Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia and all the wonderful people on here.
This is my first time, I have been reading all the positive advice and information for the past few days.
So I decided to bite the bullett.
I think I read you asked if anyone had hormonal BC, I did back in 2003. Had lumpectomy, chemo and radio, followed by 5 years of Arimadex. Had all this treatment in Spain as I lived there for 10 years..
I'm now back in the UK. Went for annual mammagram in May 2011 and told I had BC now in the other breast. TNBC this time. Had Lumpectomy 2nd June, I have just had my 2nd chemo yesterday (4 to go)
6 x EC in total the 15 x Rad
I seem to be doing ok on chemo, although I did have some digestive problems first time round, but fingers crossed, they seem to abated.
Like most I have a very good diet, drink plenty of water and rest when I need to.
I send my best wishes to everyone, think positive.....................
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Hello Jan
I was so sorry to hear that you are having to go through breast cancer for the second time and I hope you will find a lot of support on this thread from all of us.I hope you have managed to settle down again in the UK, because I know that it is quite difficult after living abroad.
It is very strange how this disease works. As you probably know, TNBC usually responds very well to chemotherapy and we are all wishing you the best of luck in your treatment. Is this a new primary in the other breast? Did your medical team have any explanation as to why this has happened? I noticed that your chemotherapy treatment is epirubicin and cyclophosphomide for all the treatments. Most patients seem to be getting docetaxel (Taxotere) or paclitaxel (Taxol) as part of their chemotherapy treatment, especially with TNBC, which responds very well to these two drugs. Did you have, by any chance, either of these two drugs as part of your original chemotherapy treatment that had to be suspended?
I was wondering whether the five years of Arimidex could have caused anything. Women I know here seem to have Tamoxifen for a few years and then Arimidex. I mean those with hormonal cancer, of course. I have read in the past that if you take Tamoxifen for too long that you can end up with TNBC.
I am glad to know that you are doing alright on your chemotherapy treatment, as it is the most difficult part of treatment. Are you having your treatment every three weeks or every two weeks?
With a bit of luck your treatment should all be over by Christmas.
I saw in your details that you have mentioned the word metaplastic, so am I right in thinking that you have been told you have metaplastic breast cancer? My information is that this is quite an uncommon cancer and that it is often triple negative, which is also not so common, about 15-20%.
Please do not be shy about posting. Our thread is here to support people and help them through their treatment. You can talk about anything that is bothering you. One of the women on the thread, bak94, will probably be interested in exchanging views with you. She has been going through treatment for a new primary in the left breast after being in the clear for 8 years, having had a lumpectomy etc. in the other breast.
We are all thinking of you. Best wishes.
Sylvia.0 -
I just wanted to add a word of encouragement to all of you.I have just read a post from another thread on the triple negative bc forum from Shirlann saying that she is thirteen years on from a diagnosis of TNBC. We need to hear these success stories.
Sylvia.
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Hi Sylvia,
Thankyou for getting back to me.
I came back to England bacause I had 3 grandchildren in quick succession, I was missing their early years, and I love seeing them on a regular basis, so no I am very happy to be back.
Yes this is a new primary in my left breast, my clinical notes say..... Ductal 1/c metaplastic......DCIS-High Grade.....Grade of Cancer 3.....Cancer Size 28mm....Nodes clear. My medical team had no explanation why I have this, they said I was probably prone to cancer or words to that effect. Like you I've always thought about taking Arimadex long term, and what would be the long term outcome.
You'll have to excuse my spelling, but on my Spanish medical notes, I was having Cyclophosphomide, 5-Flourourcil and doxorybicin. My Spanish oncologist stopped this after the second dose because of my renal cancer. So I don't know why they are giving me EC now. I've had a Muga Scan to check that my heart was ok to take it after the first lot, thay are also keeping a close eye on my remaining kidney.
