Calling all triple negative breast cancer patients in the UK
Comments
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Hello Everyone,
I was just wondering if you have any thoughts, those of you who have finished treatment, on anything you wish you had done differently abouit your treatment. Do you have any tips or words of wisdom for the newly diagnosed? Do those of you who have a faith feel that it helped you through treatment?
Best Wishes to all of you,
Sylvia.
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Hello christina1961,
I just wanted to say that I have been looking up Dr Stephen Gould and I have found the information very interesting. I see that he was an evolutionary biologist and paleontologist. That book The Medium is not the Message sounds very interesting. I read about his two bouts with cancer. He surived for a very long time, from a first diagnosis in 1982 to death from metastatic cancer in 2002. That first diagnosis was mesothelioma, lung cancer. He sounded like he was a most remarkable man.
Thanking you for a learning curve today.
Sylvia
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Hello everyone
I had my usual newsletter from the Better Bones Blog by Dr Susan E Brown, PhD. I thought you would be interested in this latest one, because it is about vitamin D and vitamin D levels in your body. We all know that we should be keeping an eye on our levels, as there apparently is a connection between low levels or deficiency and the development of breast cancer. I do not know if it is easy in the US to get this measured, but I do not think it is easy in the UK. In the Better Bones Blog it is stated that you can buy a vitamin D at home test kit for $65 from the Vitamin D Council. If you want to read more, the links are as follows:"Better Bones tip:
I always recommend that you check your vitamin D level. But I know it's not always easy. Well, now it's possible to get an at-home vitamin D test kit for only $65 from the Vitamin D Council."http://www.zrtlab.com/vitamindcouncil/?
We all need to remember that breast cancer treatment affects the bones and can lead to osteoporosis. If you are hormonal positive, post menopausal you will probably be taking and aromatase inhibitor, such as Arimidex, that does affect the bones. I am not sure about Tamoxifen but this drug does have all kinds of side effects, so it probably affects the bones. These drugs are certainly not harmless. Tamoxifen can apparently cause eye damage if high doses are taken for long periods.
You might be interested to know that the common side effects of Tamoxifen are nausea/vomitting, hot flushes, irregular vaginal bleeding and discharge. Rare side effects are bone and tumour pain, rash/itching, blurred vision/headache, calf pain/swelling.
There is a small risk of endometrial cancer (cancer of the uterine lining) so you should notify your doctor of symptons such as irregular vaginal bleeding.
These drugs do not sound like a picnic to me!
Best wishes
Sylvia0 -
Hello everyone
I hope that everyone reading this thread will remember that last week I posted information from the Good Health section of the Daily Mail about how Dr Martin Scurr (Good Health's GP) revealed that if faced with advanced terminal illness, he would not go through gruelling treatment and would opt for a pain free end of life.Yesterday I was reading this weeks Good Health section and discovered that the doctor's article had drawn a huge response. A lot of people praised his courage and honesty. What I remember from the previous article was that many doctors prescribing cancer medication to their patients would not take it themselves.
Yesterday, three people with terminal illnesses wrote of their own experiences.
One was a woman of 44 who was diagnosed with advanced ovarian cancer five years ago and was told that she might live five years but perhaps only one or two. Last year the ovarian cancer had spread to the pancreas, stomach and lymph nodes. It was due to chemotherapy treatment that she is still alive a year later. She knew that chemotherapy was keeping her alive but wondered if she would always have the strength to take more chemotherapy. Obviously, Dr Scurr's comments interested her greatly.
She wrote of all the chemotherapy that she had had, of the sickness she had endured, of hair loss, terrible aches and pains and diarrhoea. In December 2010 she described how she suffered the worst side effects ever, diarrhoea, cramps, appetite loss, nausea and exhaustion. She described how sometimes she could not get out of bed and felt that death would be a relief. It was the thought of her children that made her keep going.
For this woman chemotherapy was worthwhile because it gave her more time with her family and her family more time with her.
