Calling all triple negative breast cancer patients in the UK
Comments
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Hello naturegirl11
Thank you for your PM. I have just sent a reply.
We are all here to help and support you. Do not be afraid. You can do this.
Fond thoughts.
Sylvia xxxx
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Dear Jenn, So sorry to read this. Why a Hickman line versus a port? Hang in there and slam the cancer back!
Bummer face....
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Hello jenn-uk (Jenn)
I was sorry to read
that you will not be able to have any radiotherapy but to look on the
bright side, chemotherapy is systemic so it should knock out anything
lurking around the body.I do hope everything
will be OK with the Hickman line.Let us hope you will
not have any problems with hard veins. I got through my six months
treatment with chemotherapy through cannulas in the back of the hand.
Only the last treatment was difficult, but they still managed it
through the vein.When I had a mastectomy
after the chemotherapy, the oncologist thought that the cancer might
come back so a port was installed at the same time as I had a
mastectomy. I was very aware of the port in my body. I was not told
when I gave my consent for the port that I would have to have it
flushed out every three months at the oncology department. I was
merely told it could be left there for life. When I went for the
second flushing nothing would work. I was x-rayed and told the port
had kinked and would have to be removed. Because of this I had to go
back into hospital and have it removed under general anaesthetic. I
had that done and said I did not want an other one. The cancer did
not come back (not so far) and I am glad I do not have that port.
This is just my own opinion.I was reading another
thread and came across a post where a woman was talking about a trial
for enzalutamide. Have you ever heard of this?We are all thinking of
you and sending best wishes your way.Sylvia xxxx
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Hi Jenn-uk
I am sorry to read that you are needing treatment. I hope the CMF does the job. Have you looked at the US National Cancer Institute clinical trial data base? As far as I remember they list all clinical trials world wide and it could be if you found something suitable you may qualify for out of country funding.
Best wishes
Michael
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Hello everyone
I thought I would post
a few bits of information that I have found in the newspapers and
magazines recently. The first one was in the Daily Express and was
entitled 'Thousands could be saved by new drug which 'stops breast
cancer spreading'.'“Metastasis hits up
to 12,000 women a year in the UK.There have been great
improvements in treating the early stages of breast cancer but there
has been a lack of drugs for dealing with metastasis, which can
strike several years after an initial diagnosis.There is new hope for
patients after scientists targeted the Bc13 gene which appears to
play a critical role in the spread of breast cancer.”Apparently researchers
worked out how Bc13 functioned and then blocked it. It seems that
suppressing the gene reduces the spread of cancer by more than 80%.There are more details
in the article. I think this was in the Monday edition of the
Express.Another article that
was in a recent edition was entitled 'How cancer survivors can live
years longer with regular exercise' according to researchers.I think we all know how
important it is to exercise and stay active. I think we all know, as
well, that too many people in the developed world are living
lifestyles that are too sedentary.A magazine that has had
articles on cancer in January is The New Scientist. I printed
information in a recent post about one of these articles. That
article was in the magazine on January 18th. On January
25th there was another interesting article about cancer
under Special Report page 8 entitled The making of a monster. Tumours
turn invasive in sudden leaps that can now be explained genetically,
reports Michael Slezak. Another heading is Cancer evolution seems to
occur by mutations that enable genome chaos. The article is most
interesting but can seem complicated.This magazine comes out
every week and is good for working the little grey cells. I do not
know what was in the January 11th edition.I discovered that the
January 4th edition was about 'Killing cancer with fever:
an old therapy revisited'. I have read in the past accounts of people
surviving cancer after developing a very high fever.Finally, I have just
bought the latest edition of What Doctors Don't Tell You. Once again
it is full of interesting information. It would be nice to exchange
views with those of you who read it.Another week is nearly
over and I do hope you are all coping with whatever challenges you
have had to face.I know we have all been
thinking of jenn-uk and keeping our fingers crossed for her. I am
sure she will have appreciated the support from those of you who have
popped in to give it.I do hope that Jackpot
(Gill) is coping well with radiotherapy and that apandy (Anne) and
bigleggy (Sandra) is coping well with chemotherapy. I think for Anne
it should have ended on January 29th.Many thanks to
Normandee (Norma), chaterbox2012 (Michael), susaninicking (Susan) and
Hero1967 for your posts this week.It was good to hear
from Carolben and we are all wishing her well as she goes through
treatment for metastases.I do hope we shall have
news from peterandliz, adagio and linali and I hope all is well with
you.Keep your eyes open for
any information you have found in your daily lives about breast
cancer, especially TNBC, cancer in general, research and trials.To all of you, newly
diagnosed, remember we are here to help. Do not go through this
journey alone.Thinking of you all.
Best wishes.Sylvia
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Hello linali (Lindsay)
Thank you for your PM.
I am posting on the thread because I think there are some things you
have said that will be useful for everyone. Whatever you post on the
thread will be useful to someone and those of us who have been
through the journey for primary breast cancer and survived need to
try to post after they have finished to motivate, comfort and support those
going through that treatment. If survivors do not pop in to post,
there will be no thread to support those going through treatment. I
know it is difficult because we all go through the treatment with its
good and bad days, the side effects etc. and when we finish there is
that great feeling of relief and the last thing we want to think
about anymore is breast cancer. However, we all know that the cancer
can come back and it is something we have to learn to live with,
along with any lasting side effects from our treatment.I cannot believe how
long you are having to wait for an appointment to a pain specialist.
