Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Sylvia,
It's very quiet on the thread again. I'm glad you've contacted Mary and that she's generally well though tired. Very young dogs are so full of mischief until they begin to understand the house rules. I'm sure Mary will be getting plenty of healthy exercise.
Michael has a dental appointment next week and the receptionist telephoned yesterday to give him a list of the new rules. He has to wait outside until the dentist is ready to see him, pay with his card - contactless, and leave immediately by another door. No talking! My dentist wants us to wait outside in our cars with our mobiles on and the receptionist will telephone when he's ready to see us. My six monthly appointment was cancelled and I have to wait to be told when my next appointment will be. Meanwhile, my Zoledronic acid infusion will go ahead on July 18th. The chemotherapy unit should be fairly empty as the 18th is a Saturday and it's only open for short treatments.
I think you and Culpeper would get on. Though some of the advice seems to be extremely dangerous, especially for children. I wouldn't want to take anything made from Aquilegia. It's highly toxic and I wish I could get rid of it. Unfortunately it's the most persistent of our plant pests and appears to be indestructible. Most other garden 'weeds' seem to have some kind of medicinal purpose and I often look them up to find out more. I think it helps me to turn a blind eye to the parts of the garden that have been allowed to run wild.
I think you have to hope that common sense prevails and Sandy Bay holiday resort is either closed down for the Summer or very limited in how many holidaymakers it's allowed to take. Local residents are going to feel very vulnerable over the next few months and that's so unfair. I'm not looking forward to the pubs opening, though I used to look forward to sitting in the garden of the village pub after a Summer ramble. The shielded are completely free to do whatever they like after August 1st. I shall remain very vigilant though and the beach will be out of bounds for us during most of the day. Late afternoons and evenings are safer.
Thank you for recommending BBC's 'Talking' Heads'. I'm working my way through them, I was completely hooked after the first monologue with Imelda Staunton. I really don't know why people complain about the licence fee when there are so many excellent dramas and documentaries on offer. Did you see 'The Great British Sewing Bee' it was much better then I expected, even for those of us who've spent a lifetime doing their best to avoid picking up a needle.
I've strayed far from the subject of breast cancer, but there doesn't seem to have been much reported lately. I haven't had the chance to read Chris Woollams' newsletter yet, there may be something relevant to us there.
Have a peaceful weekend and take care of each other.
Love,
Gill xxx
0 -
Hello Gill,
Thank you for your latest post. I shall try to answer it later on this evening.
I hope you saw my one that I posted just before your last post and in which I mentioned a new book on cancer entitled Malignant. Please have a look at that post for details.
Talk soon.
Love.
Sylvia xxxx
0 -
Hello Gill,
It looks as though the routine for seeing a dentist is the general routine for different appointments now. What Michael went through was much the same for me. It was the same routine that Raymond and I had with a home visit from our podiatrist and it looks as though it will be the same for hairdressers and barbers. They all wear their protective clothing, masks and visors and gloves. Raymond and I had to wear masks with the podiatrist. With the dentist, who knows us very well, Raymond, wearing a mask, was allowed to wait for me in an empty waiting room, but I did make a special request for this as we do not have a car now and we walked in to town and back together in case I was not feeling good. It is the same routine apparently for any outpatient appointments at the hospital and they cannot have anyone going in with them. It looks as though with the dentist there will be long waits for check ups.
I hope all goes well with your Zolendronic acid appointment on July 18th.
It sounds as though you have a large garden. I do not know anything about Aquilegia.
I am typing this Saturday morning or what has been termed Super Saturday. I think I shall listen carefully to the news this evening to see how people have behaved. The pubs opened at 6 am this morning! The Sandy Bay holiday resort is opening today and I dread to think what all the extra people will get up to and what the results will be.
I think you are wise to be careful about what you do when the shielded become free to do whatever they like on August 1st.
I was glad to know that you enjoyed Talking Heads. They are so clever and profound. I did not see The Great British Sewing Bee but I have never been keen on sewing!
Raymond and I seem to watch a lot on BBC4 and on Thursday, July 2nd we watched two programmes on BBC4 which were really interesting. At 9 pm we watched Britain's Forgotten Slave Owners with David Olusoga. The title was Profit and Loss, 1 of 2. When Britain abolished slavery in 1834 the Nation's slave owners were compensated, the slaves themselves got nothing. Studying the compensation records, history David Olusoga reveals how it was often ordinary members of the middle classes who exploited slave labour. At 10 pm the other part was The Price of Freedom, 2 of 2. Examining the circumstances of the compensation the government paid to slave owners in 1834, David Olusoga reveals how, out of 46,000 beneficiaries, the 3,000 who lived in Britain pocketed half of the money.
