Calling all triple negative breast cancer patients in the UK
Comments
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hi how are you going .. yesterday I got two nodules from the right lung with a surgery called thoracoscopy. They opened me under the armpit to the side of the right breast. I put on a drain that is very painful and kept it with many painkillers. I already had it removed and I go to the house with respiratory therapy and a next appointment with the surgeon. For Friday, May 17
Abrazos
Marias
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Hello Susie,
I do agree that VITA is a bit simplistic but we have to remember it is trying to convey certain information in easy to understand terms so that everyone can understand certain basic things. I found over the years that icon magazine suited me more. Whatever we read ultimately we have to make up our own minds about what we believe and what we want to do.
I understand what you mean about that link. I did not like it at all and do not think that newly diagnosed patients would benefit from it. Like you, I did not find my cancer journey traumatic but I know that many patients do suffer through it. I think it is most important to emphasise that you can get through your cancer journey.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your post. You always have something interesting to say. It is such a pity that your daughter is thinking of an alternative career but I do understand the pressure that she must be under. I can only blame all the problems with the state of all parts of the NHS on austerity and it is not just the health service. Things are going badly wrong in the schools. I shudder to think where it is all going.
What do you think your daughter might want to do as a different career?
I do tend to stay with bc.org as it covers so much of everything to do with breast cancer. I regularly read through some of the other threads to do with triple negative breast cancer, and I regularly read through the Active Topics section. As you know, I also receive emails from Chris Woollams of Cancer Active and always learn a lot. There is so much information from his emails and sometimes there is too much, but I prefer it like that. He has extended the Cancer Active website and deals with all aspects of health. Most of all, I look for serious books to read on cancer. I tend to avoid the internet and consult medical books instead.
I do hope you enjoy VITA magazine. It does have some useful tips and it does have questions from readers and answers.
I was so glad to know that you are much less tired and I do hope that the side effects of C.difficile will gradually improve.
You will be glad to see that Marias has just popped in. she has had such a difficult time. Perhaps Helenlouise will pop in as well. As you say, there are several members of the thread going through a difficult time.
Did you read the post from Madeline? She is also having a very difficult time and has been through so much. She definitely needs our support and comfort.
That is about all for this evening. I am hoping the weather will be dry in Exmouth this weekend.
Love.
Sylvia xxxx
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Hello Marias,
Thank you for popping in and for asking how we are doing. How are you doing?
I can see that you are still having a difficult time. Your surgery, a thoracoscopy, does not sound very pleasant. It is good that two nodules have been removed from your right lung.
I can understand about the drain and how painful it must have been and that you needed painkillers.
I was glad to read that you have already had the drain removed. That must have been a great relief.
Are you back at home now? What exactly is respiratory therapy? Is this doing breathing exercises?
I shall be thinking of you on May 17th when you have your next appointment with the surgeon. I hope you have good news.
Sending you love and best wishes.
Abrazos.
Sylvia xxxx
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Hello Sylvia,
I worry that this 'True Cancer' thing will result in some women being scared into refusing treatment, and dying when they could have gone on to lead a full life for many years.
Yes, I agree that Vita has to phrase everything in a way that everyone can understand, including women who don't have English as their first language. It just makes it wearisome reading for me.
Susie xx
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Hi, Sylvia, Susie and Gill
I am learning a lot about NHS from reading your posts, I think many of our politicians want us to go in the same direction as this, right now we have a hodge-podge of private insurance companies and government-run systems. I have read that many hospitals here are closing because of the large influx of people into their emergency rooms; once there, patients must be treated, with or without insurance. We citizens are required to have some form of insurance, if one is not a citizen anything goes.
We are having a crazy wet spring, farmers are worried about getting in crops and hay fields becoming ready to cut and bale. Right now, it's almost always cool and rainy. This last week I called for a gas delivery, soon a very large fuel truck drove into my yard and got stuck, and had to be dragged out diagonally across my lawn leaving some very deep ruts behind. The next day I was trying to get myself and my pickup truck out of a tight muddy place and managed to scrape a metal fencepost badly enough to cause some quite expensive damage.
