Calling all triple negative breast cancer patients in the UK
Comments
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Hello Sam52
I am so glad you are posting here, because I value your comments and it is good to get a different perspective from someone who is not TNBC.I was glad to know that you are happy after nearly ten years with your unilateral mastectomy, as I feel the same. I think that there is too much surgery and too many possible problems with reconstruction.
I have heard about the DIEP reconstruction, but I do not like the sound of it. I am going to explain a bit about it later.
Thank you for your input about the mastectomy bras. I did post much earlier on information about Amoena magazine, which I have been receiving ever since I was diagnosed and I did recommend it to the newly diagnosed. It is a good magazine and has an excellent selection of bras, lingerie and swimwear. I do in fact get my bra flaps from Amoena. I do not get my bras from them as I have bought the same bra in M & S for many years and I prefer to keep doing that. It does not take that long to sew in a flap. M & S in Exeter have a great variety of mastectomy bras but they are not to my liking.
The other magazine that I receive regularly is Vita. It is not for clothing but it has very good information about breast cancer.
Pleas keep posting, Sam52, because I think it is good for all us TNBCs to hear from women like you with ER+, PR+ and HER2-. I think this is the most common diagnosis. What do you know about ER+, PR- and HER2- ? My information is that this is treated long term with Tamoxifen and/or Arimidex and that this is more aggressive than the ER+, PR+, HER2- .
I saw on one of the tabloids last week dramatic headlines about a breakthrough with breast cancer treatment with some kind of injection. It involved the use of a drug which was not named, and Herceptin. Since it was being described as one of the biggest breakthroughs in 20 years, I was a bit puzzled. Herceptin, I thought was of use only to the minority of women with HER2+ , so I could not understand how this could be a possible major breakthrough for primary and secondary breast cancers, as well as other cancers. What are your thoughts?
Love
Sylvia0 -
Hello Maria_Malta
I hope you are feeling alright as your bmx approaches. I hope your work is keeping you busy so that it takes your mind off everything. I hope you will find Amoena helpful but do not forget about M & S as well if you have one. Remember what I said about wearing softies in your bra while you recover from your surgery. The lightweight prosthesis that I wear and got on the NHS does come from Amoena. They seem to be one of the major suppliers of prostheses and there are different kinds. You can buy them from Amoena if you want.How is your weather in Malta? How is your garden? I have been putting some plants in the grounds here, to give it a bit of colour during the winter.
Hello bak94. Thank you for your post. I think your doctor probably gave you good advice when he said that you needed to wait a year before reconstruction. It will give you time to recover from everything. Bear in mind that you are going through breast cancer treatment for the second time in nine years. That takes a lot of courage and energy. How are you getting on with the Abraxane and Avastin? Are you expecting to be through your chemotherapy and surgery before Christmas?
I am quite sure that you will be fine without reconstruction and I can understand with all that you have been through that you do not want to go through more surgery than you have to. There must be loads of us not having had it. In fact, I think in the UK on the NHS, that it may not be offered after a certain age. I can understand your reservations. At the moment it is probably better to put reconstruction out of your mind and deal with each stage in turn.
Keep smiling.
Sylvia0 -
Hello Suze35
Thank you for your post and for your positive message about how you are quite happy living without reconstruction. It is good to let everyone know, especially those with reservations about reconstruction, that we can all live comfortably and happily with a prosthesis. It is also good to help those facing mastectomy and lumpectomy that they can get through it and pick up their lives with breasts missing or incomplete. I know that I was terrified at the thought of having a breast removed, but after the surgery I did not feel that affected. I felt more affected by the loss of my hair. You are lucky that your husband is so understanding and my husband is the same. I know that some husbands cannot cope with their wife's breast cancer and some leave them. I find that so awful.How are you feeling?
Best wishes
Sylvia0 -
Hello Christina1961
Reading through some of your posts on other threads, I just wanted to say congratulations on that mile walk you did.I do hope that all is going well with your radiotherapy.
