Calling all triple negative breast cancer patients in the UK
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Hope I didn't offend or upset anyone but my point is that most other cancers have much lower survival rates.
The oesophageal cancer that killed my husband (and now Jeremy Hardy) has a 10-15% survival rate. That would make me anxious.
Susie xx
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Hi Susie,
I doubt if you offended anyone and you're right about many other cancers. Pancreatic cancer frightens me the most, with oesophageal and stomach coming a close second. I've seen a lot of patients with oesophageal cancer in the Hospice and it's a cruel cancer with a very low survival rate. It must have been so traumatic watching your husband suffer knowing that there was nothing anyone could do to save his life. His Oncologist didn't help either of you by telling you both how long he had left without preparing you first. She was brutal and shouldn't be allowed anywhere near patients.
At least there are treatments available for most breast cancers even if they are often brutal. I guess I'm just not used to being ill or being in hospital so often. Not a good patient really.
Hope you have something interesting planned for next week. So much choice down there.
Keep warm,
Gill X
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Hi Gill,
Luckily, my husband died before there was any suffering -- physical anyway.
I had never been ill in my life before my diagnosis, except the odd head cold or 48-hour bug, and thought I would be a terrible patient but it turned out that I wasn't. But then I didn't have to spend any time in hospital, which I would have found a lot harder.
Susie xx
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To all here,
I would like to invite you to a party today, today is my 5-year Cancerversary!
I found a lump in my right breast on January 26, 2014. This was very odd to me because I had had a thorough screening with my Gynecologist at the end of December, 2013. No lumps, no bumps. I had had a mammogram in September, a few months earlier. So I called the Gyno's office the next day, and had a very hard time getting a message through to anyone. I kept calling and finally got a kindly receptionist who rounded up a nurse who called me back with only a message to be at the local Cancer Center over a week later. Then, yes, I worried. On January 30 my husband had an appointment with his hematologist, who was also an oncologist. After my husband finished, I brought up the subject of the breast lump. He asked if anyone had looked at it, I said no, and he did so immediately. He said it was concerning, and then immediately sent me for a mammogram. He set up an appointment for a biopsy the next day, Friday. When I went the next day, I brought along the CD of my September mammogram. I could hear the techs talking in the next room, and they saw nothing suspicious on it either. The biopsy was performed, and I was sent away with assurance I would be called Monday with results. It was a very long weekend, although I had a very good idea of what was coming. So the oncologist called on Monday, and today is 5 years since that day.
Susie, I wasn't offended either by anything you said. I like those kinds of discussions where there really is no one answer, I think everyone deals with things differently. I usually worry more when things are unsettled, unknown, up in the air; at the time of my diagnosis I think I was more worried about my husband's health and how my cancer treatment would affect my taking care of many of his needs.
I suppose another way to look at things is this: 20% or 50% of us as a cohort may succumb to the BC, but the other 80% or 50% will succumb to something else someday with the same end result. The BC diagnosis just sticks it in your face, the fact that we are mortal, and we have a finite number of days left to us.
So, all that being said, back to the cheerful part, on with the party!!
Love, Mary
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Hi Mary,
Congratulations on your fifth Cancerversary! Despite the side effects of chemotherapy, you've seen the dreaded triple negative off. A positive message to everyone on the triple negative threads.
Reading your cancer story, I couldn't help noticing that once your husband's hematologist/oncologist became involved, things moved very quickly. Clearly not a man to let the grass grow under his feet. He was probably wondering how you would cope with your own diagnosis and your husband's illness too. You must be an incredibly strong and determined person, especially since the Docetaxel proved so difficult to tolerate. Superwoman ? 😇 You would probably say that once you had a definite diagnosis you just had to get on with it. I think that's the most difficult thing, usually in life we have choices, cancer snatches choice away, it's not a battle or a fight, it's a process that we have to go through and hope for the best.
I hope you really are having a party as your family celebrations sound amazing.
To the next five years! 🥂🍾
Love,
Gill X
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Hi Mary
So happy for your fifth cancerversary. It' s a great news for anyone involved with this disease.
Wish you and all many many cancerversary.
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Hello everyone,
I have just had a quick read of all the posts and I shall try to catch up at some point. At the moment Raymond and I are feeling really unwell from some vicious bug we have somehow picked up. It started with us losing our voice, developing a dreadful hacking cough and it has gone on from there.
