Calling all triple negative breast cancer patients in the UK
Comments
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Sylvia,
I am so sorry to hear your aunt passed away! That is very sad.
Heather, My oncologist was not enthused about the metformin and I don't really know why. I plan to ask more about it next time I see him. I think I will also send an email to my "third opinion" oncologist to see what she thinks. It is probably out of the question, though, for me to take it during this clinical trial - and even maybe through the follow up period. I spent all day yesterday reading oncology journal articles about chemo but could not access the 2011 articles, only the abstracts.
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Let this coming year be better than all the others. Vow to do some of the things you've always wanted to do but couldn't find the time. Call up a forgotten friend. Drop an old grudge, and replace it with some pleasant memories. Vow not to make a promise you don't think you can keep. Walk tall, and smile more. You'll look ten years younger. Don't be afraid to say, 'I love you'. Say it again. They are the sweetest words in the world.0 -
Hello christina1961
Thank you for your post and your kind words about my aunt.I do hope 2012 will be a good year for you and that all will go well with the eribulin trial.
February 17th is not that far off and that will be another journey finished. I know that you still have the Tamoxifen and reconstruction to deal with, but I know that you will deal with it in your stride.
I think we shall all continue to be interested in what is said about metformin, but I tend to think that it is not as simple as it sounds. It will be useful if patients going through standard treatment or trials ask oncologists for their opinion on this drug.
Best wishes
Sylvia0 -
Hello BernieEllen
Thank you for your wise words and I hope that 2012 will be a good year for you. Your treatment is behind you, so 2012 should be so much better than 2011. I agree with what you said about doing things that you have always wanted to do. I think that being diagnosed with breast cancer and having to confront your own mortality teaches you not to procrastinate. If there are things you want to do, you must do them today. I certainly agree that it is silly to go through life maintaining grudges. Life is far too short. Keeping grudges inside of you is a source of stress and that takes its toll on you mentally and physically. We all know what that does to our immune systems.Have you made any resolutions for the New Year? I think if we can it is a good idea to look for the best in people. Everyone has some good in them.
I am wondering what 2012 will be like in the UK. We have the Olympic Games and hysteria seems to have begun already in the media. We also have the Diamond Jubilee of the Queen. I am no royalist, so I cannot get excited about that. With all the austerity forced upon the modest people of this country, I think the Olympic Games are a luxury we cannot afford in austerity Britain. We are spending many millions for the opening and closing ceremonies.
I am more interested in the bi-centennial of the birth of Charles Dickens. Did you see the BBC Television production of Great Expectations? I found it brilliant. Everything Dickens has to say is relevant in today's society.
Best wishes and good luck with your scan on January11th.
Sylvia0 -
Hello mccrimmon324 (Heather)
I was sorry to read about the upsetting remarks made about your hair. If I were you, I would just ignore them and not let them eat away at you. It is all down to ignorance. I hope you will feel much better in 2012. You have come through treatment and can look forward to a much better year, during which you should be able to put breast cancer to the back of your mind and enjoy your days.Keep happy and optimistic.
Best wishes
Sylvia0 -
Hello bak94
I was so sorry to read that you are still in the hospital and having problems with ports and infection. I do hope that you will be back home soon. I know this has been a very difficult and tiring year for you, especially as you are dealing with all this the second time around. We are all sending our best wishes to you and we shall be here to support you as you go through radiotherapy. I hope that you are not having any bad side effects from Zometa and we shall support you when you go back on Abraxane/Avastin.Concentrate on all the positives in your life and do the things that make you happy.
2012 has got to be better for you.
Best wishes
Sylvia0 -
Slyvia, I'm so sorry to hear of your aunts passing.
Bernie, I think I'll take your advice about 2012.
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Hello Everyone,
I was wondering whether you have been reading all the dire news in the newspaper about all the problems with silicone implants that have leaked.
I cannot believe that about forty thousand women in the UK have had these silicone implants done, and most of them for purely cosmetic reasons, and not after surgery for breast cancer. They had them done at huge expense privately. There is now a debate going on about whether they all need to be removed, who is going to foot the bill, and whether there is a cancer risk with the industrial grade silicone that has been used when it should not have been.
The private companies say they will operate to remove them and replace them at a cost of £2,500. The NHS has said they will remove them for women who had them after breast cancer surgery, but will not replace them.