I was interested to know that, because of that ER+ status, along with the rest negative, that you will be having Tamoxifen and then Arimidex.
Have you definitely got on the trial with CMF/Avastin or Halaven? Please let us know how you get on.
Best wishes
Sylvia0 -
Hello everybody
Since I always bear in mind newcomers to this thread, I thought I would just mention briefly what is involved with a DIEP flap.It is possible to reconstruct the breast using fat and skin from the lower abdomen without taking any muscle. The blood vessels are followed through the muscle but the muscle itself is not damaged.
This operation takes much longer and is technically a much more difficult operation.
The name of the blood vessels used are the deep inferior epigastric vessels, so it is often called a DIEP flap for short.
It is possible to take skin and fat from the buttock area to reconstruct the breast. In the UK these are uncommon procedures and are used only in patients who are unsuitable for other types of reconstruction.
I just wanted to say hello to mccrimmon234. I was wondering how you are since you finished chemotherapy and whether you have started the next phase of your treatment.
Best wishes
Sylvia.0 -
Morning Slyvia,
Thanks for thinking of me, unfortunately they delayed my last treatment a few days and I'm sitting in the chair now. Having mixed emotions of being done and no longer getting treatment. I still have to go onto radiation but it's still seems strange. I'm really looking forward to my hair growing back. I hope I can not obsess about it and stare at my hair waiting for it to happen. Hope you and everyone else is doing well.
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Hello mccrimmon324 (Heather)
Thank you for your post. I was sorry to hear that your last treatment was delayed, but glad to know that it is going through today. It is a strange feeling when you finish chemotherapy, but it is also a huge relief as the treatment is long, difficult and wearing. Take advantage of the rest between the end of chemotherapy and the beginning of radiotherapy to relax and build up your immune system. It will not take that long before your hair gets back to normal. My hair fell out in December 2005, after my second chemotherapy treatment. I do not think I was wearing my wig by December 2006. It was very tight, bushy curls at first and was very dark, almost black. It soon went back to dark brown with a natural wave. It is quite interesting watching it grow back.Can you remind us what has happened about surgery? I saw that you have had a lymph node removed but there is no mention of actual breast surgery.
Are you living a fairly normal routine? Do you have a supportive family to help you and do you have any children to take your mind off things? What is your daily routine like in Florida? Are you working through treatment?
Best wishes
Sylvia0 -
Slyvia, I had a lumpectomy in April with a sentinal node biopsy, so hopefully I'm over the hard part now. The very first test they gave me was a Pet/ct scan when I was first diagnosed. I assume because they found the tumor on my first mammogram
Oh, I really hope I don't have to wait a year before I can give up the wig. I've always had long hair but I'll be happy to when I get anything back. My hair is naturally red and pretty straight so I'm anxious to see how it comes back. I'm hopping a little less grey.
As far as my support, I have a wonderful husband who has really stepped up to the plate since all of this crap. We are originally from Philadelphia, PA so sadly we don't really know alot of people down here so I email & talk to my friends that know daily and that has been a big help. Also I use this forum as my support.
My daily routine hasn't changed too much. I don't work full time the week after my treatment, just half days, then the next week is full time, and the following I work until my treatment on Thursdays. Now that I have a break I guess I be back to full time again. It's helps getting out of the house. No kids, just dogs, who we treat like children.
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Hi mccrimmon, so pleased you have finished. I started my rads yesterday so i'll keep you up todate. My hair was growing back like fluff so i took some advice and had it shaved again, didn't much like doing it but hopefully the next growth will be better. Some women here shave it 3 times before they let it grow as normal - drastic
Hi to all
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Hi Bernie, thanks for keeping me updated. I hope rads will be a breeze compared to chemo. I'm really light skinned and just a little worried about how bad Im going to burn.
