Calling all triple negative breast cancer patients in the UK
Comments
-
Hello every one,
I am just popping to say that I hope you all have a good week and to send best wishes to those still going through treatment. Gill, I hope you have now finished radiotherapy. Sandra, I hope you have finished chemotherapy and have started radiotherapy. I shall be thinking of you, Anne when you start radiotherapy soon. Best wishes to Carolben and Semtemberbird, I hope all is well.
I am wondering whether this thread has now served its purpose, especially with so many women now on Facebook.
Best wishes, Sylvia.
0 -
Hi Sylvia
Hope you have a lovely weekend too. I think that the thread is useful to keep open as there will be so many others boarding our train who will google in the scary nights they can't sleep looking for solace. I remember those times clearly, and I found this site such a help, especially to find there were others in the UK experiencing similar problems to me. Although it has only been recently that I have corresponded I have been reading all the posts for 2 years.
Although there is Facebook and various other sites I have found the quality of the posts here measured and informative, probably due to the tone you have yourself set. I do hope it stays active as I for one would miss it - but that is only my personal view, and maybe a selfish view as I am sure for you there is much time involved replying to everyone so conscientiously!
Love, Norma
0 -
hi Sylvia
I hope you are well, I have my last radiotherapy tomorrow, I can't believe it's finally going to be over and how quickly it's gone since my first surgery,
I've been reading a lot about exercise having a good having a good effect when it comes too reducing recurrence risk so I am buying a bike through our cycle2work scheme and going to build up too riding around 10 miles a day I'm also taking up swimming as soon as there's no chance of skin irritation after radiotherapy and I'm really looking forward to that
I for one would miss this thread if it were too stop and like normandee I was reading your posts for quite a while before I finally posted so it makes you think how many others are being helped through information on here without actually posting,
It's funny you were talking about lulu, on my September group on Facebook were arranging a meet up in April in Birmingham, I'm not sure if I'm going yet but if I am I'm going to be sharing a room with lulu, the only problem is my friend is arranging a holiday for us and I think the dates are going to clash but hopefulIy i can do both
I should be getting my brca results in about 4 weeks so getting a bit nervous about them, if its positive I'm not looking forward to all the additional surgery I'm going to have to have, also arranging for my sons to be tested and waiting for the results is not going to be fun but I suppose it's better to know
Take care
Gill
0 -
hi. I have breast ca but not tn. My friend howevrr has tnbc and brca 1 positive. She has mets to bones, liver, lung less than 9 months from diagnosis. They want to put her on xeloda. I need a crash course on effectiveness and side effects please
0 -
Hi Sylvia,
I am seeing my second opinion BS 3 weeks after my chemo. Before that, they ordered me a mammogram, an ultrasound, and a MRI. My MRI was clear after my lumpectomy, and before my chemo, which was done I last Oct. I wonder how many of you who had surgery first, then chemo received another set of mammogram, ultrasound and MRI?
Thanks!
0 -
Hello Norma
Thank you for saying
that you think the thread is useful and that it helped you and you
think it will help others. I had no idea that you had been reading
all the posts for two years.Thank you for the kind
words that you said about the thread. I did set out for it to be
serious and informative and to guide frightened women along the
pathway of their cancer journey as well as to comfort and reassure
them. As long as I think it is beneficial and useful to others, I
shall keep it going, especially as I think that in the UK we do have
to fight and we shall have to fight perhaps even more for our rights
when it comes to healthcare. The National Health is taking a beating
at the moment and I do believe that the function of a government is
to take care of its citizens from the cradle to the grave. I recently
read an article in the paper where someone was saying that cancer
patients should have to pay for some of their treatment. That is very
worrying, as it would not be right for those who can pay to get
treatment and those who cannot to be left by the wayside.Have you read the
couple of newspaper articles recently comparing cancers? There was an
article about a young woman dying of pancreatic cancer and she
happened to say that she wished she had been diagnosed with breast
cancer instead of the pancreatic cancer. I fully understood that
because the survival rates for breast cancer are so much better.