The company at fault is a French one, PIP, and in France the government has said they will pay to replace them. The head of PIP is being sought by the police but seems to have disappeared.
I find all of this of great concern and I am so relieved that I never once considered re-constructive surgery. That surgery was long and complicated and I thought reconstruction would be a problem if the cancer came back.
I think it would be prudent for anyone considering re-constructive surgery to have a good think about it and to get assurances of what would happen if anything went wrong.
If you want to read an informed and interesting article about this, have a look at the article by Yasmin Alibhai-Brown in the Daily Mail for January 3rd. The link is:
Hope you are all well.
Sylvia0 -
Hello Maria Malta,
A friend of mine was talking to me about past holidays in Malta and it made me think of you. I have missed you on the thread and was wondering how you are. I hope you have finished treatment and are back at teaching,having put your breast cancer behind you. If you have decided to stop posting and even viewing, I understand. There is life after cancer and it is unhealthy to become too obsessed and let it take over your life.
The weather is dreadful here and I am longing for spring to get back to the gardening I love.
I think this thread is winding down.
Wishing you every happiness.
Sylvia.
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Hello Slyvia,
I think we are all still here, just not posting as much because the holidays. I went for my bloodwork yesterday for next week's appt. My anxiety isn't too bad today but I expect it to get worse. I am very curious to know what my onc will say about Metformin and zometa for my bones.
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Hi Sylvia and all my TN friends
Just an update on me - I had my bilateral mastectomy (without reconstruction) on 8th Dec and I am recovering well. I received my pathology report on 23rd December (you may remember that my 2nd cancer was palpable but did not show up on mammogram or ultrasound). Anyway, they found 4cm of Grade 3 DCIS which was Er/Pr negative. They think that this was the beginning of another TN tumour. I was told (and since read) that grade 3 in situ cancers will tend to become grade 3 invasive cancers fairly quickly (in fact most TN invasive tumours are surrounded by grade 3 DCIS as if the DCIS provides a 'seedbed' for the invasive). If this is the case, and I had to rely on mammograms for detection, then I would be in trouble. It's a long story but I knew something was wrong in my other breast - I felt pain first, followed a few weeks later by a 'raised ridge' which was getting bigger. The breast surgeon did the mammogram / ultrasound and said they felt all was well and that the biopsy was 'belt and braces'. If I did not have my previous TN tumour in my opposite breast two years ago, it is highly likely they would have sent me away at that point without the biopsy. Scary thought! I am also BRCA 1 of 'unknown sigificance' and am part of the BRCA study in the UK. My Oncologist thinks this is a genetic cancer and in fact those with a faulty BRCA gene are more likely to have a contralateral breast cancer (cancer in the opposite breast). So, please ladies be vigilent - I really do feel that I may just have saved my own life.There is a lot they do not know about this cancer and scans do not show everything!
Wishing you all a healthy and happy New Year XX
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Hello Karen3
I was so glad to see your post and to know that you are alright and have got through your surgery. I have to go out at the moment, but I shall post in more detail later on today. Thank you for such an informative post that will help us all and make sure that we all remain vigilant about our own bodies.
Wishing you all the best for 2012 and hoping that it will be a good year for you. More later.
Best wishes
Sylvia
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Hello mccrimmon324
Thank you for your post. You look great on your photograph. It must be all that nice Florida weather. I can understand that everybody has been busy with the holidays and then getting back to work. I do not know what it is like in the US but, here in the UK, people seem to stop work on December 23rd and do not get back until January 3rd or later! It is a complete frenzy of shopping for Christmas, New Year and then the sales. Would you believe that, in London, there was a stabbing incident in one of the shoe shops on Oxford Street over a pair of trainers (sneakers). This resulted in the death of one young man. England has become such a violent place.I do hope that you will have good results for your blood work. My wish for all of us is nothing but good news.
Be sure to let us know what your oncologist says about metformin and Zometa. Every little detail is important so that we are all informed.
I know what you mean about anxiety. I go through it for every check up, but it does not do us any good. Whatever we are told we have to face up to it and hope for the best.
We can all take courage from the strength of women like Laura Jane and suze35. What admirable women they are.
Sending kind thoughts your way.