My chemo now is every 3 weeks for 6 sessions followed by 15 x rads. I don't know much about Metaplastic, can anyone help me with that? Did not realise it was an uncommon cancer, I have been concentrating on TNBC for all my information.
I'm so pleased I have found you, there seems to be a lot of very brave and wonderful people here, I am a great believer in mind over matter. I would be pleased to be in touch with bak94 or anyone else.
Best Wishes to everyone....... Jan
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Hello Jan
Thank you for your post. I can understand that you are happy to be back in the UK to watch your grandchildren grow up.Thank you for giving us some more details.
It looks as though the chemotherapy you had in Spain was much the same as we get in the UK, with slight variations. What we call FEC is quite common here. It stands for fluorouracil, epirubicin and cyclophosphamide. The doxorubicin that you are having belongs to the same group of drugs as epirubicin. You might want to ask your medical team if there is any reason that you are not having any docetaxel or paclitaxel. In this country you must not be afraid to ask questions as information is not always forthcoming.
I do hope everything will be alright with your other kidney.
I have been looking on the internet about metaplastic breast cancer and thought you, and others on the thread, might be interested in the following reference.
This morning I was looking through what was happening on other threads in the triple negative forum. I came across a thread with the heading Newby and started reading some of the posts. I found one person there whose details mention metaplastic breast cancer. Her name is tninalabama. If you happen to be viewing this thread, tninalabama, please post with any information you may have.
Keep well, Jan.
Best wishes
Sylvia0 -
Hello everybody
I just wanted to say that, as yet, I have not been able to find any clear cut percentages about triple negative and using hormonal treatments.I did discover that there is no approved anti-body based therapy (like Herceptin) for low HER2 expression +1, or for 2+/Fishneg. I do not know what the last part of this means. Can anyone help?
Yesterday, in the Independent, on page 20, I found a long article about cancer and it was from a report by Macmillan Cancer Support. The report said that 4 in 10 people in the UK will get cancer during their lives and that the number of people with cancer has risen a great deal in tha past ten years and that these numbers will be a challenge for the NHS. This all sounds bad.
However, the title of the article is "Cancer: the good news". There is a new book out with the title "Millions Survive Cancer: The Success of Science" by Dr Lauren Pecorino. This is all about the progress that is being made with cancer treatment. The article in the Independent is quite detailed, so I would advise you to try to read it.
Some of the information mentioned will be familiar to many of us on this thread. There is, of course, nutrition and physical activity (which is apparently good for boosting the immune system). There is a good explanation of what happens to our DNA if we smoke and inhale 81 different carcinogens and also what happens to the DNA when we drink too much alcohol. Apparently these chemicals stick to your DNA and mask the genetic code, so your body produces faulty proteins. These faulty proteins cause abnormal growth in the cell and it is this abnormal growth that causes cancer. Breast cancer is mentioned as one of those cancers in which alcohol plays an increased risk of development. The four things mentioned here are things in our life that we can control in attempt to reduce our risk of cancer.
It is pointed out that the three-stage treatment that we have to go through when diagnosed with cancer, chemotherapy, surgery and radiotherapy, has saved millions of lives.
In the article there is mention of the area of genomics and how important the genome of a tumour is, because this guides treatment. Everyone's tumour has different DNA, because the DNA is a record of how much exposure a body has had to carcinogens.
I have only explained things briefly as I understood them from my reading of this article by Dan Roberts in the Independent. Try to read it if you can. I am about to order this latest book on cancer to get more details.
I hope all of you are coping as best you can. I have been wondering whether TEK2009 is alright as we have not heard from her in quite a while. I hope Karen3 is back from Turkey and had a good holiday. As for JennUK, debbyanzalone and AliF, I hope you are all alright and coping with your various treatments.
Keep happy, everyone.
