love, Mary
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Hello Hanieh,
You have all my prayers and sending you my positive thoughts.
It is understandable to get anxious and all but honestly it will not do you any good to worry. You have to think positively even if there is a voice in the back of your mind pushing you to think negatively. My answer to that voice is to act appropriately to get yourself check as soon as possible for that little voice (don't freeze) but that's all, don't believe it until it is time to believe it!! The objective is to keep your body full of happy hormones not the bad ones.. stress and anxiety release cortisone to your body which has a level of toxicity if it is in our body for a long run… so don't give this hormone to your body.. listen to music, think positively will help your body release good hormones, which can do miracles..
In the case that something goes wrong.. we'll cross that bridge when we come to it, NOT BEFORE!! Trick your brain, be stronger than your brain and control what it does to your body..
Good luck and many many many positives thoughts to you.. really really hoping this is nothing at all.
keep faith
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Hi Sylvia, Mary and 4everStrong
What a great relief you , my dear friends, are to me. I m super relieved when reading your posts. I'm just trying to do some relaxation technics to ease my mind of all the anxieties. I hope everything goes well on Saturday and I come here with some good news.
Lots of love and best wishes for you all
Hanieh
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Hello all and Sylvia,
I congratulate you for starting this link. I have read quite a lot posts and thought I should talk about myself. I am 37 and diagnosed of BC while on maternity leave. Had pain in Breast saw GP who thought nothing wrong but willing to refer. I went for consultationand was explained as a fibroadenoma on U/s but carried out.biopsy. One week later had results with shock. Diagnosed asTN. With high u ki 67 . MOstarted on chemo had 3 doses of fec and of taxane.ne. I had WLE with th complete pcR.. I am duee to see CO next weeks for radiotherapy. I had se sentinel node be node biopsy but was negative. Surgeon seems seems very happy with pcR
Thanks for sharing your stories
Nili
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Hi Nili
Sorry to see you here but glad that you have found a great thread of supportive people who are always here to help you through all your journey.
I know how difficult and heartbreaking the news of cancer diagnosis is. I have past two years since my diagnosis and been through lots of ups and downs. Some days were better than the other but at last the days of treatment came to an end and I tried to celebrate my rebirth. I still have my worries, but there have been some days that I completely forgot about what had happened. In fact, my life after this diagnosis has been more profound and meaningful and I have enjoyed the beauties of life more than before diagnosis. Right now, I m somehow worried about my tomorrow check up. Yet , I m sure if everything goes well, I will be my normal self and even happier than ever. So there IS light at the end of the tunnel.
Nili , I pray deeply in my heart that you go through all your treatment smoothly, with the least difficulties and start and enjoy your new life and your new rebirth. We should be here for our loved ones , especially our dear children, to see their growing up and achievements in their lives.
Sylvia and Mary are really supportive and caring. Don't miss being in contact with them.
Lots of love
Hanieh
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Hello Nili,
Thank you for your post and for your kind words about our thread. I was pleased to know that you have been reading the posts and have now decided to come on board with us.
I would like to welcome you here on behalf of everyone. None of us wants to be here but when we find ourselves here, we all try to get together and offer support.
It must have been a great shock for you to be told that you had a fibroadenoma according to an ultrasound but that a biopsy then concluded that you had breast cancer and that you had triple negative receptors. Do you know what kind of breast cancer you have? The most common is invasive ductal carcinoma (IDC) which is the term used for breast cancer of no particular type. Do you know how large your tumour was, the stage and the grade? These are the most common things that patients are told about the tumour.
From your details it looks as though you may have had a large tumour because your oncologist decided to treat you with chemotherapy first. This is known as neoadjuvant chemotherapy. It looks as though you had the standard chemotherapy regime of FEC and a taxane. Did you have docetaxel (Taxotere) or paclitaxel (Taxol)? Congratulations on getting through your chemotherapy. Did you have a difficult time on this?
I see from your details that you had a lumpectomy and then had the result of complete pathological response, so that is all good.
Do you feel ready now to start radiotherapy? Let us know when you start so that we can support you. Most patients find radiotherapy easier than chemotherapy, but it is still very wearing because you have go to the hospital five days a week, with a break at weekends. If you want any information about radiotherapy I am sure the women on here who have recently gone through it will be here to help.
It seems that there is breast cancer being diagnosed during and after pregnancy and I am wondering why. We have had women on here going through treatment while pregnant. Have you any ideas about this?
Sending you best wishes.
Sylvia xxxx
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hi Sylvia.
Just checking in. Duefor my 3rd ac in 10 days and mentally I am still not strong although having better days. Shoulder good now but physio seems to think that the Korean massage may have aggravate my phrenic nerve a little as it is feels strange over liver. I keep telling myself I would not be symptomatic of liver mets with a clear ct and mri 9 weeks ago liver bloods good and not yellow but always thinking the worst.! My dr won't do another liver ct because of recent one and low risk but it is driving me batty! He keeps say 90% chance of non reoccurance I have changed mwhole diet as well and u am trry to eat healthy but stil So scared! I don't understand why I'm doing this while I'm having treatment with a good prognosis! The AC is very strong and doing what it should! This chemo journey is so hard
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HI, Nili,
I am so sorry you were diagnosed with cancer while on maternity leave, that should be a happy, blessed time instead. But here you are, and at least it sounds like you have a good prognosis. With the TN diagnosis, we all have to do the chemo, and most of us the radiation as well. I did not have radiation, but as Sylvia said and I have heard from others, it is tiring to go every day but otherwise not too bad.
Someone is usually here to listen and respond, we have been through it and there are some here still going through treatment, we are here for you when you need a hand.
What does "high u ki 67" mean? I notice many of the younger women on these threads have numbers in their diagnoses and I am ignorant of the meaning. When I was diagnosed just 2 1/2 years ago, I don't recall any of that.
Congratulations on your baby, boy or girl?
Talk to you soon, Mary
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HI Sylvia, Mary and all
Thank God. So relived. My doctor- a very well known professor in the field of breast cancer , upon physical examining ,said it's just scar tissue forming a lump. He is always a great source of positive energy . How scary this lump was! He also advised me to get pregnant as soon as possible. Yet my husband is not sure about it.Thanks for all your prayers and positive energy.
Again , I can sleep peacefully wishing and planning for my future.
Lots of love
Hanieh
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Hanieh,
I am so glad to hear your good news! What a relief that is! I am also so glad you didn't wait the 6 months, that would have been miserable.
Now you can get back to life and maybe decide whether or not to have a baby, that is a much better situation to think about.
Talk to you soon, love, Mary
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so happy for u! That is wonderfy
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So happy for you Hanieh. Welcome Nili. Hello to all. Still recovering from mild stroke and having therapy for that and for hand and arm lymphedema. Feeling very weak, but getting better each day.
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Hi
I'm from Scotland and I'm coming to the end of initial course of planned treatment and I've just joined the site. I have not met anyone else as yet with TNBC and so I hope to pick up lots of valuable info.
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