I can't believe your hairs growing so fast! When was your last treatment? I hope mine grows fast. Hubby has treated me to a nice lunch as a celebration for finishing today. To bad I can't have a margheritta with it.0 -
Congratulations on your last chemo mccrimmon!
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hi mccrimmon - one margheritta wouldn't hurt, would it
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No 1 drink wouldn't hurt but I had just had my treatment and really wasn't up for it. We'll have a do over in a couple of weeks when I'm up and out again. About to give myself my last nuelasta. How are rads going? I'm extremely lglight skinned and starting to worry a bit about getting to burnt.
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Dear Sylvia,
Thanks for your post. Weather here is typically September, sunny a lot of the time, but changeable and for the last three days grey and brooding....we always have one very violent storm with lashing rain to mark the end of summer, but that hasn't happened yet.
Time is passing rather slowly, but I'm keeping myself busy. At work right now I have no teaching duties, just admin which is good, and I'm pretty much my own boss...the head has been really considerate, I'm lucky there. My water retention is going and i'm glad to say I've lost about 3kg in the last 2-3 weeks, all water I think and I can see my ankles again!!! Haven't got back to my normal exercise (walking and yoga) as thought I might as well wait until I''ve recovered from the op. My garden has that end of summer look, and I'm not doing much. Need to trim the vine (very few grapes this year for some reason), and cut back a few shrubs, but nothing much else.
Had my pre-op yesterday and met a breast care nurse as well as a physio, and they gave me lots of good advice about lymphedema..very interesting, I didn't know that it could come at any time after you've had lymph nodes removed! The breast care nurse also recommended a couple of places to get mastectomy bras here, and I looked up the one you mentioned and it's good to know that once I have a size I can order things from the UK.
That's it for today! Thanks for your concern, I really appreciate it. Will keep you posted .. Have a good day.
Maria
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Hi Sylvia! Thank you for inquiring about me. I had number 13 of 33 radiotherapy sessions this morning. My skin is holding up very well. It is starting to get a little pink, but my sternum bone is rather sore. I am fairly thin and do not have any fat over the bones on my chest.
I am still trying to decide between the two trials. I plan to do more research this weekend, and come to a decision next week. The halaven (eribulin), as you know, is a new drug with a novel mechanism of action that showed pretty strong benefit in a trial with metastatic breast cancer patients, and the CMF chemotherapy is an older regimen that some say is effective against triple negative disease. The CMF trial also involves Avastin. The problem with the CMF trial is that it is randomized, so 50% of the patients will not receive the drug. Also, for the CMF trial, I have to wait until around the second week of November to start. I can start the eribulin trial during radiation if I wish - as long as my CT scans/bone scan next week are negative. I am leaning ever so slightly toward the eribulin trial at this point.
To Bernie and mccrimmon, radiation therapy so far has been uneventful. I might be a tiny bit more tired, but I am working long days again so it is hard to judge. The technicians are very nice and the procedure very quick. It's hard to believe I'm already in my third week.
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Hello everyone
I have just been catching up on your postings. I shall be answering them later on today. I am just getting ready to go to the hospital for my six-monthly check-up with my breast cancer surgeon. Even after six years, three months and ten days since diagnosis, I still feel very nervous about check-ups!!
I thought you mighe all be interested in a new thread started by the moderators. If you look up active topics under the triple negative forum, you will find "You Can Survive TNBC". There is an interesting article about how different experts are interprting receptor status. One school of thought is that if you are weakly positive then that should be interpreted as being positive, whereas the other school of thought is that if you are weakly positive then that is negative.
Tell me what your views are.
Do you know who exactly the moderators are?
I was wondering how many of you use the TNBC Foundation and what you think of it?
I shall be posting later.
Best wishes
Sylvia
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Hello Sylvia
Just a quick post to wish you all the best for your appointment with the bc surgeon.May it all be uneventful! I know about the nervous feeling beforehand, though in fact I never continued with the surgeon after my mastectomy; I only saw the oncologist (my choice).I was officially 'discharged' over a year ago, which is also a funny feeling, as now it is a matter of 'hope fpr the best'.It is strange how hospitals in UK differ in their procedure regarding frequency of appointments and length of time of follow-up.