During these programmes he mentioned the case of two sister who owned a slave were given £63 19s 3d. The total came to nearly 17 billion in today's money.
I was appalled at how wealthy the slave owners became on this money and also at the fact that they would not accept the end of slavery without the guarantee that they would be given huge compensation. The end of slavery was not brought about through any moral compulsion, just greed.
These programmes were originally broadcast I 2015 so you may have seen them.
Finally, in the London Review of Books, I read an article about Boris Johnson, which I found entertaining, profound and worrying, entitled Superman Falls to Earth by Ferdinand Mount on Boris Jonson's first year.
Another interesting article was entitled Bastard Foreigners by Michael Dobson. It is about a book entitled Shakespeare's Englishs: Against Englishness by Margaret Tudeau – Clayton. This is quite a difficult article but what I found amusing was the comparison of Boris Johnson with Shakespeare's Falstaff.
I do hope Mary will come back to us soon. I am not really an animal person in that I do not have pet animals, but I have heard from friends etc. what a challenge it is to train a puppy and also about how dedicated you have to be to walking a dog through the years and how it can encroach upon your freedom.
I do wonder what the forum will be like with the new changes. Do you have any opinions about it? For me there are probably too many threads and many are created and then not followed up.
I am also wondering what has happened to Kath in Australia. She may be very busy working on the coronavirus crisis. I see here that we are already being urged to get our flu jabs!
That is about all for now.
Love.
Sylvia xxxx
0 -
hello Sylvia, Gill and all here
I'm back like the old bad penny, whatever penny that was. I have been tired, I was blaming the puppy but there may be another culprit. I learned that a have a mild case of Rock Mountain Spotted Tick disease. My doc said it looks like my body is clearing it on its own, since I have had no symptoms, except for being extra tired. I had another blood test last week and it is still weakly positive and also negative, there are 2 components they look at and I have one of each, but the positive is weaker than the last test. Yes, confusing!
I have to close this because my tablet is almost out of charge, but I promise to be back soon.
Love to all, Mary
0 -
Hello again,
To finish the RMSF story, I had a suspicious spot on arm which was why I asked Doc about it. Perhaps I should have taken antibiotics, but I suppose he didn't think I needed them. Puppy as well as this is probably why I'm tired.
Has anyone had a Covid19 test? I haven't, but they are offering them to anyone who wants one, they say. Our positive case counts go up and up as more testing is done. Asymptomatic cases showing up, for the most part.
We are now into our hot, steamy weather. We are getting lots of rain, thus the steamy.
I hope everyone is bearing up well, this is not turning out to be a very good year so far.
I was wondering if I will get to keep my dentist appt that is coming up in August. I read your post about your trip to dentist, everything is difficult now.
Time for a nap, thats what puppy is doing!
Talk to you later, love, Mary
0 -
Hi Everyone,
Just dropping by to say hello and hoping that everyone is doing as well as can be and most importantly avoiding the coronavirus.
Weather here in Vancouver is chilly and wet - very unusual for this time of year. Our co-vid numbers in British Columbia are very low with the majority of people adhering to the physical distancing and hand washing - not much mask use around our part of town - I am fine with that. I have not yet worn a mask, but I do carry one just in case I am ever in a situation that requires one. Having said that I do not go out into crowded places and my husband has been doing all the grocery shopping.
It has been over 1 month since I had my CT scan and would you believe I still have not heard the outcome - which is very annoying - I have phoned several times and apparently there is a backlog in the reading of the scans - so I am hoping that all is OK with my lung. I will be on the phone again on Monday just in case I have fallen through the cracks, as it were. I feel well and really have nothing to complain about apart from a stomach bug that I got in June which is finally getting better - taking extra probiotics and eating a very bland diet.
Life continues to be surreal and I have to keep shaking my head to remind myself that the virus is not a bad dream, but a reality.
Mary - hope you start to feel better soon.
Sylvia - hope that your mouth heals well and that Raymond continues to improve.