I find that totally unacceptable.Trying to deal with the
fear of recurrence is quite difficult. I think that the more a person
worries about it the more stressed that person will be and stress is
a killer. Worrying serves no purpose. All we can do is to try to live
as healthily as we can, to be as active as we can and to try not to
be obsessed about it and let it take over our lives. Living is
stressful and risky. Each morning that we wake up we have no idea
what the day will bring and whether it will be our last day! We could
have an accident, we could just drop dead. We have to get on with the
process of living as best we can.I keep reading about
how useful yoga is for people who have survived cancer. I think that
anything we can do to relax the mind is useful, be it music, funny
programmes, a good book, a walk in the park. We have to work out what is of benefit to us and go for it. Try to avoid situations and people
that put us through negative stress. Finding someone with whom to
talk and express oneself is just as good as any professional
counselling.It could be that we all
need breaks from thinking or talking about breast cancer. After
treatment it needs to go into some little corner of your life. I read
posts on bc.org where people seem to get obsessed with numbers about
survival rates etc. I find this a waste of time. It is no different
to trying to work out how long you are going to live in general. We
do not know. All those survival figures are very basic and do not
seem to take into account general health, diet, activity levels and
all kinds of things. This year it will be nine years in June since I
was diagnosed, so according to some of the figures I have read that
means with TNBC I am 'cured'! I do not believe this for a moment.It sounds as though you
are doing everything in your power to lead a healthy lifestyle and
doing all the things we are told we should do. That is eating
healthily (but have a few treats), keeping active (and simple walking
and household chores are sufficient), and not drinking too much
alcohol, but you need to add to that to stop worrying.I was glad to know that
the storms did not do too much damage. I hope there will not be too
much damage today. The wind is strong here in Exmouth and it is
raining yet again!I was glad to know that
you had a nice retirement party and I can understand how it felt a
bit like being on This is your Life. I am sure you were very highly
respected in your work and am glad you received some beautiful gifts.
It might be nice to arrange get-togethers for just a cup of tea. I
have recently read that the most important thing in a person's life
for good health and longevity is to have plenty of social contacts
and that the worst thing, far worse than even smoking, is social
isolation. There are so many people, especially the older ones, who
are living lives of dreadful loneliness and this affects their
physical and mental well-being. Life was so much better when families
lived closer together and generations were together.I do hope that the
antibiotics will work for the cysts. It will probably be simple to
remove them if necessary and especially if they are affecting your
walking.I think that what you
want to give to the Centre must be your own personal choice as is how
much you spend with other people affected by cancer. If you are
frightened and worried by mixing with people going through cancer
treatment and it stirs up unpleasant memories of you own treatment,
then it might be wise to take a long break.I do hope that all will
go well with your son, as I know how much you worry about him. How is
your grandson Oskar and how are his parents? I do hope life is
treating them well.The book that you
mentioned sounds interesting and I am sure it will be a great help to
patients. Just do what you can at the Centre but do not let it stress
you. It is always very difficult dealing with different people. I
have recently attended political meetings and have been very
disillusioned with some of the people and their big selfish egos. I
gave them a piece of my mind at one meeting and think I quite shocked
them. I try to be honest and ethical in everything I do.I was glad to know you
continue to read the threads and I hope you still find something to
learn from them. It is quite difficult to keep on going, as people
that you have grown fond of disappear and get on with their lives. I
often wonder what has happened to BernieEllen, Mumtobe (Carol) and
Maria_Malta. Along with you they all went through treatment together
and were a strong group. I do hope they are all well.I was glad to know that
reading the posts has kept you going. Remember not to put yourself
down and that you are as important as the next person.Sending fond thoughts
your way.Sylvia xxxx
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Hello everyone
I just wanted to say to
those of you going through treatment, starting treatment or
newly-diagnsoed, especially those of you in the UK, that the best
little book by far to take on your cancer journey is Understanding
Breast Cancer by Professor Mike Dixon by Family Doctor Books,
published in association with the British Medical Association. It
will take you chapter by chapter through your treatment in simple
understandable terms and with lots of diagrams. It has absolutely
everything you need to know and is only £6.95. It enables you as
well to concentrate on one aspect of your treatment at a time. It is
invaluable.Have a good weekend.
Best wishes to
everyone.Sylvia
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Jenn, I have no experience with the Hickman line, I had a port put in after my original AC, as my veins have become hard to find and just hard & collapsing! I haven't had a moment of trouble with the port. I need to get it flushed every 3 months, but that's not a big deal - I go through to the Oncology Centre every 3 weeks! Good luck with the line, I hope it goes well. Let us know about the chemo - am pulling for you!