I am going to my father's this weekend, so will read about how things went when I come back.
Love,
Sam
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Hello mccrimmon324 (Heather)
Thank you for your post. Thank you for letting me know about the lumpectomy and the sentinel node biopsy. I definitely think you are over the hardest part.Try not to worry about how long you might have to wear your wig. You will know when you are ready to remove it and walk around without it with short hair. That is what I did. I decided to go into Exeter with my hair short but very curly and bushy. I imagined that everyone must be looking at me, but of course they were not!
I am so glad to know that you have a wonderful husband who has been there for you through all this ordeal. It makes such a difference. I know I could not have got through all this breast cancer treatment without my husband's help. I know from reading posts on some of the threads that not all husbands are supportive. I do understand the terrible shock it must be for family members when a loved one is diagnosed with cancer.
It is also good to have this forum for support and you American ladies really know how to stick together. Do you go to any local support groups?
I can understand that you do not work full time after treatment and I think that is very prudent. Make sure you take advantage of your break to get plenty of rest and build up your immune system. I can understand your feelings about getting out of the house. I am glad you have your dogs and I can understand that you treat them as if they were your children. It seems that quite a few of us with breast cancer have no children. It is considered a risk factor. However, my maternal grandmother had nine children and ended up with breast cancer in the fifties.
It must have been quite a change for you to go from Philadelphia, PA, to Florida. I do not know these parts of the US. I have been to New York and New England. On the television I am watching a documentary called Route 66 and am finding it really interesting. It is done by the Scottish comedian Billy Conolly, who is travelling by motorcycle. He started in Chicago and will end up in Los Angeles. I have seen some amazing sights and have laughed a lot as only Billy Conolly can make you laugh.
Have a good weekend.
Best wishes
Sylvia0 -
Hello BernieEllen
I read your post and was surprised when you said some women shave their hair three times before they let it grow as normal. I do not think that drastic action like that will be doing the roots any good. I had quite longish hair before chemotherapy and just let it fall out naturally. I was never completely bald and I think that is because I did not shave it. I let it grow back normally for quite a time and before going to a hairdressers. I think that is the best thing to do.I hope everything will progress normally through radiotherapy.
Best wishes
Sylvia0 -
Hello Maria_Malta
Thank you for your post.I was glad to know that you are enjoying some sunshine and I do hope, when the storm hits, it is not too violent. Here in the UK, especially in the south, the weather is unusually hot for late September and the Brits are taking advantage of it. We seem to be having hotter days than in July and August.
I can understand how slowly time seems to be passing. Your surgery time will soon be here and then it will be waiting again for radiotherapy.
I was glad to know that the fluid retention appears to be easing and to lose three kilos in two to three weeks is excellent.
As you say, our gardens are on the wane and we have to look forward to spring again!
I was glad to know that you got good advice from your breast care nurse and physio about lymphoedema. I think the secret to avoiding problems is to do all the recommended exercises straight away and regularly. If I were you I would try to avoid any lymphoedema sleeves. I had slight oedema, tried on a sleeve and took it off immediately! I knew that was not for me and my GP told me I had done the right thing. As for the mastectomy bras, I am sure you will find something to suit you.
Have a good weekend. Best wishes.
Sylvia0 -
Hi Sylvia. They don't shave completely bald, just take the fluff off. I did that and it's looking ok coming back but totally white.
Thinking of you with the check up - I hope all is good for you.
Have a great weekend everyone.
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Hello christina1961
Thank you for your post. I was glad to know that you are getting through your radiotherapy sessions and that your skin is holding up well. Just keep it well moisturised in between treatments. I think the sternum bone is probably very sensitive to the radiotherapy. Even now I sometimes get a bit of soreness there. Like you, I do not have much fat over the bones on my chest.I hope your research at the weekend will help you to make a decision. I think if I were you I would go for the eribulin trial, as you know you will be getting the drug.