Apparently she was attacked for saying this. The survival rate for
pancreatic cancer is only 3% after five years!Yesterday in the Daily
Express there was an article by Ann Widdecombe entitled Some cancers
are worse than others. I wondered, if you have read it, what you
thought of it?Fond thoughts.
Sylvia xxxx
0 -
Hi Jianchi,
Last year I had a lumpectomy (2 tumors), surgery, chemo, and then a mammogram to make sure all was clear before radiation. They saw something they did not like in the mammo so I had an MRI. What they saw in the mammo was not a problem but they saw something else in the MRI so I had a MRI assisted biopsy. All was clear thank God. Stressful does not begin to touch how this felt after 6 months of chemo....I just felt as if there was something there after surgery and chemo that it would have been a catastrophe. Then a month or so later during radiation I found another lump. It was checked with ultrasound and the doctor said he thought hematoma. My gynecologist guessed scar tissue. 3 months later the nodule seems to have not changed but now I have another lump but also in the area of the last biopsy. I'm seeing a radiologist on Saturday. It is starting to feel a bit on the never ending side. We are going on a 3 week lovely beach holiday the first week of March and I just do not want to be thinking about my boobs anymore, at least for the vacation! You are not alone with all of the extra diagnostics. Better safe than sorry tho it is a pain! Susan in Germany
0 -
Hello Gill
I was so glad to read
that you finished your last radiotherapy yesterday. You must be
feeling really good today after all that daily travelling to the
hospital. How are you feeling? I do hope you will recover quickly and
get back to a normal life with just the periodic check ups.I am sure the cycling
will do you a lot of good, not to mention the swimming. Do not overdo
things. Give yourself time to recover and remember that a simple
regular walk is good as well.Thank you for your kind
words about the thread. I was surprised to know that you had also
been reading the thread for sometime before posting. It makes me feel
good to know that I am helping people and I shall certainly continue
and endeavour to make sure it is a good quality thread. Throughout my
life I have always aimed to do the very best and have carried with me
the words of a teacher I had at junior school. She always used to say
to the class that, if a job was worth doing it was worth doing well,
and that has been my motto ever since. I shall continue looking out
for all kinds of information about breast cancer, especially TNBC and
look out for new books. The last time I looked in Waterstones I had
read all they had on their shelf about breast cancer, but I have been
reading for nearly nine years now!I still think the
emphasis has to be on prevention through lifestyle and do not believe
in a magic bullet.I was interested to
read that you mentioned Lulu. Is she in your group on Facebook? I
think your group was called the September Superstars. How many of you
are meeting up and what are you going to do? If you do meet up, let
us know how you get on. I do hope you will be able to meet up with
the group and have a holiday. You probably need a holiday after your
cancer journey.I do hope you will get
good results with the BRCA testing. I can understand that you are
feeling nervous. Try not to worry. You have got through this cancer
journey and you will be able to face whatever is thrown at you. Will
you have a mastectomy if needed? It is definitely better to know
about any gene problems. I think everyone should be tested. It is
always a question of money.I was wondering what
you think about mammograms. There is constant information about them
and it is always conflicting. The most recent article I read was in
yesterday's Daily Express entitled Breast screening every year 'does
not cut death toll'.Sending you fond
thoughts.Sylvia xxxx
0 -
Hello Jianchi
Thank for your post. I
am trying to put your details together so that I can better answer
your questions.You have obviously had
a lumpectomy but have you finished your chemotherapy? Are you going
to have radiotherapy, which is usually done after a lumpectomy.It would be useful if
you posted your details so that they appear each time you post. This
way we are all better able to help and support you.It is usual to have
tests before and after treatment but what a person has often varies
in different hospitals. I had a CAT scan, a bone nuclide scan, a
mammogram and ultrasound before treatment. my treatment was
chemotherapy before surgery, three weeks after I finished the
chemotherapy I had surgery for a mastectomy, and then about a month
later I had radiotherapy for three weeks. I was then told I had a
good pathology report, a complete response, and had a CAT scan and
bone nuclide scan to finish. I then had mammograms every two years
and regular physical check ups alternating between the oncologist and
the breast cancer surgeon.Rather than trying to
compare your treatment to others, it would be better to ask your
consultants why they are doing tests etc. if you feel concerned by
them. We are all individuals and our medical teams arrange the
treatment that they think is the best for us personally.Let us know how you are
getting on with everything and give us the details so that we can
help you in the best way possible.Thinking of you.