Gill - you sound like an avid gardener - I love gardening, but am really a beginner when it comes to shrubs and flowers - my big success this year was growing sweet peas - they are glorious and the fragrance is wonderful. My garlic is ready for harvesting, but it has been so wet here that I think I will leave them for a few more days to dry out, that is, if the dry weather we had today continues!
Wishing only the best for each of you. Stay safe.
0 -
Hello Mary,
Thank you for your post. It is so good to have you back on the thread.
I was sorry to read that you have a mild case of Rock Mountain Spotted Tick disease. I must admit that I have never herd of this but I shall be looking it up in my medical books. How does a person pick this up? Does it come from animals, insects or plants growing in Nature?
It is good that your doctor has said that it looks as though your body is clearing it on its own since you have no symptoms except for being extra tired. I was glad to know that it is weakly positive and also negative. Let us hope that it will be out of your system soon. Is it a bacterial disease? I ask this because you mentioned that perhaps you should have taken antibiotics.
As for testing here in the UK, I do not, if the truth be told, that much testing is going on and that much testing has been done during the past months. When we had daily briefings everything was so muddled and confusing that it was difficult to know what the government was getting up to. Their record since lock-down has left much to be desired. I have asked people working in sectors where they are at risk, whether they have been tested, and so far no one has. It seems testing has ben carried put largely on people showing symptoms. I think we are now in fourth place in the world for the number of deaths and even that number is not clear and I think it is probably much higher. All instructions from the government have been vague and forever changing. We have had an easing of lock-down, so we are told, but it is all rather a muddle and too many people are not keeping social (physical) distancing.
It seems now that people like dentists, podiatrists, doctors etc. are all functioning in the same way. This has been described in posts from me and Gill with regards to visits to the dentist.
Take care of yourself, Mary. Keep safe and get better.
By the way, I have just heard on the news that the statue of Christopher Columbus has just been toppled in Baltimore and thrown into the sea. I do wonder where we are going and what purpose this serves. A statue is pretty meaningless and in this country they just dirty, covered in birds' mess or defaced with graffiti.
Love.
Sylvia xxxx
0 -
Hello adagio,
Thank you for popping in. It is always good to hear from you.
I am not surprised that you have been waiting for over a month for the results of your CT scan. Everything has been put on hold because of the coronavirus. Keep on phoning to get your result. I know that here in the UK cancer patients have been much neglected and everything seems to be running late. I am sure there will be long waiting lists for years to come for all kinds of serious illness. I feel so concerned for those going through cancer treatment in this country at this time. It must be a nightmare.
I was glad to know that you are feeling well and I hope your stomach bug will soon disappear. The probiotics will help I am sure.
My mouth has healed and I am feeling fine. I am trying to do too many things in one day. I am still working my way through lists. It is quite difficult with some things because we no longer have a car and with social distancing friends and neighbours cannot give us lifts. We get some things delivered and walk to the local shops and into the town, but avoiding groups. We do not take the bus or taxis.
Raymond is doing fine but just gets a bit tired and fed up with a swollen foot where he had the saphenous vein taken out. Diuretics no longer serve any purpose and he stopped taking them a while ago because they make the blood pressure plummet and he does not need this because his bood pressure is normal. The diuretic is called Bumetanide. I do wish doctors with their pills would get away from the idea that one size fits all.
I have been working in the grounds this morning but we have strong wind blowing here (gale force) so it was quite tiring. Once again, we are desperately in need of rain but it just does not come. There are plenty of problems on the seafront here but we avoid it.
That is all for now. I do hope you had a Happy Canada Day.
I do hope we shall hear from 53Nancy, our Canadian friend in Manitoba.
Keep safe, keep well and best wishes to your husband.
Love.
Sylvia xxxx
0 -
Hello everyone,
The other book that I think makes essential reading for cancer patients is Anticancer – a new way of life by David Schreiber.
The other two books I mentioned are in recent posts.
If you are still looking, Hanieh, please post in and say hello. I know you changed your posting name but I cannot remember how to spell it, so I cannot find it.
Best wishes to all.
Sylvia xxxx
0 -
Hello Honeytagh,
I finally found your user name and I saw that you last posted on our thread on February 3 2019 and that you were still looking on the forum as recently as January 2020. We would so love to hear from you and to know that you are well and happy somewhere with your husband and daughter and still teaching English.
I am now past fifteen years since diagnosis and often think about you.
Love.