Sylvia, I have my days when I am just too tired to do more than minimum household chores and sit in my lazy boy or sleep, but I think I have more good days than bad. I have been getting down to the sea or the pool for a swim nearly every day. It's true what they say about exercise - no matter how big an undertaking it seems to be, if I get that swim in I always feel better. Am a bit leery about swimming out far in the sea, I was out of standing depth the other day and just totally lost my breath, that was a bit scary, but I just lay on my back till it came back and I could get to shore. So I've decided to not go deeper than I can stand, and maybe swim more in the pool. I also have been getting to my weekly yoga class, which is lovely for my mind, and the breathing feels so good for my lungs (same with swimming). I found the class today pretty hard going, but I just go into child's pose and rest when I need to. The exercise helps my frame of mind too. I make a point of having at least one thing I need to get out of my house to do each day, have coffee with friends a lot (or tea, depending on the nausea level) I too have not been able to stomach Green tea. My appetite is horrible, so I've been having more of the ensure meal supplements, I cannot lose any more weight. I put on 2 kgs on my week off (just wanted to eat all the time, so I did!) but have lost them again already, never thought I'd be upset about losing weight! Hopefully my appetite will come back in the next week off chemo. Enjoy those apricots - there's also watermelon, nectarines, grapes, in fact all of our summer fruit is lovely. And fruit is easier to eat, it's 'clean' food. I put protein powder in yoghurt sometimes, too.
You ask if the time goes by slowly, and it doesn't really, it just depends on me to do things - so I've started sewing at home again - have been making lots of heating pads (the kind with rice in them that you microwave), sewing is pretty therapeutic, easy and it's nice to create something. I see friends, do the odd day of work at my old place (when they need me). It's really up to me to keep things going. It feels like my life came to a halt with the stage iv dx for a while, I took it as a kind of death sentence. But things got back into perspective and now I'll be on chemo probably on and off for a long time (ever) and I've had to make a life around that. Or despite that. I don't look at it as a death sentence anymore. Life is a fatal disease!
I decided that I can either play the sick girl/victim (which is sooooo boring) or I can get on with my life, as it is. Of course, I am sick girl sometimes, but I'm NOT a victim. I feel so incredibly lucky!! That may sound strange, but to be stage iv, having chemo and still able to live a pretty decent life - definitely not what I thought stage iv on chemo would be like. I've seen women diagnosed around the same time as me who are already angels, I just feel so lucky to be as well as I am!! And am trying to enjoy each day as it comes. I have tons of contact with my family and some good friends, and have not done this journey alone. This site is been such a huge source of comfort, hope and information for me, an absolute life saver!
I had a look at The Malady of all Illnesses (is that the correct name? - you recommended it once), but left it at my sister, I definitely want to read that one. My concentration is not great, so I've made a note of the websites you've mentioned and will look at them slowly. Also, I fall asleep so quickly when I'm reading these days! Light fiction and doing crosswords are on the menu now!
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Hi Sylvia and everyone, I hope you are all doing ok.
I had my last chemo on Wednesday, 29th, and am relieved it is all over now, although the horrible side effects are starting to kick in. I had a few rough days after the last cycle with muscle aches and fatigue, but generally feel I have fared better than many on tax. The taste changes seem to last most of the cycle, unlike on FEC, where they lasted only just over a week or so. I have also found the fatigue is pretty continuous too.
I have now got some dates for my radiotherapy, which is due to start on 19 February, through until 11 March. I hope I will be able to go back to work on 31 March as there will be no more treatment for me after that.
Sorry to hear about your recurrences, Jenn. I hope you are coping and not getting too down. It must be a very worrying time for you.
Best wishes to everyone else going through treatment. Our Facebook group for the October Optimists is still going strong and I have mostly been posting on there, hence I haven't been on for a while.
Kind regards, everyone,
Anne
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Jenn-Uk - I'm catching up on posts here, but sent you a PM.
Hi Everyone - Hi Sylvia!
What's everyone's opinion on Fish Oil? This article said largest study ever shows it helps beat cancer. There is a new study out that says fish oil increased the risk for prostate cancer, however many experts are counter-claiming that study, stating that study was to research the relationship between selenium and vitamin e in a cancer research trial, it was discovered that those who had prostate cancer did have higher levels of DHA but it was not known whether it was from fish or fish foils or any other factors, since the study was for something else.
Anyways, if you are taking this please let me know how much and what does your doctor think?
I do get the Omegas from organic flax seed.
http://blog.canceractive.com/?tag=breast-cancer This link also includes additional information on various other dietary things
Also my good friend in Florida, also a TNBC survivor sent me this article on carotenoids - http://blog.canceractive.com/?p=824
I know Sylvia posts a lot from the same source so it may be old news to you all but just in case.
Sylvia, what is your exercise routine like? Do you exercise, and if so, how much and have you always done so from dx to now?
Hugs and sweet thoughts to all!
