Calling all triple negative breast cancer patients in the UK

FernMF

ROUND 3 - the RIGHT nurse put in an (almost) pain free IV - that was 3/4 of the battle for me today before it started.  My doc said to "scale it down" -- to not expect so much out of myself - that the tiredness/weariness and weak/sore leg muscles will probably escalate - my hemaglobin count was a bit low - he said THIS IS WHAT THESE DRUGS DO - "you need to lower your expectations of what you can do" . . . ha ha, my husband (sweet servant man that he is) said "I've been telling her that for days, maybe she will listen to you."  I was GANGED UP ON! (ha ha ha ha)  OK, so I'm going to "scale it back" and do less and quit when I'm tired.  Today, already feeling the tired . . . so I will try to do nothing for the rest of the day.  THANKS FOR ALL YOUR GOOD WISHES.  KEEP THOSE "YEARS OUT AND CANCER FREE" stories coming my way.

sylviaexmouthuk

Hello everyone

I just wanted to say that it is exactly two years today since I started this thread.

I just also wanted to thank all of you that have posted or viewed and have made our thread so succesful. Please have a slice of this non-fattening cake!

Thinking of you all and I shall be replying to FernMF, Dulcie (good for you!) and BernieEllen later today.

Best wishes

Sylvia

Dulcie

Thank you for the slice of cake xx

I too have reason to celebrate today WOW wow! I have just been told the PCT are funding me for the Royal Marsden yipee yay...

Dulcie xxxx

Maria_Malta

Very little time to reply but just to say Dulcie I'm not surprised you are feeling bewildered, you certainly have reason to, but I'm really glad that your Royal Marsden visit is being funded...hope you can manage to get an appt asap!  Thinking of you x

Maria_Malta

Hello Sylvia, congratulations on 2 years of excellent work, and thanks for the cake

I LOVED the blurb of 50 Shades of Clay you quoted, brilliantly funny...coincidentally have just bought Kindle edition of Hitchens' Mortality, but haven't started reading it yet. 

sylviaexmouthuk

Hello BernieEllen

You have certainly given good advice to FernMF and I think we should all say, please FernMF take it easy.

Bernie, you deserve a gold medal for what you did during chemotherapy. I do not know how you did it. Do you think you will ever be able to return to work. I think I remember you told your old boss to take his job and shove it! I do so love the women who are not afraid to speak their mind. There are quite a few of us on this thread.

You are certainly right that we need to listen to our bodies and be very gentle on them while they are having to deal with the poison that is chemotherapy.

I was glad to know that you enjoy the odd glass of red wine, medicinal of course!! We do have to have our little treats, otherwise life would not be worth living.

Keep looking after yourself.

Thinking of you.
Sylvia xxxx

sylviaexmouthuk

Hello Dulcie and a hearty welcome back!

I was so glad to know that you are not going to let yourself be defeated by someone who is possibly having sneaky looks at your posts. We do have freedom of speech in this country. I am a great believer in saying that people who snoop should not be surprised at what they see or hear. Three cheers for our Dulcie the Brave!!!

I should think you are relieved that you do not have to see your breast cancer surgeon again. He does not seem to have been of much use and seems to be in contradiction with your oncologist. I think the oncologist would know more about chemotherapy drugs etc. than the surgeon. It is the oncologist who decides what drugs to give you and why.

I can understand that you do not feel well enough to start your chemotherapy, but I cannot understand why your oncologist would think that there is no hurry.

Try to remain positive.

I can understand that you have not read any of the recent posts. You have far too much on your mind.

You really do have cause to celebrate today and I hope you are finding a way of so doing. It is really great that you are going to be able to get to the Royal Marsden and that you will get funding for this. Please push for a prompt appointment as you need to get the best advice and treatment that you can. Please let us all know what happens and keep optimistic.

Fond thoughts.
Sylvia xxxx

sylviaexmouthuk

Hello Dulcie again,

I have just Googled metaplastic breast cancer to refresh my memory. I found the following link interesting and you might want to read it. It does say that because it is rare that the usual chemotherapy drugs used for other types of breast cancer are used, but of course, none of us knows what may come out of treatment at the Royal Marsden. The link I have just looked at is:

http://www.cancer.net/cancer-types/breast-cancer-metaplastic/treatment

It is also a good link for an overall view of breast cancer treatment for anyone newly diagnosed.

I did read some information about a mixture of chemotherapy drugs plus cisplatin. I am sure they will have the best drugs available at the Royal Marsden.

