Calling all triple negative breast cancer patients in the UK
Comments
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Hello Gill,
I agree the survival figures are just averages and do not relate to our own personal circumstances. But they do put things into perspective of the seriousness of the illness. For instance, Liz's chance of 10 year survival was 67%. This was based on figures from 12 years previous so in our opinion they were actually better than the 67% as treatments must have improved over the last 12 years.
Firstly I believe Liz's cancer future had already been decided she was either one of the 67% or not. I still believe to this day that this was the case and what ever Liz did after treatments would make no difference to the cancer coming back or not. In fact the difference in survival figures with or without Chemo only changed by 10%, 67% with chemo 57% survival without Chemo.
I have seen 30 year old fitness freaks with very early stage TNBC die within 12 months of finishing their Chemo as the cancer came back. I also know 50 year old overweight women that eat and drink what they like and are still alive today long past the 10 year survival statistics. so you are correct when you say they do not relate to your personal circumstance.
However would you look at your future differently if your survival rates were different. for instance.
If you had a 20% chance of surviving 10 years or a 80% chance of surviving 10 years would you do anything different if you had one outcome or the other? If no then there is no need to know them. In our circumstances that would have made a big difference and our life would have been very different from now.
Our best friend died 3 years ago from Ovarian cancer. She had always planned to travel once her children had grown up. she had similar dreams to us. She first had cancer about 7 years ago. She had 2 operations to remove the cancer and all the other treatments but was told there was a 78% chance of the cancer coming back within the next 5 years. She had 3 children at the time aged 9, 11 and 18. We had introduced them to camping holidays in Devon the year before she had cancer. All her dreams went out the window when she got cancer. No more holidays she just buried her head in the sand and went back to work. she had every opportunity to have family holidays and create memories for her children but she did nothing.
Liz went to the hospital appointment with her friend when her friend was told the cancer had returned. The doctors words were " The cancer has returned go home and do what you need to do while you still can" Liz verbally tore the doctor to shreds because in Liz's and my opinion that is a cop out by the doctor. Surely if you have a young family and you are going to die you want some idea of timescale? The doctor did not even tell our friend she was actually going to die. By the time Liz had finished with the doctor she had all the facts. A timescale of 9 to 18 months survival rate. She would be able to do everything she can at the moment for the next 7 to 9 months then her health will go downhill. Liz's friend went home and did nothing just waited to die. Even though all her kids knew she had had cancer she never told them she was going to die until she could no longer get out of bed.
Maybe Liz and I look at things differently to other people. We knew we could not change Liz's cancer path but we were going to take control of the things we had control over which was the rest of our lives together however long or short that was going to be.
Peter
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Hello Sylvia,
We loved Switzerland best. The whole of Europe in general is wonderful for motorhome travellers as you can stop where ever you wish and they have special car parks only for motorhomes. England in general is against motorhomes. We love mountains, lakes waterfalls but as Liz can no longer go out in the hot sun sandy beaches hold no attraction to us.
This was the longest we have left Taylor because of his disability but its good to know we can leave him for 14 days at a time from now on.
I'm not concerned about Taylor getting any exam results but its nice that he wants to get them. Forcing children to get an education in my opinion is never good. They should want to learn not be forced too.
The doctors now think Liz has something I cannot remember the name of. Its were everything hurts and aches for no physical reason. The nerves are picking up pain were there is no actual injury. The only thing is people are normally depressed that get it and Liz is the happiest most positive person I know despite all the pain, however she has all the other symptoms. Liz is out at the moment so cannot ask her the name.
Always happy to comment if I have a point to get across whether other people agree or not with my point of view. My last post may seem controversial to some but so true to others.
Peter
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This is were we stayed in Switzerland. Its our favourite place so far.
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Well, I went to Charing Cross for my CT scan this morning. Got into the CT room about 3/4 hour after my appointment time, only to learn that I wasn't to have it this morning after all. I had been told by the consultant that I would probably need a 'cast' as my breast is still large, even with the lump cut out of it, and needs to be kept firmly in place. So, a nice cheerful woman swathed me in warm wet bandages, like some papier maché project on Blue Peter, and will make the cast. I am to have the CT scan on Friday afternoon.
