Calling all triple negative breast cancer patients in the UK
Comments
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Hello
GillI do
hope you are alright and that your surgery is behind you and that you
are doing well.Sending
healing thoughts your way.Sylvia
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Hello
CarolbenI
was sorry to read on one of the threads that you are having such an
exhausting time with chemotherapy. It is awful what chemotherapy does
to the body. You are right to have a rest and to try to build
yourself up and enjoy your summer in South Africa. I am sure the
sunshine will lift your spirits.Here
in Exmouth it is a dull day but exceptionally mild for this time of
year. However it is dark by 6pm so we are into the long winter hours.
I need to find a good book to read, something that will make me laugh
preferably.Good
wishes from everyone on the thread.Sylvia
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Hello Silvia and thanks so much for answering my inquiry. I don't know what thread I was reading. I enter the word osteoporosis in the word search and lots of options popped up. I was impressed with your opinion so I reached out.
Your diet soinds amazing and for me a bit of a challenge. I do eat healthy, daily vegetables, fruits, and soups, but carbohydrates and dairy (cheese, butter, milk) are hard to stay away from - just love them. It is easy to find organic in CA so most of what I eat is organic. I eat a bit of dairy every day, and well, I am also quite fond of carbs! I cook for my family on most days and when my husband cooks, the carbs are ommipresent. I compensate by eating a load of broccoli with pasta but my cancer requires low carbs and definitely not soy. I also lose weight fast and it shows in my face quickly so I need to eat about 2,000 calories a day to keep my weight. How many fruits will that be, lol.
Yes a DEXA test determined my osteoporosis and I am bummed that it took only one year of Arimidex to do so much damage. I'm supposed to stay on it for 10 years! Considering options at this point.
Thanks again for this helpful information. I will keep reading this thread and will check out the others you mentioned.
Hugs, Nisa
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Hi Sylvia and all the other ladies on the site ( any gentlemen too), yes in 1995 I had a partial thyroidectomy initially as although i had a large lump on my neck the fine needle biopsy did not show and malignancy. HOWEVER the pathology showed that it turned out there was cancer so about 2 weeks later I went back to theatre to remove the rest of my thyroid gland but when they got in there it turned out there was so much scar tissue from the first op that to attempt to remove the rest of my thyroid gland would mean I may lose my voice! It was soon after this i had my radioactive iodine. Yes the high level of thyroxine has been a problem at times as i need the level to be high enough to suppress the thyroid stimulating hormone ( and stop any spread)...but not so high as to make me manic! I think I have got it sorted now and I generally feel OK although sometimes i think it can make me restless. it is such an important hormone that affects all of the body In the same year 1995 i also had to have surgery for an abcess on my fallopian tube which had been misdiagnosed for a year. it feels a bit deja vue as I am having abdo/kidney pains whilst going through the breast cancer treatment. hey ho!
Yes Sylvia I have read about associations with breast and thyroid cancers although my oncologist was dismissive when i mentioned it?
I wish all of you well especially those going through chemo. I finished mine 3 months ago and still get tired and my joints ache at times. As they say it is 'doable' and although really horrid at times, well time does pass and it is now just a memory for me...long may that be so!