Sylvia0 -
I went to my oncolcogist Tuesday - based on the 5-10% "intermediate" staining for estrogen receptors, he put me on Arimidex. He said that studies had shown a benefit for those on the low end of ER positivity as great as the benefit of anti-estrogen drugs for those with 50% estrogen receptor positivity. He said for someone with 30% ER+, the benefit of the anti-estrogen drugs was as great as it is for those with 90% ER+. He also said this would reduce my chance of recurrence by 50%. I will have additional information about all this when I go for the second opinion visit I had scheduled following surgery after they discovered I had only a partial response to chemo.
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Hello Sylvia!
I was going to message you but thought it might be more useful to add some thoughts here.
You were unsure about the terminology of HER2 positivity.Usually in the UK they test the tumour with a test called IHC (Immunohistochemistry); 0 and +1 are considered to be 'normal' or negative;+2 is borderline, and +3 is positive.The more reliable test apparently,is FISH(flourescence in situ hybridisation),which,as far as I know, is not routinely used here.If you are diagnosed as HER2+2 with IHC,then it is advisable to ask for a retest with FISH.The results of a FISH test are either negative or positive.
Hope this is useful!
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Hello christina1961
Thank you for your post. I think it is very important that we all try to find out exactly where the cut off point is with these percentages, so that we clearly know whether we are truly triple negative or not. It is only my own opinion but I would not want to be taking any hormonal treatments after finishing the three treatments most of us have.I found the figures a bit confusing that you were given and I wonder what others think. I shall be very interested in what you are told when you have the second opinion.
Hello sam52
Thank you so much for your information. I am sure this will help a lot of people to understand their position with HER2. I am sure most of us have just been told we are negative. Thank you for explaining the FISH test. It seems to me as though the FISH test is certainly better for peace of mind for the patient.
Do you think there is an equivalent clear cut test that can tell patients whether they are positive or negative for ER and PR, so that they can have peace of mind? I do not like the idea of uncertainties in hormonal percentages. I know that I was 0% ER and 5% PR and I was told the PR was negligible and made it negative.
Thank you sam52 for your help.
Sylvia.
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Hello Jan
I wanted to let you know that I have found some snippets of information about metaplastic breast cancer. Apparently the cells of metaplastic breast cancer are cells not normally found in the breast, such as skin or bone cells. This cancer is also known as carcinoma with metaplasia. Metaplastic breast cancer is usually triple negative and is treated as IDC.It seems that docetaxel (Taxotere) is very effective with this kind of breast cancer.
Apparently the cells with this kind of cancer are spiral.
I hope you find this information useful.
I was browsing through the triple negative forum of breastcancer.org yesterday and saw that there are now 39 threads dealing with this subject. It is definitely no longer in the dark ages. I saw that there is a thread dedicated to metaplastic breast cancer.
Sylvia.
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Hello everyone
I got the following information from Tuesday's Independent newspaper, "How to lower your cancer risk".Be as lean as possible without becoming underweight.
Be physically active for at least 30 minutes a day.
Avoid sugary drinks and limit consumption of energy-dense foods that are high in added sugar, low in fibre or high in fat.
Eat a variety of vegetables, fruits, whole grains and pulses, such as beans.
Limit consumption of red meat and avoid processed meats.
Limit alcoholic drinks to two for men and one for women per day.
Limit consumption of salty foods and foods processed with salt (sodium).
Do not use supplements to protect against cancer.
If possible, mothers should breast feed exclusively for up to six months and then add other liquids and foods.
Always remember, do not smoke tobacco.
(Adapted from the 2007 WCRF/AICR report, Food Nutrition, Physical Activity and the Prevention of Cancer, a Global Perspective).
Sylvia.
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Slyvia,
I wonder why they say don't use supplements that protect against cancer?
Heather
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Hello Heather
Thank you for your post. I hope that your chemotherapy treatment is not taking too big a toll on you. It sounds as though christina1961 is having quite a rough time. Make sure you take good care of yourselves.
If you read the line again you will notice it says do not use supplements to protect against cancer. That word "to" makes a subtle difference, as I read it. I think what they are trying to say is do not rely on supplements alone to prevent cancer. I do not think there are any supplements on sale that claim they protect against cancer. I think they are also trying to say that supplements cannot replace the good nutrition in food.