Good luck.
Sylvia xxxx

sylviaexmouthuk

Hello FernMF

I was glad to know that round 3 of chemotherapy is now behind you. Your doctor is absolutely right to tell you to scale things down and not to expect too much of yourself. Remember that by round 3 your body and your immune system will have been greatly weakened. Try to keep your haemoglobin count as normal as you possible can. I kept mine normal and I used to take iron supplements but do not do this without making sure it is alright for you. I also used used to eat plenty of prunes and dried figs.

You are very lucky to have such a supportive husband, so when he tells you to rest make sure that you do.

Keep posting your experiences so that we can support you.

Best wishes.
Sylvia xxxx

sylviaexmouthuk

Hello Maria_Malta,

Thank you for your compliments about the work on the thread. You have played a huge role in the success of this thread and I thank you for that. I am so glad that you and BernieEllen have kept with us, even though you have finished treatment. BernieEllen is another one that has helped to form the backbone of this thread.

I knew you would appreciate the blurb about 50 Shades of Clay. I did think it was extremely funny.

I was interested to know that you have bought the Kindle edition of Hitchens' Mortality. I would be most interested to know what you think of it. I have bought the book but I do not know when I shall get to read it. I have a Death in the Family to read and it is a very thick book but I am so impressed by it.

Keep well and please keep in touch. We all need to give great support to Dulcie and to FernMF as they go through treatment.

I do hope all will go well with Dulcie at the Royal Marsden and I hope all will go well with her OH. What an ordeal they are going through. At least we all have a fighting spirit on this thread and we are our own best advocates. We have free speech but must take care in all that we write not to mistake opinion for fact.

I do hope you will have a good term and a good time with your daughter.

What is your walled garden looking like at the moment?

Best wishes.
Sylvia xxxx

sylviaexmouthuk

Hello sam52

I hope life is treating you well and that we shall hear from you soon. You are missing the birthday cake to celebrate two years from when the thread started. You are another one that has helped to make me proud of this thread.

I am so glad that we met on bc.org back in 2009 when we were both over cancer treatment but going through all the worry and anxiety of finding out about hyperparathyroidism, a possible connection with breast cancer and facing surgery.

Fond thoughts.
Sylvia xxxx

sylviaexmouthuk

Hello linali

I cannot let this special day go by without thanking you for your tremendous input on the thread.

I do hope all is well with you and that we shall hear from you soon.

Best wishes.
Sylvia xxxx

FernMF

Thanks all - neulasta shot was a non-event today - thought I'd go in to work for 4-6 hours - DID NOT - decided to take my doc's instructions literally, so am home, just doing mostly nothing . . . have a few quilting projects beginning, and watching a bit of television, and may go for a 1/8 mile walk (ha ha) . eating smaller meals and more frequently as metal mouth is upon me . . . told them at work I probably would not be in the rest of the week - that feels decadent - but, it's doctor's orders, right?  Thanks for the piece of fat free cake Sylvia, and for all you are doing.  All of you with good and not-so-good reports, my thoughts and prayers are with you this beautiful day. 

BernieEllen

Thank you Sylvia, I did tell my 20 years younger boss to shove it.  I may now be broke but I'm happy.  Life is not about money and never should have been.

thank you for the cake 

BernieEllen

for our Sylvia

sam52

Hello Sylvia

I am just in time to congratulate you on 2 years since starting this thread.What a great thread it is;you have worked tirelessly to keep it all going and provide information and support.

Although I was not dx with TNBC, I enjoy reading the posts here (originally I looked in because I already 'knew' you from 2009) - and although my dx was ER+/PR+, there are still many similarities with treatments and side effects etc. I have occasionally posted when I thought something might be relevant or helpful, but really take a back seat as I feel a bit of an interloper......

You should be very proud of 'your' thread! 

 I am also very glad that we got to know each other over 3 years ago, when diagnosed with parathyroid disease.Are you scheduled for another Dexa scan? I must find out when my last one was, and maybe follow it up to see if there has been any improvement in my osteoporosis.My surgeon told me that it would take 3 years for the full impact of the removal of the parathyroid adenoma to be seen.

With love,

Sam x

freyamia

Hi, first of all I want to say thank you for creating this forum. I am not the one diagnosed with breast cancer my mum is.