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Hello Carolben
Thank you for your
post. I think you are doing really well considering you are going
through treatment. You are certainly to be admired for all the
exercise you are managing to do and for having a social life by
having coffee or tea with friends, doing a bit of work and keeping
yourself occupied in a creative way. You certainly have my
admiration. As I have posted on the thread, yoga is said to be
exceedingly beneficial. You are doing everything right, good
nutrition, exercise, social contact (said to be one of the most
beneficial things in life) and you have the right attitude. You have
the best attitude as well in not looking on stage 4 as a death
sentence. People can live for many years with stage 4. I think you
are right to say life is a fatal disease. You will not get out of it
alive! I absolutely believe in taking one day at a time. You are
definitely right to be getting on with your life. I am sure you will
be an inspiration to everyone reading this thread.It is so good for you
to have all that contact with friends and family and that must be a
great help. A cancer journey is not one that you want to make alone.I think the book I
mentioned sometime ago was The Emperor of all Maladies. It traces the
story of cancer. Make sure you read plenty of light hearted stuff as
well.Do everything at your
own pace and of course rest when you feel the need.Thinking of you with
great affection.Sylvia xxxx
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Hello apandy (Anne)
It was nice to hear
from you and thank you for your post. You must be very relieved to
have had your last chemotherapy and you will now start picking up.You have a few weeks to
get ready for radiotherapy and I hope you will be able to spend them
as normally as possible. You now know that by March 11th
you will have completed your breast cancer journey. It is good that
you already have a date in mind for going back to work as a teacher,
March 31st. You will then settle into a routine of normal
life and one where you go for check ups every three months for a
couple of years and then every six months, usually alternating
between a visit to the oncologist and a visit to the breast cancer
surgeon. You will probably have mammograms every two years. At least
that was my routine here in Exmouth. I now just see the oncologist
once a year and am due to see her in May. I still get nervous about
that. She has told me that if I remain in the clear as of my visit to
her next year, 2015, that will mark ten years for me since diagnosis
and I shall be discharged.I was interested to
know about the Facebook group, the October Optimists. How has your
breast cancer journey compared to some of the people on there? Did
anyone have any different chemotherapy drugs compared to you? We need
as much information as we can get.Thinking of you and
wishing you well. Please keep in touch. Remember that you are needed
to offer support to others.Sylvia xxxx
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Hello InspiredbyDolce
(Debra)I do not take fish oil
supplements. I have taken them for a little while in the past but
decided that I thought it better to get the nutrients from wild
salmon, which I have regularly a few times a week. I just poach it. I
also have linseeds (flaxseeds) which I grind up and often use as a
base on fresh plain soy yoghurt. I have also read about a possible
connection between fish oils and prostate cancer but lately I tend to
ignore a lot of this because there are scares about so many things in
our papers and other media every day. I have also read that a lot of
research is biased towards whatever results are desired to be
obtained! You have to do what you think is best for you and try not
to worry too much.As you know, I do get a
regular e-mail from Chris Woollams and I always look up any
information on the Cancer Active site and I do have great faith in
him, especially about the rainbow diet. On the whole I just make up
my own mind what I am going to do and what I am not going to do.
Aspirin is a case in point. It is in the news quite a lot, some for
it, some against it. I have decided it is not for me.I certainly believe in
eating lots of brightly coloured fruits and vegetables and do this on
a regular basis. For example, this morning I had a bowl of fresh
mixed fruit, blueberries, raspberries, blackberries, red grapes and
kiwis. I try to buy organic when I can. As for vegetables, broccoli,
sprouting broccoli, Brussels sprouts, cauliflower, carrots, sweet
potatoes etc., organic where possible. I prefer to get my nutrients
from food rather than pills and try to keep my food simple.Thank you for your
links. They are most useful.I tend to read
everything that is sent to me from Cancer Active and I always buy the
magazine What Doctors Don't Tell You and I have a lot of faith in
both. I have just bought the latest edition of this magazine which
came out January 30th. It is full of useful information. I
have also become a regular reader of the New Scientist. This has a
long article about sugar this week.You asked about
exercise. I do not go to the gym or practice any sports, but I am
very active and energetic in every day life. I try to get a walk in
as much as I can and I do a great deal of gardening in the grounds of
the apartment complex where I live. I do a lot of chores in our
apartment as well. I try to integrate walking into my every day
routine. I have not done anything different since I was diagnosed. I
have always been active and energetic and eaten healthily throughout
my life and have never had a weight problem or gone on diets. What I
do try to do since diagnosis is avoid negative stress and try not to
worry too much. I do not know why I got breast cancer, why it was
TNBC, but I cannot think it was due to diet or lack of exercise, more
to do with stress, but that is my own theory. I also think it may
have had something to do with an over-active parathyroid gland (NOT
thyroid) which was diagnosed at the same time but which the
consultant said preceded the breast cancer. There is a lot of
research about this.Thinking of you, Debra,
and keep posting.Sylvia xxxx
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Hello Inspired by Dolce{Debra},
I have just read all your interesting information on metformin and androgen receptors on the other thread, would you mind posting them on this thread so that everyone can benefit in this country.
Thank you for all your information.
Best wishes.
Sylvia xxxx
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Hello everyone,
I am just posting to say that in my latest e-mail from Chris Woollams at canceractive I was interested to see that the second heading was Stress hormones worsen during cancer.
A bit further on I saw Stress- the fourth pillar of cancer.
I thought you might like to look at it.
Best wishes, Sylvia.
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hi Sylvia
I hope your well, I've been a bit down the last couple of weeks and can't seem to shake it off...I've completed three weeks now of radiotherapy and I've got two left so not long now,
because you see the same people at radiotherapy every day you make friends and have conversations and assume their all there for the same as you but getting too know them I found out one had bone mets one incurable lung cancer, another was lung and brain mets and the forth was having five weeks of radiotherapy like me and was also triple neg but had 22 affected nodes....I couldn't help but feel I was the lucky one, but felt terribly sad that these women were terminal and I would probably never know what happens to them after rads has finished, then to top it off earlier this week a friend from my september superstars Facebook group who started and finished chemo the same day as me who was also triple neg so we had a lot in common...the only difference was I had surgery first and her surgery was after chemo, she developed an infection after surgery and was diagnosed with encephalitis but wasn't responding well so she was sent for scans and they found mets in the lining of her brain and her spine and is now terminal....how can the cancer have spread during chemo? I'm so mad at this disease right now!!!!!
