Calling all triple negative breast cancer patients in the UK
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Hello everyone,
I was having a look round the grounds here and thought you might like to look at some of the shrubs still looking lovely although I can feel that summer is slowly coming to an end here. It is quite cool for August and we are having a lot of rain. It is the third week of the school holidays and the weather has not been good.
Wishing everyone a good week.
Best wishes
Sylvia xxxx
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Hello Pam,
It was nice to hear from you.
I think it is a very good idea to cut down on television viewing in order to read more. It is good to know that escaping into a book makes you happy. I find that television is largely useless and can turn the mind to mush. I think television could have been a wonderful thing, especially for education, but so much of it is now sensationalism and showing off. I like to watch news programmes and I find one of the best programmes is Crosstalk Rules on RT. I also watch very profound films on a French television channel, TV5 Monde. Apart from that I do not watch much.
Thank you for your contribution to our thread.
Take care of yourself.
Fond thoughts.
Sylvia xxxx
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Hello Pam, again,
I forgot to tell you that I have just been reading the latest book by Dr Michael Mosley, entitled The Clever Guts Diet, How to revolutionise your body from the inside out.
This is what he has to say about television: "As someone who makes documentaries for a living, I regret having to tell you this, but television kills. Professor Spiegelhalter of Cambridge University has calculated that every two hours you spend sitting down watching TV cuts your life expectancy by about half an hour. The other problem is that if you are sitting down watching TV you are also probably eating crisps and other junk food.
"One way round this is to watch TV standing up (perhaps doing the ironing which burns about 80 calories an hour) or while on an exercise bike."
in another part of the book, under the heading Stress, Sleep and the Biome, he has eight things on how to get good sleep. Number 6 states "Avoid watching TV, being on your phone or Social Media, in the run-up to bedtime. This is partly because these activities are overly stimulating, but also because the blue light screens typically emit will wake your brain up. Do not, whatever you do, watch TV or use your laptop in bed. Bed should be for sleeping or sex, nothing else."
This is a very informative book and on this thread most of us will be interested because of all the information we have had about the importance of a healthy gut from Chris Woollams of Cancer Active.
I like the quote at the beginning of the book "All disease begins in the gut" Hippocrates of Kos, the father of modern medicine.
Dr Michael Mosley also wrote the best-selling 5:2 fast diet.
That is all for now.
Fond thoughts.
Sylvia xxxx
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Hi Sylvie,
I just finished reading the last page of this post, wow, what a long running post. It's so nice to have sisters that have either gone through this journey or are still going through it.
I was diagnosed in March with TN too. No family history of any kind of cancer, was diagnosed with my early Mammo. Amazing how life gives you surprises in the least expected way. We are planning to go to Dubai for our 25th anniversary and start an addition on our house, all is on hold for now....
Finished my DD AC and have moved on to weekly Taxol after trying DD infusion once, and developing neuropathy and excruciating bone pain, was switched to weekly infusions instead. So far they are a lot more tolerable...
I still have an open wound from my lumpectomy from May. I started to develop seroma after the third week, and by the 4th week, the whole incision opened up. Apparently I was allergic to the biozorb the placed during surgery. (My BC told me only 2% of the patients are allergic to it) So now I've been dealing with an open wound which started off as a 4 inch gaping whole, was placed on a wound vac for a 1 month and 1/2 and now am having dressing changes every other day. So frustrating.....
Angie
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It was uplifting and encouraging to read your post and thank you for sharing that. I have been diagnosed with Triple Negative B.C only in May this year. I start my chemo next Mon, duration approx 5 months then the radiotherapy. Just bought my wig today! Wishing you every success with your continued progress and recovery. Galway 2017
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Hello Angie,
Thank you for your post, which I read with great interest. I am glad that you found this thread and you will find a lot of support here among a very nice group of kind and understanding women.
We all go through some kind of shock when we are first diagnosed and it can all be very frightening and confusing. If there are any questions that you want answered, please just ask and we shall try to answer them.
Your diagnosis is very recent and you are probably still trying to find your way through the maze that is the cancer journey. You will get through this and everything will get better.