Radiotherapy starts on October 1st, for four weeks, the fourth being a booster week on the exact spot where the tumour was. The annoying thing is that I have to go to Hammersmith Hospital for it. One of the machines at CCH is being replaced so they are below capacity. Not only is Hammersmith harder to get to but it's rather grim -- with large bits of it Victorian.
Flora, sorry to hear that your mum was troubled by neutropenic sepsis. Let's hope it doesn't recur.
Susie
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HI, Sylvia and all,
I am back from my trip, with many stories. I will be back later to fill you in, because I am going to visit my brother, who had an odd accident while I was gone, and is now in a therapy hospital! To make it brief, he is a very vibrant 68-year old man who is busy every minute of every day. While I was at sea, one night he got up and went into kitchen, came back towards his bed and passed out flat on his face, the doctor called it face-planting. When he did so, he suffered a severe whlplash-type injury and now has a spinal cord injury called Central Cord Syndrome. At first he couldn't move at all, and paralysis was feared. Then slowly things came back, but he still is having therapy for walking and lifting arms and especially for restoring the dexterity of his hands. He also has severe nerve pains in his arms and hands. Apparently he has made much improvement already, we can only hope and pray that this continues. Surgery has been ruled out for now.
Fortunately his speech, thinking, and organ systems have not been affected. Also it has not been determined why he passed out in the first place, his heart was checked and was okay; and he did not have a stroke. After that I think it was determined more important to get his function back, and delve more into the passing-out later.
I will talk to you again soon,
Greetings to Gill, and good to see beautiful pics and hear from PeterandLiz.
Love, Mary
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Hello Flora,
Hope after the initial, very worrying problems, that everything goes smoothly for your mum. That second and third opinion was worth its weight in gold. Hope the first Oncologist who thought your mum was too old for chemo has been given extra training. The seventies is not really old any more. Still lots to look forward to. Your mum was lucky to have you as her advocate. Give her my very best wishes. Take good care of each other.
Gill X
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Hello one and all,
To respond to your questions Sylvia:
- my oncologist is working on the latest research when prescribing Xeloda as follow up in my circumstance. The decision to proceed was mine and I have done so warily. If the side effects make life too difficult I will cease taking the drug. The pathology from surgery showed the cancer had breached the node wall plus the medical review team ruled out radiation to the axillia because of the high lymphedema risk. These factors all added weight to decision to do something more.
- I am seeing a physiotherapist who specialises in lymphedema and have several exercise routines plus some manual drainage techniques. I have a problem with cording at the moment and we are working to resolve that as a priority. Raising my arms into place for radiation is painful.
- radiation is to my chest wall and just above the clavical. I too thought I would escape radiation having had whole of breast in 2013 but I now no longer have a breast and they are treating the chest wall (front and back).
- level 2 lymph node dissection involves a section of flesh below the pectoral minor muscle in the armpit. Apparently there are 3 levels of dissection. Level 2 is common and from what I can understand is the surgeon removes a slab of flesh (that takes the involved node/s).
- the protocol for DCIS in Australia in 2013 was (depending upon size of tumour) lumpectomy followed by radiation. Not sure that hormone receptors were even tested. So no follow up therapy only physical exam, mammogram and ultrasound.
- I have just completed my second week of Xeloda and 12 of 28 days of radiation. I have a week off the chemo then back to the medical oncologist for review before I start the next round. If I can tolerate the drug the plan is to continue this routine for 6 months. Aside from the increased neuropathy and fatigue, so far so good. I would really like to go back to work in October so fingers and toes crossed for that.
Loved the happy snaps of the Switzerland trip. Love the conversations.
Take care everyone X
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Hello Peter,
Thank you for your post and for those really lovely photographs.
I would be interested to know what it is that Liz is suffering from. It must be very wearing to have aches and pains and for no apparent physical reason. I know that pain associated with the nerves is very difficult to treat. I have a friend who has nerve pain from having had shingles. What Liz has almost sounds like peripheral neuropathy, which is a side effect from the taxane drugs used in chemotherapy treatment. My oncologist told me this when I told her about the numbness in my feet. It seems as though this neuropathy can also take the form of pain.
It is good that Liz is happy and positive and can deal with the pain.
Once again, wishing you all the best.