Thanks for telling me about the use of Zometa as it was explained to you. I wonder what has happened with the TNBC vaccine I was hearing about a while ago? I think I will have to check that out. I have been in a more, shall we say, orthopedic state of mind lately. Improvement for my shoulder is quite gradual, when I try to push the prescribed exercises harder than recommended, I pay for it with extra pain. It is hard to be patient this time of year, when things are growing and needing lots of attention.
I did look at the video Susie posted on True Cancer. and I must say I do sympathize with this lady and all others with a cancer diagnosis. I don't think this would put people off chemo and radiation treatment, everyone I know has heard so much about the horrors of a cancer diagnosis that it comes as no surprise the treatment might be difficult. When the whole picture is explained to a patient, I would say in most cases the patient will choose the orthodox treatment. Some people, like Susie and Sylvia, had relatively side-effect free courses of treatment. Some others of us did not have the same benign reaction to the drugs, and struggled through the whole thing. Hopefully the oncologists are explaining this to patients, that they will not necessarily have a bad time, but it is possible to have unpleasant side effects.
I hope everyone has a nice (maybe dry?) weekend, talk to you soon.
Love, Mary
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Hello everyone,
We are currently having a weekend away in a country town called Rutherglen in Victoria visiting the winery where we were married 30 years ago. Beautiful spot. Love spending time with my husband. He really is a wonderful partner. We have taken time in the last few days to reflected on just how fortunate we have been during our lives.
Unfortunately my wound has not healed and still exuding serum. The surgeon I saw last week (colleague of my surgeon who was away), took swab then squeezed out a fair bit of fluid. He said whilst the flesh is separated by fluid it won’t heal, which makes sense. So I need to get the fluid out manually. This process has made the chest area sore and the skin around is irritated from applying and removing dressings frequently. I am worried that about traveling abroad with an open wound and is it ever going to heal
. I think the surgical biopsy was a mistake but at least I have TN status for the recurrence, which set the treatment pathway. Retrospectively I wonder if a second core biopsy would have provided an adequate sample and avoided this wound. Hindsight..... Needless to say twice irradiated skin and flesh is compromised and should be treated with extreme care.
Very interesting information on zometa. Thank you for sharing.
Wishing those who are battling a good fight and all of you mums - happy Mother’s Day xx
Best wishes all round - Helen xx
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Hi, helenlouise
I am so happy for you that you could make a trip to Rutherglen. I am fascinated by Australia so I looked it up. I saw that it is north of Wangaratta and west of Wodonga, I loved the alliteration of that. Sounds like lovely wine country and it sounds like you and your husband are making the most of this opportunity.
Have you found anything else out about Morpheus trial?
I'm sorry about the skin issues, sounds like the combination of radiation x2, then seroma development, and then biopsy was just too much. I do hope this clears up soon. I did not have any radiation, but did have a seroma that came back a few times, the surgeon would draw out the fluid with a needle. Finally it did heal down with the help of some tight bandaging. I can see that skin that has had radiation, and problems healing because of seroma and then biopsy, would be stubborn to heal.
Have a great time, and I will talk to you again soon.
Love, Mary
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Hola, Marias
I see that you had the nodules removed, and I assume they are being examined now. On the 17th you will see your surgeon and I pray you will get good news. You have had a lot of problems and here is yet another, I trust you will overcome this too.
I am so glad the drains are out, I also thought having the drains was a very uncomfortable experience but necessary.
Glad you are home, and I will be thinking of you on the 17th, Thursday.
Dios te bendega, dear Marias
Love, Mary
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Hello Susie,
I do agree with what you said about True Cancer. I do worry as well that it will frighten women into refusing treatment and dying when they could have got through treatment and gone on to lead full and happy lives. We must keep emphasising that patients can get through their treatment.
I do hope you have had a good weekend.
Love.
Sylvia xxxx
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Mary says that the oncologists will explain it all but they are so pressed for time in the UK, that they often don't. I feel that one thing they don't do, which they should, is say right away that the survival rate for BC is very high. Some of them just seem to assume that the patient knows this whereas, in truth, most people don't want to think about cancer until it happens and then they hear that word and their mind goes numb.