Sylvia0 -
Hello Karen3
I am now back at home and am re-reading your post. I am so glad that your bilateral mastectomy is over and that you are recovering well. Did you have to stay in hospital very long? It must have been an anxious time for you waiting for your pathology report and to receive it on December 23rd, so close to Christmas.The fact that your second cancer was palpable but did not show up on a mammogram or ultrasound is strange and a warning to us all that we cannot necessarily rely on these two scans. I did not realise that DCIS could be so big or grade 3. It certainly sounds as though it was the beginning of a TN tumour.
I was very interested to read that grade 3 in situ cancers will tend to become grade 3 invasive cancers fairly quickly and I did not know that most TN invasive tumours are surrounded by grade 3 DCIS. When I had my pathology report in 2006 I was not given such details.
As you say, this is of great concern because it does not necessarily show up on mammograms. This probably explains why some women are diagnosed with breast cancer soon after having had clear mammograms.
It just shows all of us that we have to know our own breasts and go by our gut feelings. If we feel that something is wrong in our breasts, there is often something wrong and we have to make sure that our consultants get to the bottom of it. Thank goodness that they did the biopsy and found out what was wrong in time. As you say, if you had not had a previous TN tumour they probably would have sent you away. It also goes to show that it is worthwhile getting second opinions.
I think you are right that you have probably saved your own life and I agree that there is a lot they still do not know about TNBC and about cancers in general. It is an awful disease.
It looks as though you are dead right that scans do not show everything. This means that really there can never be any peace of mind with this disease. We all come away from check ups etc. feeling ecstatic when we are told all is well, but there will always be that lingering doubt in our minds that the doctors are wrong.
You mentioned that you did not have reconstruction. Have you ruled it out completely? I would not have had it for anything in the world.
Will you now have to have chemotherapy and radiotherapy? Was there any mention of HER2? Are you on leave from teaching?
I was interested to know that you are from Leeds. I went to university there and did a French honours degree. I was in lodgings in Hedingly for a year and for my final year I had a flat near Roundhay Park. My two brothers also did honours French at Leeds. In fact, my older brother(now deceased) did all his teaching career in Leeds before retiring to a village near York. I remember how cold it was in Leeds. The snow was on the ground for so many months! Leeds proved to be nothing compared to the cold in Canada. I liked Leeds and loved the shopping area and especially the northern friendliness and hospitality. I went back there after many years when I went to my brother's funeral, but it had grown so big that I found it hard to get my bearings.
You will get loads of support on this thread and although none of us wants to be here, I am glad that you have got back in touch.
Sending warm wishes your way.
Sylvia0 -
Hello bak94.,
I just wanted to say that I was so sorry to hear that you are having such a rough time after surgery. I do hope that all will be healed very soon and that you will be able to get on with your radiotherapy and finish this journey.
Kind thoughts are coming your way. Let us know how you get on.
Best Wishes,
Sylvia.
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Slyvia,
Such a shame about the stabbing, unfortunately that happens everywhere too. I can assure that I will never be that interested in a pair of sneakers!
And thank you for the compliment. Its very nice to have hair again.
Have a wonderfull weekend everyone.
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Hello suze 35,
I was sorry to read that you are in the hospital and hope that you will soon be feeling better and back home.
That trip you are planning sounds marvellous.
I am sending you warm wishes.
Sylvia.
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Hello mccrimmon 324(Heather),
Thank you for your post and I hope you have a great and stress free weekend.
The silicone breast story continues to hit the headlines here. There must be some very anxious women out there, wondering what is going on inside their bodies. Of the 40,000 women affected in the UK only 5% had these silicone implants done after surgery for breast cancer. The NHS has said it will deal with these women. This means facing more surgery. Apparently these implants need to be replaced periodically anyway. What a performance!
Are you taking any interest in the forthcoming presidential elections in your country?
All the best,
Sylvia.
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Hello Everyone,
It is late afternoon here in Exmouth, and it has been a cold,gloomy day. It is already dark and I have just closed all the blinds in the apartment. I have read some of the national newspapers in which there is a lot of doom and gloom, but I did find something that I thought could guide us all through this New Year.This is what I found.
THE BEST THINGS IN LIFE ARE FREE.
Spending time with family.
Achievements by loved ones.