Sylvia xxxx
0 -
Hello Sylvia,
Apologies for taking so long to reply to your post. The archive has become far too busy of late as we have a new Cathedral architect who is taking a close look at all departments. We also have a young priest, only ordained last year, who is taking a keen interest! He's very clued up on Church artifacts apparently and has many criticisms and questions. Michael and I are doing a paid job for free, so we shall see where this is going. I expect that Raymond and yourself are very much in the same boat in your role at the housing complex.
Your information regarding the BBC4 programme was very interesting. I knew that slave owners were compensated after the abolition of slavery, but had no idea of the vast sums involved. The rich grew wealthier then on the back of the poor, as they still do today. The sheer cruelty of slavery and the lack of humanity isn't something we should ever forget. The concept of Empire and Britain's arrogance in its belief that vast areas of the world would do far better under our rule than any other is breathtaking. Naturally, we are now paying the price.
Various figures are being quoted in regard to the number of cancer patients who will die due to the NHS's concentration on Covid instead of the diagnosis and treatment of cancer. They state that it could reach 35,000 according to the BBC. The new Nightingale hospitals were greatly underused due to a lack of trained staff. The flagship Nightingale hospital has been mothballed for now, ready for use in the event of a 2nd spike of coronavirus. Surely the problem will be the same - insufficient staff. Cancer patients experienced long delays in surgery and cancelled surgery in many parts of the country before coronavirus, I dread to think what it must be like now.
With new spikes of Covid-19 in parts of Australia Kath probably has her work cut out for the next few weeks or even months. Like you, I wonder if in the end we'll just have to live with this virus and hope that it mutates into something less harmful. Also like you, I wonder what the result of people crowding onto our beaches will be. Norfolk has been spared the rush as the weather has been so miserable, cool with constant drizzle or heavy rain. I regularly check the two Exmouth webcams you mentioned some weeks ago to see how many people are out and about. You do have a beautiful beach there.
It was a relief to hear from Mary again, her tick bite seems to have had a serious impact on her health. Lets hope her body fights it off quickly.
I'm going to order the book you suggested a couple of weeks ago. No doubt this will now be a long drawn out process with the virus to consider. I shall also search for the book review of Johnson's time in office. It's going to make me very angry no doubt. Did you see Questions to the Prime Minister yesterday?
That's about all for now.
Keep well both of you,
Love,
Gill xxx
0 -
Hi Adagio,
Do you have the results of your CT scan yet? You've had a long wait, even taking into account Covid-19. Fingers crossed that all will be well.
My garden isn't particularly impressive this year. As you will know, garden centres were closed down. I sent away for seeds.Turns out that so did everyone else, as people acquired a much greater interest in gardening than pre-Covid. Unfortunately, the seed companies couldn't cope with the extra orders. Many of mine arrived long after they should have been sown. Being so late they're growing, but rather feeble looking in some cases. I don't actually grow garlic like you, but the milder wild garlic grows wherever it feels like it and I have to pull some of it up. I don't like garlic in my food at all but do like the beautiful flowers it produces. My potatoes are flowering so I'm forward to digging them up at some point.
Keep well and good luck with your results when they eventually turn up.
Gill
0 -
Hi Mary,
Naturally, I've had to look up Rocky Mountain Tick disease. It sounds horrible, looks it too, judging by some of the photos. Even what you believe to be a mild dose seems to have knocked you back - though your new friend can't have helped with your tiredness. No doubt he'll be excellent company and a faithful friend once he gets the rules straight, in the meantime he has a lot of energy to use up.
Services have resumed at the Cathedral, but only two hundred people are allowed in at any one time. Pews are marked with green ticks where we can sit and red crosses where we can't. Hand sanitisers must be used, no singing is allowed, though there's a cantor and we all have to leave quickly, no talking and no gathering outside. So, not a social experience at all and this will mean a lot more lonely people than usual.
Keep well Mary and get plenty of rest when the puppy has his naps.
Love,
Gill xxx
0 -
Hi everyone
Hope u are all well. It's been crazy here! Have just been in Sydney work out of St Vincent's hospital for 10 days helping out in a large TB cluster there with over 2000 contacts. Really interesting stuff. It's hotting up again here and we are try to put our spot fires for Covid. Victoria is being hit really hard but they locked the state down and we have been help out with contact tracing. Been frantically busy but its helped take my mind off of my annual specialist appointment and mammogram in Sept
Still doing well at uni and managed a credit for my epidemiology unit in the middle of Covid ha ha. Two subjectsleft and I'll be finished my Nurse Practitioner masters. Stay well everyone
Much love
Kath
0 -
Good work kath. TB? We don’t hear much about that. I live in Albury on the border of NSW and Victoria so we have got all the border controls happening and a couple of cases locally. Really weird times! Sounds like you have blitzing your studies. Well done, take care and good luck for the remainder of your course!
