Calling all triple negative breast cancer patients in the UK
Comments
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Hello Norma
It was very nice to
hear from you and to know that all went well at your six-monthly
check up. Your examination sounds exactly like the ones that I have,
but I am now into going once a year. My annual check up is in May and
it will be nine years since diagnosis on June 20th. If it
is any consolation I still get very nervous and worried about bad
news. I have been told that I shall be with the oncologist until ten
years since diagnosis if all goes well. Recently I have been reading
that oncologists never talk about 'cure' or even 'remission' but just
one year survival, five year survival and ten year survival.It was interesting to
know about your being asked to be a case study for a thesis she is
writing. I know this does go on and the daughter of a friend of mine
with TNBC was asked this as well. I was part of a case study at the
Bristol Homoeopathic Hospital after I successfully finished treatment
there which I had at the same time as going through my breast cancer
treatment. The consultant there dealt with a lot of breast cancer
patients, was a former breast cancer consultant before switching to
homoeopathy and was also a lecturer. She asked my permission to use
my case.I was surprised to read
that you have asked for the removal of your healthy breast. I can
understand that your consultant needs justification to perform this,
since you do not have the BRCA genes. I would be interested to know
what your reasons for this are. Is it out of fear of spread to the
healthy breast or for a new primary. We are all different. I never
contemplated reconstruction surgery after my mastectomy and equally I
would not contemplate a prophylactic mastectomy of my healthy breast.
I feel I would only have a mastectomy if cancer occurs in the healthy
breast at some point. I did not qualify for genetic testing.Let us know how you get
on.I am glad to know you
are keeping up with the posts.I hope you have a good
Bank Holiday weekend.Love.
Sylvia xxxx
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Hello everyone
I just wanted to say
that I have just read the links that Michael has so kindly posted for
us all and I have found them all very interesting. I do urge you to
read them and, if you find some of them complicated, just try to take
in the basic gist of them.The first link is about
treatment of breast cancer through hyperthermia. This is heat
therapy. I have been reading quite a lot about this recently. I did
learn about it when I was first diagnosed in 2005 and discovered
there was a clinic in the UK that did this. It was private at the
time and very expensive. I was also told at the time that it was good
for small tumours. No doubt things have progressed since then.The second link is
about AMP1-109 a new drug against TNBC, apparently it blocked growth
cells by 50%. Please remember that I am simplifying according to my
own understanding, so please read the link yourselves. There is
information about PTP4A3, a potential oncogene in triple negative.The third link is about
the high expression of the tumour-suppressor ZMYND11, which is
associated with longer survival of triple negative patients.In the other links I
picked up on information about improvement in pathological response
by adding carboplatin and/or veliparib to neoadjuvant chemotherapy
regime.Another link was about
VS-6063, an orally available compound designed to target cancer stem
cells. Cancer stem cells are associated with progression of cancer.I hope you will all
read these links and comment on them.Please try to read,
also, the article about radiotherapy equipment not being used. This
latest form of radiotherapy is called Inverse Planned
Intensity-Modulated Radiation Therapy, IMRT. There would appear to be
a bit of a lottery going on.There is an even more
high tech treatment called Stereotactic Ablative Radiotherapy. SABR,
and yet this is not being offered even though some hospitals have the
machine. SABR is also known as cyberknife.Apparently advanced
radiotherapy really improves survival rates and yet some NHS patients
are getting second best when it comes to radiotherapy, depending on
their type of cancer and where they live.There is a lot more
information in this article. Please read it.I hope everyone has a
nice relaxing Bank Holiday weekend doing what they enjoy most.Sylvia.
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Hello Sylvia and all,
I am reporting in. My last infusion was on April 9, I have felt better than after the first infusion, but superstition stopped me from posting. I did not want to jinx myself and be overconfident...silly, I know. I go today to have labs drawn and my levels checked, to see where I am in this process. I am sure I am not at the dangerous levels where I was before. And no elevated temperature!
Before my last infusion I talked to one of the oncologists, she told me I will still be doing the Taxotere; it will be after I finish the series of Adriamycin/ Cytoxan. That is what Carolben predicted. I do not yet know what the plan is, maybe I will learn something today. Could be 4 infusions of each, or 4 of the one and 12 Taxotere weekly, she said there are lots of options. Depending on how I handle the current one. So I may know more later today. My oncologist is finally back from vacation today, but he is retiring in June. So I will have to have another doc too.