Someone being nice or smiling at me.
Taking a walk on a beautiful day.
Getting a good night's sleep.
Doing something for someone else.
Being secure in my job/financial security
Spending time with pets.
A night out or going to a concert.
Keeping fit.
Finding a great deal that saves me money.
Work achievements.
Personal pampering.The above are listed in order of importance to people.
This was all summed up in a little snippet on the editorial page.
A walk on a beautiful day, keeping fit and bagging a bargain are some of the simple things in life that cheer us up. The first person to jog to the shops when the sun is out and walk away with something cut price from the sales is clearly heading for the giddy heights of happiness!
I hope the above has brought a smile to your face!!
How many of these things have you been through today?
The highlight of my day has been talking to the fifteen year old son of friends of mine and going through some French assignment of his via Skype. I have known him since the day he was born.
Sylvia.
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Hello everyone again
I have just been reading the latest Breaking News about radiation therapy and problems with coronary stenosis. I would suggest you all read it, especially those of you who have had radiation therapy on the left breast, which is nearer the heart. Perhaps those of you about to have radiotherapy should talk to your oncologist about whether you are being treated with up to date radiotherapy eqiupment. You might also like to discuss lumpectomy with radiation versus mastectomy without radiation.
If you want to keep information simple, read the right hand side of Breaking News, rather than the left hand side, which is more complicated.
Best wishes
Sylvia
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Sylvia. so sorry to hear about your aunt.
I am starting to get a bit better, it has been a rough 2012! First the staph, then my mastectomy scar burst open and had to have it redone and stapled, doc said the pressure of too much fluid caused it to burst, but he didn't put in a new drain. And then I wound up with some nasty stomack virus, at least that is what the nurse thinks it was. Still feeling like I am recovery mode, but at least on the getting better side. Still have not met with the radiologist because of all that has been going on. Worried about putting rads off too long, but no way can I do them how I ma right now. I will catch up on more of the posts, just checking in for now.
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Hell bak94,
Thank you for your post. I am so sorry that you are having to go through all this and I do really feel for you. It is bad enough having to have surgery for a mastectomy, without having additional problems. I think you deserve a medal. Do not worry too much about the radiotherapy for the moment. You need to get yourself better and fighting fit. I am glad you are feeling better.,
What are you doing to try to take your mind off this?
Best wishes, Sylvia.
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Hi Sylvia
I have done a bit of research on DCIS since my diagnosis. I have been told that the pathology is ER and PR -. However, they do not do the test for HER2. However, I had a meeting with the genetics specialist in Leeds (who is also an Oncologist). He said that he would be very surprised if it was HER2 + as in his opinion the last lesion will no doubt have the pathological charcteristics as my first TN IDC (apart from the invasive component of course). I find all this pretty interesting and I have lots of questions - I just dont think they know all the answers though Sylvia.
My case is interesting in that my latest lesion, although fairly large and high grade was NOT picked up by mammo or ultrasound and yet much of the literature on DCIS indicates that HIGH GRADE DCIS is the easiest to pick up on mammos because of it's histology! That was clearly not the case for me. When I asked the genetics specialist why, he said that TN cancers are 'fast moving'. In fact they are often refered to an INTERVAL CANCERS by the medical fraternity because they tend to show up between mammograms. Now as I have stated, my DCIS, though high grade, was invisible to screening. It also presented in a way which was not typical of other DCIS i.e. painful and palpable and though high grade remained invisible. Could it be that certain types of high grade DCIS are a precurser of the high grade TN IDC and that these DCIS can be 'invisible' to current screening techniques? Hence the 'interval' cancer phenomenon and the tendency to large TN tumours when they are discovered? Lets face it, if my DCIS was already 4cm, then once it became invasive, who knows how large it would have been on detection using conventional screening technques. I was due for my annual mammogram January 2012 (I had my lumpectomy operation to remove my TN IDC on 4th Jan 2010 after neoadjuvant chemo - that didn't work!). So the mammogram in January would have been my second of my annual mammograms (discounting the mammogram in August for my latest lesion). I have a feeling that this DCIS, even though 4cm, simply would not have been detected on my January mammogram either.