Love and best wishes to you all, Sue
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Hello
Nisa,Welcome
to our thread. I was glad that I was able to help with the
osteoporosis. I was surprised that my name came up when you put in
osteoporosis, but we have discussed it on this thread and I have
posted quite a bit on those other two threads that I mentioned. In
fact, it was well after my breast cancer treatment that I discovered
breastcancer.org and it was through looking up hyperparathyroidism
that I met sam52 on the High Calcium thread. She then started the
other thread about parathyroid problems and the connection with
breast cancer. Of course, an over-active parathyroid causes
osteoporosis and I think I have read that the same can happen with an
over-active thyroid. The drug anastrozole (Arimidex) can cause bone
pain and osteoporosis and can worsen osteoporosis if you already have
it. The other side effects are anxiety, depression, diarrhoea,
headache, hot flashes and weight gain, so, all in all, not a nice
drug but it is used to lower the level of oestrogen in the body so is
an important drug for hormonal breast cancer. This drug is given to
post-menopausal women, whereas tamoxifen (Nolvadex, Istubal, Valodex)
is an oestrogen antagonist, a drug that blocks the effects of
oestrogen, is given most often to pre-menopausal women. However, I
have people I know here who were post-menopausal and were given
tamoxifen for a few years and then switched to anastrozole.Tamoxifen
also has nasty side effects, which include possible blood clots,
strokes, cataracts and uterine cancer. It can also cause weight gain,
vaginal dryness, leg cramps, hot flashes, and joint pain.For
this reason I have always said that despite all the dire comments we
get about triple negative breast cancer, I have always tended to be
positive about being triple negative, because there are no drugs
available for us after the standard treatment of surgery,
chemotherapy and radiotherapy.As
for diet, I think all we can do is try our best. It is good that you
are eating vegetables and fruit on a daily basis and you are lucky to
have easy access to organic in California. I do quite well in my
local supermarket, but organic for everything is not easy.There
is a lot of information about dairy products and growth factors (IGF)
in them that might be a risk factor in breast cancer, especially
hormonal. One of the first things that my breast cancer consultant
said to me back in 2005 was that she thought that dairy products were
a risk factor and should be avoided. I was not eating much in the way
of dairy at the time anyway, and I have been completely dairy free
ever since diagnosis. I know some women with triple negative breast
cancer seem to think that dairy is not connected because it is
non-hormonal, but my oncologist told me long ago that cancer cells
mutate and that triple negative does not necessarily start off as
such and may start off as hormonal.Anyway,
concentrate on the good things that you eat.With
reference to carbohydrates, we all have to be careful whatever our
receptor status, because the starch in carbohydrates is converted
into sugar and we all know that we should be avoiding sugar. We have
to remember that some carbohydrates are fine and we need them for
energy, but what we need to avoid is the simple carbohydrates, white
bread, white pasta, white rice, sugar etc. We do need some complex
carbohydrates, such as whole wheat bread, whole wheat pasta, and
whole grain rice. Of course, fruit is fine but fruit juice is not so
good because it is too concentrated.As
for soy, there are differing opinions about this, but I have read
that fermented soy, such as plain live culture yoghurt, is fine. I
know that women with hormonal breast cancer tend to avoid soy, but I
think there might be some confusion about phytoestrogens in plant
food, which are supposed to be beneficial and the oestrogen from
other sources.I
think, as in all things, we have to inform ourselves, weigh it all up
and make our own decisions.I
was wondering how it is that you lose weight fast. Do you lead a very
active life?It
is such a pity that the drug Arimidex causes so much damage.
Post-menopausal women are vulnerable to bone loss and osteoporosis so
taking this drug can only add to the problem. Ten years seems a long
time to be on any drug but I think that is the way the standard
treatment is going. I would definitely try to find out what
alternatives there are.There
are other drugs, also aromatase inhibitors, such as aromasin and
letrosole, but they probably have the same side effects but you could
research them and ask about them.Here
in the UK women with osteoporosis are offered bisphosphonates or
strontium ranelate but I have always refused both because of nasty
side effects. I have made up my own treatment for osteoporosis as I
said before and try to get my calcium from food.I
think everyone going through cancer treatment should request a DEXA
scan before and after their treatment. This is the only way to know
how your bones have been affected by your cancer treatment.You
may be interested to know that steroids can cause osteoporosis. You
may also be interested to know that the worst cases of osteoporosis
are in the countries where lots of dairy products are eaten!I
hope this helps. Keep eating your broccoli and fruit such as
blueberries.Keep
in touch.Fond
thoughts.Sylvia
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Hello
Suewirral (Sue),It
was nice to hear from you and thank you for the information about all
that you have been through. From what you have said it looks as
though we cannot necessarily trust the result of a fine needle biopsy
and have to wait for the pathology results. All that must have been
a frightening time. I went through that with the benign adenoma on my
lower right parathyroid gland. I was told there was a risk of damage
to the voice box. I had to see an ear, nose and throat consultant
before the operation to show that my voice box was normal before the
surgery. I do not suppose you will ever forget 1995.I
think that orthodox medicine is quite narrow in its thinking and does
not like anything outside of its box. However, there is research that
points in this direction. From what I have read, I am convinced that
my over active parathyroid was connected to my breast cancer. Who
knows what happens in the body when important hormones like the
parathyroid or thyroid are not functioning normally, be it over
acting or under acting. I watched one of my nieces turn into a very
difficult teenager, growing taller and taller and eating voraciously,
but being very thin. She was put on medication but at one point had
to be admitted to hospital as an emergency. She had an over-active
thyroid. She now seems fine as an adult but think she may still be
taking medication.I
think the thyroid and parathyroid levels need to be checked regularly
by the GP at check ups and anything not normal should be referred to
an endocrinologist.Congratulations
on finishing your chemotherapy and thank you for those words of
encouragement to any newly diagnosed patients facing treatment. We
are all proof on the thread that you can get through it.How
difficult was the radiotherapy for you? We all tend to find it easier
than the chemotherapy but we still have to take care of ourselves
going through it.Have
you have any post treatment scans? Have you had a DEXA scan to find
out if your bones have been affected? Are you now on physical check
ups every three months?I
hope your life has got back to normal.Fond
thoughts.Sylvia
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Hello
everyone,I am
just popping in to wish everyone a good weekend.I
think most of you posting have all finished your treatment but I am
not sure what is happening with marymargarethope and jacqueline1963.
