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Calling all triple negative breast cancer patients in the UK

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Comments

  • BernieEllen
    BernieEllen Member Posts: 2,285

    Hi mccrimmon.  Sorry to hear you are still struggling, you'll get there.  I'm going for my rad markers this morning, then BC clinic tomorrow for a check up.  Can't shift this flu thing i've had since the chemo finished.  I got so run down trying to work and keep going - not worth it.  I was off sick but went in for my yearly review (first one in four years), my darling boss who has been with the company for the last six months - age 32 and with a background of rich mummy - this being his first job in management told me my mind wasn't focused.  Now aside from the fact that i have a degree in management and am on a back to work disability scheme because i'm bipolar, i do all the office work and shop ordering and have been going in when i can to catch up on everything. The assistant manager cannot use a computer and darling boss still hasn't learnt to do all the booking in and computer work.  Anyway i spent a week mulling over my review and resigned by email.  He understands email because when he's been stuck and i'm at home sick he emails me for help.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello BernieEllen


    Thank you for your post. I am so glad to know that you find the information on the thread useful. I think you will probably manage your treatment better without having to hold down a job and I hope you will be able to manage financially. I really think that going through cancer treatment is a full time job and I do not know how anyone copes with dealing with cancer and working at the same time. I think your boss should be ashamed of himself and cannot have any understanding of what it is like going through cancer treatment. He sounds like a young smart Alec who thinks he knows it all but knows nothing! He should remember pride comes before a fall! If the truth be known, he feels threatened by you. He should also remember the saying be nice to people on the way up as you will meet them on your way down!!!

    I sincerely hope that you can now relax more and cope with your radiotherapy. How is the bipolar going?

    I would like to say how much I like what you have written on your biography and how much I agree with it.

    Look after yourself and do everything you can to strengthen your immune system and keep as well as possible.

    Best wishes
    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello mccrimmon324


    I am keeping my fingers crossed that you will be well enough to have your last chemotherapy treatment this week. I hope the low grade fever will go this week or that it will not be a cause for delay.

    Best wishes
    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello everybody


    I was wondering whether any of you read the article taken from Science Daily about a new peptide that could be effective treatment for TNBC. I shall give the reference again, just in case you missed it.

    www.sciencedaily.com/releases/2011/02/110228151915.htm

    Briefly, this article is about the leptin receptor antagonist peptide that could become an option for TNBC treatment, especially for obese patients. Apparently obesity increases the risk for TNBC development. New treatments are urgently needed for this type of breast cancer. Leptin is a protein that is always elevated in obese people and is higher in women than in men. This protein can promote cancer development within the body, counteract the effects of cancer treatment and cause metastasis. It had previously been suggested in studies that leptin levels were much higher in aggressive breast tumours than in normal breast tissue. It has been shown that in human TNBC tissues, the leptin receptor was expressed in 92% and leptin in 86% of cases.

    A mouse model was used and the new leptin receptor antagonist peptide was tested and was compared to conventional chemotherapy. The antagonist peptide proved to be much more effective than chemotherapy. This peptide was found to be non-toxic, even with the highest dose given. If this peptide can be developed as a drug it would be a very useful addition to the existing oncology drugs against such cancers as breast, brain, prostate and colon.

    I thought I would post this to keep us all optimistic.

    For those of you newly diagnosed and facing chemotherapy, I would just like to remind you that before I started mine I was advised by my oncologist to get flu injections and pneumonia injections. This is done because of a weakened immune system during chemotherapy and the potential to pick up infections etc. I was also advised to stay away from crowded places and to keep anyone with colds or flu at bay. I was also advised that close relatives who would be in contact with me should also have the injections. I was also advised to see my dentist and to make sure that everything was in order before I started treatment, as it would not be prudent to have dental treatment during cancer treatment.

    Let us all face the week with optimism.

    Sylvia.

  • Maria_Malta
    Maria_Malta Member Posts: 667

    Hi Sylvia, just read the Science Daily article you mentioned, and the idea of developing peptide to use as a replacement/in conjunction with tradiitonal chemo, is really interesting...let's hope research and trials move quickly!  I'm very aware that obesity/being overweight is contraindicated in women who have had BC, especially TNBC  I don't fall into the 'obese' category, but am certainly overweight and am trying very hard to lose weight... chemo seems to have made me gain a couple of kilos, and although I've been eating very carefully I haven't even managed to lose any of this extra weight.  Have cut out white bread and pasta, eat red meat sparingly, no sweets and pastries, no sugar, etc etc but possibly the fact that I'm still retaining some water might have something to do with this.

