Calling all triple negative breast cancer patients in the UK
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Hello Marias,
Thank you for your latest post. I was so sorry to read that your pathology report shows that the nodules in the lung are triple negative.
I think we can all understand how low in spirits you must be feeling.
Try to keep your spirits up and ask your medical team what the treatment for this will be. Hang on to the fact that there is usually some kind of treatment.
I was re-reading the details of your treatment and it reminded me that you had invasive lobular breast cancer and not the most common invasive ductal carcinoma. What were you told about this?
I also noticed from your details that when first diagnosed you just had chemotherapy. This seems to me unusual. Did you have any surgery?
I then noticed that in 2017 you had surgery, a lumpectomy, and radiotherapy but no chemotherapy.
There is no mention anywhere of positive lymph nodes.
Please let us know what treatment you will get.
What happened about your thyroid problems? Was all that resolved?
I am thinking of you and please feel free to come and talk to us here. Do not keep all your feelings within yourself.
Sending you all my love and best wishes. I am putting this into Spanish to help you.
Sylvia xxxx
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Hola marias
Gracias por tu último post. Lamenté mucho leer que su informe de patología muestra que los nódulos en el pulmón son triple negativos.
Creo que todos podemos entender cuán bajo en espíritu deben sentirse.
Trate de mantenerse animada y pregúntele a su equipo médico cuál será el tratamiento para esto. Aferrarse al hecho de que generalmente hay algún tipo de tratamiento.
Estaba releyendo los detalles de su tratamiento y me recordó que tenía cáncer de mama lobular invasivo y no el carcinoma ductal invasivo más común. ¿Qué te dijeron acerca de esto?
También noté por sus detalles que cuando se le diagnosticó por primera vez, acaba de recibir quimioterapia. Esto me parece inusual. ¿Tuviste alguna cirugía?
Entonces me di cuenta de que en 2017 se sometió a una cirugía, una lumpectomía y radioterapia, pero no quimioterapia.
No se menciona en ningún lugar los ganglios linfáticos positivos.
Por favor, háganos saber qué tratamiento recibirá.
¿Qué pasó con tus problemas de tiroides? Fue todo lo resuelto?
Estoy pensando en ti y por favor siéntete libre de venir y hablar con nosotros aquí. No mantengas todos tus sentimientos dentro de ti.
Enviándote todo mi amor y mis mejores deseos.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
I am like you and I could not have gone through my treatment without researching and checking everything. As you say, we are all different. The other day I was counting up the ten people in close proximity to me here and thinking about their attitude to their breast cancer diagnosis. I think most of them did not want to know. They just went through their treatment. Of the ten, I seem to be the only one with triple negative breast cancer, though I think one of the ten probably had it because she did not have anti-hormonal medication. She was also in her late twenties and young for breast cancer. That was over thirty years ago so she has done well. She had a lumpectomy and radiotherapy inserted into the breast.
I suppose for some not knowing anything gives you less anxiety. I think that knowledge is power but that is my own personal opinion.
It sounds as though you are having a nightmare with your roof repairs. I did not know that there was a difference with asbestos.
I hope you manage to read the Chris Woollams article on this cure for cancer from Israel.
It is a nice sunny day here in Exmouth as we head into another Bank Holiday weekend and half term. It will get so busy here.
I was listening to the news this morning and it was all about Boris Johnson being way ahead as the person most likely to replace Theresa May. I think this will be an utter disaster. I cannot think of anyone in the Conservative party who looks like a leader. I think we have has enough of toffs. It is the duty of governments to look after the people of their country and make sure everybody has a fair and happy life. Cutting everything makes for utter misery. Theresa May is supposed to announce the date of her departure but I think she will stay on for Donald Trump's State visit. I think it is a bit much having banquets when we have starving people, but it is the usual 'let them eat cake' syndrome.
I do hope you manage to have a nice Bank Holiday.
Love.
Sylvia xxxx
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Hello SusieW5, sylviaexmou… and Rosiecat,
I searched online and my doctor confirmed it's correct:
TC is the name of a combination of chemotherapy drugs used to treat breast cancer. It is made up of the drugs:
- docetaxel (also called Taxotere)
- cyclophosphamide
I don't know whether these are the general or specific names for the drugs.
As for boosters, it is to boost my white blood cells. Information shoes that cyclophosphamide's side effect is decrease the white blood cells so I think that's why boosters will be given.