I think both of you have probably finished your chemotherapy. It
would be nice if you could let us know and tell us what is happening
about radiotherapy, if anything.If
any of you who have been newly diagnosed need help, comfort or
company, please come on board.You
might be interested in the recent book by Patricia Prijatel, entitled
Surviving Triple-Negative Breast Cancer – Hope, Treatment, and
Recovery. It relates her own personal journey in a very interesting
and vivid way, but the book is so much more than that. It is a good
book to read, especially when newly diagnosed, as it takes you
through all the different things that will confront you. It will
prepare you for questions you might want to ask.I
have been reading through it and found it most interesting and
helpful.Wishing
you all the best.Sylvia
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Hi Sylvia,
I am really pleased that your check up was clear and on the road to being discharged, I will join that club one day! You are such an inspiration to us all.
I have arranged a meeting with Dr Hembry in Bristol, late November so really looking forward to that, thanks for letting me know about her. To be honest, I think I am already doing a lot of what she will recommend from my own research, but it's good to hear it from a professional voice.
Sue, I often lapse back into lazy mode regarding my eating, especially after chemo when I am feeling low, so don't feel too harsh on yourself.
I was in hospital during the week with a high temp and shivers, it wasn't netropenia, they are not sure if I had an infection or not, I think I did too much after chemo 7, there was a lot going on with the kids and I went to London to see my sister. It really proves how important rest is. Today I am tired and have a line of coldsores on my bottom lip - very unattractive!
Final chemo is next week all going well with bloods and surgery booked for 17th December. The surgeon is recommending only the bad boob to be taken off then, so he can concentrate on it and will take the other one off during reconstruction next year. I am quite down heartened about this, my boobs are large and having one massive one left behind is going to be difficult in terms of prosthesis, I can imagine its going to be very uncomfortable. However, he is the professional and I have listened to him. I would rather he put all his concentration on my lymph nodes and bad boob.
I can't believe how quick the treatment has gone, I really feel that I am nearing the end of this horrible time and can see the light. The next step is the surgery, then rads and finally to get through the next three to five years clearly and hope that I won't be too anxious during this time, however, I am sure the kids will keep my mind off it!
Speak soon all,
Marymargaret
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Hello
Marymargarethope,Thank
you for your kind words and keep looking forward to that day when you
will be discharged.I
was interested to know that you had arranged a meeting with Dr Hembry
in Bristol in late November and I do hope that you will find your
appointment with her useful. I certainly did way back in 2005. let us
know how you get on. I doubt if she will remember me but give her my
regards.I am
sure we all do our best with healthy eating and are bound to have
relapses but we do have to live as normally as we can. We have so
much information today, some of it conflicting, but I think we should
all know by now that the same advice for healthy eating for all the
chronic illnesses keeps coming up time and time again. We need to be
on a simple basic diet, sometimes described as the cave man diet and
we need to keep away from all the processed, junk and convenience
foods that are on sale today. I am sure you are doing this.I
was sorry to read that you had been in hospital and glad to know that
it was not neutropenia. The secret really is to get lots and lots of
rest and to drink plenty of water. It must be quite difficult for you
with your children. I do hope you will be getting plenty of rest
before that final chemotherapy. Remember that your body is under real
attack with these awful chemotherapy drugs. I have been reading that
patients have fewer side effects if they fast before and after their
chemotherapy session. I have no idea about this. I would think it
would be quite difficult a patient is very weak anyway. If anyone has
done this fasting it would be interesting to hear from them. There is
an article about it in the November edition of What Doctors Don't
Tell You. Cold sores are always a sign of being run down.Please
let us know how you get on with your final chemotherapy. You will
feel such a sense of relief.At
least your surgery will be out of the way for Christmas. It is
probably a good idea just to have the mastectomy on the affected
breast first of all and give yourself plenty of time to recover.It
looks as though you will have your radiotherapy in the New Year.Wishing
you all the best.Sylvia
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Hi Sylvia
I was so pleased to read that your scans and check ups were good.