The first few days after infusion I was quite tired and I did not check the posts here. I have since done so and want to thank you for your concern about us newbies. I was interested in the topic of thyroid conditions affecting the incidence of breast cancer. I have long thought I had a touch of hyperthyroidism, but have not been checked for it. I would notice it sometimes when exercising, I would break out in a cold sweat, become very weak with rapid heartbeat, and feel quite ill. With a little rest it would get better. Perhaps something to consider looking over.
I too hope Shorfi is doing well.
As I hope all here are doing well!
I will check in later, and thanks for caring, Sylvia! It's wonderful to have this place to share experiences and information.
Mary
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Hi Norma and Sylvia,
Just a comment or two on prophylactic breast removal. Norma I would be standing in that line with you for sure! My BC was found early but there was early discussion of mastectomy because of two tumors on opposite sides of that breast. No objection from me but I asked if they would please take both. Germany response is absolutely not and my doctors had zero understanding of why I would be so insane as to utter these words. My reasons are mainly twofold. I know at my age what I can and cannot within reason deal with, and one removed breast and the other 58 year old saggy breast, kind of on the large side, well it's just not for me. I would also volunteer today for a total mastectomy so as not to have to worry about recurrence. No question. I know others see this differently and in Germany I have no hope of anything voluntarily. I've asked mire than once.
My friend in Germany had one breast removed and immediate reconstruction. Then the other breast had to be reduced and she had to have biopsies of two spots in the remaining breast before they could do the reduction. This to me is just nuts. Too many operations and the fear about the two new spots....sheesh. My male doctors need to sit with this kind of fear and THEN tell me no.
I have a friend who is a breast surgeon in the states and I hope I do not have to pay him a visit but like I said, I know what I can and cannot deal with.
My first mammogram post everything is in about a month and I'm already as nervous as a cat. Nature of the beast I suppose.
Hang in there ladies. Susan
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I have my 3 month check up today with my oncologist - hoping for the best. I certainly don't feel as good this time as the last time, simply because of my 2 bad falls - both of which were on my cancer side. My arm and shoulder still cause me a lot of pain, and pain as many of you know can drain the energy right out of you.
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hi Sylvia
I was just wondering if you have received your book yet and if you have what you think of it, I'm finding it very interesting
We had more sad news on our superstars group today, Lulu Luke was diagnosed with brain mets and is not very well, she has fought so hard for so long and has been a wealth of information and support to so many ladies going through this disease, we are waiting for updates from her sister but they do seem worried
My holiday is all booked for may 3rd were going to kusadasi in turkey, it's only for a week but I'm really looking forward to it, it'll be lovely to get away from hospitals and appts for a bit
You asked whether I keep in touch with anyone from treatment, there is a couple of ladies one was triple neg who is doing well, the other I talk to regular was from radiotherapy who had a lung tumour which has responded well to treatment and shrunk significantly and she is currently having a break from treatment, unfortunately they have already told her it is inoperable, there were a few other ladies that I am left wondering what will happen to them and how their doing but we never exchanged numbers so I suppose I'll never know
I'm feeling quite down today with finding out about Lulu, the scary thing is as well is the two girls we've already lost and Lulu are all triple neg, there was only 8 of us to begin with out of 38 so it's quite worrying, I was really starting to feel quite positive about things and it's a real knock back
Take care
Gill
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jackpot - have a wonderful holiday and try to forget cancer - just focus on enjoying yourself! I know what you mean about getting discouraged - I don't write here often, but I do read this post and a couple of the others and it is quite depressing to hear about metastasis. I have been struggling recently with fear especially since a good friend who was diagnosed the same time as myself just passed away last week - it was very sobering!!! Then the next day, I met another 'cancer friend' who had just been diagnosed with mets to the bone - and my sister who was just diagnosed one month ago is already in palliative care. These situations make me very aware of my own mortality. I don't mean to alarm you or anyone, but what it has helped me do is to embrace each and every day and truly live life. We are all doing the very best we can and we are all in it together - it helps to know that we are not alone. Take lots of deep breaths in and then breathe out again and try to live in the moment. Look forward to hearing about your vacation - it is truly a well deserved break for you. Look after yourself.