It looks as though with your early mammogram that the tumour has been caught while it is still quite small. You must tell yourself that all is going to be fine and that you will get through what can be a long journey. It is quite true that it is amazing how life gives you surprises in the least expected way.
I was sorry to read that you had had problems after your lumpectomy in May. That must have been quite frightening for you as this is normally quite a straightforward procedure. There are always exceptions. Some women do develop these seromas but they do disappear. I was very surprised to read that you were allergic to the biozorb that was placed during surgery. It must have been really awful coping with an open wound and having to have one and a half months of any further treatment and the problem is still ongoing. I do hope all this will clear up very soon.
It must be very difficult going through chemotherapy with all this going on with open wound.
I think we all react differently to chemotherapy treatment. Some of us find the AC treatment more difficult and others find the taxanes more difficult.
I know from my oncologist that taxanes (Taxotere or Taxol) cause neuropathy. I went through EC (epirubicin and cyclophosphamide) every three weeks without too many problems. I had that for three months. I then went on to docetaxel (Taxotere) every three weeks for three months and developed neuropathy in the feet which I still have over twelve years out since diagnosis. It is a form of numbness in the soles of the feet. I have been told there is no cure. All the women who have been able to have Taxol or Taxotere on a weekly basis have said they find it easier to cope with. I was glad to read that you are finding the weekly doses of Taxol more tolerable. Keep up the good work. Remember going through chemotherapy that you need to keep well hydrated, to rest as much as you need and to keep looking forward with strength, determination and optimism.
Tell us a little about yourself if you feel like it and rant as much as you can if you need to.
Sending you most sincere best wishes.
Sylvia xxxx
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Hello Galway2017,
I have just seen your post and just wanted to say that I shall be thinking of you on Monday when you start your chemotherapy. It is the longest part of this cancer journey but you can get through it.
If there is anything you want to know about your chemotherapy, such as what to do and what not to do, please ask. I am not sure what patients are being told about the do's and dont's about chemotherapy.
Sending you very best wishes.
Sylvia xxxx
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Hi Sylviaexmouthuk,
Thank you for your support. I read some of your posts and you have done so much research and so generous in sharing your knowledge. I hope to continue to read more as time goes bye. I have so much to learn and found out by 'Googling' that TNBC is 'different' and it's slowly sinking in. I don't even understand all of my pathology report yet....didn't see anything with the word basal in it. Your garden looks beautiful, thank you for sharing the photos.....I needed that break from reading and I can see it is cared for with love and attention. I got my wig today, I choose a synthetic one as it actually looks better and feels lighter to wear.Thanks again for all of your hard work and generosity. Galway2017
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Hello Sylvia and all of you.
Today I received histochemistry and says that the cancer change, estrogen is now positive to 25%, progesterone and Her2-neu are still negative. I do not know what that means - if you know it please explain to me, thank you.
Sylvia I love the picture of your flowers I didnt saw them befoishre. Pam thanks for your worlds about my english.
Galway welcome to this place, I hope everything will be good with your chemo.
Rhonda, enjoy a lot your trip.
Mary I hope everything is good with you and your family
Abrazos
Marias
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A few more pictures of our trip to Ireland. We are now back home in Vancouver.
This is Slieve League in Donegal - stunning scenery and great hiking!
The sheep fascinated me - they were always a reminder to slow down and just be!!
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Hey Pam,
You are indeed lucky to have your husband who likes to work on cars. When I went to high school many years ago, it was expected that girls would take the Home Economics class, to learn cooking, sewing and managing a house. Boys were urged, but not mandatory, to take Shop, where they learned practical things like doing upkeep on cars. I wish girls would have been pushed more in that direction. I already knew how to cook by that time, and sewing has always been beyond me, my grandmother and aunts attempted to get me into needlework, but I had no talent for it. Now I think it would have been more useful to acquaint us with light plumbing, auto repair, and carpentry.
Larry McMurtry is a great writer, Lonesome Dove is an engrossing read about the still Wild West post-Civil War, the Native Americans have been pushed onto reservations. The characters are some of the best anywhere in fiction, I think. He wrote many more books, and a couple more of them are about the protagonists in Lonesome Dove, but as younger men. "Dead Man's Walk" and "Streets of Laredo."