I have lots of research news to add to the JCF website, perhaps I will get it updated tonight but in the meantime I wanted to share this from todays Daily Telegraph:
A DRUG derived from sea sponges extends the life of women with an especially aggressive form of breast cancer by almost five months, research has shown.
Two trials involving more than 1,800 women with cancer which had spread beyond the breast found that overall, the drug eribulin increased survival by two-and-a-half months.
The most significant improvement was seen in women with the advanced triple negative breast cancer, who have limited treatment options. One in five women with breast cancer suffers this type of disease. These women gained almost five more months.
The drug also added more than two months to the lives of women with HER2 negative breast cancer.
Eribulin was originally developed from a sea sponge called Halichondria okadai but is now made in laboratories.
It was rejected for routine NHS use by the National Institute for Health and Care Excellence (Nice) in 2012, but individual cases have been supported by the Cancer Drugs Fund.
Researchers from the University of Leeds and Leeds Teaching Hospitals trust said the improvement for women with metastatic triple negative breast cancer was substantial and said the drug should be offered to more women, and at an earlier stage.
The findings are being presented at the National Cancer Research Institute cancer conference today in Liverpool.
Martin Ledwick, head information nurse at Cancer Research UK, said: “These results are encouraging and may offer valuable extra time to patients whose cancers have stopped responding to conventional treatments and have few options left.
“Although eribulin isn’t a cure, it’s an extra treatment option for patients with advanced breast cancer.”
Mia Rosenblatt, head of policy and campaigns at Breast Cancer Campaign, said she hoped Nice would think again, having rejected the drug in 2012, and would act to ensure women with breast cancer could secure precious extra time with their families and loved ones.
Michael
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Hello
Michael,It
was lovely to hear from you and thanks so much for your kind words.
The level of anxiety awaiting check ups does not seem to diminish and
I find it quite stressful going to the hospital.I
shall definitely read up any research news that you put on the
Janette Collins Foundation website.Are
thing getting any better for you as you go through life without
Janette?I
was very intersted in what you had to say about the article in the
Daily Telegraph. I had heard of the drug eribulin (Halaven is the
brand name) and I think my friend and neighbour may have had it for
her metastatic breast cancer but she was taking so many different
drugs in her last year that I cannot quite remember.It
is intriguing to read that the drug was originally derived from sea
sponges. Extending life by five months is great news for those with
an aggressive form of cancer. Every month counts. My neighbour was
HER2 positive and had been on and off Herceptin ever since she was
diagnosed with the primary cancer. She died really suddenly in the
end and it was awful.It
amazes me that the drug companies always go to a synthetic form of a
drug after using the natural source for a while. I read a similar
thing about paclitaxel (Taxol) which was originally sourced from yew
trees but is now sourced from synthetics. I wonder, does it work in
the same way? I do not know if docetaxel (Taxotere) is now sourced
synthetically.I
wish we could get rid of NICE. If drugs are being produced that help
save lives, it is completely unethical not to make them available to
all those who need them. I do wonder about the Cancer Drugs Fund. It
seems to me that the fund does not help us to get the price of the
drugs lowered.I
wonder whether eribulin will eventually be used for primary breast
cancer and help to prevent metastases. The big challenge is with
cancer that has spread.It
would be nice to hear from anyone that is actually having eribulin.How
do you feel now that we are into November and the long dark nights?
Do you have any projects? Are you going to escape to the sun
somewhere?That
is about all for now. Wishing you all the very best.Sylvia
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Hi Sylvia
I think NICE are proving to be more of a liability than a help. I believe they were set up to end postcode prescribing but I do not understand why we have to have all these local health trusts. It is the National Health Service. Up until a few years ago the health service in NI didn't follow NICE guidance but now do so, which seems to have limited availability of drugs
I always thought that drug companies make synthetic drugs because it was a cheaper process.