Better news though..my Neice is out of hospital earlier than expected though she is very weak and is resting in her mothers home, she has to wait now for a few months to see if the treatment has worked though she has been back for blood and platelets but they expected that
Sorry for the negative post but I'm just letting everything get to me right now, I think I'll feel better when rads are done and I'm not around so many "sick people" and I can start to get back to normal
Take care
Gill
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Hi Gill, I had the same situation in radiation. My favorite 80+ year old man was fighting with a brain tumor that was making his life so hard. He was just adorable and also just fighting it back for the time being. So sorry about your chemo friend. So hard.
Anne, so glad you are done with chemo! I think that last day is a wonderful thing.
Hi Debra.
Carolben, well you are just a rock star in every way and your smile in your profile picture is radiant!
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I have been reading all of the posts that have cropped up since I last wrote. I feel very lucky to be in correspondence with such brave, inspiring, informed women and the support we give each other directly or indirectly is priceless. Special thanks to you Sylvia as you care about, and are so interested in, all of us in our journeys and offer such valuable information.
I have been reflecting on my own position after reading all the posts, on the unfairness and ruthlessness of cancer, and the dynamics of our different situations. I am one of two sisters, the only one to have had children and breast feed, the one who started her periods later and the one who had an early menopause, the one who does not have a sedentary lifestyle.. On paper it would appear that of the two of us my sister fitted the 'breast cancer' candidate. But it was me. My sister , 2 years younger, enjoys excellent health for which I am very pleased but it does make me think there is more of a 'lottery' pattern to who gets cancer than is sometimes portrayed.
When I discussed all the above with my well renowned breast surgeon, and asked what had brought my cancer on she replied 'because you're a woman and you've got breasts!'. I respect her so accepted this, after all - why not me?
I suppose we all are given a cut of the cards and we must play our hands with what we are dealt with no matter how lousy the deal. But some brilliant games have been won with lousy deals!
Thinking of you all who are going through treatment and sincerely wishing you well. A very lovely, beautiful friend of mine who was in top health when I was diagnosed, (and who I secretly envied because of that I am ashamed to admit), died 3 months ago in a freak accident. This made me realise, as someone said earlier, that life is fatal and it helped me move on and enjoy each new day.
Much love to you all x
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Hi Sylvia,
Thank you for your response to my pm, as always it addresses all of my issues.
I think that my main problem with the surgeons reaction to me mentioning a worry about recurrence is that it was seen as something that should no longer be in my head and that I should have moved on. My "worry" has always been triggered by a symptom e.g. abnormal mri or abnormal liver tests or lumps and bumps and to me that is an understandable reaction of anyone who has been diagnosed with cancer.It was not unfounded.
I wonder do the surgeons and oncologists acknowledged that.To me it is part of being vigilant and I do not want to be labelled as neurotic. I feel that we all live with that at the back of our minds and still live our lives to the full and should be commended. It is unreasonable of them to expect that those " fears" to just disappear.
I am so lucky that I had good outcomes and yes one small negative of being involved with the centre are the people that I meet who have recurrence or who are regarded as terminal. But it is balanced out by the knowledge that I am and have been part of their lives and contributed to creating a place where people can find comfort, cry or just escape. I have met many inspirational people.
I suppose after 30 years of working in a hospital ,many of them in ICU I was used to dealing with sadness and loss.
One bee in my bonnet was and still is that there doesn't seem to be any " gold standard" follow up plan - with self vigilance being the main check. Also it is dependent on which cancer centre that you attend, here in Ireland there doesn't seem to be any consistency. A big factor too is public v private. There is more and speedier access to scans or other consultants via the private system.
I was very interested in the information and articles on drugs for and research into metastases etc. It is a concern as naturally most of the research is focused on the initial cancers and I too am a big advocate for prevention.
I had hoped to become more involved in the "campaigning" side of the centre but that doesn't seem to be an option. As cancer rates increase and finances are stretched I think that it is very important to make sure that pressure is kept on the Health Services and government to provide a safe and non discriminatory service to cancer patients. I may have to look at other ways to do this.
I send my support and respect to all of those going through treatment and congrats to those coming to the end of theirs.
Oskar is coming to stay for a week and I'm already on extra vitamins!. To say the least he is a lively little boy and I am hoping that the wind and rain will die down so that we can get out and about.
I had a lovely day with Leigh in Galway on Friday and met his friends for lunch in a Japanese restaurant. It was lucky that we went on Friday because the area was flooded by the high spring tide the next day. Leigh has written a piece of music for a short play and that was performed at a small theatre in Cork.
We were hoping to plan a trip to France in the spring but sadly my brother-in-law died unexpectedly in America .There was a small family cremation ceremony and because he was ex airforce he will be given a military interment in Arlington cemetery later. There is a waiting list of months and we are anxious to be with Damian's sister for that , so all our plans are on hold.