I am assuming you have read "Gone with the Wind". If you haven't, you must!
As you can tell, I am also a fiction lover, I love to escape into the world of the characters I am reading about. The first time I read Lord of the Rings as a very young person, I lived in Middle-Earth in my head for long periods of time. The movies are excellent too.
I understand completely how you feel about reconstruction. I am the same way with my delay in doing shoulder surgery, and for a while was thinking about breast reconstruction. But I had the same thoughts as you, as in I am feeling okay now, why spend months in healing from surgery when I don't know how much time I have? I realize, too, that nobody really knows how much time they have. It is difficult, it's not a simple process, but many, many women do it. You will decide when time is right. Be sure your radiated skin is in good shape.
I also understand your shoulder pain, I think. When I was doing chemo, I developed great pain in my arm and shoulder. Later it was found I had a partial tear in rotator cuff and a torn bicep, this had never bothered me before, but it has bothered me since. The pain is better, for a while after chemo I couldn't even drive a car, the pain was too intense. Yes, the intense nerve pain after chemo was something nobody, no doctor, warned me about and when I asked, my MO had no idea, she sent me to Lymphedema therapy. The therapist told me on the first day she was sure I didn't have Lymphedema.
I think you are doing great, you are still not a year away from finishing chemo. It takes time to recover, our bodies have been through a lot.
Talk to you soon, love,
Mary
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Wow, beautiful pics Adagio!
Sylvie,
A little about myself, married for 25 years, and have two boys 18, and 19 years old. I work as an Administrative Assistant in a school. It's hard not to think of the what ifs....I try to work on my good days to keep my mind at ease, otherwise it goes in a really dark place.
My neuropathy is gone from the 3 visits I've had with acupuncture. It took almost a week after treatment began to start noticing the difference, but as of today, I have 90% of feeling back in my hands and feet.
I'm nervous that once chemo is finished I won't be able to start rads asap because the wound is still open. I hope and pray that the 1 and 1/2 inch gap will close up before the end of September...
Angie
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Hello Galway2017,
Thank you for your post and for your kind words.
I do hope that your medical team have prepared you properly for beginning your chemotherapy treatment on Monday August 14th. I am not sure which country you are in and different countries can have different ways of dealing with breast cancer patients. All I can do is to tell you what it was like for me. I attended a pre-chemotherapy clinic in which blood pressure, health details etc. were taken. Before that I was told by my oncologist to get a flu injection and a pneumonia injection. Chemotherapy drugs affect your immune system, make it low and weak, and you are vulnerable to infection. I was told to get a dental check up and to get any dental work that was needed done before I started chemotherapy. Patients are advised not to have dental work done during the whole chemotherapy journey, because of infection.
Patients are told to steer clear of crowded places, public transport and people who are infected in any way. Before each session of chemotherapy, I had the district nurse come to my home to take a blood test which was then sent to the hospital dealing with the chemotherapy. At the hospital, the blood test results were there and if anything was not in order, the patient would not get the chemotherapy. The chemotherapy drugs are made up at the hospital pharmacy when the patient has arrived and has the go-ahead for the chemotherapy drugs.
Before all of that I had my weight taken and my height measured, because the dose of the drug is based on this.
Patients were told not to eat raw foods or seafood. Again, this is because of fear of infection.
If that were me, I would not be looking too much on Google. If you want information, ask your oncologist or look up this forum, breastcancer.org, or go to Cancer Active.
You should know what type of breast cancer you have. The most common type is Invasive Ductal Carcinoma (IDC), but there are less common types, such as Lobular Breast Cancer (LBC) or Inflammatory Breast Cancer (IBC). It seems to me that too many patients on the threads are saying "I am TNBC" without any reference to what type of cancer they have. TNBC, triple negative breast cancer, refers to the receptor status of the tumour. It means oestrogen negative, progesterone negative and HER2 negative. The most common receptor status is oestrogen positive, progesterone positive and HER2 negative. You should also know the size of your tumour, and the Stage (1 to 4). With large tumours, chemotherapy is often done before surgery.