I am also fully convinced that not all TN cancers are the same for example, some respond well to chemotherapy and some do not (mine didn't). My first BC was also BASAL TN and I was also found to have a BRCA 1 mutation of 'unknown significance'. In addition I have dense breasts so that may have added to the difficulty in detecting my latest cancer.
Anyway, I thought you might find the following interesting:
'In our study, we provide evidence that invasive basal-like carcinomas do indeed have a precursor lesion in the form of DCIS'...
http://www.nature.com/modpathol/journal/v19/n11/full/3800678a.html
'The grade and biologic profile of DCIS are correlated significantly with an invasive tumor of corresponding grade and biologic profile, suggesting that in most cases, low-grade DCIS is associated with low-grade invasive carcinoma and high-grade DCIS with high-grade invasive carcinoma i.e., a horizontal progression'http://www.medscape.com/viewarticle/406866_4
Thankfully I do not need chemotherapy Sylvia because the cancer was not invasive. So, I just need to recover from the operation. I am hoping to be back teaching in 6th February and I am looking forward to getting back to some level of normaility. I really do hope I can put BC behind me now but we all know that this disease is unpredictable! I did consider reconstruction but decided against it in the end. I really could not contemplate them cutting in to 'healthy' parts of my body e.g. to remove part of my back muscle. The recovery would have been longer and of course my mobility may have been affected and as a teacher of Economics I am constantly using the white board to draw diagrams etc. Also, I have a fear of future recurrence in scar tissue etc so all in all I made the right decision for me and I am happy with it. I will be fitted with my prosthesis shortly.
As for Leeds - it's a great place in many ways. I live quite near Headingley too! Of course there are donwsides to living in a northern City but in North Leeds the lovely green areas are close by. The University of Leeds is also my own university where I studied Economics and History. It's a small world isn't it?
Best wishes,
Karen.
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Karen,
My tumor had high grade DCIS and invasive components . I had pain in the area where my tumor developed at least a year before diagnosis and went to a highly regarded breast surgeon at the hospital where I am currently receiving treatment. He was very dismissive, did a quick exam and stated "all women have breast pain." Needless to say, I never went back to him and I bite my tongue when others tell me how wonderful he is! I wonder now if the pain was caused by the developing DCIS. I had had a clear mammogram prior to diagnosis 14 months earlier.
Bak, I am so sorry you are having such a terrible time - I hope you will be on the mend very soon.
Sylvia, The best things in life are free!! I have established some personal goals for 2012 that have nothing to do with career - trails I want to hike that I haven't been on in years and a trip to the beach with my sister.
Heather, Your hair looks really cute!
I am doing better this eribulin cycle in terms of fatigue and mood. I am at my office working today. I do have a .5 cm sized herpes simplex outbreak on my face on the side of my nose near my eye - it is not particularly painful but very ugly and of course I am extremely concerned about keeping it free from infection as my counts will probably soon be low from the two doses of eribulin. I showed it to the nurses on Friday when I got my infusion but at that point it hadn't begun to blister. They did not prescribe anything at that time and I will not be back at the hospital until Friday. I have had this before; the first time as a child, but it has been many years. I'm sure it is because my immune system is taking a beating.
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Hello Karen3
Thank you for your most interesting post. I must admit I find some of what we are being told baffling. I think we have all learned and are still learning that nothing with breast cancer follows rigid general rules. Do you believe that you could not be HER2+? I noticed that the geneticist (oncologist) said he would be surprised if it was HER2+ but he did not say categorically that it could not be. I am not surprised that you have a lot of questions and I certainly agree with you that they do not know all the answers. If I were in your situation I think I would want to err on the side of caution and get tested for HER2, for peace of mind.It is certainly very interesting about DCIS. This is something that I have discussed with a retired nurse who is a friend of mine, and who saw me through my cancer treatment. I did not know her before but met her at the hospital. She told me that DCIS is not classified as breast cancer, but I have heard different views. One view is that DCIS should not figure on the list of breast cancer cases, and that they include DCIS statistics in breast cancer statistics to make the survival rate appear better. This friend told me that one of her friends,another nurse, was diagnosed with DCIS and that her consultant told her it was nothing to worry about and that surgery was not needed! However she kicked up a fuss and insisted on surgery and had everything removed. I do not know what grade she was.