So I will tell you what has happened so far..... my mum was diagnosed with bc and had a lumpectomy we were told that it was stage 3 cancer and would require a body scan.

the cancer was the type which does not respond to hormone treatment and she would require further surgery as they did not get a clear margin. and she had one lymph node involved and that she had some vascular invasion. My mum then decided to have a masectomy instead of a further lumpectomy.

folloing the masectomy (my poor mum ) the doctor (a different one) did not mention the body scan so I asked and was told it was stage 2 cancer not stage 3 so she did not need a body scan.I was obviously relieved but angry that they had given us the wrong diagnosis previouly! He had obviously just read his notes wrong. 

My sister and I arranged a meeting with my mums breast cancer nurse to discuss some issues and fears we had. She must stick to a script as she just kept repeating the same thing and not really answering our questions. My mum has been suffering a bad shoulder for sometime before diagnosis (on the same side as the cancer) and had been referred to physio. when I mentioned this coupled with the fact her leg has been bothering her she said it would need investigating, am bloody angry they didnt do this following diagnosis in May although they were aware of it!

It has not been mentioned to us that her cancer is triple negative its only when I asked (after doing some internet research myself) that it is in fact triple negative.  

Sorry to be so long winded but really my question is this, should she need  a body and bone scan with stage 2, grade 3 triple negative, one lymph node involved, with some vascular invasion breast cancer. You can see why I really dont trust them and just want the best for my mum

thanks in advance xxxx 

sam52

Hello Dulcie,

I am so sorry you are still having such a difficult time with your medical team.Not much of a team, by all accounts, with the surgeon and oncologist contradicting each other. I think the oncologist seems to be totally lacking in compassion and has no idea how to talk to patients.I really feel for you.

Thank goodness you are able to get a second opinion from the Marsden, and that your PCT will fund this.I hope your consultation will be very soon and that you will get the treatment that you deserve. I have heard only good things about the Marsden and they are certainly the best cancer hospital in the UK, so you will be in good hands.

It is good to see you posting again.

Take care,

Sam x

chatterbox2012

Hi Sylvia

I was back from Brentwood a couple of weeks ago. I am off to Chelmsford on Monday. I am staying at the Saracens  Head this time.

I am in a bit of a hiatus with the foundation at the moment as I am waiting for the bank account details to come through and then I can apply to the Inland Revenue. I have added more detail to the web site including any news about TNBC that I receive.

I read the posts each day but unfortunately there isn't a lot I can offer in the way of advice. Reading the posts I have an insight into the horror scenario Janette was confronted with but never let on. Looking back the family all climbed aboard this TNBC train thinking the destination was the seaside but Janette probably had a good idea that we didn't have the fare to get that far.

Michael 

sylviaexmouthuk

Hello everyone

I have just been reading all of your posts and am overwhelmed by your expressions of appreciation. I shall answer them all this evening as I am getting ready to go to the funeral of one of the really nice ladies in our apartment block. She was 87. I shall reply to all of you later today.

I would like to say a special hello to freyamia and say how sorry I am to hear about your mum. Once again it sounds as though we have another patient whose treatment has not been up to standard. I shall reply in more detail this evening. Has your mum been told that she is HER2 negative, as well as oestrogen and progesterone negative? These are the three that make up the triple negative. If you are in the UK my experience is that a CAT scan and a bone nucleide scan are often given before and after treatment to see whether there is any spread and specifically with the nucleide scan whether there has been spread to the bone.

I shall talk to you all later.

Best wishes

Sylvia

sylviaexmouthuk

Hello again

Just a joke to make you laugh. I know BernieEllen will appreciate this. She is a great lover of jokes.

Best wishes

Sylvia

The Deaf Wife Problem

Bert feared his wife Peg wasn't hearing as well as she used to and he thought she might need a hearing aid.

Not quite sure how to approach her, he called the family Doctor to discuss the problem.

The Doctor told him there is a simple informal test the husband could perform to give the Doctor a better idea about her hearing loss.

'Here's what you do,' said the Doctor, 'stand about 40 feet away from her, and in a normal conversational speaking tone see if she hears you. If not, go to 30 feet, then 20 feet, and so on until you get a response.'

That evening, the wife is in the kitchen cooking dinner, and he was In the den. He says to himself, 'I'm about 40 feet away, let's see what happens. 'Then in a normal tone he asks, 'Honey, what's for dinner?'

No response..

So the husband moves closer to the kitchen, about 30 feet from his wife and repeats, 'Peg, what's for dinner?'

Still no response.

Next he moves into the dining room where he is about 20 feet from his Wife and asks, 'Honey, what's for dinner?'

Again he gets no response.

So, he walks up to the kitchen door, about 10 feet away. 'Honey, what's for dinner?'