I would not worry about not understanding all of your pathology report. If you want to, you can ask your oncologist to explain it to you in simple terms. Back in 2005 when I was diagnosed, no pathology reports were given.
I would not worry about not seeing the word basal. Some TNBCs are basal-type, but I do not think they all are.
During chemotherapy drink plenty of water, rest as much as you feel you need and keep looking forward.
How are your chemotherapy drugs being administered to you? I just had a cannula placed on the back of the hand and the drugs were administered through this via a drip to which you will be hooked up.
There is nothing to fear from all of this.
Like you, I had a synthetic wig which I really liked and felt at ease wearing it.
The plants that I posted are in the grounds of the apartment complex in which I live. I do a lot of gardening there and find it very therapeutic.
I think that is enough information for you to take in today. If there is anything more you think you want to know before Monday, please let us know.
You might like to put your details beneath your profile.
Sending you fond thoughts.
Sylvia xxxx
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Hello adagio,
Thank you for the interesting photographs from your holiday trip and that is a good photograph of you and your husband. How do feel being back in Canada?
Fond thoughts.
Sylvia xxxx
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Hello Marias,
Thank you for your post.
I was interested to read that after your surgery, your report now states that your receptor status has now changed from triple negative and that you are now ER+ 25%. This can happen. You need to ask your oncologist to explain this change to you. All I know from my own oncologist is that she told me that tumours can mutate and that they can change. It looks as though this is what has happened. You need to ask your oncologist how this will affect your treatment. With reference to chemotherapy, the drugs are more or less the same, but with hormonal positive I would have thought in addition you would need to be taking anti-hormonal drugs. The most common are tamoxifen and aromatase inhibitors, such as Arimidex. Do not be afraid to ask your oncologist about this. These drugs are taken orally.
I was glad to know that you enjoyed looking at the photographs of the flowers in the grounds of the apartment complex where I live.
Please let us know how you get on.
Fond thoughts.
Sylvia xxxx
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Hello Galway2017.
The subtipe basal the doctor find this with a exam of immunohistochemistry. This test look for the positive of the tumoral cells of CK 5/6, CK-14 and EGRF. The doctor need to send the tumor to patology asking for this particularity test.
I finally my chemo in 9 of june. I had 4 FAC, and 12 Taxol. The FAC take away my hair. I didnt use wig because was so hot for me.
I drink a lot of water and put all over my body a cream Cetaphil.
I get really tired with the Taxol and get flu. Take care with the food, all you are going to eat need to be good cook and the water need to be really clean too.
I hope everything be good with you,
Abrazos
Marias
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Hello Sylvia
Thanks for your answer. Im goingo tomorrow to the surgeon, I will show him the test. and also my breast before the surgery. I continue with lymphatic drainage and with physiotherapy. My arm and my breast are going very well.
The lymphotherapist is putting tape on the wounds of surgery and drainage to avoid the accumulation of adhesions and fibrosis.
She do a massage over my arm, breast and the the both scar. This tecnique is really new for me. Here I put a link about that
The next tuesday Im going to the oncologist to see what she is going to say about my new treatment. With the test that show my estrogen is now positive to 25%, progesterone and Her2-neu are still negative.
Tomorrow afternoon I'm going to a conference on radiotherapy sessions, I hope to start them next week I still do not have the schedule.
Adagio I love the picture about your trip, are really high on those cliffs and take great care not to slip.
Angie I hope your wound of the surgery heals soon and I hope you take your exams to see how your defenses are before the start of chemotherapy
Abrazos
Marias
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Hi, Sylvia,
I haven't gone away except for a weekend lately, but I am going to Santa Fe, New Mexico for a week to celebrate my birthday there. It is very picturesque there, high desert and mountains, I'm sure it's going to be different than the last time I was there about 30 years ago, but I am looking forward to it. I lived in New Mexico for some years, but in a different area.