I do find it of great concern that your lesion was high grade but was not picked up by mammogram or ultrasound when much of the literature says that high grade DCIS is easiest to pick up because of the histology. Does this mean that mammograms and ultrasounds cannot give us any peace of mind?I can understand the explanation that the geneticist specialist gave you for nothing having shown up on your mammogram and ultrasound in that TN cancers are fast moving. We all know that TNs are aggressive and grow quickly. I was interested to know that in medical circles they are known as interval cancers. This certainly explains the many times that I have read on threads that some women were diagnosed with TNs not long after having clear mammograms. This also explains why some of us say that our TNs seem to appear from nowhere. That was certainly my case. One minute my breast felt clear and the next I had a large lump. What I would dearly love to know is what is causing this and why it is affecting so many young women. It seems to be especially bad in the US.
Yours is a very interesting case, Karen, and it will be interesting to see whether others post with similar accounts. It is strange that your DCIS was painful and palpable, high grade, but invisible to screening. This explains why we end up as TNs with large tumours. My tumour was 7 cms on diagnosis and I could certainly feel it, but had no pain.
I agree with you that your 4 cms DCIS would probably not have shown up in the January 2012 mammogram.
I think you are right about TNs and that they are not all the same and sometimes the experts are a bit vague about this. Back in 2005-2006 I came across research about basal type TNs. Back then it was truly the dark ages here and the term triple negative was not used. I was told that all TNs are basal type, so mine probably was, but I never had confirmation of that. I now know that not all TNs are basal. As you say, some TNs respond well to chemotherapy and some do not.
It is true that it is harder to detect cancer in dense breasts. I have read that is why they do not have mass screening for younger women.
Thank you for the links about basal like carcinoma and DCIS. I shall have a look at themt later this week.
I am so glad that you do not have to have chemotherapy. I can understand that you want to get back to teaching and to leading a more normal life.
I think you have done the right thing in not going for reconstruction. I think it is just too much after breast cancer treatment and can cause a lot of problems in the future. What you say about fear of future recurrence in scar tissue is exactly why I stated that I did not want any reconstruction. I also thought the long and complicated surgery was not in my best interests.
Wishing you a speedy recovery. It is indeed a small world that we both went to Leeds University. It is quite possible you may have been a pupil at the schools where my elder brother and his wife taught for most of their teaching life.
Best wishes
Sylvia0 -
Hello christina1961
I was interested to read about the similarities with DCIS between you and Karen3.I was glad to know that you are doing better on the eribulin and not suffering so much from fatigue and mood.
It is good that you are at your office working, as it will take your mind off breast cancer and treatment.
I do sympathise with you over your outbreak of herpes simplex. It must be making you feel miserable. You can get a tube of medication from the pharmacy to dab on it that is pretty effective. Like you, I feel that this outbreak is due to a lowered immune system. I had an outbreak many years ago when I was going through stress, and then a couple of very minor outbreaks a few years ago, around the lips. The secret is to get the medication on as soon as you feel the slightest tingling.
Wishing you better and hoping February 17th will come as quickly as possible for you.
I am glad to know that you have established some personal goals for 2012 that will bring you pleasure. I am sure that is a good way to live.
Thinking of you.
Sylvia0 -
Hi christina - when I spoke to one of the breast surgeon about the pain I was experiencing - he was dismissive too. He told me that cancer was not painful! Yet, I detected my first TN tumour because it was painful and I detected my second DCIS because that too was painful. There are a number of women with TN tumours who experience pain but I think it is right to say that MOST breast cancer is not painful. I think surgeons forget sometimes that breast cancer is actually a whole spectrum of different types of disease. Even TN cancers are different; these cancers are 'lumped' together simply because they are not fuelled by hormones. It's interesting that your invasive TN tumour had a DCIS component too. I only found out two weeks ago that my invasive TN tumour had a DCIS component too. My breast care nurse said that a DCIS component to the tumour is typical for TN cancers which is confirmed by the material that I have read. In fact my breast care nurse said that they are always worried about tumours that do not have a DCIS component - a pure invasive tumour, she said, can be a sign that the invasive tumour is the result of a spread from another invasive tumour. So I am convinced that I caught my TN tumour early.