I'm still recovering from my lumpectomy. My skin healing is often very slow, and although it's already two weeks my breast wound is still not heal yet. Doctor said it could also be due to IORT. The armpit heals better. I can't use much strength yet, both areas will pain. Guess this is normal?
I have done CT Scan two days ago and since then feeling very tired. Woke up with headaches for two consecutive days. Good thing is the CT scan report is good, nothing to worry about.
My first chemotherapy is scheduled on 10th June. I have just cut short my hair (easy for me to wash too now that I'm avoiding shampoo on my wound) and preparing my body for the chemo (need to consume more nutritious food to get stronger).
Thank you all for the concern, glad that I have a place to talk especially to people who understands.. (sometimes people just don't understand why i decided to go for chemo, if it's not because of triple negative i might choose not to...)
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Hello viewfinder,
Thank you for your latest post. I was interested to know that you are busy with various groups and I am sure you are doing a good job.
I do understand that people on the thread need a break from focussing on their breast cancer.
We do need people posting on the various threads because without posts there will be no forum and perhaps people will just read all information listed under the topics put out by breastcancer.org.
I discovered this forum quite by accident when I was looking for information about an overactive parathyroid in 2009 when I was facing surgery for this. I became very friendly with a poster who was in the same situation and we corresponded in the forum Not diagnosed with metastases but concerned, and the thread within it High calcium and that other poster started a thread in the forum IDC breast cancer and the thread Parathyroid disease and breast cancer. I was past my breast cancer journey 2005/6 and going through regular check ups. It was in 2009 that I also started posting in Calling all TNs. Inspired by Titan, and thinking we were in the dark ages here in the UK, I started my own thread, initially for Brits. It soon became international.
On September 12th this year I shall have been doing the thread for nine years and I have met some truly interesting and wonderful people.
It has taken up a lot of my time but I have no regrets.
I was interested to read about your sister. I was always surprised that the powers-that-be were thinking of a third lumpectomy. Here in the UK, unless it has changed, was to go for a mastectomy if two lumpectomies were shown to not be satisfactory. Let us hope that with a double mastectomy, with your sister being BRCA1 that she will have more peace of mind. Over the years I have read that whether you have a mastectomy or a lumpectomy makes no difference to survival. Who knows?
How are you keeping?
There is lots going on here in the UK. Theresa May has just announced her resignation as of June 7th. We have wasted three whole years on trying to get the Brexit referendum passed. In the meantime everything else has been neglected. I just hope we do not get Boris Johnson as Prime Minister. We need a General Election.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Cocolala,
It sounds as if your 'boosters' are a drug called Filgrastim. I had this after each cycle of chemo to maintain my immune system, which it did very well.
Good luck with your cycles.
Susie
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Hi, all
This happened in my area Wednesday night about midnight. This is the city where I shop, have doctor appointments, friends and so on. This was a major tornado hit, with top winds of 160 mph.
https://fox2now.com/2019/05/23/photos-aerial-photos-show-scale-of-jefferson-city-tornado-damage/
Mary
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Hi, Sylvia
You know me too well! I did indeed hurt my "good" shoulder while trying to clean up my yard at the farm after a storm came through, this was last Saturday night and it caused much tree damage and minor building damage. Monday night I was sitting with ice packs on both shoulders and praying I had not hurt it too bad. The next day I did nothing but rest. I think I finally learned my lesson, now that the "good" shoulder feels better again. I will try to ignore the shabby and unkempt things around the yards until someone is here to help. I guess I just strained my muscle, and am so thankful it wasn't worse.
Wednesday night is when the big tornado hit, where I am was okay, and I didn't know it happened till next morning. I think we will all pay more attention to the tornado warnings we get, especially this time of year. We have had such a stormy spring, especially the last week, and we have more in the forecast starting tonight again.
I have therapy this morning. The hospital where I have therapy was not hit, although it is very close to the path of destruction, a matter of a couple of blocks.
I will talk to you again soon, love
Mary
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Hi Sylvia,
I'm doing well, feel better than I have in a long time...though I had a very terrible, itchy rash for more than two weeks: two doctors visits, two shots, prednisone and antihistamine. It's almost gone. I see an allergist next week. The only thing I had different is that my daughter made me a smoothie that contained matcha (green tea) powder, which may have caused the allergic reaction.