Sylvia xxxx
0 -
Hello Susan
Thank you for popping
in and helping Jianchi. I am sure it is much appreciated.I do hope everything
will be fine on Saturday when you see a radiologist. Be sure to let
us know what happens.I do hope it will be
good news and that you will be able to go on your three week holiday
beginning the first week in March with peace of mind.Sending fond thoughts
your way. What are you doing for Valentine's Day?Sylvia xxxx
0 -
Valentine's day is not a big deal here in Germany or at least not at my house! Our anniversary was last week and lovely. I'm going to my book club in the morning and then out to eat at a great sushi place with girlfriends for lunch. Then I have to race to the hospital to get a CD of all of my mammograms and films to take to the radiologist this weekend. My hospital did not have an appointment until the end of May, very disappointing since at this point I'm a frequent flier there! Ah well.
0 -
I'm not from the UK, but I have enjoyed reading through these posts! However, it does give me pause because here in the states, at least for me, I have basically had no scans, only mammo, since finishing treatment and only mamma and breast ultra sound, prior to treatments. During treatment, for different reasons, I did have an abdominal ultrasound and they supposedly checked me thoroughly, and didn't find anything. But since I've had back pain since about a month after rads, I am now wondering why no tests has been run.
Just concerned!
0 -
Hello lindacam
Thank you for your post
on behalf of your friend who has TNBC and is BRCA1+. I was very sorry
to read that your friend has metastatic breast cancer to the bones,
liver, lung and that this has happened just nine months from her
diagnosis. That is very rapid. Did she have the usual initial
treatment of surgery, chemotherapy and radiotherapy or has the
metastasis happened during treatment, because in nine months she has
barely had time to get through treatment?I do hope someone who
is having capecitabine (Xeloda) will post in to talk about the
effectiveness and side effects of this drug.One link you might find
useful is:http://en.wikipedia.org/wiki/Capecitabine
This drug is an oral
drug that works similarly to 5-fluorouracil and is generally well
tolerated. It has the obvious advantage of being in tablet form.
Capecitabine is being tested after surgery and can be used either
alone or in combination with other drugs in patients whose cancer has
spread.One of the side effects
of 5-fluorouracil given intravenously and oral capecitabine (Xeloda)
can cause the palms of the hands and the soles of the feet to become
red and sore.You might want to look
up the link which lists quite a lot of side effects.Please remember that
side effects are things that can happen but it does not mean that
they will happen. Everyone reacts differently to different drugs.Please tell your friend
that we all wish her well and that she is very welcome to post here.We do have Carolben who
is TNBC with mets and she posts here from South Africa.I do hope you are doing
well and that all will go well with your surgery on February 17th.What kind of breast
cancer does your friend have? Is it IDC?Fond thoughts.
Sylvia xxxx
0 -
Hello Septemberbird
Just popping in to say
that I hope your mum is doing alright and that all will go well on
February 14th when she has a lumpectomy and sentinel node
removal. We are all thinking of both of you.Best wishes.
Sylvia xxxx
0 -
Hello Nettie1964
It was nice to hear
from you again and everybody is welcome here.I do hope that you have
recovered well from all your treatment.From what I have read
in posts from American women, it seems that treatment, scans etc.
depend on the insurance company that a particular person has. I can
understand that you are concerned about back pain a month after
radiotherapy and I think the best solution is to see your consultants
and tell them about the pain and your concern and ask their advice
and request a scan. It is always better to check anything of concern
with your medical team in order to get peace of mind.Let us know how you get
on.Fond thoughts.