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hi adagio
Sorry to hear about your sister and friends, this really is a shitty disease, I suppose it's part and parcel of the new circle of friends we all have now that bad news is going to happen sometimes,
Your right though it does make you very aware of your own mortality and it scares the crap out of me, I hope I can enjoy my holiday and forget about all things cancer for a few days
I hope the arms feeling better now adagio
Take care
Gill
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Great news, Norma, 6 months clear - celebrate!! If I did this all again I would have wanted a bilateral mx, I'm lopsided - I see it in yoga, my body leans to the opposite side of the mx. But right now, I just couldn't face the thought of such big surgery and I remember how I felt mauled after the mx, so it's not an issue. I believe that even years after dx, the anxiety with each check up is there. I get crazy before each scan - scanxiety. But I think your anxiety is perfectly normal.
Maryna8, how did the last infusion go? Did they decide what to do about the Taxol? I hope it went easier without it!
Sharfi, hope your surgery went well, and you're not in too much pain/discomfort.
Sylvia, I finally got a copy of "Cancer, the Emperor of all Maladies", which I am reading, small bits at a time - it requires a lot of concentration and I have the attention span of a flea these days! Can you think of any other books - I like the ones with humor, (loved "Bald in the Land of Big Hair) and also got a lot from "Bah to Cancer". You did suggest "You need Humor with a Tumor", any others you can think of?
Jackpot, my son was just telling me about the Nutribullet - like Sylvia, it worried me that I was throwing away all the fibre when juicing, and the cleaning is a pain. My sister is coming out from the States in September, so I'll ask her to bring me one. I did get a bunch of 'recipes' for blending veggies, which I still have to try.
Adagio, hope your arm is healing well! It's not easy managing with only 1 working arm!
Thanks for posting all those links, Michael, will have a look at them. I love that you guys post these links to articles etc, so much information, thank you. And I'm pleased you had a good time in Ibiza, hope you soaked up lots of sun and peace!
It took me a week to get over that flash gastro bug I had (!!!), but I made my yoga class this morning, am on my week off treatment and feeling human again, am so grateful that my body does bounce back. Well, it used to bounce, now it kinda crawls!
Hope we all have a good Easter weekend, side effect free!
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Thankyou Sylvia, Susan and Carol for your supportive comments about my decision to (hopefully) have my other, healthy boob off. I have been thinking since my visit with my Surgeon that what she was really saying was she has to justify the cost of removing the healthy breast to the Primary Care Trust. Seems that, like everything, money dictates so many decisions and NHS is pretty bankrupt. My reasoning is however that if I am having general anaesthetic to undergo the breast reduction she originally planned for me then might as well go the whole hog. Like you say, Susan and Carol, I feel lop sided and ridiculous with one 60 year old large, floppy breast and then nothing the other side. Cannot bear the plastic chicken fillet thing they have given me (mine more like an ostrich fillet).
I am so sorry to hear the sad stories from Gill and Adagio. As a matter of fact the Facebook site I am also a member of has had similar events, 3 young members in their 30s have died (all in the USA) and I have found that very sobering. I think how cruel and unfair life can be. At these times I have to dig deep and pull myself together as it is very easy to become overwhelmed with fear. Most women survive a triple negative diagnosis and I try to remember that.
We are all in this together as Adagio says, recognising each others hopes, fears and worries. That is reassuring to me, knowing I am not alone.
Love to you all, Norma
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Hi, Carolben, glad you are over your bug.
I pondered over whether to have a BMX too, I ended up keeping the healthy breast because I am small anyway...not a large difference. Like you, I was overwhelmed by the thought of a bigger surgery. Also the doc who did my biopsy told me that with TN, if cancer does come back it's not likely to come back in the other breast anyway. Not sure if that's right or not.
My second treatment without the Taxotere was much better; I haven't had the fever, the neutropenia, or the mouth sores and the hemorrhoids aren't quite as bad. Must be some powerful stuff! The onc told me I don't get to skip it though; it will be as you said, they will give it alone after finishing this 2-drug series. Before I started chemo another onc told me that doesn't work as well as the 3 together, but I don't see as I have a choice. I couldn't have done another one like my first one.
Hope you have a great weekend, and I can't help but smile a little when I think of you doing your lop-sided yoga!!