Sylvia - you are right - some think that DCIS is not cancer at all BUT there is general agreement that grade 3 DCIS has a much higher chance of becomming IDC. Also, studies show that the pathology of DCIS components and IDC components are identical (except for the chemical changes required for the invaisive element). I spoke to my breast care nurse last week about this issue and she confirmed that they simply do not know enough about this. She confirmed that some DCIS will never become invasive - paricularly the grade 1 and the grade 2 DCIS is less clear. My DCIS has not been tested for Her2 because they do not do this test for in situ cancers in the UK (funding issues - it is thought not necessary). But my genetics specialist (also an Oncologist) said that in his experience, because my first cancer was TN, he would be fairly certain that the DCIS was the same pathology as my original IDC tumour. So who knows - you see I do not think all DCIS is the same! The majority of DCIS are detected by mammogram and are not painful. According to medical wisdom, DCIS grows slowly, so there are lots of calcifications i.e. dead cells for the mammograms to pick up. BUT some DCIS are what they call 'occult' or invisible to mammograms (about 10 % to 20% according to my surgeon). These are generally the fast growing DCIS and so there are not sufficient dead cells to show up as calcification - because they are growing / moving so fast. This matches my experience - pain in the breast quickly followed by a raised ridge and then a swelling that was growing. It did not present as 'normal' DCIS. I think, like christina, that if this have been left much longer, it would have become another TN IDC. So I feel lucky
.All the very best to you all,
Karen.
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Hello Karen3
Thank you for your post and glad to see you liaising with christina1961.I think we have all learned that we cannot take anything we are told by our medical team as gospel. We know our bodies, we know what we feel and we have to go by our gut feelings and get them checked out. If you are experiencing pain it is no good an "expert" telling you that you do not have pain with cancer. I have read enough of the posts on breastcancer.org to know that some of us have pain and some do not. What your breast surgeon should have said was that, in general, women do not experience pain, but there are always exceptions. It reminds me that, for TNs, although it appears to affect younger women, that older women can also be affected. I remember posting in the past on an interesting thread about not a typical TNBC. I think the conclusion on that thread was that there is not really a typical TNBC. It transpired that not being "typical" was typical!!!
I certainly agree that you cannot generalise when speaking about breast cancer. We all have to realise that breast cancer is not just one disease and that there is not a standard "one size fits all" treatment. We certainly know that not all TNs are the same. We also know that there is not a predictable outlook for every person who gets breast cancer. That is why we must not be frightened by what we are told or by what may be happening to other women posting on the thread.
I was very interested in what you wrote to christina1961 about the DCIS component of your TN. It is interesting that both you and christina1961 had a DCIS component to your invasive TN tumour. I have no idea whether I had a DCIS component to my invasive tumour. I was told virtually nothing in 2005 and my breast cancer surgeon and oncologist were surprised when I compiled a list of questions to be answered. They were very willing to answer everything and said they were impressed, because, usually, patients did not want to know anything. Of course, it must have all changed now because of more and more information appearing on the internet.
I was very interested to know what your breast care nurse told you about how there is concern when they see tumours that do not have a DCIS component. If a pure invasive tumour in the breast can be a sign that this tumour is the result of spread from another invasive tumour, would that tumour not be classified as a secondary tumour, a metastasis? I have often wondered how different secondary tumours differ in appearance from primary ones.
I can understand that DCIS grade 3 has a greater chance of becoming IDC. I do hope that, in 2012, all women having regular mammograms and found to have DCIS, are told their grade and given their options. I know someone who has had diagnoses of DCIS and biopsies, but had never been treated for breast cancer. It must be a worry if you have DCIS grade 1 or 2, as I am sure many women will worry if they are told this, that it may develop to DCIS grade 3 or worse.
I think if you are diagnosed with breast cancer you can be in a no win situation. Without information you may worry, and with information comes certain worry! I suppose everyone has to find a way to deal with their situation.
One thing is for certain and that is, on this thread, we all admire the way you have left no stone unturned in dealing with your situation and probably having saved your life.
In your determination you remind me so much of Josephine, who used to post so much information. We know she was having a bad time and had metastases, but we do not know what has happened to her.
Wishing you all the very best.