Last March her cancer returned with a vengeance. She started more chemotherapy last July even though she knew it could kill her. She also knew that without it she would die.
This woman did not agree with Dr Scurr and thinks you cannot generalise. She has obviously survived all that chemotherapy.
I believe that it is up to the individual to decide. Faced with such a decision I am not sure how I would react. Given that I have read that in the end the treatment fails and the medication kills you, I think I might opt for Dr Scurr's route.
The second case was about a young man with terminal brain cancer, diagnosed two years ago. Among his treatment was six weeks of combined radiotherapy and radiotherapy. Last year, after another operation, he decided not to have any more treatment. He decided that it was not worthwhile having any more treatment if he was too tired to participate in everyday life. In the meantime, he is enjoying whatever time he has left with his family.
The third case, which will be of particular interest to all of you, is about a woman in her forties, diagnosed with metastatic breast cancer in 2005.
Last year, her doctors told her that she had less than a year to live and she had a sense of relief because she knew what she was dealing with. In 2005 she had been diagnosed with a grade 3 cancer. Mastectomy and chemotherapy followed, but in 2007 the cancer returned and last year it had spread to the scalp, left collarbone, shoulder, armpits, lungs, ribs,spine, sternum, liver and pelvis, and at that time she was told she had a year to live. This woman decided to continue with treatment, despite the hair loss, the sickness and the tiredness.
In August 2010 she started on a new drug called eribulin (Halaven). This will be of particular interest to christina1961, because she has just finished an eribulin trial. This woman had the good fortune to be at The Christie Hospital in Manchester, which is one of only a few NHS trusts in the UK that funds this drug.
The good news is that her tumours have shrunk, the ones under the armpit have gone and she is in remission. She knows that she will never be cured but she feels that she has been given extra time.
In the UK women who think they can benefit from eribulin must make sure that they get it from their doctors, even if they have to take their PCTs to court. Never forget the fight women put up in the past to get Herceptin.
If you want more details the link is:
The woman with breast cancer did not mention what her receptor status was. However, given her age and grade 3 aggressive status, and since there is no mention of hormonal treatment, it could well be that she was TNBC.
It is strange that there was no mention of radiotherapy. I think you need it after chemotherapy and surgery to mop up any stray cells.
For those newly diagnosed, do not think that chemotherapy will necessarily be that harsh for you. For some reason it was not that harsh for me. I did of course lose my hair, but apart from that I was just more tired than usual. A lot of what you experience with chemotherapy could be connected to how healthy you are before you begin.
In the Letters section of the Daily Mail on the same day, I read a letter from a woman whose husband has just died. She was writing to say how much she appreciated Dr Scurr's complaints about the heavily invasive treatment offered to patients with life threatening cancer. She then gives a very detailed and moving account of the agony her husband endured after being diagnosed with oesophageal cancer. He went through a year of agony.
I was wondering whether those of you reading the thread have any strong views one way or the other about all of this.
What we urgently need is a way of treating this disease and making it treatable as a chronic disease, but without all the devastating side effects that the present treatment causes. I do not believe there will ever be a magic bullet.
Best wishes
Sylvia0 -
Hello Everyone,
I am posting the last pieces of information that I have found this week This is by Steve Connor, Science Editor in Vancouver. It is entitled 'Cancer will never be eliminated'.
'There will never be a single cure for cancer and although its incidence will gradually diminish, it will never be entirely eliminated, according to Britain's top scientist.It goes on to say that scientific advances have helped to understand the fundamental mechanisms that turn a cell cancerous a universal cure is not possible because cancer is so many different diseases.
If you want more details see the article in The Independent on February 21st.
Best Wishes,
Sylvia.0 -
Hello Again Everyone,
II just wanted to say that , according to an article that I have been reading, ginger is the great helper in helping with chemotherapy. We have written about this often, but it is great to read it in 'Under the Microscope' by Professor Justin Stubbins in the Daily Express for February 21st. Lab studies suggest that ginger contains chemopreventive and or anti cancer properties. Please read the article,
I took all kinds of ginger through treatment and I do not remember chemotherapy as awful as some have found it on these threads.