Susie, Gill, Mary (congratulations), Hanieh, thank you for keeping the thread going.
Love to all.
Sylvia xxxx
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Hello Sylvia,
Why not take a short break from the thread until you and Raymond are feeling better? I'm sure there's enough of us now to keep the thread ticking over.
I doubt if you and Raymond are getting much rest at the moment as coughs are usually so much worse at night.
I hope there's someone to do your shopping and drop in to see if you need anything.
Keep warm and don't try to do too much.
Love,
Gill X
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Hello, Sylvia,
Sorry about your hacking cough. It seems that so many people are suffering with it. I went to the theatre yesterday afternoon and it felt like half the audience were coughing! As soon as one stopped, another would start up. I suppose actors have to get used to it.
Mary, happy anniversary. After five years, I understand that the prognosis for TNBC is excellent.
As you say, we are all dying, even if it's at the age of 110.
Susie xx
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Happy cancerversary Mary! That is good news and you are an inspiration.
Get well soon Sylvia
Love to all xxx
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Hi, Gill
Thank you for sharing my party! I actually did go to a party, it was a pre-Super Bowl party and ended before the game started, but very few people there actually cared about watching the Game. I know I didn't and don't know who won. But it was a nice group of people, and it was an unusually warm February day, and many of the men were outside playing horseshoes and cornhole, whatever that is.
I did like my oncologist, I still wonder why he didn't refer me to the Breast Cancer specialist at this Cancer Clinic, but I didn't know anything at the time. He seemed puzzled often as I kept losing weight, and developed many side effects, which led me to wonder how much TNBC chemo toxicity he had encountered. He did reduce my doses as I neared the end of treatment, and then he had a retirement party on my last day of chemo. My new doc, the Breast Specialist, started our relationship by telling me I had not done enough Taxotere, and I just started crying. She then reviewed my chart, came back, and said it was all good. ??? I am still here, so I guess something worked.
I'm glad you sound so much better, how many more sessions for you?
Love, Mary
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Hi Hanieh
Thank you, dear! It was a good day, and a warm February day, didn't even have to wear a coat.
5 years ago I would not have thought this day would come, so much has happened in those years.
Take care of yourself, and talk to you soon, love,
Mary
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Hi, Susie
Yes, even at the age of 110, although science is trying to make us immortal, I read. By taking bits and pieces and somehow splicing with new parts and so on; but it's possible by age 110 one might be ready to move on, I don't know for sure.
I think the 5-year mark means the odds for survival get better, just another statistic. But a good day, nonetheless.
Thanks Susie!
Love, Mary
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Hi, Sylvia
I hate to read that you and Raymond have both been struck down by the "crud", as we not-fondly call it here. I had the laryngitis, the sore throat, the cough, the streaming nose and sneezes too, It quite knocked me for a loop, and lingers still but is getting better. It seems to happen when the weather is changing constantly and then so many people have it, as careful as one is these things just move from person to person.
I have been eating mostly soup for over a week, homemade, and nothing else tastes very good.
At any rate, I hope you and Raymond will soon be back to normal, please do take care and don't stress yourself in any way.
Talk soon, love, Mary
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Hi Mary,
Glad you had a real party, even if it was a pre-Super Bowl celebration. I don't think I'd be particularly keen on watching it either. But I don't watch the (arguably) favourite British sport of football either. Absolutely dread the World Cup with it's wall to wall TV coverage.
It's worrying that your second oncologist told you that you hadn't had enough Taxotere before she'd even read your notes properly. I'm beginning to think that most oncologists haven't a clue how difficult chemotherapy is. It's poison for Heaven's sake. I only have two more treatments to go. My next session should be on Thursday, but I still haven't seen my oncologist and my appointment has not been mailed to me. Neither do I know if my dose of Paxlitaxel has been lowered. Still nauseated and the Norovirus symptoms haven't completely gone. Guess my body is having difficulty fighting it off. I really think everyone should see their oncologist after every treatment.
It's not too cold in Norfolk, though it usually falls just below freezing at night. Envy you having an unseasonably warm start to February. As a child living in the Midlands I remember February as a very cold month with a great deal of snow. Schools stayed open, trains and buses still ran. A few centimetres of snow nowadays and the whole country grinds to a halt. I had a long walk to school and always had chilblains in my toes. Loved the snowball fights and the long slides we made across the playground. The teachers often joined in. Lots of broken arms and collarbones (not mine), but it was huge fun.