Hoping that everyone is safe and dry. thank you
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Hello Jackpot (Gill)
Thank you for your
post. I was sorry to read that you have been a bit down the last
couple of weeks, but I think it is only to be expected with
everything you are going through. You have been through three weeks
of radiotherapy, going to the hospital every day. This is very
wearing, in addition to the fatigue that radiotherapy causes.
Concentrate on the fact that you have two weeks left and then you
will have completed your cancer journey.It is true that with
radiotherapy treatment taking place every day you do get to know a
lot of different people and it is inevitable that they will be having
radiotherapy for many different things. You have to try to
concentrate on what is happening to you as an individual and try not
to compare yourself to others. You have to keep telling yourself that
you are going to get through your own treatment.I remember when I was
going through radiotherapy that there was a very young woman going
through radiotherapy for cancer of the tongue, some of which had been
removed and she could not speak. I remember others, quite a lot of
men going through treatment for prostate cancer. You do experience
strong emotions about all this but you cannot do anything for these
other patients, except have friendly compassionate conversations.I can understand how
upset you must be about your friend on Facebook who went through
chemotherapy at the same time as you and has ended up with stage 4 or
metastatic breast cancer. Remember that stage 4 is not a death
sentence and patients can survive for many years with what is termed
terminal breast cancer. None of us knows which way our breast cancer
will go and why. Despite the trials going on to try to find out and
all the research about genes and things in the blood. It is all very
complicated.With reference to your
friend we cannot really know what has happened. I had chemotherapy
before surgery because of a large tumour to try to shrink the tumour
a bit. Five weeks later I had surgery, a mastectomy and removal of
seven lymph nodes of which only the sentinel node was positive, but I
still had a complete pathological response. I was surprised really
because I still had some tumour left after the chemotherapy. I then
had my radiotherapy. I think a lot of how you fare during this
treatment may depend on your state of health prior to a cancer
diagnosis. I had never been ill and got through all my treatment
fairly easily. I suppose with your friend it could have been that
cancer cells had placed themselves undetected prior to diagnosis.
They may not have shown up in any scans. Surgery itself is risky and
you never know what will happen after it. Your friend developed an
infection after surgery – another set back.This is why I keep
saying on the thread that you have to concentrate on yourself and
your individual treatment and not compare yourself to others even
though you are having the same treatmet.I was glad to know that
your niece was out of hospital and resting at her mother's home. I do
hope she will make good progress.You do not have to
worry about letting all your feelings out on this thread. This is
what it is for.I think with standard
treatment the medical teams put all their effort into getting their
patients through the physical journey and there is not enough concern
for the psychological side. That is why I so much appreciated having
homoeopathic treatment at the Royal Bristol Homoeopathic Hospital
because I had much longer appointments with my consultant, Dr
Elizabeth Thompson, and I felt she really got to know me as a person.Remember, Gill, you are
just two weeks away from saying farewell to standard treatment. You
will then be able to get your normal life back on track. You can do
this.We shall need you here
as apandy (Anne) is waiting for February 19th to start her
radiotherapy. She will need you to cheer her on. Bigleggy (Sandra) is
probably still going through chemotherapy and then she will have the
radiotherapy treatment if she follows the normal standard route.Thinking of you.
Sylvia xxxx
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Hello susaninicking
(Susan)I just wanted to say
hello and how much I appreciate your giving support and comfort to
those going through treatment. I hope you are enjoying life to the
full.Best wishes.
Sylvia xxxx
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Hello Normandee (Norma)
and linali (Lindsay)I have just read your
posts and I want to say what profound posts they are. I shall respond
later on today when I have more time.Thinking of you both.
Sylvia xxxx
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Hello Normandee (Norma)
I was so glad to know
that you are taking the trouble to read all the posts, as that will
keep you up to date with all that has been going on and I am so glad
that you are finding the thread useful and inspiring. Thank you for
your kind words. I do care about everyone on the thread and I
certainly share the ups and downs as different people go through
their treatment. I do find that you all write such meaningful threads
and that you obviously put a lot of thinking into what you are
saying.It is certainly true
that there is no fairness about cancer. Although we are told there
are things we can do to prevent it, I really feel it is the luck of
the draw. From all that you have said about yourself, you did not
have a lot of what we are told are risk factors but you ended up with
breast cancer. I remember what the consultant said, which was that
risk factors do not necessarily cause your cancer. I think the
lottery pattern describes it very well. I think we can drive
ourselves mad trying to work out what caused our breast cancer and I
do not think we can ever really know. We have to get on with life as
best we can and as proven through the freak accident which caused the
death of your friend, we never know when our time will be up. Life is
risky.Sending you fond
wishes.Sylvia xxxx
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Hello linali (Lindsay)
Thank you for your post
and it is always a pleasure to hear from you.I absolutely agree with
what you said about your surgeon's reaction to your mentioning about
your worrying about recurrence. Only those of us that have been
through breast cancer treatment can understand the underlying worry
that is always with us that our cancer can come back. It does not
matter how renowned our medical experts are, they cannot possible
understand the psychological stress and worry that lives within us,
unless they have experienced cancer themselves. That says it all and
the same goes for our friends and family who have not experienced the
disease themselves. The worry is even more understandable if there is
something going on within our bodies that is not normal for us. We
have to be vigilant about anything that is abnormal for us. There is