Sylvia0 -
Hello everyone
I thought I would post a few bits of information that I have picked up this week.Aspirin:
Aspirin has been back in the news. This was mainly about information we have had in the past about everyone taking low dose aspirin on a daily basis to prevent strokes and heart attacks. After a huge amount of research, the consensus seems to be that people should NOT take aspirin, because it causes bleeds in the stomach and in the brain. The advice is that only people who have had strokes and heart attacks, and who are taking aspirin on the advice of their doctors, should continue to do so.
I thought this would be of interest to you as we have had discussions about low dose aspirin as a way of preventing recurrence or indeed as a way of preventing cancer. If low dose aspirin on a regular basis causes bleeds in people taking it to prevent heart attacks and strokes, common sense dictates that it will cause bleeds in anyone taking it for whatever reason. Obviously, it would seem to indicate that the same risk applies to those taking it after having heart attacks and strokes.
Implants:
The scandal rages on. I think it is immoral that private hospitals that installed these implants are now refusing to remove them. I think it is unfair that our cash-strapped NHS is now having to pick up the tab for removing them. I feel strongly about this, because, at the same time, so many cancer patients are being denied drugs on the grounds that the drugs are too expensive and not cost effective. I have read of a couple of cases recently where children are going abroad for cancer treatment and it makes me ashamed of my country.
I am also concerned that there do not seem to be any regulations about non-drug related procedures, such as hip replacement surgery and knee replacement surgery, but we are literally drowning in red tape when it comes to medication, especially for cancer. What price is a life? Not that much when it comes to cancer drugs.
Osteoporosis:
This is something that all of us that have been through breast cancer treatment should be concerned about. I have said in the past that all women, in my opinion, should ask about the effect of chemotherapy and radiotherapy on their bones. If it were me I would get a bone density scan before treatment and after treatment. Osteoporosis is a serious disease that can have crippling effects.
Bisphosphonates have been back in the news this week.
Daily Mail Wednesday January 11 2012, Ask the Doctor - what is best for brittle bones? The link is:
http://www.dailymail.co.uk/health/article-2084348/Ask-doctor-Whats-best-drug-brittle-bones.html
I urge you to read this article. There is mention of bisphosphonates - alendronate (oral, weekly), ibandronate (oral, monthly), zoledronic acid (yearly, injection). Apparently a lot of people cannot deal with bisphosphonates.
There is a new drug, that is not a bisphosphonate, known as denosumab, that is taken as a twice yearly injection. This can be administered at your GPs surgery.
In today's Daily Mail there is a warning about bisphosphonates. The title is Bone drugs could raise fracture risks. Apparently some women on bisphosphonates are having serious fractures in the femur bone of the hip. The link is:
This is not the first time that warnings about bisphosphonates have been in the newspapers.
There was also news in the Daily Telegraph yesterday about bisphosphonates. The article was entitled Osteoporosis drug doubles cancer risk. This is all about how bisphosphonates taken for about five years can cause problems with the oesophagus and may cause oesophageal cancer. The link is:
http://www.telegraph.co.uk/health/7978531/Osteoporosis-drug-doubles-cancer-risk.html
When I was diagnosed with osteoporosis, after treatment for breast cancer and an over active parathyroid gland, I was told I should take bisphosphonates. I said I would never take them, having read up about them. I am trying to deal with my own osteoporosis by a calcium rich diet (NOT dairy products) in addition to Solgar calcium tablets, plus vitamin D and magnesium. I take a minimum of calcium tablets because of the information about them causing cardiovascular problems.
Coronary stenosis:
I am also concerned about coronary stenosis as a result of radiation therapy for breast cancer. I do not think that in the UK we are offered after-treatment monitoring of the heart. I had an ECG before treatment with chemotherapy and one before surgery, but nothing since I finished treatment in 2006.
The link is:
http://www.breastcancer.org/treatment/radiation/new_research/20111229.jsp
That sums up the bits of information for today.
Sylvia
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Hello Everyone again,
I forgot to add another piece of information about osteoporosis. You might like to have a look at THE BETTER BONES BLOG. This one is right up to date. If you are worried about osteoporosis you will be interested to read about a newly revised book by T Gillian Sanson.The title of the book is The Myth Of Osteoporosis.
In this book she questions the common things that we are told about osteoporosis and deals with various myths about this disease,such as the myth that bone density testing is accurate, reliable and meaningful. If you do not read the book, at least read the blog.
Best wishes, Sylvia.
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