Good weekend. Theatre on Saturday -- the Last Temptation of Boris Johnson: funny, if not exactly subtle -- and book club this afternoon.
Tomorrow I'm seeing my oncologist about the Add Aspirin trial. Can't help thinking that this will consist of her asking how I am and me saying 'Fine'.
Susie
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Hello Mary,
Thank you for your post. It seems as though the health services in both countries are having problems and it is largely due to over-demand and not enough staff.
It does seem as though the weather goes from one extreme to the other around the world. Here the weather goes up and down. It can be sunny and then suddenly it absolutely pours down. Here in our complex we should be putting in some summer plants, but I keep delaying because about this time last year we planted begonias and geraniums and then we had a drought.
I do feel for you about your incident with your pickup truck and the mud causing you to scrape a metal fence post, badly enough to cause some quite expensive damage.
I do have doubts about a vaccine for TNBC because it is all so complicated and different.
I do hope that you had a good weekend and that the coming week will be good to you.
Here in the UK, having gone through local elections we are now preparing to EU elections, on May 23rd, even though the MEPs may never take their seats. Brexit drones on and Theresa May may be putting the EU proposal (which she calls her deal) to Parliament for the fourth time.
Nigel Farage has formed a new party, called the Brexit Party.
That is about all for now. I think of you a lot.
Love.
Sylvia xxxx
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Hello Helenlouise,
It was nice to hear from you and I was glad to read that you and your husband had gone away for a weekend in a country town called Rutherglen. It all sounded very romantic.
I was sorry to read that your wound has not healed and is still exuding serum. I do hope it will stop soon so that the wound will heal and that you can go off on your holiday with peace of mind.
Please keep in close touch and let us know when your wound heals.
Sending you love and best wishes.
Sylvia xxxx
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Hello Viewfinder,
I have missed you on the thread lately and I am wondering if all is well with you and of course also with your sister. I seem to remember that you said you were going to be busy but I hope you will pop in to let us know all is well.
Hello Flora,
I have also missed you and I do hope all is well with you, your family and your mother.
Hello adagio and 53Nancy,
I do hope all is well with both of you. I expect adagio that you are busy looking after your husband and perhaps with family visits. I understand that it is Mothers' Day today so I hope you are having a happy family time.
Hello Kath,
Are you still busy studying? Happy Mothers' Day.
Hello Jags56,
How are you getting on? Are you doing anything special?
Hello Val,
What are you doing these days?
Hello Marias,
Please keep in touch and the same goes for Hanieh.
Hello Cocooncat in Australia,
I think that perhaps you have decided to leave us but I do hope all is well with you.
Love to all.
Sylvia xxxx
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Hello all
Sylvia it's nice of you to remember all of us . Well I am very busy with renovation of my house. It has been over a month now and will take another two or three months . At least it is keeping me busy. It's extremely hot here and temperature is rising .
Mary I hope you are doing well now .
We had our election yesterday and it was nice to go and vote . I am not very interested in politics though my husband is.
I wish well for those who are going through treatment.
Love
Jags
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Hi Jags
I have mixed feelings about renovation, love the results but hate the process. I hope it is very nice when finished and your life is not too disrupted.
It sounds like you are in summer, I don't like the very high temps, right now here is perfect. But it won't last, the hot and steamy weather is coming.
I am getting very tired of my shoulder rehab process, it is very slow and there are so many things I want to do. I look around and see messes everywhere that I can't really clean up yet. But there is nothing I can do about much of that now, still can't put any weight or stress on it. I will be at 12 weeks post-op before long, and then things will change, I think. At 12 weeks docs consider the tendon healed to the bone thoroughly. Thanks for asking, I will talk to you again soon.