    Bernie Ellen, enjoy your freedom from work while you can....I once walked out of a job without giving notice and it gave me such a sense of liberation...everyone should try it once in a lifetime!! Went back to work myself today (not teaching this term just involved with planning and admin)and am glad to be working as it will help pass the time till surgery.

    Mccrimmon,  fingers crossed that you're ok for chemo this week

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello Maria_Malta


    Thank you for your latest post. I was glad to know that you found the article about a peptide interesting. As you say, let us hope that research and trials come quickly.

    I do hope that you will be successful in your attempt to lose weight. I have heard that some people do put on weight during chemotherapy. Steroids are notorious for making people put on weight. In fact, I think quite a lot of weight problems are due to medication. I am fortunate in that I have never had this problem. I was a tall thin child and am still tall and slim. Before being diagnosed with breast cancer, I lost about 14 pounds in weight and during treatment my weight remained stable. I had steroids only on the day and for a couple of days after each treatment. On my consent form I wrote that I would not take steroids long-term. You could be suffering from water retention as well. You certainly seem to be eating healthily. Give it time and the weight should come off. It is sometimes easier to lose weight if you join a group such as Weight Watchers. I have a friend, a retired nurse from my hospital in Exeter, who runs a Weight Watchers group, and they have amazing successes.

    I can imagine how liberated you must have felt when you walked out of a job without giving notice. BernieEllen's boss sounds like a right idiot! Do you remember the song "Take this job and shove it!"? I really used to like it. I hope everything went well on your first day back at work. October 5th is not that far off. Keep happy.

    Best wishes
    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello everyone


    I have been wondering whether any of you are taking anything else as you go through conventional treatment for BC. Are any of you taking any homoeopathic medication or alternative treatment? I think I have already told you that when I was first diagnosed in 2005, I decided I wanted to investigate these treatments before beginning conventional treatment. My breast cancer consultant surgeon referred me to a really good doctor at the Bristol Homoeopathic Hospital. Although she told me at my first appointment that I would need to have conventional treatment, she also told me that she could help as I went through the treatment. At that first appointment, which was on the NHS, I had about an hour with her. With this treatment doctors do take the time to get to really know you.

    I started off with Carcinosin and Calcarea silicata. These were to help fight the cancer and strengthen the immune system. I also started on oral Iscador (mistletoe extract), which I took until 2009, with a couple of rests in between. I also took Bellis perennis LM3 to help with healing.

    I had a few nosebleeds while I was going through chemotherapy and I had Millefolium for these and I can tell you that they worked.

    While I was having radiotherapy, I had X-Ray and Belladonna to get me through and Arnica for healing.

    In 2007 I had Conium maculatum to help with anxiety and to give me a feeling of well-being.

    It is my own personal opinion that all of these treatments helped me through and I would love to go back on oral Iscador. I finished my treatment at Bristol in 2009 as my doctor and I thought I was ready to be duscharged. I have tried twice, unsuccessfully, to obtain Iscador from NHS Devon Primary Care Trust. They will not fund homoeopathic medicine any more and this could threaten the viability of the hospital. I cannot understand why Iscador is not getting more publicity, as I understand it is used in Germany in cancer treatment.

    Apart from the NHS homoeopathy, I also had one long and interesting consultation with a reputable private alternative doctor. I was again told that I needed the conventional treatment, but could use alternative treatment as an adjunct. This doctor treated a lot of patients through nutrition. I came away with lots of nutritional information.

    Since 2005 I have been drinking four or five mugs of Clipper decaffeinated green tea. I absolutely love it and hope that it does help to keep cancer at bay, as it is said to do.

    I would love to know what others are doing to help themselves with their breast cancer, whether they are in treatment or in the clear.

    Best wishes to all of you.
    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello Suze35


    I just wanted to say how very sorry I was to read that you have been told that you are Stage IV and I am sending you all my love and best wishes from the UK. I do hope that you will be able to get some excellent treatment in your country. Please keep looking on the bright side as there are many cases now of patients with Stage IV living for a very long time. I know you will leave no stone unturned to get the very best treatment or to get into trials.

    Live every day to the full and treasure all your time with your family. Laugh as much as you can, as laughter is great medicine. Thank you for all your postings to the UK thread.

    I am thinking of you and wishing you all the best.

    Love
    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Christina 1961

    I was sorry to discover that you are having some family problems. I am sending you my support.It is difficult for families to cope with a loved one diagnosed with cancer. How are others coping?