Have a good weekend.
Sylvia.0 -
Hello sam52
Thank you for your post. I was interested to know that you continued your check ups only with your oncologist and that it was your choice. I suppose, though, that you started with check-ups every three months and then went to every six months. How are you coping now that you have been officially discharged?I agree that hospitals seem to vary with the length of time they will keep you on their books.
I hope you have a good weekend with your father.
Love
Sylvia0 -
Hello everyone
I thought I would post to let you know how I got on at my check up.I was seeing a different doctor this time, because my doctor had left, so I was feeling pretty nervous. It turned out that the new doctor was very nice and was a woman.
I had my physical examination and everything seemed to be going fine. She then said that she thought the area around the nipple of my left breast seemed rather dense. She said that, because she was new, she was not familiar with my breast and asked me if I had felt anything different about it. I said that I had not.
She asked me when I was next due for a mammogram and I told her I had had one in January of this year, so would not be due for another one until January 2013 or perhaps later. She suggested that I have a mammogram and an ultrasound sooner, so I have arranged to go to the hospital on Monday to get it all checked out. She said that she does not think there is anything wrong but that she wants to be on the safe side.
Naturally, this has made me worried and nervous and I am thinking all sorts of things, especially bearing in mind what happened to bak94 and to many others.
If I get bad news after more than six years since diagnosis, I shall just have to see what I can do. I had a physical check up on May 6th this year with my oncologist and she said all was fine. Needless to say, I am not looking forward to Monday.
I have been thinking about all that josephine_, TEK2009, bak94 and suze35 have been going through in particular and tell myself that if they can do it then so can I if I have to.
It has been a strange afternoon since leaving the hospital and I have not had time to think about it in detail because I have been busy dealing with problems of other people's health in the complex where I live. I have decided to say all is OK if anyone here asks me how I got on with my check up. I shall wait to see how I get on on Monday.
I am thinking of you all and wishing you a good weekend.
Sylvia.0 -
Very quick reply, but don't worry until you have to Sylvia!!! I'd trust your instincts, and you haven't noticed anything different in your left breast, and you're probably right. Hope a have a good weekend, and let us all know yr mammogram results. Take care, Maria xxx
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Sylvia,
I'm on my phone and cant post well, but please know my thoughts are with you. I am SURE this is nothing, and bravo on your doctor being so proactive! But you must be scared and stressed, and that just sucks. Please keep us posted! Never before has the phrase "you dont know how strong you can be until you have to" meant so much. We breast cancer survivors (yes!) bring a whole new meaning to that expession! Hugs!0 -
Sylvia, I'm sure your new dr is just wanting to get a baseline mammogram. I think it's great she's being so proactive and I'm sure there is nothing to worry about. Please try to have a stress free weekend. We'll all be thinking of you!
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Thinking of you Sylvia. I'm sure everything will be good for you. Lots of love
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Sylvia, just catching up on some posts. I saw that you went to the doctor and she recommended follow up. I am sorry you are worried about this, but I do think it is great she was being so proactive! Do you know when your follow up? Can you do it soon so you don not have to worry for very long? Don't let my story scare you, remember I am brca 1 positive so my chances are much higher for new cancers. My heart goes out to you as I know you are worried, but I think it will all turn out good as the others have said. Hugs!
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Sylvia, I just re read your post and now know you are going in on Monday. I will be thinking of you. Glad you didn't have to wait a long time for your apointment.
On a lighter note, my hair is kinda coming in even though I am on chemo, but it is about an inch long white and a few dark stubbles. My hair used to be mostly dark with a bit of grey. I have thought of shaving it with a gaurd to get rid of the white fuzzy stuff as it really is of no use to me! I think it even makes my wigs hotter and itchier...
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