Again there is no response.

So he walks right up behind her. 'Peg, what's for dinner?'

(I just love this)

'For Pete's sake, Ralph, for the FIFTH time, CHICKEN!'

Dulcie

Thank you so much Sam52 x

I will come back after my first visit and tell you all about how i got on..i am in extreme discomfort with my 'wound'..and i do hope the onc is proved wrong with her 'casual' words about the spread..

bye for now sign off 'totally confused'..

Dulcie xxxx

Maria_Malta

Freyamia, hello and sorry to meet you here, but it's a good place to find info...regardless of being stage 2 or 3, there is absolutely nothing to lose in having the scans, and hopefully you and your mum will be reassured if all is clear... I think as Sylvai mentioned it's pretty much standard treatment...

sylviaexmouthuk

Hello FernMF

I was so glad to know that you are home and not exerting yourself, or as they say, chilling out. Anything that makes you relax is good. I think that if you rest a lot and generally relax and spoil yourself, you may not necessarily get side effects. I sometimes think side effects are a way of telling your body to slow down and your body telling you to rest.

Keep on not doing much until your body starts to pick up.

Take care. Best wishes.
Sylvia xxxx

sylviaexmouthuk

Hello BernieEllen

Thank you for the beautiful design. I do like anything artistic. Thank you for your kind words.

I agree with you that life is not about money and society should never have put so much emphasis on it. Happiness and health are the most important things in life. I am glad to know that you are happy. We can all get happiness out of simple things.

Best wishes.
Sylvia xxxx

sylviaexmouthuk

Hello sam52

I was so glad to hear from you. Thank you for your kind words about the thread.

You are very welcome to post any time you like and I consider you to be an important part of the thread. As you say, treatment for breast cancer, whatever your receptor status, is basically the same. I am quite happy for any one with breast cancer of any kind to post here, even though I set it up with TNBC in mind because there was so little information about it. Anyone diagnosed with breast cancer who is looking for information, support, comfort or companionship is welcome on this thread. Carers are welcome as well.

You are certainly NOT an interloper and I am sure everyone on this thread would agree.

I think I was very fortunate to meet you on the thread and that we were able to go through all the information about hyperparathyroidism and then go through treatment together. I still think there is a connection between hyperparathyroidism and breast cancer.

I am going to ask about a DEXA scan when I go for my next check up with the breast cancer consultant surgeon in October. I am waiting for a letter with my appointment date. I seem to remember that I was told that you had to wait five years between DEXA scan appointments. I did mention the scan to my GP some months ago, but she said that I would probably not get one just yet. It looks as though when you get diagnosed they like to put you on Fosamax, a bisphosphonate, for five years to see how it works. I remember saying at the hospital that I thought this was far too long to be on any medication. As you know I refused the Fosamax and am relying on one Solgar supplement a day, with one magnesium citrate supplement and vitamin D supplements, and diet. It does worry me that I do not know what is happening with my bones.

It is very difficult to get any action with the NHS and it is getting worse with all the cuts. Today, on the news, it was all about the dire situation in the hospitals because of a shortage of beds. New hospitals have been built but there are not enough beds in them.

Love
Sylvia xxxx

sylviaexmouthuk

Hello Michael

I was glad to hear from you. As you visit Essex, I almost feel I am touring around with you. You are visiting such familiar haunts. I do remember the Saracen's Head.

Raymond and I used to go to Chelmsford regularly on a Saturday morning. We used to park in the multi-storey car park where the market is and walk through one mall out wander around the area there, and then into another mall. We often went to Thorntons which was one of the few shops with a coffee bar. One of our favourite shops was the independent department store opposite Debenhams, where we often had lunch. I cannot remember the name at the moment. I know that it has long gone. Chelmsford and Exeter were my favourite towns for a long time. Exeter has now grown too large for my liking but we do go there frequently. I did love the library in Chelmsford.

I shall have a look at your website tomorrow to see how things are going.

Post whenever you like and talk about whatever is on your mind. If we can help you or offer you comfort in any way, then it makes the thread worthwhile. It is also very useful to have the views and feelings of someone watching their wife go through cancer treatment. You are much better placed than a lot of people because you have had cancer.

You have such a good way with words, Michael. I think with cancer, when we are unwilling patients on that train, we just do not know how far we are going to travel.

Sending you my very best wishes.
Sylvia

PS I have just remembered the name of the department store, it was Bollingbroke and Wenley.

sylviaexmouthuk

Hello freyamia and thank you for posting on behalf of your mum.