I cannot say that life without Janette here is getting any easier. This time of year seems harder because Janette was getting sick during the autumn of 2011 so there are lots of unpleasant memories. Today is our wedding anniversary. To think I said to Janette "you realise what you are taking on?" thinking of my illness.
Weather in NI today is rather stormy. Yesterday was a stunning and beautiful day.
Michael
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Hello Michael,
I do agree with you about NICE. They are a liability. I do not understand why we have bureaucrats deciding about life saving drugs or any other drugs. It is all to do with saving money. The NHS appears to need £30 billion to get itself in the black and the Treasury loses £120 billion in tax avoidance/evasion by the rich, so if those people had a social conscience instead of pound signs for a mind, there would be no problems with the NHS. As it is, I fear we are going to lose our NHS to privatisation.
I cannot think that synthetic versions of drugs are better than the natural ones, but I can believe it is all to do with how cheaply the drug companies can make them and how much profit they can make.
I can understand how difficult this time of year must be for you and how it is associated with Janette getting ill. When it comes to dates that makes it all the more difficult. Somehow you have to try to keep busy on these dates. October is one of those months for me because of quite a few deaths in the family during that month. I do sympathise with you and can only say cherish the memories of the happy times you and Janette had together.
I think we all tend to get into low spirits at this time of the year. Today it is pouring down with rain here and it is very, very dull, not to mention stormy.
Do you think you are settled in Northern Ireland or does Essex still call?
Fond thoughts.
Sylvia.
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Hi Sylvia, I haven't had any post treatment scans and have been told that other than annual mammograms any scans or investigations will be done on symptoms that last longer than 2 weeks. Before i had my diagnosis I had had a bone density scan following a wrist fracture and know I have osteopoenia and was prescribed calcium supplements which i have actually stopped due to my ongoing kidney pains which i think may be due to stones or kidney gravel and can be exacerbated by calcium supplements. i do try and do walking to increase bone mass and eat calcium rich foods but i don't want any more bone density scans, I suppose i feel all scanned out!
Thanks for your kind words Marymargarethope re my diet. I have a mindfulness eating recording so going to try and eat more mindfully and not just stuff down my food in an attempt to feel better. I am thinking of you going through chemo and your surgery and hang onto the thought that soon this will all be a memory. I know we will all be anxious in the coming months and years but can be comforted that having in chemo and surgery we are doing all we can to keep things at bay.
BTW Sylvia my RT was fine, the 15 rads plus 5 boosters which I had during chemo was no problem apart from some peeling of skin in the crease under my breast which healed quickly after applying a bit of talc ( my own treatment which worked!)
I am getting back to normal thanks, well a bit. I do get down and lonely at times as most people don't really get it and think that I am all better. I still get tired and scared especially as my first post op mammogram will be on 1st December, soon after my first cancerversary. But hey ho, feeling generally much stronger and enjoying work which is still at a phased intro as I feel like sleeping after every lunch time haha!
Love to you all girls xx
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Hello Suewirral,
I think that your medical team has probably got the sensible approach, which is just the mammograms and then scans if there are symptoms that last longer than two weeks and are of concern.
I was surprised to read that you are having annual mammograms, as I have had them just every two years but things change.
I know that I am really keeping my fingers crossed that I shall be discharged next year as I reach ten years since diagnosis, as I am weary of hospitals!
I can understand that you have stopped taking the prescribed calcium supplements as I keep reading negative things about calcium supplements. We keep being told that calcium supplements cause heart problems but at the same time are told to keep on taking them!! It does not make sense and I am not convinced that they help to solve bone problems, especially the calcium carbonate prescribed on the NHS and which is said to be very difficult for the body to absorb. I have never taken any calcium prescribed on the NHS or anything else, such as bisphosphonates. I try to get my calcium from my diet but not from dairy products. I suppose we all have to do what we think is best for us. I think the most important of the supplements is vitamin D capsules. It is true that calcium supplements can have negative effects on the kidneys.
I do not intend to have any more DEXA scans either, as I do not think there will be any change in my osteoporosis. Orthodox medicine wants you on bisphosphonates but I think they are lethal.
I was glad to read that your radiotherapy treatment was not difficult for you and that you got through it with largely no problems.