Sylvia xxxx
0 -
Thank you very much Susan and Sylvia! Susan, I understood how you felt! I just want to begin with normal life, hate to be trapped with all the medical appointments. All the best seeing your radiologist.
I have added my detail to the signature area. My last chemo will be on Feb 24. I am scheduled to see another BS for a second opinion (on whether more surgery is needed or I am done with just a lumpectomy). She is the one who ordered me the US, Mammogram and MRI. Thanks!
0 -
Hi Sylvia,
I have fell behind with the posts as I have been having a new kitchen fitted. All done now bar the finishing touches but it has been quite disruptive and the poor dog didn't eat for three days, she couldn't cope with the upheaval.
I think this thread is flourishing. I belong to an NHL support list and that has about 3000 members but posts have slowed to a trickle. A few months ago the moderator was disparing. I don't know if people are using Facebook but if they are I would guess it provides a different format. I rarely use Facebook myself and when I have I haven't liked it. It seems to me that it isn't really something you can dip in and out off.
The thing I have noticed about this thread is that people seem to communicate through you rather than to each other. I guess we all see it as your thread rather than an open thread.
Hope the weather isn't too bad in your part of the world.
Michael
0 -
hi Sylvia
I feeling surprisingly good considering I've only just finished treatment just a bit tired, I have got pain in my chest but I'm putting it down to radiotherapy so I'm hoping that will settle down in a few weeks,
I'm really looking forward to cycling but ill make sure not to do to much too soon and my friend said she is also going to get a bike so we can go on bike rides together which will make it more enjoyable to have some company
Lulu is on my september superstars group, there's 37 of us and I think about 30 are meeting up its going to be in hotel in Birmingham and its just to get to know face to face the girls who have been supporting each other through this cancer journey, I hope I can make it as it sounds like it will be a lot of fun
There's some more sad news from my group the lady I told you about in my last post is very poorly now and doesn't look like she's got long but now another lady who had lung mets when she joined the group has also been diagnosed with brain mets and and is in a hospice, the worrying thing is they are both triple negs and the speed at which this is happening is scary
Is hard not to feel nervous about the brca results because they have told me if I'm positive I will be having a double mastectomy and my ovaries removed to reduce the chance of recurrence and I'm not looking forward to all that extra surgery but ill try not to worry till I know,
my friend went for a mammogram today, just a routine one and she said it was over really quickly, apparently we've got new mammogram machines in the Linda mc centre and she was very impressed with them....I've met a few people who's breast cancer was detected early through a routine mammogram so I think it must "cut the death toll" don't you think....I for one will be happy to have follow up mammograms if only for piece of mind,
Take care
Gill
0 -
Hello Sylvia
Thank you for your reply. I have heard about the lady with pancreatic cancer who wished she had breast cancer instead. I can almost agree with her reasoning - pancreatic cancer has such a dismal prognosis and we do have much better survival stats. No cancer can ever be wished for, however, as we all know personally how devastating the diagnosis is. I haven't read Ann Widdecombe in the Express but am going to my Mum's tomorrow and she takes the paper and will catch up with the article there.
I am a member of Facebook and have joined the Triple Negative Cancer group. It is a largely American cohort but does have members from all over the world many from the UK. I enjoy dipping into it but rarely post on it. It is quite different from this thread as it is busy and chatty but not necessarily informative, more quick questions and snappy replies. There are so many people contributing to it that it is quite impersonal which suits the format, and it certainly makes you realise just how many of us suffer from this TNBC as the membership swells daily. This thread is more personal and correspondents get to know each other better because subjects are discussed in greater detail at a deeper level.
As for the reference to Mammograms I am afraid I have little faith in them (sorry to upset anyone) as the routine one I had less than a year before diagnosis never identified my cancer. Furthermore the mammogram I had at the Breast Clinic where I was urgently referred after I found my lump couldn't positively identify it either, stating "inconclusive". It was an experienced Breast Specialist and Core Biopsy that confirmed my 3cm cancer! I have since read that TNBC often goes undetected by Mammograms and I am now on a mission to tell all my girlfriends to push hard for tests if they have a hunch about breast lumps despite clear mammos.