I was sorry to hear that your mum had been diagnosed with breast cancer. First of all I was surprised that with stage 3 your mum had a lumpectomy. I would have thought it would have been more usual for a mastectomy to have been advised, all the more so that you were told your mum's breast cancer was not hormonal. To say it was not hormonal seems a bit vague. You should have been told that it was oestrogen negative and progesterone negative and given the percentage for each. You should also have been told whether it was HER2 negative or positive. HER2 positive needs treatment with Herceptin in addition to chemotherapy drugs. With three negative receptors you have a diagnosis of triple negative breast cancer (TNBC). This is classed as an aggressive type of breast cancer because after standard treatment of a combination of surgery, chemotherapy and radiotherapy, no other treatment is available. With hormonal breast cancer, you are put on Tamoxifen, Arimidex or a combination of both for at least five years to keep the cancer at bay.

On diagnosis scans are generally standard treatment as I said in my first post to you. Your mum should have had a CAT scan and a bone nucleide scan.

It is also usual when you have a lumpectomy to have a second surgery if clear margins have not been found with the first one. After these two, if there are still concerns, a mastectomy will be advised. I think your mum made the right decision to have a mastectomy instead of a further lumpectomy, especially as she had one lymph node involved and some vascular invasion.

Was the lymph node that was positive for cancer the one known as the sentinel node? This is the first node.

I can understand that you were angry about the mistake with the stage. I thought that everybody had scans on diagnosis. Were you told the grade? TNBCs are very often grade 3.

To sum up, on diagnosis you need to know the receptor status, the stage and the grade. You then need to know what the treatment programme is that is on offer.

I cannot understand why the problem with your mum's shoulder and that with the leg were not investigated following diagnosis. Surely, those problems were a good reason for having scans.

It sounds as though it may still be common for medical teams not to talk about triple negative breast cancer. It was certainly not mentioned to me, but that was over seven years ago. I researched it all myself. I was told that I was oestrogen negative, only 5% progesterone and so negative. It was not until later that I was told I was HER2 negative and that to be so was better than HER2 positive. It looks as though information is given in bits and pieces and patient is left to put it all together.

Very early on I read the Cancer Directory by Dr Rosy Daniels from cover to cover and went to my appointment with a list of questions. This was before I started any treatment. I was lucky to have a consultant and an oncologist prepared to answer all my questions.

It is my own opinion, but if that were me, I would be asking to have a CAT scan and a bone nucleide scan to find out what is happening in my body.

Of course, you want the best for your mum and you have to make sure that she gets it.

What has been happening with your mum since her diagnosis in May? In that time she has had only surgery. Has she been offered chemotherapy or radiotherapy? I would have thought with TNBC she would have been offered both, especially as TNBC is said to react well to this treatment, especially, I think, the group known as Taxanes (docetaxel, Taxotere or paclitaxel, Taxol). Radiotherapy also helps to mop up any stray cells.

Has your mum completely recovered from her mastectomy and is she having regular check ups?

I hope this will help you and your mum. Please post as often as you like and let us know how things progress. How old is your mum?

Best wishes.
Sylvia

sylviaexmouthuk

Hello everyone,

I have had a PM in which someone was asking about the HER2 receptor. I had posted previously about being HER2- and this person was asking whether I knew my score. Apparently, with the HER2 receptor, so I was told, you can be 0 to 1+. This was never mentioned to me, but remember I was diagnosed over seven years ago. I was also told about a ratio of 1.4% and that if it falls less than that you are classed as HER2-. If any of you viewing have been given these details, especially in the UK, I would be grateful if you would post with details.

Herceptin has bad side effects on the heart and so people would not want to have this unless it is absolutely necessary.

Moreover, if you are not being given it and have a score that implies you should have it, that is also important, given the aggressive nature of HER2+ tumours.

All this reminds me of past discussions about percentages of oestrogen and progesterone and how patients that have been told they are triple negative are now taking Tamoxifen or Arimidex.

In addition to this, there is all the confusion about mixed tumours that we have also discussed, not to mention tumours that mutate.

Please post with some input.

I hope all of you have had a good week.

FernMF, make sure you rest and Dulcie, I hope you feel more reassured knowing that you will be going to the Royal Marsden.

Thinking of you all.
Sylvia

FernMF

Trying to rest . . can't be still, my body just will not sit/stand/lay comfortably . . . my vision is slightly blurry - - it's almost easier when the pain comes, because there is a pill for that . . . nothing seems to help with this restlessness . . . wish I could sleep.