Sylvia
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Hello Susie,
I was sorry to read that you did not have your CT scan as was planned. I do hope all will go smoothly on Friday afternoon.
It will be good for you to get started on your radiotherapy, as waiting for treatment to start is very tiring. It is a nuisance that you are having to go to a different hospital to where you are having your treatment. I would not have been happy about that when I was going through treatment. My oncologist dealt with all my chemotherapy and with all the arrangements for my radiotherapy. The Hammersmith Hospital does not sound very nice and I cannot understand why we still have Victorian hospitals. We are so behind. I recently read that we have just one private hospital with a proton beam radiotherapy machine and just two are being built for the NHS. They have twenty in operation in the US and they have been carrying out proton beam radiotherapy for some time. It is supposed to be much safer.
In a previous post you were asking about drinking alcohol. It is a recognised risk factor for breast cancer. I suppose each individual will make up their own mind what to do. I know recently on the news it was being said that there is no safe limit for drinking alcohol. I used to have an occasional glass of wine, but I have not had any alcohol since 2005, do not miss it and would never touch it now. There is a problem with too much drinking in this country. It is an addictive drug and I cannot see it has any health benefits. If you want resveratrol that is in red wine, you can get it from red grapes. It is probably in black grapes as well.
Keep well.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post and I am so glad that you are back on the thread.
I was so sorry to read about the accident that your brother had while you were away. I do hope that he will make a full recovery. Does your brother live near you and how far is the therapy hospital where he is being treated?
I do hope that he will be able to find out what caused him to pass out flat on his face.
I look forward to hearing from you again.
Love.
Sylvia xxxx
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Hello again, Mary,
I thought you would like to know that I have had three emails from Chris Woollams in quick succession. There is some quite interesting information in these.
I have also bought the latest edition of Chris Woollams, Cancer Active, magazine, icon (Integrative cancer and oncology news, volume 11, issue 2 – everything you need to know to help you beat cancer). There are a lot of interesting articles in this and the ones I picked up on are:
6 ways to improve your chemotherapy.
Breast cancer watch.
Brest cancer, hormones and wi-fi.
Guidelines on diet and physical activity.
Latest cancer news from around the world.
Sugar intake and cancer – emerging evidence.
15 ways to reduce chronic inflammation.
We had surprises this week with posts from Lou, as well as Peter and Liz. On the other hand, we have not heard in a while from regular posters like Val, adagio, 53Nancy and nothing from Marias, Hanieh and Gina.
I have missed you on the thread, Mary. Take care.
Love.
Sylvia xxxx
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Hello Helen,
Thank you for your post and for taking the time to explain what has been happening with you with reference to your treatment. All I can say is that you are going through a lot and I do hope all will end well.
Lymphoedema is a risk with all three parts of our cancer journey, surgery, chemotherapy and radiotherapy, and yet it seems to have been largely ignored for many years. Fortunately it is now getting a lot of publicity and attention, which I think has probably been helped by the recent book Let's talk lymphoedema. Surgery can cause lymphoedema, the taxane drugs can also cause it, and radiotherapy can cause it. Here in the UK the NHS seems keen on compression garments but I think exercises and manual lymph massage are very important.
Please keep in touch and let us know how you are getting on.
I can understand how you would like to go back to work and put this all behind you.
Wishing you all the very best.
Love.
Sylvia xxxx
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I was told yesterday that it would be okay for me to swim during radiotherapy so long as my skin wasn't blistered and so long as I washed thoroughly afterwards. I do feel that my Aquacise classes will help keep the lymphatic system moving.
Susie
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Hello Sylvia,
We think Liz has Fibromyalgia. Liz has all the symptoms apart from being depressed.
The specialists first dismissed it as Liz is not depressed.
Peter
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Hi, PeterandLiz
Fibromyalgia came to my mind when reading your first post, it is difficult to diagnose and can cause a lot of misery. It's very good that Liz is not depressed. I think being in pain can cause depression on a temporary basis, it goes away when pain subsides, I've been there too. It sounds like Liz has many good days as well, and you two seem to be enjoying life to the fullest.