It sounds as if your brother's cancer must have been very advanced when he found it. I have wondered too, when they are already in a weakened state, if the drugs they are given to help them are just too much for their systems. I have known a couple of people like that, they were quite ill at diagnosis, went through a couple of chemo sessions and died. My brother-in-law took many different forms of chemo in the 2 1/2 years following diagnosis, he held out high hopes for tumor shrinkage and then surgery. I wonder now if they were just giving him maintenance doses to try and contain the tumor, which worked for a while.
I did hear a radio program the other day about doctors doing research trying to find good diagnostic tests for lung cancer, they almost always need some sort of symptom before they start looking for cancer now. The hope is to find a good dependable screening test that anyone could use. I have heard that the chest x-ray is best when used to find pneumonia, but not lung cancer.
I still haven't heard back about the bone density test, I guess no news is good news. I don't think I want to do the very strong bone-building drugs either, I have heard of the bad side effects. I take calcium-magnesium citrate, but probably not enough. The one I have says to take 6 of them to get 1000 mg, some days I take half but forget about the other half. I do remember to take my Vitamin D3 daily.
The parathyroid and the thyroid seem to be hard things to diagnose, I am assuming you did have the proper test in 2009, I had really not heard of the parathyroid before you talked about it. I have heard that the common thyroid test that is done on Blood Tests isn't really a great test either.
I have to close for now, I will talk to you again soon, love,
Mary
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Sylvia - it is great to be back home in Vancouver except for the poor air quality which we are experiencing. There are hundreds of wild fires burning in the province and we are being affected by the smoke - the sun is just a big ball of red and we cannot see the mountains or the ocean or the downtown buildings. There is an air quality advisory issued telling people with compromised lung function, infants and elderly to stay indoors. Apparently it has been like this for over 10 days - and it is very hot! So it is taking us a while to adjust to the heat after experiencing the fresh air of Ireland. Hopefully it will cool down soon and that we get a bit of rain.
We have 1 more day to recover from our trip, and then we have our son and his family coming to stay with us for 10 days, so our house will be busy and noisy with extra people especially with a 6 year old and a 4 year old.
I have been trying to keep up with the posts - but, it was challenging while I was away. It should be easier for me now that I am home. It is so wonderful to back to my simple eating style with lots of vegetables and salads - I truly missed these while I was away. Thankfully I kept healthy and strong.
Thanks to you and Mary for keeping the thread alive - it is good to see new people tapping into the wealth of information that is contained here.
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Hello Angie,
Thank you for the post and for the details about yourself. It all helps us to get to know one another.
It is good that you are trying to continue with your work when you feel that you can. It is a way of keeping your mind busy on something other than breast cancer. I think we all experience the mind going into dark places where we do not want it to go. Things will get better as time goes on.
I was interested to know that you had gone for acupuncture treatment and that you feel your neuropathy has gone after just three visits. I have never had acupuncture but some of the women on the thread have had it and found it beneficial. I know there are all different opinions on the matter of acupuncture but I was told by my medical team not to have any kind of needles because of the fear of infection. I took oral Iscador (made from mistletoe) for the first five years of my cancer journey and I was told not to have it in injection form.
I developed neuropathy in the soles of the feet while I was having the chemotherapy taxane drug docetaxel (Taxotere). My oncologist told me that it was definitely caused by the Taxotere and that there was no cure. The podiatrist I see told me the same. From time to time I get her to test my feet. The neuropathy is still there. The test is simple. I have to close my eyes and she prods around the feet with a special needle. I feel nothing. My hands were not affected by the Taxotere.
I am sure that once you have finished your chemotherapy treatment you will have the radiotherapy when the time is right. Patients do need time to recover before going on to the next treatment.
I had my chemotherapy treatment before surgery. I started in November 2005 and finished at the end of April 2006. I was given time to recover and had my mastectomy surgery on May 17th 2006. I did not start my radiotherapy until late June and had three weeks of it with boosters, five days a week, Monday to Friday.
For the moment you need to concentrate on your chemotherapy sessions with paclitaxel (Taxol). Take one day at a time.
I do hope that the gap will close as soon as possible but it may be quite slow because your immune system will be weak from the surgery and the chemotherapy.