I was really glad to know that you are slowly getting back to normal and I do understand that you can feel lonely. It is hard to get through to other people what it is like to go through cancer treatment, yet alone to get through it having gone through the death of your partner. Unless you have been through cancer treatment it is pointless to try to convey to someone who has not gone through it what it is like both physically and mentally.
I do hope all will go well on December 1st when you have your first mammogram since finishing treatment. It is always an anxious time. Please let us know how you get on.
It is good to know that after all you have been through you are feeling much stronger and are enjoying being back to work. When you feel like sleeping, just sleep. It takes the body a long time to recover from cancer treatment.
Thinking of you and sending fond thoughts your way.
Sylvia xxxx
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Hello Marymargarethope,
I was just wondering how everything is going for you. I know you are very busy with your children but I do hope you are managing to get some rest.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
Looking back through November and October I can see that the posts are diminishing, so it looks as though most of you may be moving on. The thread cannot continue without posts so I shall leave it up to you to decide whether you now need the thread.
Hello to linali, adagio, Susaninicking, Jackpot (Gill), Maryna8 (Mary in the US), Jacqueline (hope all is well with your treatment). Michael, many thanks for all your input.
Thinking of you all.
Sylvia
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Hello everyone,
I have been reading through some of the other threads on the TNBC forum and was concerned, as a fellow Brit, that someone was posting to say that in the UK we do not have the same resources as in the US. We have different medical systems. In the US it is private insurance based and in the UK it is state funded and free at the point of use for everyone. We have exactly the same resources.
For breast cancer the orthodox treatment is the same and is chemotherapy before or after surgery, surgery, radiotherapy. The pool of chemotherapy drugs is basically the same with the most common being epirubicin, doxorubicin, cyclophosphomide and a taxane, either docetaxel or paclitaxel. The taxanes are said to be highly effective against breast cancers that have triple negative receptors. All breast cancers are aggressive and individual and we can never be sure what paths they will take. Do not take any notice of all the frightening things on the internet about breast cancers with triple negative receptors. I do not think it is good to fill ones head with too much information or too many details. Work with your medical team and listen to what they say. If you are not satisfied, get a second opinion. During treatment take one thing at a time.
Remember that if you have a new primary you will be treated in much the same way as your first primary.
If your cancer comes back and spreads to other parts of the body, it is said to have metastasised and it will be stage IV breast cancer. There are chemotherapy drugs to treat this and patients can live for a long time with stage IV. Do not give up and make sure you get any drugs that are available. Remember, in the UK, we have a special cancer fund set up in 2010.
I think it is about time that the powers that be stopped calling stage IV terminal.
Keep strong and optimistic and live as normally as possible whatever the challenge.
Back in June 2005 I was diagnosed with breast cancer with triple negative receptors and was told the prognosis was not good because I was not hormonal and tamoxifen would be of no use. In June 2015 it will be ten years since I was diagnosed.
I am posting this to motivate and encourage all of you who are newly diagnosed and facing this challenge. Take care of yourselves and be strong through your treatment. You can do this as so many of us on these threads prove. Patients who are triple positive or who are oestrogen+, progesterone+ and HER2- face the same challenges as those of us who are triple negative.
Sending best wishes from the UK to everyone elsewhere in the world.
Sylvia
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Sue, I love that word, cancerversary! I will be using that one.
My last chemo is behind me thankfully and so this week is the rough one, but feel great, strangely, as I know that this is the last week I feel so ill! Chemo has been do-able for me, I've only had one little stay in hospital which was just a virus so all things considered I have come through it very well. My surgery is all booked for 17th December and the day before I will have an injection to ping up any affected lymph nodes to help the Doctor, that was something I hadn't come across in my research.
My rads will start sometime in late January and then reconstruction at the end of 2015. The plan is there, let's hope all goes well and I can stick to it!
I did have some excellent news, my last physical examination on nov 5th showed that the lump, which was 12cm, was hardly palpable!!!!!What!!! I was over the moon, Doctor was very surprised too, I have responded very well to the chemo and hoping that if that's whats it's done to the big one, imagine what it's done to any little ones. All the research for long term prognosis does favour complete pathological response with neoadjuvant chemo, but I will have to wait for the autopsy of the breast for that info.