    Best Wishes,

    Sylvia.

  • bak94
    bak94 Member Posts: 652

    Hi Sylvia,

    A couple of posts ago you mentioned some cancers being caused by bacteria. My sister in law has just been diagnosed with such a cancer, called MALT lymphoma. She found out she has this in the stomach, as she was having indegestion troubles for awhile. It is sometimes caused by a bacteria or is found in people with an auto immune disease, her biopsy confirmed it is caused by a bacteria. It seems to be very treatable with a 70-80% response with using certain antibiotics. I just thought this was interesting and glad you had brought it up so I was a bit familiar with cancer caused by a bacteria. Of course she is beyond worried as we all know how that is! She is worried that she is in the minority of those who don't respond to antibiotics, and then she would have to do chemo or radiation :(

  • Suze35
    Suze35 Member Posts: 559

    Sylvia - thank you so much for your kind words and thoughts. It is a tough road, but I will do all I can to live, while keeping my quality of life. Research is coming faster now for us, so I'm hopeful - but realistic - that I will get a good amount of time. You are a wonderful addition to this board, and I'll be lurking here too!

  • BernieEllen
    BernieEllen Member Posts: 2,285

    Thanks to all for the good thoughts and encouragement.

    I'm doing well, bit manic but that's the bipolar - house is nice and clean

    Rad clinic this afternoon for verification and if that's all good I start rads on monday.

    Hubby will be back on oct 7th so he'll be with me for the final four weeks. (he works 4 on 4 off) Sister arriving from England next wednesday.  Spending the day with my niece on sunday.  

    Best wishes to everyone 

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello bak94


    Thank you for your post. I was so sorry to learn that your sister-in-law has just been diagnosed with MALT lymphoma, but the good news is that it is highly treatable. When I read your post I thought this is a coincidence, as I had been talking to one of my neighbours this morning and she told me that she was on antibiotics to treat Helicobacter pylori, a bacterium found in the stomach. This bacterium is associated with MALT lymphoma. One of my aunts and her daughter have both had Helicobacter pylori and I think in their case it manifested itself with indigestion-like pains. I can understand that your sister-in-law is worried and all we TNBCs know what worry is! Let us hope that the antibiotics will do the trick. If is does not, we all know that we can get through chemotherapy and radiotherapy. Let us know how things progress.

    How are you coping? Do you have an exact date for finishing your treatment with Abraxane and Avastin? I have just been talking to my cousin on the phone and she has osteoporosis and developed problems with the oesophagus through taking oral bisphosphonates. She had to stop taking them. In a couple of weeks she is going to have the yearly intravenous bisphosphonate. I shall have to see how she gets on.

    Look after yourself and keep as well as you possibly can. The latest newspaper snippet that I have seen was about something in beetroot fights cancer, so it looks as though this should be a regular part of our diet.

    Best wishes
    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello Suze35


    Thank you for your post. As you say, it is a tough road, but I am sure you will do all you can to fight this horrible disease while, at the same time, maintaining your quality of life. So much research is going on that you have to remain optimistic and make sure that you obtain anything that might help you. I think you are in the right country to get the best treatment that there is.

    Just enjoy every day and live that day to the full with your husband, children, family and friends. The group of American ladies on this thread are invaluable and I think we have got to know one another pretty well. You are an important part of this thread and I would miss you if you stopped posting. Stay with us and tell us anything that is bothering you. We shall give you all our support. Keep as well as you possibly can.

    Best wishes
    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello BernieEllen


    I was glad to know that you are doing well. I do admire the way you are coping with bipolar and TNBC. Can you explain to us these manic feelings? Do you feel over-active or do you feel on edge. There is nothing wrong with a nice clean house! I am very much a neat freak and also a minimalist!!!

    I do hope that you will be able to start your radiotherapy on Monday September 26th. We shall be supporting you all the way.

    It is good to know that your husband will be home soon to support you and that your sister will also be coming to support you. It makes all the difference. I hope you have a good day on Sunday with your niece, as I remember you said that she was very special to you.

    Best wishes
    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello everyone


    I just wanted to say hello as another week winds down. I do hope that, for those of you going through challenging problems, it has not been too awful and that you will make the most of the weekend to enjoy the time doing what makes you happy. For all of you with various scans, CT scans, or bone scans, in October, please post and let us know how you get on. To mccrimmon324, I do hope that you will get that last chemotherapy and put that part of the treatment behind you. To christina1961, I do hope that you have started radiotherapy or will start it soon. To Josephine, I do hope that you are not suffering too much and hope that we shall hear from you soon. The same goes for TEK2009. We have not heard from you in a while.