Mary
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Hello Mary
Thank you for letting
us know how you are getting on. I was glad to know that you are
feeling better than after the first infusion. I do hope all your
blood will be in order.I do hope everything
will go alright when you go on to the Taxotere. When I had my
treatment I had the epirubicin (Ellence) and cyclophosphomide
(Cytoxan) together for the first three months and then I had
docetaxel (Taxotere) on its own for the next three months. I am sure
you will be alright with the way it is being administered. For the
moment, concentrate on getting through the first infusions and then
when that is behind you, you can concentrate on the Taxotere.I am glad to know that
you are checking the posts and, of course, we are all here for you as
you go through chemotherapy. Those of us who have been through
chemotherapy want to help the newly diagnosed as much as we can and
let them know that they can get through this.I do hope your new
oncologist will be to your liking.If you think you have
any thyroid problems I would get it checked out. In the UK you can
ask your GP for a full blood test and that routinely involves
checking the thyroid to see whether it is under-active or
over-active. What they do not test is any problems with the
parathyroid, which are four tine glands that sit on the thyroid
gland. A routine blood test also tests for calcium serum levels in
the blood and if they are high or slightly elevated this should be
checked out.We have not heard from
Shorfi in a while. I know that she was having reconstruction on April
9th so perhaps she is still recovering from all of this.
Perhaps she will post in if she is still viewing.Thank you for your kind
words about the thread. It makes it all worthwhile.Take care.
Fond thoughts.
Sylvia xxxx
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Hello Susan,
It was nice to hear
from you. I can understand why you would want to have the healthy
breast removed. It is true that with one breast removed we are
lopsided and I am so glad that we can have a prosthesis to balance
things out. Just imagine what it would be like without the modern
lightweight prostheses that are available. I am quite comfortable
once I slip my prosthesis into my bra and am hardly aware that it is
there. Thank goodness for special mastectomy bras or the flaps
available from companies Amoena that sell special flaps that can be
sewn into our ordinary bras. Without these we would have to insert
the 'softies' that we are given to put in our bras for a while after
surgery. I would not have wanted reconstruction at the same time as
the mastectomy surgery, as it makes the surgery so much longer. I did
not want it afterwards either, as I feel the fewer surgeries the
better. Anaesthetic and surgery are major traumas and carry risks,
not to mention the risk of not knowing what we are possibly stirring
up in the way of hidden or dormant cancer cells. I think, for me,
with breast cancer it was have the chemotherapy, surgery and
radiotherapy and then try to get on with your life. Although we are
told that lumpectomies are as good as mastectomies, as regards
survival rates, even if I had had a choice, I would not have wanted a
lumpectomy for fear of something being left in the breast. You can
still get recurrence even with breast removed. My oncologist told me
straight away that you can get recurrence after a mastectomy and that
the most usual place was the line of the mastectomy scar and that the
first sign was a rash.I am not sure what the
policy is in the UK about removing both breasts, even if one is
healthy. I suppose they would weigh up the risks.I do hope all will go
well with your first mammogram post-surgery. I think we all get
nervous, but there is nothing we can do about it. I shall soon be
going for my annual check up with the oncologist and I am also
beginning to get nervous.Wishing you all the
very best.Fond thoughts.
Sylvia xxxx
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Hello adagio
It was nice to hear
from you. I do hope everything went well with your three-month check
up with your oncologist.I can understand that
you are not feeling 100% because of the two bad falls you have had.
As you say, pain is very draining and it takes a long time for the
body to heal.Let us know how you get
on and have a nice Easter.Thinking of you and
sending you best wishes.Sylvia xxxx
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Hello Michael
I see you have been
hard at work again. Thank you for posting some more links. I shall
look at them later on.Have a nice Easter.
Best wishes.