So glad you intend to keep this thread open Sylvia, I agree with the previous comment about it being 'your thread' and you should be proud that your valuable views and informed advice have sustained so many of us behind the scenes!
Get ready to batten down the hatches for the next storm on its way. Nature causing havoc in our bodies and in our world! Let's all hope for Sunshine everywhere soon!
Love, Normandee x
0 -
hi Sylvia
Sadly one of my friends from my superstars group passed away last night from this horrible disease...her name was sue schofield and she was suffering this disease for the second time, sadly this time it took hold really quickly and she couldn't fight it.....so very very sad today knowing that another lady is really poorly at the moment as well....I hate this disease
Normandee which triple neg Facebook group are you on is it lulus? Also when you read about TNBC not always showing up on mammograms did it explain why?
Take care
Gill
0 -
Hello Michael
It was nice to hear
from you and have you back on the thread.I can understand what
you have been going through with having a new kitchen fitted. My
neighbours here had one fitted recently and the work seemed to go on
for ever. I can understand how disruptive it has been and I feel very
sorry for your poor dog, who was put off her food by the disruption.
I do not think I could have coped with the upheaval either.I do hope your
non-Hodgkin's Lymphoma support list will pick up. It is sometimes
difficult to know what to think. If on a support thread the numbers
of posts and view diminish, I suppose we need to know whether this is
because fewer people are being diagnosed, which must be good news.
From what you read in newspapers and magazines, this would not seem
to be the case for a lot of cancers. I suppose sometimes people just
suffer from the general fatigue of cancer treatment, finishing it and
then having to live with the knowledge that it can always come back.
They then feel the need to take a break and that is a good idea. They
can go on holiday or just live as normally as they can and block
cancer out of their minds for a while. I perfectly understand that
people need to take a break and then come back. It is so important to
have people who have finished treatment to stay on and support
others. You must always try to give back what you have received.I do not know too much
about Facebook, but a lot of people seem to enjoy it. It is Social
Networking and a lot of young people use it as a way of life now. I
registered once to please the young son of a friend of mine, but
realised it was not for me. However, I have various cousins who are
on there and post family photographs etc. and even use it as a kind
of diary. I also found that some people seem to think it was some
kind of competition to see how many 'friends' joined up with you. I
am also not into writing in text language and as a former teacher I
think texting is messing up people's ability to spell and write
grammatically, but that is just me. I sometimes think it would be
useful to have a blog, but I do not think I have the time.As for this thread I
have never really looked upon it as my thread. I may have started it,
as many do, but I sincerely consider it as our thread, meaning
everybody who posts and views. I really like it when I find that you
have been communicating with one another and especially when you all
pop in to comfort and support one another. I try to act as a guide
and find information that is useful for all of us. One thing I can
say is that I have grown very attached to the people that post and I
am very proud of the quality of your posts. When I started the thread
I did not really realise that people started a thread and then just
left it for other people to post on. What I like about bc.org is the
fact that there are moderators overseeing all of the threads and that
they do pop in to offer support and also to keep a watch on bad
behaviour or trolls. I am amazed at the size of this charity and its
forums. I think it is sad when some of the threads disappear. I
remember when I first discovered bc.org in 2009 and came across a
thread entitled High calcium, which was in a forum entitled Not
diagnosed with mets but concerned. I was looking for information
about over-active parathyroid. I wanted to bump it back up the other
day but could not find it. It was there that I met sam52 and we
became good friends as we had both had breast cancer and
hyperparathyroidism and found a lot of research about a connection.Anybody from anywhere
is welcome to post here for themselves of for their friends or
family. They can post about whatever they like because I think that
talking about yourselves, your lives, your interests and not defining
yourself as a cancer patient is therapeutic and very important.The weather here has
been awful today and for many weeks. We have violent winds and
torrential rain and no end in sight. At least we are uphill from the
seafront and have no flooding, but the seafront and town centre have
been flooded several times. The Dawlish railway that is out of action