    Thinking of all of you and wishing you all well.

    Best wishes
    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Bak 94,

    I have been reading some of your other posts and just wanted to say that I do so hope that you had good news about your  CT scan and that you are not feeling so anxious. I know it is easy to say but worry gets us  nowhere. Remember that whatever the result there is always treatment. Try to forget about cancer and enjoy the weekend. Laughter is the best medecine.

    Best Wishes,

    Sylvia,

  • BernieEllen
    BernieEllen Member Posts: 2,285

    Hi Sylvia, all went well togay - good for monday - really going to enjoy the weekend.  After the clinic went down to the coast, walked along the beech and ate fish & chips.

    Bipolar as you know used to be called manic depressive - not a fairly accurate description nowadays.  It's more like a sliding scale which you are measured against.  I was always above middle - so that gives me the manic personality.  Shows in neatness, attention to detail, list maker etc. The mania can raise it's head without warning.  Obssession with cleanliness, inability to sleep, becoming deeply involved with issues.  The plus side - heightened senses, creativity, empathy and awareness.  When it goes wrong and only other people notice, never apparent to myself, everything is taken to the extreme causing severe fatique which in turn leads to the brain overloading followed by (loose term) a breakdown.  More often than not rest and gentle socialising is enough to bring you down before that happens. Thankfully enough I've only tipped over three times and only the last episode resulted in hospitalisation.  

    Current research leads the way in thinking that bipolar is caused by a chemical imbalance in the brain.  Having down extensive research and social and phychological studies I believe the symptoms can be seen in early childhood and then manifest during puberty.   Intelligence(not so sure about that one in my case).  Solitary pursuits i.e. reading, walking.  Not interest in the so called norm - fashion, make up, trivia etc. Own company preference - few friends.  Addictive tendencies i.e. smoking, drinking.

    Sorry if i've gone on a bit but this is one of the reasons i find your thread so interesting and educational.  Your attention to detail and the research that you do calms down my need to over anaylise everything.

    Lots of love

    Bernie 

  • bak94
    bak94 Member Posts: 652

    Sylvia, yes that is the name of the bacteria! How strange that this has come up in both of our lives!

    Well, good news! My scan was pretty much clear. It listed the past positive nodes as "resolved" and there were no new findings. So I am now doing #7 of 12 and will finish all twelve ans then off to surgery. Meeting with my surgeon next week and before hand he is having me do a breast and chest mri. I hope it agrees with the ct scan.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello BernieEllen


    Thank you for your post. I was so glad to read that all went well yesterday and that you all set for radiotherapy on Monday. You should find it so much easier than the chemotherapy. The most tiring is having to go in to the hospital every day for five days a week. How many weeks of radiotherapy are you having? Look after your skin and get plenty of rest.

    I was so interested in what you said about bipolar. I have a very inquiring mind and have always been very studious, so I was really interested in the details that you mentioned about it. I like to have everything clean and tidy but I would not say I am obsessive about it but I do not like clutter and I cannot understand people who hoard everything and cannot bring themselves to throw anything away. I do like everything to be coordinated. I do pay attention to detail and I do make lists of things that I have to do and I work my way through them. I have always been very meticulous about everything. However, I am also very calm and take everything in my stride. I can do an enormous amount of work without effort. I am keenly interested in many things including politics, current affairs, foreign languages, health, nutrition, and so on. I am also quite creative and can get on well with people, but am not over fond of socialising. It seems that we have a lot in common. I am glad to know that you appear to have your bipolar in control most of the time.

    I can understand about a chemical imbalance in the brain and bipolar. It seems to me that a lot of what happens to us, especially with our health, is to do with imbalances of hormones. I am sure that you are a highly intelligent woman and I bet you did a really good job with your work. I also like reading and have read so much during my life. I still read but I have to find a book that really interests me. I also like to walk, but have not done as much as I would have liked this year, because of something called plantar fasciitis on the heel of my left foot. I do like time on my own, have just a few friends, but do not drink or smoke.

    You do not have to apologise for your lovely detailed post, as I found it fascinating and am sure everyone reading it will find it most educational. I am so glad that the way I have been posting on the thread has been of help to you. From the beginning I wanted this thread to be serious, as well as helpful, because breast cancer is a very serious disease. That does not mean that I do not want people to have fun and a laugh on the thread, as they feel the need. We all have to take out from our struggle with breast cancer. Anyone on the thread can send posts to make us laugh and can write about anything they like. Everybody has something to say.