I am sure most of us are taking some kind of supplement, but we do not really know what they are doing for us. They are not a natural thing for the body. I do take regular daily Solgar supplements of calcium citrate, plus a magnesium supplement and two vitamin D supplements, because, as a result of my breast cancer treatment and an over-active parathyroid gland (now cured), I developed osteoporosis and this worries me because it can become very serious and debilitating.
Keep well.
Sylvia.
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Hello everyone
I have just found the following information. Apparently not all breast cancer units in the UK check for PgR (progesterone) but they do check in cases of TN tumours. All units check for oestrogen and HER2. The amount of ER is reported, as well as a simple ER positive.A commonly used scale classifies ER and PgR between 0 and 8. Zero is negative. There is no score of 1, and the score 2 indicates a very low level of receptors. Most breast cancers have high levels of ER or PgR and have scores of 6, 7, or 8. Cancers with scores of 6, 7, or 8 are known as ER rich.
What I do not know is how these numbers equate to percentages. Can anybody enlighten us?
As for HER2, this is reported as positive or negative, but two tests are needed in borderline cases, and in the UK it can sometimes take 10 - 14 days to get a result.
HER2 is part of a group of four HER receptors and is the most important. HER2 can be blocked by the drug trastuzumab (Herceptin) and can shrink tumours. Tumours with HER2 represent about 20% of breast cancers. There are treatments for HER1. The oral drug, lapatanib, blocks HER1 and HER2. The drug pertuzumab, blocks HER1, HER2 and HER3.
I hope this is of some help to all of you.
Interestingly, for me, I have read that there are few, if any, ER- and PgR+ cancers. Mine was ER- (0%) and 5% progesterone, which I was told meant it was PgR-. Now I am wondering what 5% PgR equates to on the scale 0 to 8. Has anyone got an answer?
I think that is enough for today!
Sylvia.
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Hi everyone, interesting article in last week Sunday times magazine report - Toxic world.. Of the 30,000 chemicals in common use, only 3,500 have been toxically tested. Health concerns rage over plastic bottles. We should not use non stick frying pans. The article is too long for me to give all the details. You should be able to find it on sundaytimes online.
Had chemo5 thursday, had been delayed due to low WBC. Not feeling too bad - manic and sick but just one more to go.
Hope you are all doing well
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Hello BernieEllen
Thank you for your post. Thank you for the information about the chemicals in common use. I was not surprised at the number and not surprised that only a fraction are tested. It just shows you that even though we can control what we are eating to a certain extent, we cannot control our environment etc., except in a very limited way. I have read a lot about plastic bottles and containers and a link to oestrogen. I have also read about all the negative effects of non-stick frying pans, especially if they begin to flake.
I did try to find the article on-line, but discovered that you had to pay to obtain it and subscribe to the Times. I did not want to do that. I have studied all the newspapers and prefer to buy the Independent.
I was glad to know that you have now had your fith chemo, so you are almost at the end of that treatment. I was also glad to know that you are not feeling too bad.
When I read some of the threads and read how unwell some people feel during chemo, I realise how lucky I was to go through feeling normal most of the time. Feeling tired was what stands out the most for me. Besides the orthodox treatment, I did take homoeopathic treatments and attended hospital in Bristol, where I saw a homoeopathic doctor, who saw a lot of women going through breast cancer treatment. My own breast cancer consultant referred me to her at my request and I had homoeopathic treatment at each stage of my orthodox treatment.
Sylvia.
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Hello Maria_Malta,
I just wanted to say that I was so glad to know that you have now finished your chemoptherapy. You must feel very relieved. You will probably find the rest of the treatment much easier.
Sylvia.
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Dear Sylvia.....unfortunately my last chemo is NEXT Friday (12th), so I still have a few days to wait...but thanks so much for your kind thoughts.