Sylvia
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Hello Gill
It was nice to hear
from you.I did receive the book
and have been going through it with an initial glance. It is truly
interesting and packed full of information. I shall be using it
frequently as a reference book. I like it because it has so much
information about cancer in general, and conventional treatments,
besides information about alternative ways to deal with cancer and
diets for cancer prevention and treatment. I read through chapter 8
which was entitled Causes of Cancer, and was astonished at all the
possible causes. I think I knew a lot of them but to see a list at
the introduction on chapter 8 was very thought provoking. For others
who might be interested, number one on that list was tobacco smoking,
followed by refined sugar; cancer's source of energy, lack of dietary
fibre, vitamins and antioxidants, diets high in protein, red,
processed and overheated meat, dairy products, alcohol, GMO foods and
so the list went on.For those interested,
the title of the book is “The Natural Cancer Handbook” by Johanna
Schipper and Frank Vanderlugt.I also found chapter 7
Forms of Conventional Treatments very interesting. This would be very
interesting especially to the newly diagnosed and those going through
treatment. I was especially interested in the section about Pinpoint
Your Chemotherapy. This chapter is about picking the drug to which
your cancer is most susceptible, so you can have the most effective
chemotherapy possible. You could ask your oncologist about it.Gill, what have you
found most interesting so far about this book?I was so sorry to read
that you have had more sad news today on your Superstars group. I do
remember Lulu Luke and remember reading some of her blog. It was
Peter (peterandliz) who mentioned her to me. I was sorry to read that
she has been diagnosed with brain mets and is not very well. I do
hope she will be able to have some treatment. I am concerned about
Peter, as the last time he posted here he was very depressed and
concerned about his wife, who was in a lot of pain after successfully
going through treatment. If you have any news of them please let me
know.Thank you for the news
about the women with whom you keep in touch.I can understand that
you are feeling down today with the news about Lulu. You have to
remember that more women with triple negative breast cancer are
surviving than are not. Also remember that even with metastatic
breast cancer, you can live for a long time going on and off
treatment. I agree with Chris Woollams when he says that the powers
that be should stop talking about “terminal” cancer and just say
stage IV. The word “terminal” makes people think “close to
death” and that is not true.You mentioned there
were 38 of you to begin with and that 8 of you had triple negative.
That is about right. More of you have survived than have not. You
have to focus on that and on keeping yourself well. We do not know
the complete story of those that do not survive. We do not know their
general health before diagnosis and what adjustments they made to
their lifestyle after diagnosis and after treatment. There are lots
of causes and risk factors I developing breast cancer. After
treatment we have to look into those lifestyles and make adjustments
where we can in those things over which we have some control, such as
nutrition and keeping active.Try to remain positive
and enjoy each day.Happy Easter.
Fond thoughts.
Sylvia xxxx
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Hello adagio
I am just working my
way through all the posts and have got to the one that you wrote to
jackpot. I was sorry to hear about your friend who died last week and
was diagnosed at the same time as you. It is all very frightening
and, as you say, makes us all aware of our own mortality and how we
have to take advantage of each day and live it to the full. I do hope
your other 'cancer friend' will respond to treatment. Did these two
friends both have TNBC and how soon after did one die and the other
get diagnosed with mets to the brain. Do you know what kind of drugs
the one with mets is being given?I was very sorry to
hear that your sister was diagnosed a month ago and is already in
palliative care. Are you able to explain what has gone on there?I still get afraid even
though I am nearly nine years out and am already worrying about my
annual check up with my oncologist in May. If only we could put this
wretched disease behind us. It does not help when I keep reading how
the very treatment that we all have had is also a cause of cancer,
yet we had no choice really but to have the treatment.In the book I was
discussing with jackpot (Gill), in chapter 7, entitled Forms of
Conventional Cancer Treatments, it has the following headings:
Chemotherapy, Disadvantages of Chemotherapy, Low Effectiveness,
Temporary Results, Extreme Cytotoxicity of Chemotherapy Drugs, and
then a heading Minimising Chemotherapy-induced Illness, Pinpoint Your
Chemotherapy, Insulin Potentiation Therapy (IPT), (I have to read
more to know what this is), Avoid Hair Loss Due to Chemotherapy,
Huang Qin Tang Heals Gastrointestinal Damage, Beta-Glucan.There is a lot we can
pursue hear and discuss.Thinking of you and
sending best wishes to Canada for a happy Easter.Thank you for your
contribution to the thread.Sylvia xxxx
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Hello Carolben
It was nice to hear
from you. I was glad to know that you are reading “Cancer, the
Emperor of all Maladies”. I am sure you will find it very
interesting. Just take your time reading it, as it does require a lot
of concentration. It is a good reference book as well. I have not
seen any other books written by patients themselves and with a lot of
humour recently, but I shall keep a watch for them. Whenever I go to
the Waterstones book shop in Exeter I have a look to see what is
going on in the Health section. I have not found anything new lately.As for the Nutribullet,
you might want to research it on Google and Amazon. On Amazon, there
were good and bad comments about it. I have decided not to get one
because I think the juice may be too concentrated. Of course, you
have to use your common sense and put in a mixture, otherwise you may
be getting too much of one nutrient and not enough of another. It is
a bit like fruit juices sold in stores, which are too concentrated
and probably send your blood sugar levels up too high. I am going to
stick to basic simple healthy food and have a selection of vegetables
at dinner time and a mixture of raw vegetables at lunch time.I was glad to know that
you are feeling more normal during the week off chemotherapy. I keep
hearing good things about yoga.Sending you best wishes
from the UK to South Africa and wishing you a Happy Easter. I see
that Easter Monday here is known as Family Day in South Africa but is
still a public holiday as it is here.Take great care and
keep in touch.Fond thoughts.