    I have a habit of always looking into anything that is new to me. That is why I love Google, but know how to choose the best information and that is why I also love reading reference books.

    You did exactly the right thing after your visit to the clinic. I can visualise you walking the beach and eating your fish and chips.

    Keep smiling.
    Love
    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello bak94


    Thank you for your post. It is strange about that bacteria Helicobacter pylori. I have heard so much about it and it seems to be very common. I wonder what causes the bacteria?

    It was so good to read that your scan was pretty much clear and that the past positive nodes were listed as resolved. I know you will be relieved to get through the drug treatment and get on with the surgery. Have you decided what kind of surgery you will have? I do hope that the MRI scan will be clear. Please let all of us know when you have a date for the scan and then for the surgery, so that we can all support you. I admire you so much for the way you are dealing with all this for a second time.

    I hope you are having an enjoyable and relaxing weekend. What things do you do that make you the happiest?

    Love
    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello everyone


    I hope you all had a good wind-down Friday and that you have made the most of Saturday. Here in Exmouth it has been a lovely day and very calm and mild. I have done some work in the grounds here and planted some flowers to cheer us up during the autumn and winter.

    I was remembering today how, when I was first diagnosed, I wrote to one of the cancer charities asking for statistics about cancer in right and left breasts. I was told that it is more common to have cancer in the left breast than in the right. I was just wondering whether perhaps it is more common with TNBC to have it in the right breast. Does anybody have any information about this?

    Regards to all.
    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Sam52,

    I was just wondering how you are. I hope all is well,

    You are welcome to post here even though you are not triple negative. I know you well enough to know that you will always have something of value to offer.

    Best Wishes,

    Sylvia.

  • sam52
    sam52 Member Posts: 431

    Hello Sylvia

    I am sorry not to have been in touch with you - life is somehow very full, especially now that I am back at school.I will do my utmost to send you a message very soon.

    I enjoy reading your posts and see you are doing a brilliant job keeping this thread going.

    As a matter of interest - I am a 'righty' like you; I also believe my tumour was located in a position where it is not very common - inner lower quadrant. It will be interesting to see whether any others had tumours located in that position.

    Best to you,

    Sam

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Sam52,

    Thank you for your post. It was lovely to hear from you because we have been through so much together, especially with our problems with hyperparathyroidism. I am still convinced that there is a connection between the hyperparathyroidism and the development of breast cancer. I tend to think that the hyperparathyroidism probably was a cause of the breast cancer, especially since my consultant said the hyperparathyroidism was there before the development of breast cancer. Of course there is always the possibility that something else caused both. I think hormones play a big part in the development of breast cancer. I have read quite a bit about hypothyroidism and diabetes being risk factors in the development of breast cancer. These two could be not only connected with hormones but with weight problems as well.

    What a coincidence that we both had cancer in the right breast. It is even more of a coincidence that my tumour was also in the lower quadrant. I did not know that this was uncommon. You see, Sam, we need you on this thread!

    Congratulations on approaching ten years since diagnosis.

    I do understand how busy you are, but try to remember to relax and smell the roses.

    Keep well and keep in touch.

    Love
    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    Hello everybody


    I hope you all had a good weekend and are beginning the week in good spirits. I thought I would begin the week posting some information about breast reconstruction as part of breast cancer treatment. We have had quite a lot of discussion about diagnosis and all the procedures that follow and then chemotherapy and radiotherapy. We have mentioned very little about breast reconstruction surgery and I do not think that those of you that have posted regularly are up to this point. Since I did not have breast reconstruction, I cannot write from personal experience, but I can post reliable information that might help if you are considering this. Most of my information comes from the book Understanding Breast Cancer by Prof. Mike Dixon and is published in association with the British Medical Association.

    Breast reconstruction is an operation in which the shape of the breast that has been removed through a mastectomy or a lumpectomy, is recreated. The shape of the breast will recreated to match the opposite breast as closely as possible.

    There are different ways of doing this and this should be explained by your consultant and discussed with you.

    A lot of women say that they feel better in themselves having had the reconstruction. I can say that, from my own point of view, I have not had any kind of problems adapting to having just one breast, having to wear a prosthesis, and having to buy special flaps to sew into my bra so that I can insert the prosthesis. I can also say that, when I am not wearing my prosthesis and bra, which I do only about the house, I do feel lopsided. I have also noticed that, without the prosthesis, my body seems to lean slightly to the left. It is not noticeable to others but I notice it.