nothing remotely neurotic about that. You are right that we can live
our lives normally and to the full and still have at the back of our
minds that worry that the cancer will come back. I still experience
those feelings, they can just come to the fore without warning and I
feel anxious, even though it will be nine years in June since my
diagnosis. I have no problem at all understanding the feelings that
you express.I understand what you
say about the Centre and the effect that it has had on you. I am sure
you have been an asset to them and have helped and comforted many
people. I am sure that with all those years working in ICU you must
be a very strong and compassionate woman.It is certainly true
that after our standard treatment there does not seem to be anything
else that is standard. I know that I had check ups every three months
for two years after I had finished treatment, but it was just a
physical check up. I then went to physical check ups every six months
for about four years and now it is just once a year. I have been told
if all continues well I shall be discharged as of June 2015, when it
will be ten years since diagnosis. I have also had mammograms every
two years. I have had no scans or blood tests since I finished the
standard treatment of chemotherapy, surgery and radiotherapy. I do
not know if others in England have followed this pattern and I do not
know if it is the same for Scotland, Wales and Northern Ireland, even
though we are supposed to be the United Kingdom! I do think there
seems to be more monitoring in the US but that is the difference
between private insurance based and tax based medical systems. I am a
firm believer in the NHS and medical treatment free for all at the
point of use. The last thing we want is to worry about whether we
have loads of money to pay. I have been reading a book entitled 'SOS
NHS' in which it looks as though our NHS in England is rapidly
disappearing under the present government and it is now
unrecognisable from the NHS implemented in 1948 by Aneurin Bevan.
That was surely our proudest moment and our proudest achievement.I think we should to
try to gather as much information as we can possible can about what
is being achieved about metastases. It looks as though the medical
establishment can get us through primary breast cancer, even though
it takes toxic drugs to do this, and drastic surgery and
radiotherapy. The big challenge is how to get metastases under
control and prevent it. Prevention is key and that goes for primary
breast cancer. I do not think the medical experts can rest on their
laurels with just drugs, especially as they are becoming more and
more expensive and often not available on the NHS.I definitely agree that
we have somehow to fight and not allow cancer treatment to become
available only to those who can dish out the dosh!!!Keep in touch. We need
deep thinking people like you on the thread.Enjoy the company of
Oskar and take plenty of B vitamins for energy!I was glad to know you
had had an enjoyable day with Leigh. He sounds very talented. I was
sorry to hear that your brother-in-law had died unexpectedly in
America. I hope you get to America to be with Damian's sister and I
hope you get to France.The weather is
horrendous in Exmouth and we have more rain, high winds and high
tides. The seafront has been closed off and there has been flooding
in the nearby streets.Look after yourself.
Enjoy your time with your family and keep in touch.Fond thoughts.
Sylvia xxxx
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Hello everybody. I'm the daughter of 57 year old mum. Diagnosed with TNC two weeks ago, awaiting Lumpectomy and sentinel node removal / testing. The path repot states it's grade 3, ER-, HER2- and PRG pending. kI67 50%. Invasive ductal carcinoma. 15mm. My mum is quite in denial of it all. I am desperately trying to find out as much as possible about it before she sees the ONC inMarch. I cannot understand why they have not offered her an out and out mastectomy, as judging by allposts on here, the chances of reoccurrence are quite high. Please can you tell us what questions we should ask at our next appt. will she have to have scans to check for spread, or will this only be done if its moved to lymph glands? Thank you so much, Lettie x
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also meant to ask....what was that about apricot kernels, and has anybody any experience of soursop? Would be great if we could get a list going of 'cancer fighting' foods/ supplements....
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sorry, meant to say also, what an inspiration you ar Sylvia, and so knowledgeable. I will be trawling through this thread ver the next few nights.
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hi septemberbird
Sorry to hear about your mum, the good news is at 15mm they've caught it really early that's why their doing a lumpectomy and not a mastectomy....hopefully the SNB will come back clear but even if it the nodes are positive the prognosis is still good
Have they said if your mum has to have chemo? Try not to google too much instead ask any questions you have on here, I'm sure Sylvia will be on soon and will be to give you all the information your looking for,
I think there is only myself and Sylvia that eat the bitter apricot kernels I also take vitamin d3 as there is a lot of research right now that this can prevent recurrence, the recommended dose is 5000 iu, I also take low dose aspirin on the recommendation of a doctor as it seems they now think it is an effective cancer preventive and a lot of research is being done into this right now
If you look back a couple of pages i think it is on page 158 Sylvia posted a list of cancer fighting foods that you might interested in looking at, I have read good things about soursop but have not tried it as it is not available anywhere local to me
Stay on these forums and you will find everything you need to know and a great deal of support as I have...I know it's scary right now but im sure your mum will be fine, it is true that the recurrence is slightly higher for the first few years with TNBC but after five years the chance of recurrence drops away significantly that doesn't happen with other types of breast cancer so there are some positives with TNBC
Take care lettie
Gill
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Sylvia - I have been missing because I had a very nasty fall a bout 10 days ago and have been unable to use my left arm at all and am in a lot of pain. I slipped on black ice while out walking the dog and went full weight on my left arm and shoulder. The good news is that I didn't break any bones!! My arm is black as night from the shoulder down to the elbow - I have never seen such bruising. The fall has really set me back and it is on the same side as the breast cancer so my mind has been running rampant with "what if".