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Dear Sylvia.....unfortunately my last chemo is NEXT Friday (12th), so I still have a few days to wait...but thanks so much for your kind thoughts.
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Hello Maria_Malta
Thank you for your post. I am sorry about the mistake. I shall be thinking of you on August 12th when you have your last chemotherapy.Keep looking forward to next week and the weeks ahead.
Sylvia.
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Hello Everyone
I was reading another thread about someone in Australia who was asking about treatment with Taxotere and Carboplatin for stage IIa TNBC. Apparently, the person had an ER+ tumour and a lumpectomy in 2009 and, as I understand it, now has a recurrence in the same breast that is TNBC. Does anyone have any thoughts on this?I keep thinking about what I read about staying long term on hormonal medication and the possibility of ending up with TNBC. Any thoughts about this?
There has been mention of a MUGA scan. Would anyone like to explain about this?
Would anyone like to explain k67?
Does anyone have any more thoughts on oestrogen percentages and whether you get diagnosed with hormonal breast cancer or TNBC?
With all the discussion that is going on, are we to assume that tumours can mutate during chemotherapy and receptors change?
Sylvia
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Hi All
Just to let you all know I am still here just been a little occupied with visitors for last month or so, also started Carboplatin finally last Monday so have been struggling a bit with being back on the dreaded chemo.
Anyway thought I would let you know where I am right now, the cancer has now spread to right and left lungs. I have been reading about trials etc since I believe I am pretty much on the last standard treatment they can offer me and it may not work. Nevertheless am staying positive and was tested for a different hormone "Androgen" which I gather most of us probably have, however there are hormone drugs that can be directed at this. In particular "Aberaterone" which is in phase I trial here, but apparently I am too young for the trial. Anyway in the end I found another drug "bicalutamide", which is FDA approved for Prostate cancer but they are trialling it in the US for TNBC, currently phase II. Anyway am looking into taking this hormone and more on that later.
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TEK - I've been thinking about you. I'm so sorry to hear your cancer has spread. But I know that many women have seen great success on Carboplatin, so keep hope. This cancer can turn on a dime with the right treatment.
Did you come back positive for Androgen receptivity? I'm waiting for my test results on that myself. If you are positive, that is another line of potential treatment for you, which would be great. I hope you are able to find something that works for you for a very long time.
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Hi Tek
sorry to hear about the lung mets. I had a good response to docetaxol plus avastin with my lung mets. Have been on chemo holiday for 3 months. CT and bone scan in 10 days to 'assess' situation. Have discovere that nausea, vomiting, dry mouth and occasional blurred vision due to side effects of opiates which I now have to take regularly. Keep in there girl, and let us know how you get on with the platinum
Josephine
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Hello Everybody
I was glad to see today that you are keeping the thread going. I was so glad to see your post TEK2009, as I have been wondering how you are getting on. I was glad to know that you have had some visitors and hope that you were able to have an enjoyable time. It must be very difficult for you being back on chemotherapy, but we are all hoping that the carboplatin will be successful for you. Are you having it every two weeks or every three weeks?I was so sorry to hear that you now have mets to both lungs and I do so hope treatment will work for this. I do hope you will find a trial that you can join. It is good to know that you are staying positive.
I was very interested to know that you were tested for the androgen hormone. I had not heard much about this, but someone called suelynn did post on here a while ago on behalf of her mother. She explained that her mother was diagnosed with breast cancer at age 62 and had a mastectomy. She said that her mother had had a recurrence at age 69 and had TNBC with mets to the sternum and pinpoints in the lungs. In addition, she was also AR+ (androgen positive).
I have heard of the drug bicalutamide and know that it is in trials in the US, but I thought it was not advisable for women to take it. Do you know what it is supposed to do for you? I know that it must bind to an androgen receptor and do something, but I do not know what. What made your medical team test you for it? Do you know what androgen does in the body?
If anyone has any information please post.
Hello Suze35.