Love, Mary
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Hello everyone. I hope this finds you all having a good day. I have had you in my thoughts so much this last while, when life has been taken up with running from one appointment to another, mostly for my husband, who finally had a sleep clinic for sleep apnoea in February and got his machine in March after six years of waiting. In April, he finally saw an ear nose and throat specialist, who told him the only thing he can do for his severe hearing loss is to buy a better quality, more expensive hearing aid. It was a little upsetting, and because his present hearing aids cost enough! 😊
i saw my oncologist on Thursday last week and, to my surprise, she has terminated me from Cancer Care MB and I will see only my GP in future. She is sending his office a care plan about what she feels should be done over the next 3 to 5 years, but apparently he is under no obligation to follow her plan. So, after a year and a half under her care, with three series of scans and other tests, I am done. I am pleased to be considered cancer free, but still a little concerned about recurrence. If anything comes up, my doctor is to send me directly to the surgeon. But now I feel that I can move forward and, not forgetting the last two years, be thankful for how things have gone.
Spring is slow to come this year, and it has been very dry, so the farmers are out seeding and keeping their fingers crossed for rain. We have crocuses blooming in our flowerbeds, with tulips and lilies now between three to seven inches high. Hubby is planning to mow for the first time this year.
Now must go but wishing you all the best and will be back soon. Hugs,
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Hello, Nancy,
That sounds like good news, like you're being signed off fit. Sounds as if you will be able to access the specialists if you need them, which you hopedully won't. I hope you can move forward and live a full and long life.
I can't believe that your husband has been waiting 6 years for help with his sleep apnoea!
Susie xx
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Hi Susie
I guess I wasn't very clear, I don't really think oncologists explain the entire chemo process very well, I guess my last post does read that way. In my story I have only had experience with 2 oncologists, 1 surgeon, 1 radiation oncologist, and 1 radiology doctor, as far as doctors go. In all cases but one, they said "you have breast cancer, this is how you treat it", the end. The exception was the radiology doc who did my biopsy, when it came back TNBC he told me I was in for some hard times ahead, and he told me that surgery is the main thing, in his opinion. Anything further was left to the nurses, who usually will not tell you much without going to the doctor first. The first onco told me they had very good drugs for TNBC, and that he did not want me to feel bad, and I should be fine. So it quite surprised me when, a week after my first treatment, I could not stand or even sit up without blacking out and/or falling and had a high fever. I called a friend to take me to the hospital and was there for 5 days. I had to call people from my hospital bed to stop in and check on my husband who needed some looking after.
In hindsight, I should have had help lined up, in case of something like this happening. I was expecting to feel tired, and perhaps nauseous, but not prepared to be incapable of doing anything but lying on the floor. There was one intern who appeared early in my doc visits, and I never saw her again. When I asked her to repeat the diagnosis the doc had given me, she told me I had better get my ducks in a row. As you said, I was struck dumb and was not sure what she meant and she did not elaborate.
So videos like this do not bother me, If I had seen it before chemo I would still have done chemo.
Is the Boris Johnson in the Theater the politician Boris Johnson?? I admire the way you take in all the arts.
Talk later, Love
Mary
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SusieW5, I think a lot of people are falling through the cracks these days
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Hi Mary
Yes, that's the one and only (thank goodness) Boris Johnson.
Susie
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Susie,
He must be quite a character, he has some wild hairdos, or undos!
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Mary,
The play shows him mussing up his hair and pulling his shirt out before going on camera. People vote for him because he's 'a character'. In fact, he's a liar, a charlatan and a very dangerous man.
Susie
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Hi, Sylvia
My domestic troubles continue; last night my water heater sprung a leak and the floor drain wasn't draining and it was quite a mess. Luckily, one of my near neighbors is a plumber and he was nice enough to come over about 9:00 PM and take a look. He will be back this morning to fix the problem, I hope all will go well! The heater is only 3 years old, go figure.
This morning I see some big headlines about cancer: a cure in 10 years!! Maybe. When I read on, it is about taking drugs that prolong life while keeping tumors at bay, making cancer more of a "chronic" disease. I find this puzzling, don't we already have that? I know a man with kidney cancer that is no longer operable who has been taking drugs of one kind or another for 13 years now, he is glad to be alive but still has side effects of one kind or another. I guess it's wishful thinking on my part, but when I see "cure", to me it means the disease is eradicated and there is no need for more treatment.