Best Wishes, Sylvia.
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Hello yet again,
With all the discussions going on about ionising radiation I just wanted to say that we all know that it causes cancer and I think we should subject outselves to it as little as possible It may well be that we are having too many mammograms, too many CT scans and too many bonenucleide scans.Have them only when absolutley necessary. I had two before treatment and two afterwards, and none since in nearly seven years. I think they are used sparingly in the UK.
Sylvia.
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Sylvia,
It is very encouraging to read the woman's response to eribulin! I hope it has done the trick for me if I had any cells floating around. Now is the time to rebuild my immune system.
My father had inoperable esophageal cancer at the age of 83. He was otherwise very healthy and opted to do the most aggressive chemotherapy available. He went into complete remission for two years and enjoyed gardening and all the things he loved to do. (The cancer was too close to his aorta to remove.) His will to live at age 85 was as strong as mine is now. His courage and hope during this awful cancer, with feeding tubes and all, taught me so much. I cannot feel sorry for myself very long after seeing what he endured without complaint.
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Just to quickly add on to what Sylvia was saying about ginger...although I found it very helpful for my first 2 cycles in the form of tea, biscuits, caremellised ginger, etc, by my third cycle I couldn't bear the sight or smell of it..it was obviously associated totally with chemo, in my mind, and that feeling of disgust carried on until quite recently (I finished chemo August of last year). So, as with everyhting else, we are all individuals and react differently to things. Just as our own side effects can differ so much from one chemo cycle to the next!
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Hello christina1961
Thank you for your post. I thought you would be interested in the article about the woman and eribulin. Yes, it is encouraging and I hope it has done good work for you.I agree with you that you should now concentrate on rebuilding your immune system and I am sure that you will do this.
I do agree that there are much worse cancers than breast cancer, even the TNBCs. I can understand how you must have felt about your father and his inoperable oesophageal cancer. I think that anything to do with the throat and oesophagus is absolutely awful. My uncle died at the age of 83 with throat cancer, on the tonsils. My uncle refused all treatment. He ended up not being able to eat any solid food and was on tube feeding. He longed for a cup of tea but could not have it. He became skeletal after being such a healthy, strong and fit man. It made me realise that my own cancer was relatively easy to deal with, compared to his. Like your father, I heard no complaints from my uncle.
I do hope, christina1961, that you will get yourself strong and fit. I know that you are thinking of going on Tamoxifen, but I hope you do not have to do it straight away. Are you still thinking of having reconstruction. That is something else that requires careful thought.
You and bak94 have been through a lot this year. You have had a double session with chemotherapy and bak94 has been going through the cancer journey for the second time. She too will need to recover from everything and build up her immune system. If you are reading the thread, bak94, please let us know how the radiotherapy is going.
Best wishes
Sylvia0 -
Sylvia,
I found a great link to an article about diet for breast cancer patients
http://www.healingcuisine.com/pdfs/Breast_Cancer_Paper.pdf
Sylvia, I am so sorry about your uncle. It is so distressing to see the weight loss and pain. I am fortunate to have two very wonderful siblings. We took shifts caring for Dad during the months he was at home and going through chemo, but at the end it was my sister who stayed at the hospital with him as she doesn't work.
I am still considering reconstruction. The doctor wanted to do lat flap reconstruction but I am extremely hesitant to do that as I already have some upper back issues. The lat muscle, while thought of as not essential, does contribute to posture by pulling back the shoulders from what I understand. My problem, like many of us, is the hunched posture that seems to develop with age and years at a desk and computer. I am going back in to see the same plastic surgeon next week to see if he will consider doing implant reconstruction. I had saline implants placed in 2003 and never had any problems with them at all. Even if he could bring me with expansion only to an A cup - what I was before implants - I would be happy. It is very hot in the summers where I live and I like to wear sleeveless shirts as much of my work is outside. Also I don't want the heat of the prosthesis if I try to start running again. Alternately, I've thought about removing the other implant which would let me use a much smaller prosthesis and maybe even not have to wear one at all in certain shirts. If he agrees, I will have to wait until September or so to start the process.