    My information is that although the shape of your breast can be restored, the reconstructed breast will not feel like a normal breast and is often a bit higher and firmer than the opposite breast. Breast reconstruction is not usually one operation. To get everything right two or three operations may be necessary.

    According to this book, having reconstruction does not make any recurrence of cancer more difficult to detect. This was one of my own concerns and I still wonder whether all the reconstruction would have to be undone if there were a recurrence. Does anyone know the answer to this?

    Your breast cancer surgeon will advise you on the best time to carry out a reconstruction.

    In the UK breast reconstruction is most often carried out at the time of the initial surgery. My own consultant breast surgeon told me that reconstruction surgery would make the whole breast surgery much longer. As far as a mastectomy is concerned, it is carried out quite quickly. I seem to remember that I was told it would be about forty minutes and that it was not considered major surgery.

    If you have decided to have reconstruction surgery, you might want to ask for photographs of what your breasts are likely to look like after surgery. You could also ask to consult with someone who has had the surgery.

    There are three types of surgery.

    1. Using an implant alone. These will most likely be silicone implants.

    2. A procedure known as a pedicled flap.

    3. A procedure known as free flaps and requires microsurgery. They are usually performed only by specially trained plastic surgeons.

    Apparently, there is a procedure known as breast reconstruction using tissue expanders. This sounds rather complicated to me and is something you would have to ask about, or read the book that I quoted. I find this book to be a good little handbook for anyone going through breast cancer treatment. There are photographs in the book that are helpful in understanding the procedures.

    Nipple reconstruction is also possible if needed. There are also photographs of this procedure in the book.

    Finally, there is a procedure called therapeutic mammoplasty for women with cancer who have larger breasts. The cancer can be removed and both breasts made smaller.

    I hope this basic information will be of some help to those of you who may be thinking of any of these procedures. Reading all the details I think that these procedures need a lot of careful thought. All I can say is that none of this would have suited me. After diagnosis and all the scans etc., followed by six months of chemotherapy, and then three weeks of radiotherapy, I would not have been prepared to go through reconstruction, and would not have wanted it at the same time as surgery. When I finished my treatment, I felt that my life was now, to some extent, in my own hands and all I wanted to do was to make my immune system strong and well again and to try as hard as I could to be the healthy energetic woman that I had been before breast cancer entered my life.

    Best wishes
    Sylvia.

  • sam52
    sam52 Member Posts: 431

    Hello Sylvia

    I hope you don't mind me adding my two pennies' worth here.......I just thought I would add that, like you, I did not have reconstruction; there were various reasons for this but I remained open to the idea that I could always have it at a later stage.Nearly 10 years after my unilateral mastectomy, I still do not feel the need for a reconstruction, though I must admit I felt a bit envious when a friend recently had a DIEP recon.

    The reason I am posting is to let you know that I have never sewn pockets into a bra, since I have found two mail-order companies who specialise in mastectomy bras, which come with pockets already sewn in.I have been very pleased with them and have, over the years, bought bras and swim suits from them, by using their catalogues and placing orders over the phone.They do a full refund service and are both very helpful. They are Nicola Jane and Amoena. You can see their websites online and order that way too.

    Love,

    Sam

  • Maria_Malta
    Maria_Malta Member Posts: 667

    Hi Sam,

    Going in for a bmx next week, and not having reconstruction, so thanks for names of mail order companies...they will come in useful!

  • bak94
    bak94 Member Posts: 652

    Thank you for the info. If I have reconstruction my docs have told me I need to wait a year. At first I was devatated by this news, as I wanted immediate reconstruction, but I now realize waiting is the best way to go with my aggressive and locally advanced breast cancer. I am really hoping that I will be ok with not doing reconstruction, as I do not want to go through more surgeries than I have to! I am glad to hear that others are comfortable without reconstruction, that does give me hope. I must admit, though, thinking of reconstruction results makes me feel excited to get it done. I would have to do diep, a pretty invovled surgery, so I am just not sure. I do worry about it hiding a recurrence or having to undo it, that is why the year wait.

  • Suze35
    Suze35 Member Posts: 559

    bak - I didn't have reconstruction, and won't now.  And I am actually very happy with that choice!  I find the right bra with prosthetics to be pretty darn comfortable, and I've even managed to find ways to wear backless/strapless items!  It takes a bit to get used to the look, and some women don't - and that's okay.  But just wanted to let you know that I'm fine with my results, and my DH really doesn't care.  He just likes that I can wear my falsies and have great looking boobs to everyone else, lol!