I have noticed that on your details you have not put what type of breast cancer you have. The most common one is invasive ductal carcinoma (IDC). This is used to describe a cancer of no particular type. You might want to add what type of breast cancer you have.
Sending you best wishes.
Sylvia xxxx
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Hello Mary, Marias and adagio,
I have just read all your posts with great interest. I find it more relaxing to answer them when I have finished all I have to do here, so I shall post later.
Adagio it is great to have you back on the thread.
Best wishes.
Sylvia xxxx
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Hello Marias,
Thank you for your post. You said in your post that you are going to see your breast cancer surgeon tomorrow. Have I missed something? Your details say that you had a lumpectomy in July this year. What are you having surgery for so soon after the one in July?
I think I have misread your meaning. Do you mean that you will see your surgeon, show him your latest test report, and show him a picture of your breast as it was before you had the surgery.
If you want to ask questions and advice about the change in your oestrogen receptor status to ER+ 25%, I would have thought that you needed to talk to your oncologist about this and not the surgeon. It is the oncologist who makes the decisions about how to treat your receptor status.
I was glad to know that you are continuing with your physiotherapy and lymphatic drainage. This can do nothing but good and help to get it back to normal.
Thank you for the clear photograph about what is going on.
I shall look at the massage link that you have sent. I must admit that I have not heard of massaging away a scar, but there are all sorts of things being tried nowadays.
Reading more of your post I can see that you have an appointment next Tuesday to see your oncologist. I can only think that she will put you on anti-oestrogen pills, such as tamoxifen or an aromatase inhibitor, such as Arimidex, or a mixture. Women I know who had hormonal breast cancer were prescribed these for five years, but I think it is now ten years.
Please let us know how you get on.
I can see all this is keeping you very busy but that is a good thing.
Let us know if you get a date fixed for your radiotherapy and how long it is going to last.
I do hope you manage to have a nice weekend and that you can take your mind off breast cancer.
That is all for today.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I was interested to know that you are going to Santa Fe, New Mexico, to celebrate your birthday. I can imagine that it is a very beautiful region to visit.
I still wonder about what happened to my brother. He was not feeling well and had seen his GP, but it looks as though his GP failed to recognise cancer. He had had a scan a few years before, but he was told everything was OK. In September 1995 he was sent to York Hospital and was admitted for a few days. The next thing I remember was the consultant there telling him that they had found shadows on his liver and pancreas and there was not much to be done. He decided to go to a hospice and he died there within three weeks. I spent much of that time with him. He died peacefully but it was such a shock to us all. It all happened from September 18th to his death on October 21st. I think in the hospice they just administered drugs to keep him calm and pain free. I still wonder whether he should have had the chemotherapy treatment. It might have saved him but we know the difficulties of metastases, if that is really what it was. It has always bothered me that the death certificate said that the primary was unknown.
I hope you get your bone density results soon. There is nothing worse than waiting. I think you are making the right decision about not taking bisphosphonates. I am convinced they do not work and that they make the bones worse. They do not build bones and cause old brittle bones. In addition to the calcium and magnesium citrate, I take one tablet a day of strontium citrate and try to keep my bones healthy through the food I eat.
I definitely had the right test in 2009 for my parathyroid problem. The consultant who treated me was the same one I had for my breast cancer. She was the lead consultant in the breast cancer and endocrine clinic. Straight after surgery for the parathyroid my calcium levels normalised.
Like you, I have heard that the blood tests we have for thyroid is not of any use. I seem to think Chris Woollams had something to say about these thyroid tests and how they were not up to par.
In the end, we have to do what we think is best for us. By the way, I was told that an overactive parathyroid causes a patient to be complaining, moans, bones and groans! I did not have any symptoms or feel unwell. However, since the consultant told me that I had had it for some time, and that it definitely preceded the breast cancer, it could be that I was just unaware of anything!!!
That is about all for now and we have quite a few new patients who need our support.
Take care.
Love.
Sylvia xxxx
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Hello adagio,
The fires burning in British Columbia have been on the news here. They looked awful. I can imagine the heat must be quite a shock after the fresh air of Ireland.
You do not have long to recover from your trip before your son and his family arrive.