Keep away from all those Winter coughs and colds.
Love,
Gill X
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Hey Gill
Well, I should have known better, our weather is now turning for the worse later today. Supposed to start a cold rain later and then drop about 40 degrees overnight. So, normal February weather, in other words, and no need for you to be envious! Your winter weather sounds much like ours, usually not too bad with occasional very cold snaps and sometimes snows. But like you, I seem to remember more snow as a child, seemed like we were very often sledding and skating around the ponds, now children have to make do with much less of that here. And we also had no decent cold-weather gear then, so often had to come in and stick our freezing feet on the woodstove. And then back out for more.
When I was told by my new doc I hadn't done enough Taxotere, she were treating me as if I had refused treatment. I told them it's all my MO had ordered for me, but they didn't know it until they checked. What I gathered from the whole ordeal was: they didn't read the chart before they talked to me, and if I would have been the other MO's patient I would have done more chemo, per her order, probably. The nurse came back and said it was okay, and I asked "which doc is right?" She said all docs have their own protocols. I wasn't real sure what to think at the time, I was just pretty sure I was fed up with taking chemo.
I hope you are not losing too much weight, you've been nauseous for a long time. Maybe the Norovirus hanging on? I am glad you're near the end of your sessions, perhaps they're giving you more of a break in routine than you anticipated. I think you should see the oncologist before each session too, or at least a nurse practitioner who is very familiar with your case.
Soon you will be done with this routine, we are always with you in spirit.
Talk soon, love,
Mary
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Hello again Mary,
I've just realised that you're still recovering from the 'crud' yourself - good name for it by the way. With any luck you'll have had your share until next Winter.
Gill X
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Hello all,
Sorry to hear that Gill is still feeling nauseous; Mary has the “crud” and Sylvia and Raymond have also been struck down by some horrible winter bug.
I write from my bed, as my whole family also seem to have succumbed to some kind of flu, bar my husband (thankfully) who has been running up and down stairs with chicken soup, Ribena and Calpol all day! He’s recovering from a horrible migraine actually, but, as the “least” ill, has been nominated Chief Nurse- well done him!
Mary- many congratulations on reaching the 5 year milestone, definitely a very significant anniversary for Triple Negative patients. I hope you can breathe easier now.
Re: what Susie was saying re too much doom and gloom over TNBC, I suppose - as with everything- it is all relative.
Compared to most other breast cancer subtypes, the outcome for TNBC is generally less good. But let’s not forget that these other breast cancer subtypes now carry really excellent prognoses( think the five year survival for Stages 1-3 hormonal breast cancer is something like 93 percent).If the outcome for tnbc is,say, 15 percent less than that ( not exact figures and as ever all such figures are necessarily at least five years out of date) then TNBC might be seen as more doom and gloom-laden than other bcs, but actually in the grand scheme of cancers, the statistics are pretty good.
The one thing that is certain about BC is that it receives way more funding than other (particularly male) cancers. Since TNBC is currently viewed as the poor cousin of breast cancers ( inroads have not been made into treatment in the same way as they have for other bcs over the last twenty years) I sense that a large part of that funding is currently going into TNBC. So quite a lot of room for optimism there.
My mum is about to have her 9th paclitaxol ( all being well) tomorrow. She will then have a week off and the team will consider whether she can go up to 12.
The snow has now gone from Oxford, but at least we got our obligatory family album photos of snowmen and (rather reluctant) sledging!
Love to all
Flora x
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Hello Flora,
What a sickly lot we are this week. Flu is just horrible, I wonder if that's what Sylvia and Raymond have? Your husband deserves a medal, taking on the role of Chief Nurse and just recovering from migraine. Thank Heaven's for Calpol, it does spare children an awful lot of misery.
From what I hear, there's about to be some interesting news regarding the treatment of TNBC. I wonder if Metaplastic triple negatives might benefit from this too? Oestrogen+ cancers are now treatable even at stage iv. More of a chronic condition, though I doubt if taking Tamoxifen or the alternative for 10 years is much fun. I really hope that within the next few years chemotherapy will no longer be needed to treat any type of breast cancer.