Bak, I hope all is going well with your radiation!
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great article christina, thanks for posting
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Hello christina 1961,
Thank you for your post and all the information about reconstuction. That will be of great value to others thinking about all this. I can understand your concerns about becoming hunched over and posture. We all know the problems with osteoporosis and bones after breast cancer treatment so we have to give careful thought to everything we do.
As you know I am not in favour of reconstruction, but I do understand why women would want it. I am afraid of what will happen to how I shall look in time with osteoporosis. I do not believe that Fosamax is the answer.
I hope you have a great week.
Best Wishes,
Sylvia.
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Hello cupcakies,
Thank you for posting and a warm welcome to this thread. I do hope all is well with you. Any information you can give us about your own experiences with breast cancer will be most welcome.
Best Wishes,
Sylvia.
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Hello Everyone,
I hope you have all had a good weekend and that the coming week will be great for you. Spring is in the air in Exmouth and the bulbs in the grounds are shooting up everywhere and their brilliant colours are a joy to see,
I have just received the latest newsletter from Cancer active, but need to read it more carefully before doing a post.
Best Wishes,
Sylvia.
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Hello christina1961 and any others viewing the thread.
I have just read through all the pages of the link Healthy Cuisine that christina1961 so kindly provided. I was very familiar with what I read and it does make very clear reading. If you read back over the pages of this thread and the various information provided, you will see that we have covered a lot of what is on the link Healthy Cuisine.These are some of the snippets that I picked up. There appears to be an overwhelming link between diet and breast cancer prevention. 33% to 50% of breast cancers appear to be preventable by diet.
I have often said that we all react differently to our breast cancer treatments and a lot of how we cope is to do with the state of our bodies in the first place. Dr Susan Love from Breast Cancer - Beyond Convention, says "The cells around cancer cells and the general state of the body, influence their capacity to survive". I take this to mean that the poorer the state of your body the harder the struggle to defeat cancer cells.
We must all remember something important from this link, which is that recurrence of cancer does not automatically condemn a patient to sickness and decline.
We must also remember that the latest statistics state that one in eight women will develop breast cancer in her lifetime and one quarter will die of it. You might be interested to know that white women in the San Francisco Bay area of California have the world's highest rate of breast cancer - double that of Europe and five times higher than Japan. Apparently 15 years ago this area led the world in oestrogen prescriptions.
Invasive ductal carcinoma is the most common of the breast cancers and receptor positive is also the most common.
Apparently genes play a minimal role.
According to the information on this link, there are two treatments for breast cancer. They are medical treatment and Self Care. You have to promote your own overall health, strengthen your immune system and your cancer-fighting defences.
All the possible risk factors connected to the development of breast cancer are on this link. These will be very familiar to all of you who have been following this thread since its inception nearly eighteen months ago. Some of them are things like age at which you started your periods, age at which you started menopause, not having had children, being on the birth control pill, being overweight etc.
You will be interested to know that apparently two thirds of women use alternative therapies. 50% of women take vitamins and minerals, 25% take herbal remedies, 17% take green tea, 15% take Essiac tea. The usual spices such as ginger and turmeric are quoted. The herb dandelion is also mentioned.
The list of things beneficial to the prevention of breast cancer, apart from diet, where the emphasis is on fruit and vegetables, and away from animal products and dairy products. There is also the emphasis on high fibre diets, macrobiotic diets, vegetarian diets, with an emphasis on soy foods such as tempeh, tofu and miso. Again, all of this will be familiar to those of you who have been following the thread. With reference to diet, alcohol needs to be very limited, as it increase oestrogen. Less fat means less oestrogen, more fibre means less oestrogen, high cholesterol means high oestrogen.