I am sure you will catch up with the posts on the thread, so just take your time.
I can understand how good you must feel to be back to your simple eating with lots of vegetables and salads. I think it is quite difficult to eat healthily when you are not at home.
We do have quite a few newly diagnosed patients and I do hope they will stay with us. They do need our support.
Take care and do not overdo things.
Love.
Sylvia xxxx
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Hello Sylvie and all of you.!
Today I get up really tired so I did not go to the physioterapist instead I went 20 minutes to the pool, it was wonderful as I stepped out of the pool rested and full of soul. I began to float and to see the birds, the blue sky and the small clouds. It was very relaxing
Today I went to the appointment with the doctor who did the breast surgery on 4 of July. I went to the doctor to review me after a month of the operation. He is the surgeon oncologo that made the operation. He is also a specialist in mastology.
My breast is red around the nipple, but it is not hot or hard, so the doctor thinks it is more an allergic reaction. The site of the puncture of the radioactive material for the location of the ganglia has been put out of hard red skin and the nipple has contracted rather. He sent me an Antihistamine for that.
He also send me to take another ultrasound of my thyroid, since I have two nodules in it. He also send me to the gynecologist because he think my ovaries are producing a lot of estradiol. So maybe is necesary to take them out because of the results of immunohistochemistry. He think is a good little window for the treatment this results.
He think I should take 6 cycles of xeloda and 5 years of letrozole. But the last decision is taken by oncology the next tuesday.
I also went to the conference about radiotherapy sessions. They give some advice about the effects of the radiotherapy. I still dont have date for the first session.
Today I feel happy and hopeful
I admire your dedication and attention to each one of us and especially to the newly diagnosed patients who have arrived at this forum. Im sorry about your worries about your brother . His illnes and death. There are things that for more that you try to understand some answers are not in our hands and perhaps they were not also in their moment in the doctors who treated him. The beauty of your brother's story is that he died in peace and without suffering.
Mary I hope you really enjoy your trip to Mexico for your birthday.
Abrazos
Marias
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Hola Marias,
Thank you for the photograph. It looks so lovely with that swimming pool and the surroundings.
I was sorry to read that you got up feeling tired and so you did not go to the physiotherapist. I am sure that your swim in the pool did you just as much good and probably did more good. I do not know how to swim, but I know that those who can swim tell me that it does them a lot of good. I have a neighbour here who goes swimming in the pool every morning. I can imagine that you felt rested, that is relaxed, but I am not quite sure what you mean by you felt 'full of soul'. Do you mean that you felt uplifted? (sentirse animado por algo). I am trying to imagine you floating in a dreamy way as you looked at the birds, the blue sky and the small clouds. I think Colombia is a country where the scenery is so beautiful that it can make you dream.
I was interested to read that your doctor thinks that the redness around the nipple is an allergic reaction. Someone wrote recently on the thread about an allergic reaction to wound dressing. Let us hope that the antihistamine helps.
I do hope you get good news when you have another ultrasound of your thyroid and that the nodules are nothing to worry about.
I do hope also that you get good news from the gynaecologist. You are going through such a lot that you could do without all this. The ovaries do produce most of our oestrogen so I suppose the gynaecologist will be looking for signs of over production. I do hope you will not have to have your ovaries removed, as this means more surgery from which you will have to recover. I know that some women on the forum have their ovaries removed, but I thought this was mainly because they were young women, had had genetic testing and had been told they had the faulty genes BRCA1 or BRCA2 and these increased the risk of ovarian cancer and so the ovaries were removed to prevent this.
I can understand that your consultant wants you to have five years of letrozole. This is standard treatment for hormonal breast cancer. It is an aromatase inhibitor and the brand name of letrozole is Femara. Aromatase inhibitors are used mainly, so I thought, for post menopausal women. I cannot remember how old you are.
Can you tell me what the six cycles of Xeloda is going to do for you? Xeloda is another brand name and the generic name is capecitabine.
How are you coping with all of this? It seems such a lot to be coping with all at once. In addition you are already being prepared for radiotherapy. I do hope you will get a bit of time to recover from all this.