I hope things go well in your country. I've read the headlines about British Prime Minister Theresa May resigning in June. The governments of the world are such a mess!
From everything I've read, if you have the BRCA1 gene mutation, you should have a double mastectomy. With the chance of cancer coming back in the future, why go through all that treatment again if it can be avoided!?
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hey guys I was hoping someone could help me did anyone have egfr positve in their pathology and what does it mean for us
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Sylvia, our adoption through humane shelter fell through, but we found a young cat through a local animal rescue; she is 10 months old, a tortoiseshell, and chose us as mych as we chose her. We met her yesterday and brought her home
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Hello Dee1987,
I was interested in your post. Apparently egfr positive refers to HER1. If you want more information have a look at this link:
https://www.breastcancer.org/symptoms/diagnosis/egfr
You will see that this link refers to breastcancer.org.
This is something you should be talking about with your oncologist. Anything in your pathology report that you do not understand you should ask for an explanation from your oncologist.
I hope this helps.
How are you doing as you go through chemo?
If there is anything else we can help you with, please ask.
Best wishes
Sylvia xx
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Hello viewfinder,
I was glad to know you have been feeling better than in a long time. I do hope your itchy rash clears up and that you can get more information from an allergist. I would not have thought that matcha green tea powder would have done any harm, but one never knows. I have had the matcha green tea powder in the past but not very often. I remember that it was quite expensive. I do regularly drink Pukka matcha green tea bags but have not had any problems.
I do hope your sister will do well.
I have no idea what is going to happen here in the UK. I suppose we shall be in for weeks of squabbling with all those wanting to be the next leader of the Conservative party but it is all out of personal ambition. I cannot see any of them being any good and I certainly cannot see how any of them will solve Brexit. Most of the parliament and the civil service are Remainers and are in conflict with the population in general.
Hope you have a good weekend.
Love.
Sylvia xxxx
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Hello Mary,
I do hope you are having a weekend free of chores. It sounds as though you have a lot of hard work to do and that it would be good for you to have someone to help you.
It sounds as though you have been having some wild weather.
I was glad to know that the hospital that you attend for therapy was not hit by the tornado.
Try to have a good weekend doing something that does not require too much effort. If you can have a listen to Keep it Country (soon changing its name to Spotlight). On Sunday at 8 pm my time here they have Down Memory Lane (music of the 50s, 60s and 70s). It is very relaxing and enjoyable. They are introducing more and more programmes so you need to have a look at their schedule on their website (keepitcountry.com). They also have Pathe News from the past which is interesting.
That is about all for now.
Love.
Sylvia xxxx
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mine is a long story but I was operated in a different place to where I received first half of my treatment(they reduced my dosages which I wasn’t happy about and so I changed hospitals). I was operated first so have no idea about my response to chemo and I’m also brca1 positive so I’ve had a ctdna test done and next week should be having a chemo sensitivity test. I was informed that there was info missing from my path report so I emailed the hospital and received that info without an explanation and I don’t see my oncologist till next week
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Hi Gill,
Have you got your one-year mammogram coming up? I seem to remember your being diagnosed last summer while I was in the middle of chemo.
Susie xx
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Hi Susie,
Neither a mammogram on the right side or an ultra sound on the mastectomy side seems to be planned at all according to my oncology nurse. I have an appointment with my original breast surgeon, (not the surgeon who did the mastectomy), in September. I'll ask him, but it's likely that I'll need to make a nuisance of myself again. In the meantime, I have an appointment with my GP on June 10th, she'll let me know what the aftercare should be.
Gill X
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Hi, Dee1987
I read your posts and the link Sylvia posted, and it sounds as if the EGFR number may help determine the medication and/or dosing you may receive to treat the cancer. Other than that, hopefully you will find out the details of your case at your next oncologist visit. I'm sure your head is swimming with all these new terms, but it will start to make more sense. I wish you the very best of luck as you move forward.
Mary
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hello everyone I'm super debastada. Sylvia diagnosed me triple-negative cancer from a trucut that I had in the right breast in November 2016. I started treatment FAC-T for negative breast cancer. On July 4 they did a quadractomy and removed 19 lymph nodes where only 1 result was compromised. the pathology of this tumor showed a positive so they said that it had already mutated to hormonal. in september, they overrode the ovaries.me.the.removed as a way.to prevent cancer in.they .. in October of 2017 I initiated 21 rounds of radiotherapy in the right breast. in november of.2017 the thyroid was drained and central emptying left 3 nodes with metastasis of thyroid cancer.papillary. for breast cancer I have been taking letrozole 2.5 for thyroid cancer in February 2018 I had a iodotherapy.