There is more information about bad fats such as transfatty acids, saturated fat, and high animal fats, as well as the risk factors in too much protein. You can see that our western diet has much that is not good for us. We all know on this thread that sugar promotes cancer cell growth.
Apart from diet, I think we all know by now that exercise is important in the management of cancer prevention. We all need to stay as active as we can.
The next facto mentioned in this prevention is stress management. We all need to worry less and relax more in order to keep our levels of the stress hormone cortisol low.
Finally, there is mention of group support. I think this is very important, especially when going through treatment. In the UK you can get great support through Hospicecare, through joining or starting a local support group or joining a group like ours on the internet.
I do urge you all to read Healthy Cuisine and it would be nice if you posted some comments. If you have finished treatment, it is still a kind gesture to support others and give information. Remember how grateful you were to have support. We must pass it on.
That is all for today. Thank you christina1961 for this link.
Sylvia0 -
Hello mcrimmon324(heather),
I was interested to know that you have started taking Metformin and that you obtained it for weight loss, but not specifically for breast cancer prevention. What kind of dosage are you taking? I was surprised to read that you could get it for free in a grocery chain in your neck of the woods. Are they giving it to anyone or do you have to be a diabetic? I know it is very cheap anyway, but I still think you have to be vigilant about taking medication. Statins are another cheap drug that the experts are working on giving to everyone.
I noticed that you can get Metformin if you are ER+ and PR+ but not HER2- according to something I read, so not specifically Triple Negative.
Best wishes,
Sylvia.
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Hello christina1961,
I have just heard on the radio a programme about clinical trials. I was disappointed to learn that only 50% of trial results are published and how unethical this is. It was stated that all results should be published and that those participating should at least be told as they have taken risks by putting themselves on these trials. What do you think?
Best Wishes,
Sylvia.
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Hi Slyvia,
Yes, My primary Dr. was able to write a prescription for Metformin for me. I take 500 mg 2 x a day which I believe is a low dose. I go back in 6 weeks for a follow up and will ask him to up the dosage to the norm then. 875mg 2 x a day, I believe.
Publix is a grocery chain in Florida and some southern states. Anti-biotics and Metformin are free of charge but you need a prescription from a dr in order to get them. So I guess it doesn't matter what it's being prescribed for as long as you get it from a dr.
What's a statin? I'm drawing a blank.
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Hello everyone
I have now had the time to read the latest newsletter from CANCERactive (Chris Woollams). There is so much information on these newsletters that I do recommend that you sign up for them and then click on the main headings.
I also think that Chris Woollams' blog entitled "Junk Science?" is a must-read for all thinking and information seeking people. On one of his blogs about mammograms, over 7,500 people wrote to him praising the blog. There are at least two new articles every month on his blog on cancer and other health issues. He writes them in response to something he has seen in the news or a new piece of research. In January he wrote about Steve Jobs and his death from pancreatic cancer. Read this and you will discover that apparently it was not the common type of pancreatic cancer. In this article Chris also spells out what exactly constitutes alternative treatment and shows the difference between alternative treatment such as Localised Hyperthermia for breast cancer tumours and complementary therapies such as acupuncture and juice fasts.
The other article in Chris's blog this month is about statins and about the risk of development of diabetes when taking statins. Please see the blog for details.
The link for the newsletter and the blog is:
http://www.canceractive.com/index.aspx
My own personal view is that you get good unbiased information.
When I was first diagnosed I subscribed to icon magazine, after first discovering it at the hospital where I was being treated. As I moved away from my diagnosis date I did not renew it. I have today taken out a new subscription and I shall receive four magazines a year. I opted for the Gold subscription and my money will go to the CANCERactive charity. With so much going on I want to keep up to date. In the January 2012 issue there are articles from five professors and two doctors on Tomorrow's Cancer Treatments. There are special features on breast cancer, colon cancer, brain tumours and prostate cancer. I shall await this issue with great interest.