Your mum is coping well on weekly Paxlitaxel. I wish I'd been offered this. I was only offered three high dose treatments, though I have asked to have the next dose lowered. Our chemotherapy unit is absolutely full, so my having 12 weeks would probably have meant another patient being pushed down the waiting list. I really wish that I could have afforded private chemotherapy. Dr. H. at the Cancer Centre told me that it was horrendously expensive and the treatment was the same as NHS. I think he might have underestimated the dire circumstances some hospitals are in. Choices are very limited here and it all seems a bit haphazard in regard to the medication patients are offered in order to cope with side effects like nausea or Neutropenia - although I have finally been given Filgrastin injections for the Paxlitaxel treatments.
It was only last week that you were posting to say that your sinus problem had cleared and that you had a spring in your step again. I hope you'll be able to say the same thing again very soon.
Love,
Gill X
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Happy Cancerversary Mary! So very happy for you!
Get well, Sylvia. Please take care. I had that cough and runny nose (like Niagara Falls) for two months. I was placed on two rounds of antibiotics and one of prednisone (I refused the second round). If it gets too serious, please see a doctor.
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Dear Gill,
I’m sorry you have had such a rotten time on Paclitaxol.
It is interesting you were only offered three high dose infusions-maybe, as you say, because it would mean keeping you out of the already-crowded chemo room at Norwich hospital? But hopefully also because the oncologist ( or maybe Dr H?)felt it was the best course for you with your type of breast cancer ie I do hope this decision was a considered one and one made with your best interests at heart!
If anyone out there reading this is considering private chemo in the UK, I thought it might be helpful to say what my mother’s taxane treatment has cost so far: £500 per infusion plus £250 for each lot of blood and liver tests, so, if she reaches 10, it will have cost her £7500.
Obviously we were forced to pay for it- it was the only way she could get the taxane- but some people might feel it a price worth paying for the private chemo experience?
The good things about going privately include: being able to choose what day you have the chemo on and the nurses being visibly less frantic( in fact not having quite enough to do, which has meant my mother has had very attentive treatment!) None of this is to say that she felt the nursing care she received through the NHS was sub-standard. She was just aware how crazily busy the nurses were...
Hope everyone is recovering from their various lurgies.
Flora x
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Dear Flora,
Useful information about costs for private care. Thanks.
Susie x
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Hi Mary,
Not at all envious of your weather now. It's a lovely sunny Winter's morning here. Not too Cold and just a slight breeze. I'd love to go out for a walk around the village, but until I can shake of the Norovirus, I daren't wander far from the loo. I've lost 7 lbs so far. I'll soon put it back on no doubt.
I'd have enjoyed pond skating. We did have a fairly shallow stream in the park and would dare each other to run across it without falling through the ice and getting 'a foot full'. Inevitably, we would all end up with wet feet. I don't know if it's the same in America, but in the UK these days I doubt that many parents would allow their children out in the snow to play unless they could accompany them. Children miss out on so much, not least, learning to become independent. Social media is the new fun!
Different doctors do seem to have different treatment protocols and it's worrying when they differ wildly. The Dr. I had my second opinion from recommended aggressive treatment. My local hospital recommended no treatment at all. I do think that the hospital's massive debt might have influenced their decision though - much as it did in Flora's mum's case. You've seen your cancer off without needing more Taxotere and I can't help wondering if the docs are overdoing the chemotherapy. My oncology nurse told me that the first infusion of Paxlitaxel would have done most of the work. Perhaps the rest is just insurance ?
I now have an appointment with my oncologist tomorrow morning at 9.00 and the chemotherapy is at 9.30 so I'll be able to ask her opinion.
Still sunny here. I'm sure I must be wrong, but it looks as though Spring is on the way.
Keep warm and take good care of yourself.
Love,
Gill
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Dear Flora,
Firstly, I hope you and the rest of the family are recovering well. So many viruses around this year. Sylvia and Raymond seem to have been particularly badly affected.
Dr. H. Advised the hospital that I needed aggressive treatment and my oncologist is following his plan. It's my reaction or over-reaction to Paxlitaxel that's the problem now. I'm having a blood test later this afternoon and this will determine whether further high doses are appropriate for me . Pleased that your mum's coping so well after all the physical problems she had earlier and then the worry you both had to endure when the Trust denied her the Paclitaxel she needed.