Mary
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Hi, Sylvia
My brother is doing much better, he is not 100% and there is no guarantee he will be, but I am encouraged by his progress. He is being sent home tomorrow, but will have to do outpatient therapy for some time. His daughter and I worry about him being sent home already since he is such a "doer" that we are afraid he will overdo once home, but we ended our conversation last night with the knowledge that he is an adult in his right mind and we really can't stop him from going home if that's what he wants. We are both worry-warts and have to talk over all the scary scenarios, it seems. He is walking well and has made much progress with his hand dexterity too. The clinic is about 50 miles from me.
The Alaska trip was splendid, once I got over the fears for my brother's immediate well-being. We left Vancouver and went up the Inside Passage of Alaska, to the Land of the Glaciers that spill into the sea. We made a few stops, and had excursions of many kinds and saw whales, humpbacks and orcas. We saw dolphins, harbor seals and sea otters. Some people saw land animals from the ship but that took sharp eyes and/or good binoculars. Being on the starboard side of the ship helped too, we were on port side. The views we saw of land from our ship and on excursions were just magnificent, words and pictures don't suffice. I can see why people get so enamored with that land, although then there is the winter! Most of the people who worked with the tourists would leave at the end of this month and go south for the winter. We were blessed with beautiful weather for our trip, we were told it was highly unusual to have it at this time of year, we had crystal clear views of almost everything, even Denali and the Alaska Range, that mountain usually hides her majesty 300 days of the year. That was on the Land Portion of our trip, we rode on trains, planes, helicipter, buses, vans, and once were pulled by sled dogs on that portion, oh and walked of course.
I will post some pictures as soon as I can.
I did receive the Chris Woollams post emphasizing Childhood Cancers, I will have to search for the others. Later today and tomorrow I hope to have time to look at some of this information.
I hope Val is not being affected by the hurricane, the only good news is that it has lessened in intensity.
I shall talk to you again soon, dear Sylvia.
Love, Mary
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Hi, HelenLouise
You are dealing with a lot of different things at once, I certainly do hope all will go well and the Xeloda will be well tolerated. I'm glad you have found a good therapist to help with the lymphedema and I hope the neuropathy does not progress any farther.
The goal of going back to work in October is something to look forward to, I wish you the very best progress with all you are going through.
Talk to you soon, love, Mary
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Sylvia,
I was interested in the survival rates you quoted of 67% with chemo and 10% less without. Those are exactly the figures I was given after surgery in February, which suggests that they take no account of individual variations.
Susie
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Oh, God, if ever I say I am having a CT scan to plan my radiotherapy again, just shoot me. I have literally never been so uncomfortable in my life. My arms and hands went numb after a few minutes held above my head. The staff were very patient with my moaning. When I finally got out, my left arm was dead and I could do nothing with it for a good 15 minutes, which made putting my bra back on a right palaver.
(Whingeing) Susie
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Hi Susie,
I mentioned the 67% survival rate. This was 7 years ago and Liz's lump was a lot smaller. She also had no nodes involved.
For you to get the same percentage 10 year survival rate should mean things have improved as you had a lot larger lump and a node involved.
Also what you need to remember is a 10 year survival survey finishing in 2017 started 10 years earlier in 2007 as its a 10 year survey so if treatments have improved then hopefully survival rates have also.
I can remember a gentleman on this thread who was in the medical profession and was posting here as his wife had TNBC stated that in Germany they were claiming up to a 90% survival rate.
Peter
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Thanks, Peter,
I took the 67% with a large pinch of salt anyway as there was no sign of any spread. That's very interesting about the German figures.
Susie
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Hello Mary,
Thank you for your latest post. I was very glad to read that your brother is improving and that you feel encouraged by his progress. Let us hope that he does not overdo things. That is quite a long drive for you to the outpatient therapy clinic. How far do you actually live from your brother's home?
I must say that your Alaska trip sounded very interesting and I hope you will post some photographs. When Raymond and I were living in Canada we flew to Vancouver for a two week holiday. It was not organised. We just rented a car in Vancouver and did some sightseeing, went on the ferry across to Vancouver Island, drove to the northern tip of Vancouver Island (Port Harvey) and got on a ship to do the inside passage in Canada. It was so interesting for us.
How are you feeling at the moment? I do hope you manage to have a restful weekend and then a pleasant week.
We still have not had much rain here in Exmouth. It just keeps missing us. It is beginning to feel quite autumnal now.