I noticed that there are very few posts lately and so I am wondering whether the need for this thread is still there. I started it because I thought that there was a need for support and information for Brits with TNBC, but I now feel that perhaps they do not need this thread. Perhaps the newly diagnosed now have all the information and support they need. Judging from breastcancer.org, it seems that TNBC is getting more activity than the other forums. It is well and truly out of the dark ages.
Best wishes to everyone
Sylvia0 -
Sylvia, I agree that all clinical trial results should be published. I remember reading about the limited nature of trial result publications in reference to antidepressant studies that failed to support the efficacy of antidepressant therapy. I also found this link in regard to this issue:
http://clinicaltrials.ploshubs.org/article/info:doi/10.1371/journal.pctr.0010031
The Icon magazine sounds very interesting. I will have to look for that. Is it published in the UK?
Bernie, are you out there? Hope you are doing well.
Sylvia, I hope we will have more activity on this thread soon. I have found lately that I need to take longer breaks from the board in general because my fear of recurrence has been bothering me. I am feeling much better every day now and have walked for about thirty minutes for the past three days. Today I had a pain near my collarbone on the breast cancer side all day and I was so worried. I only finished chemo 10 days ago so I haven't had time to lose the muscle and bone aches yet, either, so hopefully it will go away in a few days. I have also been much more active, cleaning and carrying things so it could be muscle strain.
Hope everyone has a great week!
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Hi I havent contributed to this discussion since joining. As I said I live in Ireland and do not come across many other TNBCs.I have been reading all the links and found them very interesting.
I have luckily been quite busy with family stuff and events at the support centre. My friend and I took the plunge and after 18 months had our hair dyed. I was reluctant for many reasons but felt that I needed to get away from the grey look for my own confidence. Used natural dyes but they still seem to have stuff in them I not sure about. Looks quite dark and maybe too harsh but glad that I did it.
I recently have been experiencing alot of pain in the breast where cancer was. I am already on pain patches for residual pain but this was alot worse. My gp referred me back to my surgeon and I am waiting for an appt. One thing that I would say is that in my own experience with TNBC I was discharged from oncologist directly my chemo finished and therefore felt that I was set afloat on a big ocean with only a tiny piece of wood to cling to, very scary .There are no guidelines apart from check check check, but for what? is my continual question.Each time I meet a different doc or my surgeons registrar I have to explain to them re TNBC. Sometimes I feel that maybe I am wasting their time with my worries and fears, but thankfully with the support of my cancer centre I realise that I am quite entitled to question, check and query. That is the advice I would give to anyone and that is never hesitate to question or query! Never feel that you are a nuisance or a time waster.
The centre recently started a man to man cancer group, facilitated by a consultant oncologist and next we will have one for the women hopefully chaired by a consultant breast cancer surgeon. We are hoping that this will be the beginning of a forum for self help tips and an on going forum for all those questions big and small that somehow you cannot get answers to.
Sorry for the length of this ,its good to write things down. Fingers crossed that I get to see my surgeon soon and that all be ok
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Hello christina1961
Thank you for your post and thank you for the link, which I shall have a look at a bit later. I think there is a lot of politics going on behind the scenes with reference to trials and their publications. It may sound cynical but, like many things in life, money and profit is behind it all. I remember reading that the person who was behind Herceptin had a struggle to get it approved. If I remember correctly from the programme to which I was listening recently, all the problems with thalidomide could have been avoided had there been more openness. I think a doctor discovered the problems about limb loss with this drug but it was all suppressed. With reference to breast cancer, or any cancers for that matter, I think we should have moved on by now, from chemotherapy and radiotherapy. These are pretty barbaric treatments and in themselves cause cancer! Perhaps that is why we have recurrence, metastases and new primaries.I know you are a thinking person and are doing all you can to help yourself, so I am sure that you would find icon magazine of great interest. I am sure, if you go to the CANCERactive web site you will find how to subscribe from the US. There are four magazines a year and you pay a donation really to help the charity. There is a gold and a platinum subscription and both offer different privileges. I have just paid £36 for a gold subscription. It is published in the UK and for some strange reason the title of the magazine does not have a capital i.