0 -
Hello Kath, HelenLouise and Gill,
I have read your posts with great interest and shall answer tomorrow, Sunday, when I hope finally to have some time to myself. It has been a hectic week and I am glad it has finished. I just wish we could get some rain here in Exmouth. It keeps passing us by.
Many congratulations, Kath. We are all proud of you.
Love to all.
Sylvia xxxx
0 -
Hello Gill,
Thank you for your latest post. I do understand how busy you are with your work and it is all done for no money. It is the same here in our apartment complex. The Directors are volunteers who have had to be elected and are unpaid for what is a full time job with a lot of responsibility and stress from trying to please everyone.
I agree with what you said about slavery and I do resent being held responsible for what was done in the past by politicians and powerful people. However, I cannot see that pulling down statues and destroying everything is going to solve the problem.
What is happening about the treatment of cancer patients is totally immoral.
As for Covid-19 I think it was mishandled from the beginning and will not be goinf away any time soon.
We are getting desperate for rain here but it just will not come here to Exmouth.
I have many things to do today so I shall sign off now.
I wonder when we shall see the changes that the Moderators have mentioned. I personally think there are too many forums and too many threads. A lot of them have not been used in quite a while and could be taken away and many could be merged.
Sending love and best wishes.
Sylvia xxxx
0 -
Hello Kath,
Thank you for popping in, especially as you are so busy.
What do you think has caused a cluster of TB? Tuberculosis was supposed to be an illness of the past in Western developed countries, but now we have it back and it is supposed to be more virulent. I think most of our problems come from overpopulation, especially in England, and especially in the big cities where there are crowded living conditions and poverty.
I do not think we are out of the woods yet with Covid-19 and I expect it to get worse. Our government has messed up from the beginning.
I do hope all goes well when you have your annual specialist appointment and mammogram in September.
Congratulations on doing so well with your university studies.
Sending love and best wishes.
Sylvia xxxx
0 -
Hello HelenLouise,
Thank you for popping in. it is always nice to hear from you and to have news about life in Australia.
Keep safe, keep well.
Love.
Sylvia xxxx
0 -
Hello Sylvia,
I noted from the Exmouth webcam that you had some much needed rain yesterday. We've been having something akin to April showers here. Humidity levels are high and trying to dry the washing outside is very difficult.
I agree with you that some threads on the site could be merged. Other threads have been inactive for a very long time and need to be removed as newcomers sometimes post on them by mistake without noticing the date of the last comment. The site was taken down for routine maintenance about ten days ago which has improved the speed of submitting comments and editing.
A friend who has had triple negative breast cancer in both breasts telephoned me yesterday to say that following her annual mammogram a few weeks ago, the usual letter from the hospital letting her know the results, failed to arrive . Apparently, these letters are no longer being sent in her trust area (Hertfordshire), unless a patient needs to be recalled. My friend has complained and will insist on having her negative result in writing. I don't know if anyone else has experienced this? The problem of not being properly informed in writing, is the vast amount of patient information that is lost by the NHS. My hospital notes were full of mistakes and omissions. I would always check and insist on scan or mammogram results in writing.
Sadly, the Covid crisis will provide Johnson with the excuse he needs to explain away the long delays in cancer treatment for years to come. Some people will be forced to pay for surgery, others simply won't be able to afford it. So many cancers are treatable if they are caught early, money shouldn't be a factor. I agree with you, these delays are immoral, but will suit the Cummings/Johnson agenda no doubt.
That's all for today, don't forget to take a rest from your many chores from time to time.
Best wishes to Raymond.
Love,
Gill xxx
0 -
Hello Gill,
Thank you for your latest post. We did indeed have some well-needed rain yesterday but we do need a lot more. The rain that we are having is not what I call serious rain! It has been humid here too.
I have not noticed any increased speed on the forum and no change in anything except for the colours. I do agree with you that some of the threads could be merged and that those inactive for a long time should be removed. Like you, I have noticed that someone will suddenly post on a long inactive thread as though the post before was recent when it could have been years before. How can a poster be so unobservant? I have also noticed that on the Active Topics there are not as many pages as there used to be. Is everything suffering from Facebook and Twitter?