What tips were you given at the radiotherapy conference for dealing with radiotherapy treatment? It is good to know what patients are being told so that we can keep up-to-date.
Let us know the results of all these tests – ultrasound on the thyroid, testing of the oestrogen production in the ovaries, decision about removing the ovaries, decision about taking Xeloda treatment and the five years taking letrozole, decision about radiotherapy.
I was so happy to read that today you are feeling happy and hopeful.
Many thanks for your kind words about the thread and many thanks, also, for your words of wisdom about my brother. All that means a lot to me.
We are all here for you, Marias.
Afectuosamente
Sylvia xxxx
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Marias
I too agree with Sylvia. What is the goal with giving you xeloda. From what i've read it's quite toxic. Was there residual cancer? will you get it after radiotherapy?
I'm so glad you are happy and hopeful. Adiago such lovely pictures. Thanks for sharing.
Val
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Hi, Marias,
That is a beautiful pool in your picture, and you have such a happy smile! Swimming must be your best medicine.
You have a lot going on right now. I am also wondering about the ovary issue, I don't see that you have had genetic testing, but maybe you did?
As for the Xeloda, I am assuming they are thinking you should be taking that because of the second breast lump, which is E+. ?
I was very glad to read that you are happy and hopeful! You are a very strong woman, Marias, and an inspiration. Love your happy smile!
I am looking forward to going to New Mexico, hopefully it will be dry mountain air there. Here we have been very humid and warm.
Talk to you again soon, love,
Mary
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HI, Galway,
I see you will be starting your chemotherapy soon, followed by radiation. I hope you find it as smooth as possible.
I don't know about the word "basal" in relation to breast cancer, I have seen it in descriptions of skin cancer. I do know when I was diagnosed with TNBC, the surgeon was first going to do a lumpectomy. But the radiologist said my tumor had "fingers". He held out his hand in front of me and spread his fingers......after that they did a mastectomy to be sure of getting it all out, since I have (had) small breasts.
When I was doing chemo, I had 2 wigs. They were completely different. One was fairly long, and strawberry blonde. The other was short and very blonde. I enjoyed looking different, my husband far preferred the long one!
Will be hearing from you again soon, I hope! Mary
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HI, Sylvia,
It has been another very busy week, I am looking more and more forward to leaving here for a little while.
A friend of mine has been hospitalized for the last week, it has been quite hard on her. She apparently caught some kind of virus a week ago, and had diarrhea and vomiting to the extent that she got extremely dehydrated. She is 73, and not very strong to begin with. She couldn't walk and was unable to use her phone, and was disoriented on top of it all. Several of us phoned her over the weekend, but when she didn't answer we assumed she was out with another friend, which she often was on a weekend. Her brother found her on Monday and took her to Emergency, and she was declared very dehydrated, given a bag of fluids and sent home. She was home for a day, I took her some food, and she seemed better; but later that night her brother took her back to Emergency, they suspected a heart attack, and she was admitted for heart tests of all kinds. To make a long story short, she did not have a heart attack. She was diagnosed with the beginning stages of congestive heart disease, and kidney disease. I spent a quite a bit of time in the hospital, and with her, out of concern, but have now removed myself from being involved here, because it seems the family and she would rather not know what is really going on. I am trying to be smarter with my avoidance of situations that I have no control over that just cause me stress, and am going to take a break from it.
It has been a strange week all around. My brother was quite worried, he was waiting for results of a test to see if he had esphageal cancer, which is a very bad one to have. It came back that he did not, thank God, but he has bad acid reflux. They upped his medication and he is feeling much better.
A good friend is awaiting results for a test on fluid in her uterus, she is quite worried too about the possiblity of uterine cancer. You can see what has been absorbing my mind this week! Hoping everyone has good results and they can breathe easier!
Probably many of us have thyroid problems of varying degrees, it was so good that you and your doctors delved into the issue of your parathyroid to your benefit. Moans, bones and groans fit a lot of people that I know, including me at times!
Chris Woollams must have taken a vacation this summer, he will probably get back soon, and then there will be a deluge of posts.
Going to close for now, love,
Mary
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