Thank you for your post. Can you explain to all of us why there seems to be a sudden spate of testing for androgen receptivity and what connection, if any, it has to TNBC? Is it another thing like being HER2+ or -?
I hope you are feeling much better.
Hello josephine_.
I was glad to see you back on the thread. How are you feeling after three months with no chemotherapy? We shall all be thinking of you in ten days time when you go for your CT and bone scan, and hoping that everything will be alright. I was sorry to know that you are suffering side effects from the opiates and hope you can find ways of alleviating the side effects.
Let us know how you get on.
To everyone on the thread, having a bad time with their treatments, we all send you our support and very best wishes.
Sylvia.
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Hi - I have been away for awhile but just checking back in here... love your thread Sylvia.
My mother is the 69 yr old that you spoke of with TNBC reoccurance in lungs and sternum. She is now on the clinical trial for bicalutamide.... one of only a few here in US. It is the MSK trial. She was previously on Gemzar for 8 wks and had slight progression in lungs - therefore is giving this AR+, prostate drug a go. She has only been on it for 1 wk... and doing pretty well. I really, really hope this is the right drug for her.
I do know based on lots of phone calls... this drug has worked for someone for 3 yrs. I would love to hear from other women who have given this a try... I know there are very few so far.
Please let me know if you have questions - I can reach out to my mom.
Best of luck to everyone!
Suelynn
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Hello Sylvia and everyone, special hello's to Josephine and Tek. I hope the treatments work for you tek, I have also heard good things about the platins. Josephine, I hope you are feeling well with your chemo break and wishing you good results for your ct.
Suelyn, I hope your mom sees great results with her new treatment, bless her.
I had a long talk with my doctors nurse and received some great information, but really no studies to back it. She said they have been putting most breast cancer patients in their office on zometa for the past ten years to prevent bone mets with great results. She did not share numbers with me. She also said that some triple negative patients show a good response to ai's even being triple negative, so with me being 3% er she is thinking the doctor will put me on something. I know I have heard triple negs being treated with anti hormonals, but I do not not know much about this. I think it was pretty common many many years ago to put everyone on tamoxifen, if I remember right, no matter what their status. I will have to look for some old studies on this and if anyone else has knowledge I would sure appreciate it. I do not want to be on something that makes me miserable for no benefit!
Thank you for the info on ar, something else to bring up to my doc. The nurse told me he is on vacation In Israel and is visiting the Wailing Wall. He told my nurse that he is praying for all of his patients and nurses at the Wall. I think he is such a special doctor.
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hi bak
you seem to have such a special doctor. Mine is also great and such a sweetie. It makes all the difference I think. I am zometa for my rib and other? bone mets hence the CT and bone scan on the 22nd will be important as I have alot of bone pain presently, which I am aware can be caused by the healing/inflammatory/sclerotic processes as opposed to ramped up met activity. I am keeping a close eye on a new (for bc) antibody called denusumab which is a mab (monoclonal) against a molecule called RANK ligand which is involved in osteoclast (the macrophage like cells that chew up bone and are activated by cancer cells) action. It has been approved for prostate cancer, and I was considering it if zometa showed little response (and no evidence of this yet). Going back to your ER status and having a hormone antagosist I think there is value in this. Becasue my core biopsy gave an ER score of 4/8 but the total tumour removed was zero, we spent some time considering tamoxifen or not and then decided yes, for a year!! I had horrid sleepless nights and hot flushes but was glad I did it, because when I got the recurrence I know it was not because I had not taken tamoxifen. I think the core had some normal breast tissue mixed in, and that my tumour is really ER negative, but even tumours are heterogeneous. However, the general consesus is that TNBC are basal in origin and derive from cells that are hormone receptor negative.
Keep well
J
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Suxe35
Are they testing you with a view to the same trial I have been looking at ie Bicalutamide? Will keep my fingers crossed it looks like my last hope if the Carbo does not work. Too early to tell just yet. Good Luck its nerve racking.