Like you I am very concerned about the way cancer patients are being neglected here in the UK. I was interested to read about your friend who has had breast cancer with triple negative receptors, had her annual mammogram a few weeks ago and has not received a letter giving her the results. I feel strongly that patients have a right to receive a written letter stating the results of any part of their treatment. It belongs to them. It could be that everything is in such a muddle that post is taking longer. The letter could have gone missing but I do not think it is acceptable for a trust to decide that nothing will be sent to a patient unless that patient needs to be recalled. I think your friend is right to complain and insist on having her result in writing, good or bad. By the way, I was wondering what kind of breast cancer your friend had. Was it the most common one, invasive ductal carcinoma (IDC) or was it one of the less common ones?
I do agree that mistakes are also made with patients' records. Raymond and I have had this at our GP surgeries and Raymond had this during his hospital stay when we discovered that on his records it said that he was allergic to the flu jab. We pointed this out at both the RD&E here in Exeter and the Hammersmith hospital in West London. Nothing was done and we were told to get it changed at our GP surgery. We put this in writing but we still have had no confirmation that this had been done.
Some years ago at the surgery they mixed up Raymond's records with someone in Essex and I had to go to the surgery, insist on seeing the manager and getting them changed. Mine have also had wrong information on them.
I think the NHS has become too bureaucratic and splintered and one half does not know what the other half is doing. I think all patients have to be on red alert with every aspect of their treatment and medication! Our bodies belong to us and nobody else.
I think you are right that the Johnson government will blame all their failures and ineptitude on the coronavirus. Their arrogance is beyond belief.
I am disappointed in how slow the thread is compared to how it used to be.
It looks as though Mary is not posting like she used to do and really the two of us Brits are keeping things going. There are still lots of views, but a thread will not survive without posters.
I do wonder what has happened to Honeytagh (Hanieh). I sent her a PM but there has been no response. I do hope that, in these troubled times, she is safe and well, wherever she may be. I do hope Marias is safe and well, also, because she is in a much troubled country.
It was good to hear from HelenLouise, Kath and adagio, but such a small group will not keep the thread going.
It has been a stressful time here at our complex because of the coronavirus which has disrupted the usual routine. Raymond and I have carried on making sure everything gets done while keeping to social distancing.
This afternoon we finally sat down and caught up with some programmes on BBC iPlayer. We caught up on the three episodes of Talking Heads that we had missed out of the twelve. We found them all excellent. We particularly enjoyed a Chip in the Sugar with Martin Freeman and the Dog Outside. All of them are so profound.
We also caught up with the second part of Being Beethoven on BBC4 and are looking forward to the third part next week. It was so nice to have some nice music.
I still have a list of jobs but it quite a bit shorter. This morning we did some household chores.
I have had to be careful what I am doing as I burnt my arm on the top of the stove ten days ago and have had a nasty burn. It is much better now.
I try to make sure that Raymond does not overdo things as he is still having problems with his right leg where they took out the long vein for the bypass surgery. I do not think the swelling in his foot and ankle is oedema any more. I think it may be more like lymphoedema and that the lymph system was perhaps damaged when they removed the vein. The lymph is very close to the blood vessels in the body. Our podiatrist seemed to think this was entirely possible.
Thank you for all your interesting posts. Perhaps when life gets more normal and we go into town more we can wave to you from the town centre.
Do you think that, with the latest rules about mask wearing, we are going to see the panic buying that we saw with toilet paper back in March?
That is all for now.
Best wishes to Michael.
Love.
Sylvia xxxx
0 -
hi I'm new to the site and was hoping for a im 48 years old had breast cancer 10 year ago and have had a recurrence in same breast same site but this time it is triple negetive, tumour is 7cm and inoperable, I'm having paclitaxel weekly to try and shrink tumour but oncologist said she expected to see better results when examining me baring in mint I've only had 2 cycles?? My question is if chemo doesnt shrink tumor will they still try and remove the tumour???
Its invaded the muscle behind and attatched to my chest just beside armpit???
0 -
Sending you hugs, Borolass. The chemo can be very effective in shrinking the tumor. What does your medical oncologist think? Have you thought to also get a second opinion? We're all here for you.