due to the flooding and gales is just five miles as the seagull flies
from us. If we stand on the seafront we can clearly see the Dawlish
beach the other side of the estuary. There has been flooding all
around Exeter, Topsham and Sidmouth and in places it looks like the
Lake district. I shall be glad when it all dries up and we can get
out more and resume our visits to Exeter and Sidmouth. What is it
like near you?How is the Janette
Collins Foundation progressing? How are you getting on?Wishing you all the
very best.Sylvia
0 -
Hello Jackpot (Gill)
I was glad to know that
you are not feeling too bad after radiotherapy. I hope the pain in
your chest will go. Keep focussing on those bike rides that you are
planning with your friend.I was interested to
know that Lulu is on your September Superstars group and that there
are 37 of you. That is quite a big group. I was wondering how many
groups to do with breast cancer there are on Facebook and how these
groups formed. Are you all Brits? Is there anyone moderating what
goes on, such as there is on bc.org? I know that here we have rules
and we are not supposed to give advice and I am always very careful
to relate my own experiences and what I would do in a given
situation.That hotel in
Birmingham is going to be busy with 30 of you there altogether. It
will be a strange experience to meet and to hear voices rather than
written posts. Do you post anonymously on Facebook or do you use your
own names and post photographs? I am sure it will be fun for you.I was wondering how you
discovered bc.org and this thread in particular.I was so sorry to hear
about the two women in your group who are not doing at all well. I
know that it is a big challenge when people get recurrence especially
when it is spread to the lungs, liver, bones and brain. I do hope
these two ladies have been given all possible drugs to fight this.
There are lots of different drugs available.Try not to focus too
much on the fact that both ladies have triple negative receptor
status. Remember that cancer coming back can happen to those women
with positive receptor status as well. There are fatalities with
breast cancer but more women survive than die and you must focus on
this and also remember that lots of women can live for a long time
with metastatic breast cancer. I think a lot may depend on what kind
of breast cancer you have, perhaps more than the receptor status.
Most of us seem to have invasive ductal carcinoma (IDC) which I
understand is a term used for breast cancer of no special kind and it
seems that other breast cancers, such as inflammatory breast cancer
(IBC) and metaplastic breast cancer, which are rarer, are perhaps
more aggressive and harder to treat.To have triple positive
receptor status is no picnic either. One of my friends had this, went
through all the treatment like the rest of us, was fine but the
cancer came back fairly quickly and is now in her bones, lungs and
liver. She has just finished a long course of chemotherapy and scans
show the cancers have shrunk. She is now having Herceptin and other
non-chemotherapy drugs for a while and then will have a rest. I do
hope she will be alright.What are the new
mammogram machines? I am not sure what to think about mammograms.
They do expose us to radiation and they do have a lot of false
positives. They do not always detect lumps and I think if a person
thinks there is something abnormal in their breasts, but mammograms
show nothing, they should ask for an ultrasound which will show much
more.That is all for now. I
need to take a break.Sending fond thoughts
your way.Sylvia xxxx
0 -
hi Sylvia
Just a quick update we lost both ladies today...so very sad
Gill x
0 -
Hello Jackpot (Gill)
I have just read your
second post and I just want to say how very sorry I am to learn that
one of your friends from your September Superstars group died last
night. Thank you for giving us her name and I would like to say on
behalf of everyone here that we would like to send our deepest
sympathy to the friends and family of Sue Schofield. Let us be
thankful for the time she did have and for you, Gill, keep happy
memories of her.I do not think research
is going fast enough for this awful disease. We need to know why so
many women are being diagnosed with breast cancer at very young and
very old ages. I read recently on one of the threads about a woman of
93 being diagnosed with breast cancer with triple negative receptors
and I have read of young women barely twenty being diagnosed with
breast cancer. We need answers as to why this is happening.I have just read your
update, Gill, and I am so very sorry to hear that the other lady has
now died. You must be so upset and we are all here to comfort and
support you. Perhaps later you can tell us more so that we can try to
work out why this should have happened to these two ladies, for
example, what their illnesses may have had in common and what they
may have had in common.I know you will be sad
but keep looking forward for yourself. Try to have a peaceful
weekend.Sincere fond thoughts.