Sylvia xxxx
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Hello Norma
I do hope you get what
you want with regards to removing the other breast.I do agree that the NHS
is in a terrible financial state and that we all have to fight our
corner to get what we want with our breast cancer treatment. there is
so much money being wasted on bureaucracy, fraud, theft and abuse and
that the NHS is being ruined and slowly privatised. It is a disgrace
what has been done to one of our finest institutions.I was so sorry to read
that you have also had deaths on the Facebook site of which you are a
member. It is awful that three young members in their thirties have
died, all in the USA. When I look at Calling all TNS there seem to be
a lot of deaths as well. I still think there is not enough emphasis
on prevention and pinpointing causes.You are right to focus
on the fact that most women survive a triple negative diagnosis and
that we all have to think positively and live each day to the full.I was wondering if you
have heard anything from Apandy (Anne) and big_leggy (Sandra). They
have both finished treatment and we have not heard from them for a
while. I do hope they are alright.Happy Easter.
Fond thoughts.
Sylvia xxxx
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Hello everyone
I am just posting to
wish all those that post on here a very Happy Easter and a relaxing
long weekend. I am sending best wishes to linali (Lindsay) in
Ireland, to InspiredbyDolce in the USA, to hero1967 in Wales UK, to
peterandliz in Norfolk, UK, and not forgetting Apandy (Anne) in
London and big_leggy (Sandra) in Scotland. To shorfi in the USA, let
us know that you are well after your reconstruction surgery. We would
love to hear from all of you.To all of those
viewing, have a Happy Easter and do not be shy about posting.Fond thoughts to
everyone.Sylvia
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Hi Sylvia and Friends!
I'm just hopping in to wish everyone a wonderful Easter! I've heard from some of you this week, thank you for all the lovely notes. You are such gems! Thanks for also adopting me from across the pond a few years ago. I feel like I'm your next door neighbor!
I am curious about the Nutribullet. It is tougher on stuff than the Vitamix? When I blend sometimes my whole blender starts moving around the counter. It seems to have a hard time with slightly frozen broccoli. Even when I hold it in place, it can still move around!
Also, I've been looking for posts and haven't seen an update from PetraandLiz. I know we've been wishing the best for Liz and was hoping that her cough had cleared up, especially with Spring being here now, maybe the warmer weather is helping her. Has anyone had an update? If so, please let them know I'm thinking of them.
Sylvia, as always you have posted a lot of great information and I'm looking forward to reading all that you have shared.
Adagio, positive vibes on excellent results from your checkup. I hope you get your results very soon!
Happy Easter my UK friends!
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Jackpot and Adagio, (and Everyone too!)
I just read the updates from you both - losing friends is hard and it reminds us as well of our own mortality. Healing thoughts to all those who have lost a friend and healing thoughts to everyone going through treatment at this time.
While it's hard to understand all the reasons of why someone who was diagnosed around the same time as us or who had a similar diagnosis didn't survive, it does not mean that will happen to us specifically. The active TNBC community on Facebook and BC.org are only a small subset of the overall TNBC population. Many survivors have gone back to their lives, they are not actively online in cancer groups or frequenting breast cancer forums. There are many unknowns about each person's medical case, and even someone who has a signature line similar to yours could have more or higher risk factors in terms of prognosis. Just comparing a stage 1 to a stage 1 (stage 2 to a stage 2, etc) individual may seem like apples to apples, but there can be stark contrast between the two cases and an indeterminate amount of information that is not known and is neither a part of our signature lines. As you can see, even here at bc.org, tumors from 1.0cm up to 1.9cm are listed as 1cm on the signature profile, making the data appear similar even though the size of the tumor can be much different within that one classification. There is a lot of data that is vague. And Sylvia mentioned several other facts that we don't know about each of these situations.