I have had a few wobbles. A lady I know of, hers returned after two years and then someone decided to post on my Facebook about a young actress, similar circumstances to me, whose returned after five years. Both young women. Anyway, of course I had to find out more and both were HER2 positive, and I suppose only us BC girls can understand this, I was relieved. That sounds so selfish I know. Looking at the stats it seems that triple negative isn't the worse BC to have after all. I have a friend who is an onco nurse and when I told her I was triple negative she said at least you're not HER2 +. I didn't register that statement at the time.
Sending positve vibes to you all!
Mary
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Hello Marymargarethope,
I was reading your post and am so glad to know that you now have chemotherapy behind you. It is always such a relief to get to the end of chemotherapy as it is such a long haul over many months and it brings ups and downs. You have done very well and I am sure this will motivate others to know that they can get through chemotherapy. Make sure you still get plenty of rest, keep hydrated and keep looking forward. You need to be in good shape to go through surgery. We shall all be thinking of you on December 17th, which is not that far away. You will have it behind you for Christmas.
The injection that you describe sounds like the blue dye marker which will show up any affected lymph nodes so that the surgeon will know if any are affected and how many to remove if there are some. It was around when I was diagnosed but I do not think it was very current and I did not have it. After my mastectomy when I went for a consultation I was told that one lymph node (the sentinel node) as affected and that it had been removed along with six others to be sure but they were not affected. I was in the hospital for five days until the drains they put in after surgery were clear, but I think the hospital stays may be shorter now and I have heard of patients coming home with the drains in and being looked after by a district nurse. I suffered no pain from the surgery.
I can understand how pleased you must be over responding so well to chemotherapy.
Like you, I had neoadjuvant chemotherapy and was told after surgery that I had a complete pathological response and that there was no visible evidence of disease.
It looks as though your medical team have got it all planned out and it is good that you have dates. You will have time to recover from surgery before you have radiotherapy and then you will have a lot of time to prepare for reconstruction at the end of 2015.
It is of concern to all of us that we realise the cancer can return at any time or that we can have a new primary, but we have to focus on the positive, be optimistic and keep looking forward.
Like yo, I was also told by my medical team that I was lucky not to be HER2+. This is very aggressive and was only able to be treated when the drug Herceptin became available, as it helps to save the lives of HER2+ patients. When I was diagnosed it was hard to obtain and women were going to court to get it prescribed. My friend and neighbour who died a few months ago, was triple positive. She got through primary breast cancer and then it came back quite soon and spread. Being HER2+ probably played a role in this and she was still having this with metastatic breast cancer. I have always been glad that I have not had to take any drugs after finishing treatment, as hormonal medication is no picnic. I have just concentrated on trying to have a healthy lifestyle.
Once again, hearty congratulations on finishing chemotherapy.
The only one on the thread at the moment going through chemotherapy, or she may even have finished, is Jacqueline, but we have not heard from her in a while.
Fond thoughts.
Sylvia xxxx
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Oh girls i need need need your support. my daughter who is 28 whose wedding was cancelled found a breast lump yesterday and I am trying to be calm and strong for her but having a meltdown. I feel cursed what with my partner dying last year, the B cancer triple neg diagnosis 5 months later the chemo and the wedding jilting and now this!! Please please my baby will be OK. We are going to see the GP tomorrow and I will be insisting on a referral to the Breast clinic, Sue x
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Hello Sue
I was so sorry to read about your daughter and my heart goes out to both of you. I do hope everything will be fine with your daughter. It is always a shock to find a lump in your breast but remember that not all lumps are cancerous and it could be a cyst or something else benign, such as an adenoma. I can understand the state you must be in after all that you have been through yourself, but just remember you have come through this and if the news is bad for your daughter there is treatment and she can get through it. She will have the support of the group on here and she will have our experience and your own. As hard as it may be for you, be strong for your daughter and keep her confident that she will be OK.
Please come to the thread as often as you like and let all your feelings out.
I was glad to know that you have made a fast appointment to the GP. That was the best thing to do. I remember my visit to the GP and how she examined my right breast and under my arm and said she was pretty sure I had breast cancer. She told me the procedure was that she would notify the hospital and I would be seen within two weeks. That was in 2005, so it might be different now.
I felt I could not wait so I asked if I could get a private referral and within a couple of hours I was with a breast cancer consultant at the Nuffield Hospital in Exeter. She also examined my breast etc. and said that it could be breast cancer, but she had to prove it. She did a fine needle aspiration and arranged for me to see her the next day at her clinic in the NHS hospital and I proceeded from there with her under the NHS.