Including the cost of the Paxlitaxel infusions and blood tests will be a useful guide for those who are having a difficult time accessing treatment. All the same, it's a lot of money. It should be free to all NHS patients. Dr H. seemed very keen on that ideal. He said that TNBC was an aggressive cancer and chemotherapy was part of the treatment. He did say that I didn't need radiotherapy though. I'm guessing this may be down to the mastectomy, good margins (5mm) and remaining at grade two. Apparently most TNs and metaplastics are grade three. I'm grateful for that.
If only this Norovirus would give up and go away I'd feel well. It's so annoying.
Feels like a Spring day here. Apart from the coast, Norfolk's been so lucky with the weather. I'm looking forward to being out and about again, miss the walks and meeting up with the villagers.
Take care,
Gill X
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Hi, Flora
That was annoying, I wrote a post to you then wasn't logged in when I tried to send it. Had to log in and lost the post, argh.
Too tired now to resend, will try again tomorrow. Hope you and family are feeling better!
Love, Mary
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Dear Mary,
Congratulations on five years of being cancer free. This will surely give us motivation. I am fine and sometimes go through the thread . What a lot of knowledge you all have and discuss with each other.
Sylvia hope you and Raymond get well soon.
Best wishes to everyone .
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Hi, Flora
I wanted to say thank you for congratulations, as a rule I don't like to even mention much about such things; I'm a bit superstitious and don't want to draw any attention. Laying low, so to speak, so the ill winds blow on by. But I couldn't help myself, and wanted to be happy about it.
It was interesting to read of your mother's experience and her treatment costs. I have no idea what my chemo treatments cost, and probably many people here don't know. The hospital or clinic here will bill the insurance company, or companies, and then they negotiate downward, and what the final bill is is never what the first price was. I'm glad your mother was pleased with the care she received, I'm sure it was good to have nurses that took their time with her and didn't rush.
I do hope you and family are recovering from your various bugs, and thank goodness your husband was able to nurse everyone. I do hope he doesn't fall ill too.
When my sis-in-law and I were in Alaska last year, we were on the balcony of an apparently-famous treehouse overlooking a magnificent vista when 3 men joined us in our viewing. They turned out to be Australian, a father and 2 sons. One of the sons was in college, the other was a doctor. He was a research doctor working in the UK, his field of study was Triple-Negative Breast Cancer and he wondered if we had heard of that. He was quite surprised when I told him I had been treated for it, and he told us there is a lot of ongoing work on this disease with progress really coming along. He asked how long I had it, and said from what he has seen my chances of long-term survival were good since I was already over 4 years then. I will take any encouragement! Your theory of relativity re: TNBC is a good way to look at it. Worse prognosis than some of the other BCs, but better than some of the other cancers. The biggest cancer killer is actually lung cancer, and it is very sneaky, and late to make itself known.
Get better soon!
Love, Mary
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Hi, Jags
It's good to see you here again, thanks for congratulations.
I'm glad you are doing so well, and have recovered from all the treatments. Yes, we miss Sylvia's presence here, I'm sure she will be back when she recovers, and I do hope that's soon!
Come back when you can, it's good to see old friends, and you can tell us a little about your life in India if you like.
Love, Mary
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HI Gill
I will start with a weather report for our area today, included in our forecast is rain, ice, high winds, and dropping temps. All of it, at different times. Right now we are still in the warmer part of the area so are being spared the ice storms to our west and north. But are still being cautioned.
As to our childhood ice skating, we didn't actually have skates, (that cost money!) We would slide around on our slick boots and call it skating. I agree that children now are watched over more carefully, and don't have nearly as much freedom to run outside and play as we did. This era of "stranger danger" is very sad, I think.
It must have been awful to think that you would be told you would not get treatment only because of cost. That is not right. It makes one wonder, if you read my post to Flora where I mentioned the young research doc who is looking for cures for TNBC in the UK, it would be a sad irony indeed if they found something new and then hospitals couldn't afford to offer it!
I'm very glad you saw your oncologist today, I look forward to hearing what he has to say.
I got some bad news this week. My shoulder has been hurting more, my MO ordered an MRI and my rotator cuff is now fully torn. I guess I will have to bite the bullet and have surgery on it, ugh.
I will talk to you soon, love,
Mary
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