Josephine
Really wish I had read your thing sooner, last week when started Carboplatin had more pain so Dr upped me to a morphine derivative and I took 8 a day along with a couple of other things and then nearly collapsed at the beginning of this week with nausea, dizziness etc and did not know why till GP realised it was my reaction to the pain pills. Anyway cut back and am feeling better, although pain still annoying, I am going to have to watch the nurses they all tell me to take the pain killers and have now given me a low morphine one as well, but am reluctant to take it, it is hard balancing pain with sickness and not being able to do very much, so far am managing but guess it will get harder. Good luck with yours, life just ain't fair sometimes.
Slvia et al
Thanks for that again, re the Androgen testing I suspect it is because recent research has finally made them realise that even TN is not just TN, there are subtypes and they are finding that maybe they can target treatment for these, I think a little like they do with hormone BC when they use drugs like tamoxifen, it seems androgen is a male hormone that many BC women have (not even just TN) but it could help us if there are drugs that attack this (am guessing thats what it does at this stage I will take anything almost). As I mentioned above I know of two targeted therapies for androgen positive women, Bicalutamide (available in the US in trials for TNBC) and Aberaterone (Phase I in the UK).
My real concern is how easy it is to find out about these trials in the US but that there is nothing here in the UK and it is down to the luck of your consultant to promote a new drug or trial.
Thats it for now got one awful headache today, not like me at all so am going to get some fresh air, just hope the rain stays away.
T
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Hello Sylvia and everybody,
Have been skulking round the forums briefly most days, but there's been so much info on this thread and the other TN threads that I needed time to process it, especially as I've a lot on my mind regarding my own situation and decisions that I'll have to make in the future. The good news is that I had my 8th (and last) cycle of chemo yesterday...feeling hyper today as I usually do as a result of the steroids, before the 'crash' tomorrow evening...however the knowledge that this is the last one has made me feel I can cope better this time, although I do feel a bit concerned about the rest of the journey.
Saw both my bs and onc last week..the surgeon feels we should go for a mastectomy because of awkward place tumour was in, beneath nipple, (has shrunk considerably and not palpable, but will have another ultra sound before op to see exactly how much it's shrunk; after first 4 sessions it had shrunk more than half..should have gone down further since then.)He will also be removing a number of lymph nodes for testing, and if he sees signs of enlargement, or scarring will remove as many as he can, if I understood properly.We discussed options for reconstruction,(can't immdeiately as have to have rads as well) but I've thought it through very carefully, and have decided am also going to have a bilateral mastectomy, as I know I'll feel much safer, although both doctors told me that I'm as likely to get a new lump in my left breast as any other woman who hasn't had bc...But I just feel much more comfortable with this idea, and I know that I'd also be happier being symmetrical..The bs will go with whatever I prefer, although I think he thinks I'm being rather drastic, and says I can think carefully about it as I won't be having sugery until the first week of October as he's going to be away in the last 2 weeks of September. In my notes my onc only had the fact that I am triple nagative, but not the exact percentage negative, or number, as apparently the line is drawn by the radiologist, who then defines patient as TN..so am going to have to try and chase those figures..not sure I'll manage but will certainly try, although the idea of taking tamoxifen unnecessarily doesn't appeal to me much.
For those of you who have been through this I'd like to know what kind of follow-up care you had after you had finished all the treatment...for example, how often did you see your onc at first, in my case I will not be having mammograms/ultra-sounds, but I imagine I'll be examined, did you ever have Pet, or CT scans, etc, and if so how often? My onc seems to think that there isn't much point in having Pet/CT scans, as these do not improve the prognosis in case of mets, but is this really the case?
I apologise for this post being all ME ME ME when so many of you are going through an equally hard, and in some cases much harder time... I think moving on to the next stage, while wished for, is also quite stressful and I can't help wondering, what next?
Thinking especially of you TEK and Josephine, but also best wishes to all of you on this thread, take care, spoil yourselves as much as possible and do things you enjoy...
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