Great to read and catch up on everyone's journey.
Carolben - loved your post - so very encouraging and uplifting.
Jackpot - hang in there - it is tough going every day for rads - that in itself is tiring and then compounded by the radiation. Soon it will be over, and your hair will start growing back soon. I just had my first haircut and I finished chemo on March 1 st 2013 - almost a year ago. There is "life" after treatments, and like Sylvia said we have to focus on our own health and put our emotional energy into getting better.
I am going to do some reading about apricot kernels, I have heard that they do have health benefits .
Warm thoughts to all going through treatments and thanks for all the great posts about your progress.
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Hello Septemberbird
(Lettie)I am sorry that you
have to be here but we shall do all we can to help you and through
you your mum. With your mum having been diagnosed with invasive
ductal carcinoma just two weeks ago she will be feeling shocked and
frightened and not able at the moment to accept what is happening,
but she will adjust as time goes on. The good news is that she has a
very small tumour and that things are going rapidly for her
treatment. From the post I see that she is negative for oestrogen
(ER-) and negative for HER2 (HER2-) but that she is waiting to see
what the progesterone receptor is, but it looks as though it is
expected that this will be negative.Do you know how long
your mum will have to wait before she has the lumpectomy and the
sentinel node testing/removal? With a small tumour it seems to be
standard that a lumpectomy is done. These days the medical experts
seem to want to preserve the breast if at all possible. I have a
friend who had a lumpectomy and with her they did not get clear
margins with the first lumpectomy so she had to have another one and
then all was clear. I was told that if they do not get clear margins
after two lumpectomies they then advise a mastectomy. When your
mother sees the oncologist and/or breast cancer surgeon, she can
always ask about a mastectomy. I am assuming you will go with your
mother, as it is always better to have two pairs of ears to listen to
whatever the consultants are saying. When you are newly diagnosed and
are afraid, nervous and in shock, it is very easy for your mind to
wander and for you not to take in all that is being said. It is also
a good idea to jot down notes that you can refer to at home. It is
also a good idea to jot down questions that you want to ask before
appointments. Remember it is your mum's body and she is the one who
decides ultimately, not the consultants.I can understand that
you want to find out as much as possible before your mum sees the
oncologist in March. It is good to be informed but try not to take in
too much information at one time, deal with one thing at a time. Your
mum has had the pre-surgery pathology report so concentrate now on
preparing for surgery and getting the node status.You have mentioned that
your mum is grade 3 and that is very common for patients with triple
negative receptor status. It means the tumour is high grade and that
the cancer cells are very differentiated from breast cells. You need
to ask what stage it is. There are stages 1 to 4. From the small size
of the tumour it could be stage 1 (early disease) if it is localised
to the breast; this means that it has not spread to the lymph glands
or to anywhere else in the body.You might like to ask
about the rest of the treatment and whether your mum will have
radiotherapy and/or chemotherapy. I have two friends who live near me
who had lumpectomies followed by radiotherapy but no chemotherapy,
but those two friends had hormonal breast cancer.I do not know whether
you are in the UK or in another country or if you are in the UK where
you are. It seems that there can be differences in some of the
treatment depending on where you live. In Devon at the hospital in
Exeter I had two scans before treatment, a CAT scan and a bone
nuclide scan before and after treatment.I hope this helps with
some of the questions you ask in your first post.As for your second
post, I have been eating BITTER apricot kernels since I was diagnosed
in June 2005. Remember if you want to get some for your mum, you
should ask for BITTER apricot kernels as I have seen sweet apricot
kernels in a couple of shops here in Exmouth and they cannot be the
same, although they are probably healthy. I first learnt about them
when I was seeking information about helping with breast cancer
because I was reluctant at first to get orthodox treatment. I saw a
reputable nutritionist doctor in Bristol and on some sheets about
nutrition I saw BITTER apricot kernels and I have been eating them
ever since on a daily basis. We have discussed nutrition and how to
help with our cancer on this thread quite a bit since I started it.
You will read a lot about the importance of fruit and vegetables,
especially those with antioxidants in them. Different people are
taking different things. Always bear in mind that we are not doctors,
we are women who have been or are going through a cancer journey and
are doing all we can to stop it coming back through the things that
we can do in our daily lives. Here are some of the things that we
have read over time that might help.Low carb diet
Low glycemic, low
glucoseResveratrol found in
red/black grapesCurcumin (turmeric)
Bicarbonate of soda
Low dose aspirin 75mg
Omega 3 fish oils
Bitter apricot kernels
Green tea
Prunes
Fruits rich in
antioxidants – blueberries, raspberries, blackberries etc.Vegetables, especially
broccoli and members of the cabbage familyI am sure others may
have things to add to this.Thank you for the kind
things you have said about the thread. I have met so many lovely
thinking women on this thread and we do all help one another.Thinking of you and
your mum and sending best wishes to both of you. Tell your mum that
she can get through this and remember to take care of yourself as
well. A diagnosis of cancer to a loved one can hit all family members
and friends very hard. Let us know how things go.Best wishes.
Sylvia xxxx
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