Sylvia xxxx
0 -
Hello Normandee (Norma)
It is always nice to
hear from you. I feel too tired this evening to answer your post in
the meaningful way that I like to, so I shall answer tomorrow.Have a good weekend.
Fond thoughts.
Sylvia xxxx
0 -
Oh Gill,
I'm so so sorry. Hugs
0 -
Hi Jackpot
The Group on Facebook is 'Triple Negative Cancer Sisters' and I have been a member for nearly two years. It is quite a good site for quick little quips but quite different from this thread so I find the two provide a nice balance.
As for the mammograms I have read in various documents that TNBC often goes undetected in mammos but I Am afraid can't remember site addresses. I may just have been unlucky, however I do understand quite a lot of women like myself are labelled 'interval cancers' as our cancers have been picked up by ourselves in between screening mammos. Just a further sneaky little surprise this cancer likes to give us.
I am so very sorry to hear about the ladies in the superstar group - such sobering news for all the rest of us with the same diagnosis, there seems no pattern to who, when or why. We must just enjoy every day and always remember those who no longer can.
I do hope everything goes well for you Gill, I am comparatively new to this thread but it is nice to 'meet' you,
Best wishes Norma x
0 -
Hello Normandee (Norma)
I think, as you say,
any cancer diagnosis is devastating, but at least with breast cancer
the survival rates are good, especially with primary breast cancer.
At the moment metastatic breast cancer is more challenging for the
experts. Pancreatic cancer, lung cancer, oesophageal cancer etc. do
not have such good survival rates. Any cancers in the throat and
mouth are truly horrible, and the treatment is truly awful.I was interested to
know that you have joined the Triple Negative Cancer group on
Facebook. There seem to be so many groups. I now know there is a
group called the September Superstars and another called The October
Optimists. I suppose they are like all the different threads and
forums on bc.org. I would think a lot of the women on Calling all TNS
are also on Facebook and that the majority are Americans. I know that
I have had quite a few invitations to join Facebook, but have
declined. I find I am busy enough with this thread and doing a lot of
work as a volunteer director for the apartment complex where I live.It would be interesting
to know exactly how many of us there are that have had or have TNBC.I think the issue of
mammograms is quite difficult. They are especially problematic for
younger women as apparently their breasts are a lot more dense. I
think that younger women who have concern and think there may be
something wrong should ask to have an ultrasound in addition to a
mammogram. After all, when you have regular physical check ups after
standard treatment, if the consultant thinks there is not quite right
in the feel of the breast, my experience has been that you get
another mammogram and an ultrasound. I think the reason that
sometimes breast cancer might go undetected is because it is hard to
detect in the firmer breasts of younger women. Since we are told that
TNBC affects mainly younger women, this is why it may go undetected.
I do not think it is necessarily to do with the TNBC receptor status.
Younger women with positive receptors probably have the same
difficulty with denser breasts.Judging by a lot of the
posts I have read over the years, cancers with TNBC receptors seem to
grow rapidly and to come from nowhere.I think you are right
to encourage your friends to push hard for tests even if their
mammograms are clear. They know their breasts better than anyone else
and I think it is very important to examine them on a regular basis
and to look, not just to feel, for anything abnormal, such as swollen
breasts, inverted nipples etc.I hope you have a good
weekend and I do hope this awful weather will soon go away. Last
night was horrible here.Take care.
Fond thoughts.
Sylvia xxxx
0 -
Susan, thinking about you & crossing everything for good news about this new lump. I'm so sorry you have to have this worry, breathe deep, am pulling for you! Big hugs x
0 -
hi Linda, I sent you a private message, but look at the All About Xeloda thread, it's been such a help to me. I'm on my 4th cycle and am tolerating it well, plus it seems to have stabilized my mets!!!!!
0