I do hope you manage to track down the first two emails from Chris Woollams of Cancer Active.
I do sometimes wonder whether we are getting too much information. Sometimes it seems more than the brain can take! I still think the best thing is to live one day at a time and to enjoy it. We never know what any day will bring.
Thinking of you.
Love.
Sylvia xxxx
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Hello Susie,
I would not worry about these percentages. Just live your day and do whatever makes you happy. As I have said many times, we do not know what can happen to any of us on any given day.
I do hope you will have an enjoyable weekend and will be able to switch of breast cancer, scans, etc. Hang in there and get your radiotherapy done and dusted.
Sending you fond thoughts.
Sylvia xxxx
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Hello Susie,
I hope you have recovered from your uncomfortable ordeal with the CT scan today.
You might be interested in the following. This is what I read in a brochure by the BSN medical. "Diagnosis of breast cancer has increased over the last few years and can affect both men and women. I develops in and around the breast tissue and in and around the axilla."
"Prevalence: 1 in 8 women will be diagnosed with breast cancer during their lifetime.
There are around 54,900 new cases of breast cancer in the UK every year. 150 cases diagnosed every day.
Breast cancer is the most common cause of cancer in the UK.
Accounts for 15% of all new cases in the UK.
In 2015 there were around 370 new cases of male breast cancer."
I find these figures appalling and feel there is not enough attention given to prevention.
Take care of yourself.
Love.
Sylvia xxxx
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Hello everyone,
I just wanted to wish you all a very enjoyable weekend, whatever you choose to do.
To those of you going through treatment, Moth, Helen, Susie, Gill, it will all come to an end and you will get back to a normal life.
To Flora and Ellen, posting for their mums, take care and keep looking forward.
Monica, did you ever find out how to get that special measure for measuring a lymphoedema arm?
Kath, I have just picked up the leaflet for the new flu vaccine and it states it will be dealing with four things. Apparently there will be a different vaccine for the over 65s and it will have an immune booster added to it.
I would love to hear from Val, adagio, 53Nancy, CocoonCat, Hanieh, Marias and Gina. You are always in our thoughts.
I do hope I have not forgotten anyone.
Best wishes to you all. Live life to the full.
Sylvia xxxx
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Just reading an article in the Independent online which blames the big increases in rates of breast cancer on Western Lifestyles. It seems that countries that have been moving away from traditional lifestyles towards western ones, such as Japan, South Korea and Singapore, have seen cases triple in a few decades. Also our failure to produce half a dozen children each and spend most of our youth breast-feeding is thought to play a part.
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Hello Susie,
The information that you have been reading about is well known. Western lifestyles are causing cancer, amongst other things. Cancer is said to be multi-causal and there are risk factors such as starting your periods early, having a late menopause, not having had children, having a first child late in life, diet, lifestyle, environment, the birth control pill, and HRT, and goodness knows what else! I remember filling in a questionnaire at the hospital when I was first diagnosed.
I had a late menopause and have not had any children.
I think stress plays a big part in cancer. This still seems to be under discussion.
Thank you for being an active supporter on the thread.
Love.
Sylvia xxxx
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Hello Cocooncat,
I have metaplastic breast cancer, just one percent of all breast cancers and is considered to have a poor prognosis., It looked and felt like a cyst and having had so many cysts before, I just left it for weeks and weeks. Diagnosed about 2 weeks ago. Like you, I'm very, very angry wnd frightened. However, 3 days ago I paid for a second opinion and my operation has been put forward by a month. I'm having to pay for that too. I know that our situations are different, but what I'm saying is that you need a second opinion with a senior, experienced Oncologist as the information you have is conflicting and confusing. I hid under the duvet and couldn't eat for a few days. But taking action really helped me to regain control. I really hope that you find a supportive Doctor, who will address your understandable panic. Then you'll be able to think more clearly and have a treatment plan that you can trust. Unfortunately, not all Doctors, Surgeons and Oncologists have the empathy gene, or consider what the patient wants. Ultrasounds can be confusing, mammograms too. My mammogram in November showed a cyst!
Don't hold onto the bad stuff, you can't change it. You can move forwards. Do you have a friend or family member to advocate?
Please keep posting on here, I've found it amazingly therapeutic. Helped me to think straight.
Love,
Gill X
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