Abrazos
Marías
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Hola Marias
I just came here and saw this post. I knew you had a lot happen to you over the last few years, and you have it all laid out.
I read today that your biopsy of breast in November 2016 showed TNBC, but later after FAC-T chemo you had a partial mastectomy and the biopsy of 1 of 19 lymph nodes removed showed hormone positive. Two months later you had ovaries removed. In October 2017 you started radiation on the right breast, 21 rounds. In November your thyroid was found to have 3 nodes with papillary metastasis. You have been taking letrozole 2.5 for Breast Cancer. In February 2018 you had radioactive iodine therapy.
Your most recent posts say that you have metastases in the lung.
I can understand that you are devastated. My heart goes out to you, and this is so much for one person to deal with. How are you feeling physically? I hope you are in the company of your dear brother and good friends to help you with support.
Marias, I think of you often and I will pray as well for better news.
Talk soon, love,
Mary
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HI, Sylvia
It was so eye-opening to see all that Marias has been through, my heart goes out to her.
I see in the news that your election has results: Labour and Conservative got a drubbing and a newly-formed Brexit Party led by Nigel Farage has triumphed. But also an anti-Brexit party led by pro-European liberal Democrats has done very well. I do not pretend to understand your country's politics, parties seem to come and go quite quickly. Will these two parties just butt heads for another 3 years? Do these parties only concern themself with bringing about Brexit or fighting against Brexit, or will they have other powers as well? Does this affect the election/appointment of a new Prime Minister?
In your last post you mentioned that you think I have too much to do. I agree, being largely limited to the use of mainly my left arm for the last 3 months has put me in a place where I am constantly running up against things I cannot manage. I do have help, but not at my instant beck-and-call. I am trying through this surgery and its' looooong therapy recovery to get back to a place where I can handle more of these things myself, while still having help for the bigger things.
I looked up keepitcountry.com and find that this is the only Country Music channel in the UK? Is that right? Very interesting, I looked it up on Facebook and am not having much luck actually hearing it. But then we have lots of radio and TV stations that are dedicated to Country Music as well as Classic Rock and Classic Vinyl, and music from past decades. I play it in my car often and my house sometimes, depending on what I am doing.
Our weather has quieted, not sure yet what today will bring. Today is the Holiday we here in US dedicate to those who have served and died in active military service.
Talk to you later,
Love, Mary
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Hi, Gill
I am curious to see what your aftercare is, it is possible for the BC to morph into a different type, so I would think an annual mammogram would be ordered. That is the only aftercare I have; I see the oncologist once a year but the visit consists of her asking me how I feel, and she palpates my breast, surgery site and underarms.
That being said, my initial tumor was not found by mammogram but by myself, so it's an uncertain thing any way you look at it.
Glad you are so much better after all your difficulties with chemo!
Love, Mary
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Hi, nancy53
Congratulations on the adoption of your new friend the tortoiseshell calico cat!
I saw her pic on another thread, such a beautiful cat, she looks like she will have a pampered life and enjoys the window.
Talk later, love
Mary
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Hello Marias,
I've just read your post. You have been through so much in such a short time. I'm so sorry - I think most of us would also be devastated in your shoes.
It is likely that treatment will be offered for your lung metastasis in the near future. I wonder if you will feel a little more positive when this treatment is underway. It must be so difficult waiting for your doctors to explain what your options are. Do you have a specialist breast cancer nurse you could contact?
This is a very supportive site, keep on letting us know what's happening.
Marias, Iike Mary and I'm sure many other's I'm also praying for you and keeping you in my thoughts.
Love,
Gill X
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Hello Marias,
I can understand how devastated you must be with all that you have been through.
Thank you for giving us all the details of your whole treatment since 2016. Try to remain optimistic and tell yourself you will face whatever treatment are given and that you will come through this ordeal.
You have mentioned nodules that are in the lungs. Have these nodules spread from the breast cancer you have or have they spread from the thyroid?
Try to push to get a treatment programme as quickly as possible.
All of us in this group are thinking of you and sending you all our love, support and admiration of all your courage. Keep in close touch.
Abrazos.