I did hear Nigel Farage's name back in the news; that's good, he is at least articulate and has a sense of humor. I am heartily sick of hearing most of these politicians drone on. I am not knowledgable enough to even guess what will happen with Brexit, but this has all gone on much too long to have hopes of the results the voters hoped for. The saga continues!
The physical therapy for my shoulder has been stepped up, I am today 10 weeks post-surgery. Still not lifing weight, but working more with arm extended, amazing how weak my arm has become over the years since injured. I have been depending on my left arm for a long time, didn't really realize how much. Lifting weight will start after 12 weeks.
We suddenly seem to have gotten to summer, it is hot and steamy this week. But very green!
Talk more later, love
Mary
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Hello Sylvia,
I must apologise for the delayed response to your post, dated May 10th. We're having a new roof put on the cottage and the scaffolders have been taking up much of my time. I have a flourishing cottage garden growing against the front elevation and I needed to see that the the scaffolders trod as carefully as they could. Inevitably some of the plants have been crushed, but these are the less expensive bedding plants. You can't make an omelet without breaking eggs and the roof was in a bad way, with chinks of light appearing in some areas.
You asked if my daughter had an alternative career in mind. I really don't think she'll give up medicine altogether as she used to enjoy it so much and was so many years in training. She's determined to leave General Practice though. Very few professions are anything other than frustrating these days. How much more funding is this Government intending to cut from vital services like health, education, policing, welfare and so on? The headteacher at our outstanding village school has told us that he has suffered further cuts of £150 per child and the portable classrooms which are very old and falling to pieces are no longer going to be replaced. He works all hours and looks absolutely exhausted most of the time.
I agree that up to date specialist medical books are more reliable than Google, for the most part. However, peer reviewed papers on metaplastic breast cancer have been useful - up to a point. Unfortunately many, if not most, are overly pessimistic regarding prognosis. This is likely to be the result of placing women with different subtypes, ages, grades of tumour and comorbidities together in one piece of research. However, recommended treatment is almost always the same as for TNBC, which is why I fought so hard for chemotherapy. I'm still appalled that I was initially denied treatment or the opportunity to talk to an oncologist.
I've been readingthe True Cancer debate on the thread and feel that Mary's thoughts on the subject are in keeping with my own. If our NHS oncologists had the time to explain possible side effects and to answer all our questions fully, True Cancer videos wouldn't be necessary. It also needs to be stressed that some patients have very few side effects. However, the fact remains that many of us do. I consider myself very fortunate to have escaped neuropathy and lymphoedema, but it's largely due to this thread that I was so well informed.
Weather sunny and dry here. The cats are fast asleep after a hard morning chasing each other along the scaffolding and onto the roof.
With love,
Gill X
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Hi Susie,
Your opinion of Boris Johnson is spot on. The man's a complete charlatan and is extremely dangerous. The fact that there's still talk of him being the next PM leaves me speechless.
Gill
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Hi Gill,
Boris has said that he will run. Let's hope that Michael Gove still has that knife.
Susie
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Hello!! Very sad the two lung tumors are both breast cancer metastases.
They gave me the results today. I still do not know what's coming. I'm very afraid to go back to radiotherapy! Maybe he does not do anything else !!
Abrazos
Marias
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Marias
I'm so sorry about your news, after all you have been through I thought surely you had defeated all the problems one by one.
There may very well be more that you can do about this. I am not sure what it will be, but there are a lot of new drugs coming on all the time. And the radiation doc will surely tell you something too. Marias, I am thinking of you and I thought of you this morning. I was reminding myself to send you a message tomorrow on the 17th. My heartfelt thoughts and prayers (and candles) are with you!
Love, Mary
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Hello Marias,
I'm so sorry to hear your news. I don't know what treatment you will be offered, but I'm quite sure that your team will have something that will help you. So much money has been poured into breast cancer research over the last few years.You may even be offered a place on a trial.
I do hope that you will have an appointment with your medical team very soon as you'll probably feel a little more confident once you know what your options are.
I'll be keeping you in my thoughts and prayers.
Love,
Gill X
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