Bernie, may I echo christina1961 and ask where you are. Please let us know you are OK. Even if you do not feel like posting too much, but are viewing from time to time and finding information interesting, it is good just to say so. I do understand that you need to take breaks. I think it is very unhealthy to become too obsessed with your breast cancer. You have finished your treatment and must try to lead a normal life.
I do understand, christina1961, that you need to take longer breaks from the thread and lead a normal life, because some of the reading can be frightening and discouraging. I can understand your fear of recurrence, but that fear will diminish as you get further away from your date of diagnosis. Everything is very recent for you, and so your feelings will be pretty raw, especially as you have had a double dose of chemotherapy.
I am glad to know that you feel better every day and that you are getting out for walks. I can understand that you worry when you have unexplained pain. The best thing when this happens is to get it investigated and get it over with. Nothing will be solved by worrying and worrying only magnifies it and wears you out. If the pain in your collarbone is still bothering you, please get it checked. As you say, you finished chemotherapy just ten days ago, so your body will still be suffering from the treatment.
Remember not to overdo things. Keep busy but be busy with things that bring you relaxation and pleasure.
I do hope that you will soon spring back from the chemotherapy and put it all behind you. You are an important part of this thread and have made a great contribution. I do not read many of the other threads these days because I find it too overwhelming. I think there are too many forums and too many threads and that they could be narrowed down substantially to make everything less confusing.
Wishing you all the best. Take great care.
Sylvia0 -
Hello linali
Thank you for your post. I was wondering what had happened to you and whether you were all right after your first post. I was very glad to know that you have been reading all the links and found them very interesting. As long as this thread is of interest to people, it is serving a purpose.It is good to know that you have been busy with family stuff and with the support centre. Keeping active and keeping your mind busy is as good as a tonic. I am sure that getting your hair dyed and thereby boosting your confidence has done you a lot of good.
I hope you do not have to wait too long for an appointment to see your breast cancer surgeon, as we all worry about any pain that we have. I must admit that I am surprised you are being refereed to your breast surgeon by your GP. I would have thought that you should still be under the supervision of your breast surgeon and your oncologist and that you would be phoning the hospital. Here in the UK it is usual to have three-monthly check ups straight after finishing standard treatment. You alternate between the oncologist and the surgeon. After two or three years you go to six-monthly check ups, again alternating between the oncologist and the consultant surgeon or their medical assistant. These check ups are just physical ones with the medic looking for any roughness over the breast area. These check ups are a good opportunity to discuss anything that is worrying you. It is up to you to mention anything that is worrying you or that you think is abnormal for you.
After standard treatment you should also be having two-yearly mammograms.
Before and after treatment in this country, we have CAT scan and a bone nucleide scan.
I am surprised that by now the doctors at your hospital appear not to be familiar with TNBC. They surely must know that with breast cancer, you have a receptor status and that they are either positive, negative or a mixture. Never be afraid to speak your mind at the hospital and never be afraid to ask questions. Always ask about new treatments, drugs and trials. It is your body and you have to take care of it as best you can.
I am so glad for you that you have the cancer centre for some support. Do you have groups and answer and question sessions? Are you the only person at the support centre with TNBC? Are there people there with triple positive breast cancer? I believe the most common receptor status is ER+, PR+ and HER2-. The most common breast cancer is IDC (invasive ductal carcinoma). Your DCIS I would think is probably easier to treat and with a good prognosis. Of course, everything is divided into stages and grades and I noticed that your DCIS is grade 3, which is very common for TNBC. I would think it is good that you had no nodes affected.