Regarding Sylvia's observation about TNS and our thread, I too agree with her that we need more prevention and targeted therapy, as well as earlier screening. However, we do have some excellent milestones to post. A few weeks ago, I made up a TN survivor list and posted it in our forum to give strength and encouragement to women. There were many names that I posted, and many of those names were well past the 5 year mark. Imagine if those individuals were active on our thread still in terms of posting. It would alter the perception that more of us are surviving. Some were over 20+ years out on the list that I posted. Almost all of the names were no longer posting. I found them by going to the very start of our thread, several years back, and then clicking on the name to see if they had posted or recently checked in by logging in.
We can choose to see the negative or the positive, and I really believe sometimes the negative appears more prominent and is sometimes readily picked up upon, due to the overall situations of a small group of people collectively trying to help others through a particular struggle. But if you look just a little beyond you will find lots of survivors! If instead, we had a forum that was labeled "10 years out from TNBC and loving life" than we would see the shift because the participants will be a different group of people visiting a different type of forum. In that forum, you would feel amazing reading the updates and likely have a whole different perception. It's really hard to put everything into the proper context, and because this is a breast cancer forum, it is expected to see struggles within the breast cancer community, because of the type of group this is. Now, come on over to our Let's Post our Daily Exercise Forum and you see nothing but survival! In fact, if you all do exercise, I encourage you to join the forum and put your numbers up! It's really a fun forum, and I tell you ... on those days when I don't want to go workout, I log in and see what everybody has done, and it gives me the motivation to get out there! We need another support forum though, called "Wait, before you go for that piece of chocolate or dessert, log in here first".
)Hang in there you ladies, you will get there. Keep supporting and loving each other as a group, lean on Sylvia for her wonderful medical publications and all the other information that you all share so open and willingly with each other and together you will soon begin to experience survivorship, with much less fear and worry.
I love you all - you have been so compassionate and warm to me, you all
never wavered and told me I can do it. Now I'm reminding you of the
same.Happy Easter and many hugs. xoxo
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Dear InspiredbyD
Thank you so much for the above post - It helped me no end and put things into perspective. I do think what you have said is very true - many, many survivors moving on with their lives - and I will try to remember this when those little niggles creep in.
Fond regards
Norma
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Hello InspiredbyDolce
(Debra),Thank you for your
post. You are always welcome on this thread.We have not heard from
peterandliz and I am sure we are all wondering how they are. We hope
they did not have any bad news and are just getting on with their
lives.Thank you for all your
wise words. I agree that we have to focus on all those people who are
surviving breast cancer and they do outnumber those who are not
surviving. We also have to remember that there are other women who
did not have triple negative receptors who also do not make it. I am
talking of those women who are ER+, PR+ and HER2-, which is the most
common receptor status, and those who are triple positive. Remember
triple positive is also very aggressive. I have a friend with this
who has mets after a relatively short time. As you say, many women
have had the treatment and got on with their lives, putting cancer
and these forums behind them. We all need to live life on a daily
basis and live it to the full. The past is behind us, which we cannot
change, the future is an unknown, and we are just in the here and
now.I do hope you are all
putting breast cancer into a dark corner for the Easter weekend. For
us in the UK, it is a long weekend with Friday and Monday a public
holiday. We are a strange country and I suppose this is mainly
because, unlike most countries, we do not have separation of church
and state. That goes back to Henry VIII. Today all big stores have to
close, just as they have to on Christmas day. Tomorrow is a Bank
Holiday but most stores will be open!!! I see that in the US Easter
Monday, as we call it, is not a public holiday.Today, April 20th,
I have now reached eight years and ten months since diagnosis.Best wishes to you,
Debra, and enjoy your Sunday.Fond thoughts wafting
over to you in the US.Sylvia xxxx
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Hi
I hope everyone is having a nice Easter.
Here are a few more links. Apologies if there are any repeats, it gets a bit hard to keep track.
http://pipelinereview.com/index.php/2014032753816/...
http://www.healio.com/hematology-oncology/breast-c...
http://medicalxpress.com/news/2014-02-osteoporosis...