0 -
Hello Borolass,
I have just read your post and wanted to say that I was sorry to read that after ten years you have had a recurrence in the same breast, but that this time your tumour status is triple negative. I was diagnosed with triple negative fifteen years ago and had a large tumour. It was 6+ cms. I was certainly not told that my large tumour was inoperable. I was told that I needed six months of chemotherapy before surgery in order to shrink the large tumour and make surgery easier.
I had three months of epirubicin (Ellence) with cyclophosphomide and then three months of docetaxel (Taxotere). Paclitaxel (Taxol) and docetaxel (Taxotere) are said to be very effective against breast cancer with triple negative receptors.
You have not said what kind of breast cancer you have this time. Is it the most common one invasive ductal carcinoma (IDC) or one of the less common ones?
It would be helpful to have details of what kind of breast cancer you had the first time around. Did you have surgery and what kind?
Have you been taking anti-hormonal medication for the past ten years? Things such as tamoxifen or Arimidex. Women are often kept on these drugs for five to ten years and I have read that long-term use of tamoxifen can cause triple negative receptor status breast cancer.
My large tumour did shrink a bit but it did not disappear completely. However, I was able to have surgery and I had a mastectomy. I had the surgery a few weeks after finishing the six months of chemotherapy.
I am not a doctor but I would think you would eed more than two cycles of weekly paclitaxel to see some results.
Finish your chemotherapy, see what the result is and what is being offered. If you are told they cannot operate, then you must ask why. I would think the whole reason for trying to shrink the tumour would be to offer surgery when it is finished.
You can always ask for a second opinion.
Take one day at a time and be optimistic.
Sending you love and best wishes and to tell you that I am thinking of you.
Sylvia
0 -
Hello Sylvia,
I'll write a fuller reply to your post after the weekend, I'm snowed under with things to catch up on.
I went to the Norfolk and Norwich Hospital this morning for my Zoledronic acid infusion. The chemotherapy unit was locked up and in darkness. Eventually I managed to find a member of the office staff and explained that I had an appointment. I was told that the unit had been transferred to the private Spire Hospital and they no longer did Saturday treatments in any case. Why wasn't I told for heavens sake? I'd been led to believe that cancer services had now returned to normal - clearly they haven't! I had a blood test at the hospital on Wednesday and asked if appointments were being kept and was informed that I would have had a letter if mine had been cancelled. Chaos!
Take care Sylvia.
Love,
Gill xxx
0 -
Hello Borolass,
Sylvia has said everything that I would have said and more. Chemotherapy is generally considered to be extremely effective in reducing the size of triple negative breast tumours. However, you are clearly very worried and confused - ask your oncologist for a full explanation or seek a second opinion. I found a second opinion from an experienced oncologist to be well worth it, just for the peace of mind.
Good luck and let us know how you are doing.
Gill x
0 -
Hi Sylvia, Gill and all - I finally got the result of my CT scan - the good news is that there is no metastasis - the lung infection on the left has resolved - but there is now crushed glass opacity in the right lung. Apparently I have calcification of the aortic valve which they did not mention on the previous scan - I plan on talking to my GP about this soon. I have to repeat in the scan in 6 months time - I am grateful that there is no mets and I certainly feel well enough.
Borolass - so sorry to hear about your recurrence after all these years! You mention that the tumour is on the chest wall - mine was very close to the chest wall and they were not able to get clear margins - but the surgeon said that not much could be done other than cutting into the chest wall and that was not an option. This really scared me at the time, but I have learned to live with it. Wishing you well as you proceed with the Taxol infusions. Did you have chemotherapy 10 years ago?
Sylvia - hope your arm heals soon from the burn.
Gill - that is so annoying going to the hospital to find out that your appointment had been cancelled - very frustrating.
Keep safe,
0 -
hi
Happy Sunday everyone. Hope u are well? I'm ready for a big week screening given the community acquired transmission that seems to be occurring in Australia now! We have been told to ramp up swabbing and we have pop up and drive in clinics every where.
Victoria is getting hit really hard and the states are pushing border closures which I believe don't work! We should be ramping up swabbing, policing distancing and symptoms screening. Border closures lull people into a false sense of security. I understand cohorting cases together and locking down hotspots but border closures are a waste of time. It's going to be a madly busy week which is good for me because I'm beginning to panic re Septdrs appointment. Hate that feeling! Thought u might like to see a bush sunset .Stay safe everyone
Much love
Kath
0 -
0 -
0