I do hope everything will progress at the cancer centre. Is it a very big place? If you have anything that is worrying you, you can always tell us on this thread. The women here are very informed, and what we do not know we can try to find out. I think we have covered all aspects of the journey through breast cancer on this thread and that we are very up to date. Of course, we are not doctors, but we do know from experience the standard treatment, common side effects, and sundry useful tips. After treatment the best thing is to get on with your life as normally as possible, look after yourself, and avoid worry and stress as best you can.
You do not have to say sorry for a good detailed post. That is what we want. I do try to keep this thread one of quality. It has to be useful. We still take an interest in your everyday life and interests. It does not always have to be about breast cancer.
Good luck and best wishes.
Sylvia0 -
Hello Karen3
I happened to see your post on another forum and I was so glad to know that all is going well with you. Keep it up. I do hope everything will be fine at your next check up. Are you back teaching now?
Very best wishes
Sylvia0 -
Hello Everyone'
There is so much information flying around about Metformin that I thought I would Google it again with reference to TNBC. Is this drug being prescribed in the UK for the treatment of breast cancer. If anyone is taking it for this reason or is in a trial it would be interesting to hear from you. Iread about it ages ago, but it seems to be a greater topic of conversation now.
I have read today that 20 year survival rates for TNBC are similar to those of hormonal breast cancer. That should be encouraging news for all of us. Do not listen to all the bad news.
I shall be asking my oncolgist about Metformin when I see her in April.
Sylvia.
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Dear Sylvia,
Thank you for your reply and for writing that I have made a contribution to this thread. You have certainly supported me through my journey thus far and I am very appreciative of your friendship and support.
I am adding to your reading list (smile):
but I thought this was an encouraging article.
Hope you have a great day!
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Hello christina1961
Thank you for your post and for the link. It is so good that we have access to all these articles on the internet. I have just read and of course feel encouraged to know that the death rate from breast cancer is going down in the UK, because, on the whole, we have a poor record for cancer compared to the rest of Europe. I was interested in the fact that it is for women under 50 that the death rate has gone down. In this country women do not get mammograms until 50 and they stop at 70, unless there are special circumstances. This makes me wonder whether in the older age group, being subjected to mammograms could be adding to the higher death rates because of being subjected to radiation every three years. What makes me wonder about this even more is that the article states that the decline in death rates is not due to mammograms but to better treatment.What is sad is that the incidence of breast cancer is going up. I wonder why? I feel that the birth control pill might be one of the reasons, if the increase is in younger women.
I am very proud of the way you, bak94 and mccrimmon324 (Heather) have kept posting on this thread throughout your journey, and you have all done so well. Keep it up.
I am now going to have a look at the other link that you posted.
Best wishes
Sylvia0 -
Hello christina1961
I did read the link about trials and what goes on. It was very interesting. I think there definitely need to be some changes. I think all results should be published, especially for those who have taken part in the trial. They have made a great sacrifice. I also think that unsuccessful trials should also be made public. It is still a learning exercise.Have you been looking at the Metformin and Breast Cancer thread? Do you have any thoughts about Metformin?
Best wishes
Sylvia0 -
Sylvia,
I am going to take a look at the metformin information this weekend. My oncologist will not prescribe it for me and doesn't seem to think it has much benefit but he is a general oncologist/hematologist so I do not know how closely he has followed the research. There is a randomized clinical trial for metformin with a participating center within two hours of me. I have already contacted them by telephone and may present the trial information to him on Friday to see if he thinks I might benefit from participation. Alternately, if the evidence for metformin is compelling, I could probably persuade my general doctor to prescribe it. The worry I have at this point without knowing much about it, is that I have always had a tendency toward low blood sugar "spells" and would not want to do anything that would cause more of these episodes. I seem to do much better on my low sugar diet however. Sugar is so hard to avoid, I cannot say I am on a "no sugar" diet yet. It is listed as an ingredient on canned clam chowder soup!
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