Sylvia xxxx
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Hello Mary,
I agree with you about Marias and my heart goes out to her as well.
It is true that Labour and Conservative parties have been given the hiding they deserved. You have to remember that these elections are European elections to elect MEPs from the 28 member countries of the European Union and they will take their seats in the European Parliament. They will not have seats in the UK Parliament. UK MPs are voted in at a General Election. When the UK parliament comes back from their week's holiday, they will debate Brexit again, as well as other matters pertaining to the UK.
The European Parliament with its new intake of MEPs will return in July. The new MEPs will choose the bureaucrats to be in charge of the newly formed parliament. They deal with laws that pertain to all 28 countries.
The race for a new leader of the Conservative Party has nothing to do with the European Parliament. There are about ten 'wannabe' leaders and thus Prime Minister, since the Conservatives are still the Government, but without a majority. I would not give you tuppence for any of them. The big quarrel now will be about leaving with no deal, leaving with the European deal (so called May's deal) or having another referendum, which they are calling a people's vote (LOL!). I think they need to honour the result of the first referendum first and at the latest October 31st, the EU's deadline. If they cannot deliver Brexit quickly now, then they need to call a General Election. Confused? That is the name of the game! Is it any wonder we are thought of as a batty nation. We need to stop treating Scotland and Wales like colonies and we need to give back Northern Ireland to the Irish, from whom we stole it.
The Keep it Country channel is the only country music channel. It has a lot of Irish music but what I like above all is the Down Memory Lane programmes (music of the 50s, 60s and 70s). Recently they have introduced top hits of different years and Pathe News programmes about different years. Recently I have seen 1960 and 1961. Apparently the title of the channel is being changed to Spotlight.
Do you ever watch Talking Pictures? It has a lot of old films on it.
The weather is quite mild here in Exmouth but we are in need of a lot of rain. Until that happens I am reluctant to get more summer plants for the grounds because it is such a chore to water them, dragging hose pipes around.
That is about all for now. Keep well.
Love.
Sylvia xxxx
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Hello Mary, again,
I forgot to say that it is a Bank Holiday here today, Spring Holiday. I shall be glad when the month of May is out. There has been too much to do in our complex this month.
All the very best.
Love.
Sylvia xxxx
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Hi Mary,
I'm also curious to know what my aftercare will be! I shall keep on pushing if it turns out to be inadequate. It wasn't until I discovered this thread that I realised breast cancer could reinvent itself and become a different type, it's too clever by half. Unlike you, I won't be seeing my oncologist again, only the breast surgeon. I expect it's a case of not enough staff, time or money.
Hope you're recovering from your spate of overdoing things. Difficult to rest at this time of year when so much needs doing outside, especially when you have so much land to cope with.
You've certainly had some frightening weather down your way. Do you think tornadoes and storms, are becoming more common in the States? I was wondering if global warming was having an impact.
Take good care of your shoulder (s).
Love,
Gill X
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Hello Sylvia,
We were very fortunate to have only white asbestos. It was much less expensive to remove than either the brown or blue. Blue asbestos is deadly. The teams that remove it wear breathing apparatus and only do a small amount at a time. We would have had to stay in a hotel while it was cleared
Well both the Tories and Labour certainly deserved what they got. Having said that, I should also say that I find Nigel Farrage a thoroughly objectionable man. He's now talking about standing in the next General Election. There's absolutely no one with leadership qualities in the main parties. It seems to me that very few MPs have any real compassion for the many desperate and disenfranchised people in this country either. I dread to think what will happen if Boris Johnson wins the leadership contest. He was a disaster as Foreign Secretary and Lord Mayor of London. We still don't know what happened to the £43M of taxpayers money after the garden bridge debacle. Another overprivileged Tory who has absolutely no idea how the majority of ordinary people live or the effect of continuing cuts to welfare, education, health and so on. We are a wealthy country though you would never know it.
It's been raining for much of the day here and looks set to continue for the next few days. It does mean that the plants are well watered. I do sympathise with you having to drag a hosepipe around now that Exmouth is so dry. I hadn't realised that part of yours and Raymond's role as directors of the complex, involved organising the planting of Summer bedding in addition to keeping everything else running smoothly.
Hope you're keeping some time aside to relax.
Love,
Gill X
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hi all, I see lots of you have done the gene test, the BRCA... is it a must for triple negative? I have not done that abs oncologist did not mention about it.
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