Keep your fingers crossed and get your daughter examined by a specialist as soon as you can.
Thinking of you and sending all my comfort and sympathy to you and your daughter at such a difficult time.
I do hope all the members of our little group will rally round you and your daughter and send their support and comfort.
Love.
Sylvia xxxx
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Hello Suewirral,
I answered your post this morning at 11:30 but I have just checked on our thread and it is not coming up under the Triple negative forum. It is still saying that the last post was from you 22 hours ago when my response to you was the last post about five hours ago. I do not understand what is going on. I hope you will get to read my long post of support for you and your daughter. I shall have to get onto the moderators to find out what is going on.
Thinking of you.
Sylvia xxxx
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Hi Sylvia I did receive your longer post and thank you so much. My daughter is a nurse and works in A and E. She got one of her consultant colleagues to examine her and the consultant sent a referral through today as my daughter is so anxious what with my diagnosis and everything that has happened. I keep having tiny panic attacks and feelings of dread which i know is probably to be expected but i keep thinking something else is going to happen. I think I may pop down to the Maggies centre tomorrow for a chat as the friends I have told really don't know what to say.Thanks again it really is nice to hear from you, Sue x
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Hello Sue,
I was so glad to know that you did get to read my longer post and I do hope it was useful at this difficult time.
I was interested that your daughter is a nurse and works in A & E. That must be difficult work with all the cuts in funding and front line workers. I was so glad to know that she had got one of her consultant colleagues to examine her and that she has had a quick referral. I can understand how anxious she must be, because of your own diagnosis and everything that has been happening.
A mammogram and an ultrasound should be able, I would think, to establish what this lump is, along, perhaps, with a core biopsy. Mammograms seem to know the difference between cysts and something else. I hope your daughter gets to know quickly what it is because waiting is always the worst.
I am not surprised you are experiencing some panic attacks and feelings of dread, especially as you have been through all this yourself. These times of trouble often come together and you think they will never end, but they do and we come out the other end. Someone I knew in Canada always used to say 'what comes around, goes around' and also 'this too shall pass'. She also used to say 'when you get lemons, make lemonade'. She was a wise lady.
I do hope you have managed to get down to your Maggies centre, as I understand they are excellent centres and am sure there will be people there to talk to you and offer counselling if you feel you need it.
It is very difficult for family and friends to know what to say when someone mentions cancer to them. Only those of us who have been on that journey know what thoughts and fears we experience. I found it easier to go through my own journey without telling most of my family and friends. I told them after I had finished treatment. I did tell my two brothers, reluctantly, but I think they found it difficult to talk to me about it. In fact one brother told me not to talk about it to him.
Please let us know if you do go to the Maggies centre and if it helps.
We have linali (Lindsay) on the thread who has been through treatment and she is very active in a cancer support centre near her. I know she gets a lot out of it. She has not posted in a while but I hope we might hear from her.
Thinking of you and your daughter. Please keep in touch.
Love.
Sylvia xxxx
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Hello everyone,
I was wondering how those posting in this thread are getting on, as we have not heard from some of you in a while. Judging by Exeter and Exmouth, the Christmas busy period is well underway and those of you in the US will be gearing up for Thanksgiving Day and the day after that.
Special hellos to adagio, Susaninicking, linali (Lindsay), Jackpot (Gill), Michael, Nisa, Marymargarethope and Jacqueline. I hope I have not forgotten anyone.
Wishing you all the very best and hoping you are all well.
Sylvia xxxx
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Hi Sue,
Sending you my support and love, I fully understand those horrible feelings of panic that seem to overwhelm and take over.
I find my cancer centre a place where I can go and there is an understanding there whether you want to talk or just say what is happening and sit with the others.
I hadnt meant to post for a couple of days as I am waiting for news but it is a hard and isolating place to be and I didnt want you to feel alone.
This thread was the place that I came to and where I could say exactly how I felt.
Thinking of you and your daughter x
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Sue, I am so sorry to hear about your daughter, I do hope all will be well.
Michael
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Hi Sylvia
I was in Chelmsford at the weekend and recalled that you ask if it has changed much so I took a few very short videos so that you can see for yourself.
Michael
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Well I did put in three links but they don't seem to have appeared. Try this: go to youtube and search "mikeycollins chelmsford"
and they appear mid way down the page as Chelmsford Nov 15 pt 1-2&3
Michael
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