Michael
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hi Sylvia and all,
I had my 3 month check up with my oncologist and she is very happy with how I am doing. Lymph nodes are all clear and she even assured me that there is no cancer in the bone in my arm. If you recall I had 2 bad falls within 5 weeks of each other, and I still have a significant amount of pain in the arm - my GP hinted at the fact that it may be the cancer that had spread to my bone!!! This was very anxiety producing - but my MO studied my x-rays very carefully, and she said that the bone is healthy - I was so relieved!! No need to see her now for 3 months unless there is a problem of course.
Sylvia - in regards to my friend who died - her cancer started in a salivary gland, and had already spread to the liver at time of diagnosis. She then had a perforated bowel (not directly related to the cancer, but perhaps all the drugs contributed to a weakness there) - the perforated bowel caused a systemic sepsis and her body just couldn't fight the infection - it was very sad.
My other friend with the mets to the bone (not brain) was diagnosed in 2011 with breast cancer - went through chemo and rads and then never felt that her full energy ever returned - she started getting pain in her lower back and hip joints and just a month ago they detected that it had spread to her bone. She is not triple negative.
My sister has stage 4 colon cancer with mets to the liver and the lung - she was without symptoms until mid January and then started having abdominal pain - by the time she saw the specialist, she had to be hospitalized and start having intravenous morphine for the pain. She is at home now and the palliative care nurses come to see her and check on her meds etc. They have told her to expect 2-3 months to live - but who knows - I really don't know how they can tell. My sister lives in England and it sounds like she is being well cared for - I talk to her a couple of times a week - she is comfortable and not in any pain because she is on morphine 24/7.
We have to remain positive about our own situations and for me the aim is to keep stress levels as low as possible - sometime this is very challenging, but I try to remember to breathe in and breathe out again and try to live in the moment because it is the only thing we are absolutely certain of at this time.
Hope everyone is enjoying a happy Easter - I for one have eaten way more than I ordinarily do, and completely different stuff - must get back to the basics starting tomorrow.
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Hello Michael,
Thank you once again
for posting the links. I shall try to catch up with them.How have you spent the
long Easter weekend?Best wishes.
Sylvia
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Hello adagio,
Thank you for letting
us know that all went well at the check up with your oncologist. I
bet you are feeling much better now and can relax a bit more.I cannot believe that
your GP had said that the pain might have been due to cancer that had
spread to the bone. I think that was out of order. I am not surprised
that it made you anxious. If I were you and had any doubts or fears
about pains I would get in touch with your oncologist.Thank you for telling
me about your friend who died. How tragic. It just shows we cannot
take anything for granted.I do hope your other
friend will improve with treatment. What kind of breast cancer did
she have? I know we all tend to say what receptor status we had or
have, but I think the kind of cancer is also very important and plays
a role in survival. The most common one is invasive ductal carcinoma
but there are others, such as invasive lobular carcinoma as well as
inflammatory breast cancer and metaplastic breast cancer. Of course
there is also DCIS and LCIS, which some say is a pre-cancerous state,
but seems to get the same treatment as other breast cancers.I am sure we are all
glad about your good news and long may it continue.It is so sad about your
sister. The thing about colon cancer is that it is there without
symptoms until it is very advanced. I do hope that the time-scale is
wrong. I think with cancer one never really knows how long one is
going to survive. I was watching the local news this lunch time and
there was a woman on there at a big fund raising event that she had
organised for the second year running after being told four years ago
that she had a brain tumour and had only four months to live. The
human body is unpredictable and unfathomable and there are these
cases of unexplained remission. Where in England does your sister
live? Are your roots back here?I do agree with you
about stress. I think it is a killer and I think it is all to do with
our Western way of life, which is all about money, profit and power.
We all need to live life in a more relaxed way, as we only get one
life. The UK is in a dreadful state and I do not think there are any
capable people in government to get it sorted out.I hope you are having a
relaxing day today.Fond thoughts.
Sylvia xxxx
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Hi Sylvia
I had a nice weekend, my youngest Alex came to stay and we always have a laugh together. The weather has been nice and seems set to stay that way for a few days. Easter is different here in NI as Good Friday is a normal working day and the holiday is Monday and Tuesday.
The wee dog hurt her paw last Thursday so long walks are off for short while but I think she is playing the old soldier with me as when something gets her attention she forgets the sad suffering look and the limp and dashes for whatever it is.
Michael
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