Calling all triple negative breast cancer patients in the UK
Comments
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Hello Susie,
I just don't like being angry with frontline staff. They must get an awful lot of flack from patients and relatives and it's not their fault. Does seem to have worked though. My chemotherapy won't be any quicker, I just needed to know that I will get it at some point before the 60 days are up.
The wig lady is coming to see me next week. She wants to see my hair before I have it cut. The real hair wigs seem very expensive. Might have to go for synthetic.
You must be counting the days now. Think of all that spare time you'll have when all this is out of the way. Guess it's that one thought that keeps us all going. Never realised until I had cancer myself just how much time it would take up.
Take care,
Gill X
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Hello, Gill
It didn't take up that much time until I started radiotherapy, with chemo being only every three weeks. Now, I feel as if I live at Hammersmith hospital. Less than ten days to go, then I'll be free to go to the cinema and theatre in the afternoon again. I had an hour's wait today as only one of the machines was working. I was told there was a leak with the other one. 'What? A radiation leak!?!' I said. No, water coming through the ceiling. God bless our Victorian hospitals. Usually, I am seen fairly promptly. Oddly, some people get depressed when treatment finishes, apparently. I suppose you no longer have family, friends and medics dancing attention on you.
My wig is synthetic and people express amazement that it isn't my own hair. I don't think you can really tell the difference these days and I'm not even sure that I would want someone's else's hair on my head.
Susie x
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Hello Susie,
Much as I love Victorian hospitals for the architecture, they all need so much money spending on them.Water leaking onto expensive equipment and presumably patients sometimes!
I have a friend with triple negative and she found chemotherapy very difficult to cope with, but by the time she'd come out the other side and finished radiotherapy too, she experienced a real sense of loss and rejection for a few weeks. Wasn't in the best of moods either.
Good to know your wig was synthetic - I remember you saying how much you loved it. The wig lady said that hardly anyone buys real hair now as the synthetic wigs looked so good and didn't need restyling after each wear. Don't think I could be bothered with that.
Good luck with the last ten.Fingers crossed that radiology isn't completely submerged.
Gill X
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Susie and Gill
I was also told that synthetic wigs are by far superior, they are less expensive, hold up better and hold a style better. Makes me wonder what they do with all the hair that young girls and women donate to causes!
Susie, sorry about your leaky radiation experience, it would be rather off-putting to be in a room with state of the art equipment and a bucket under a leak!
Rosie, don't be too mad at yourself about losing your cool with the staff. You have an excuse and they understand, I'm sure.
Mary
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Hi, Sylvia
I am still here, have had houseguests and they are here for one more day. This morning all are sleeping in and I can slip on here and say hello. We have finally settled into a nicer weather pattern, it feels like fall at last, cool and bright.
I will talk to you again soon, love, Mary
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Hi, Lou
How nice to see you back here, glad it is just to say hi and offer advice. I hope your son and husband are doing great too, are you still working at the resort hotel?
Something I realized after losing hair was that it is ALL hair: eyebrows, eyelashes etc. The models in magazines that are bald still have dramatic eyelashes and brows, it makes a difference when they go away!
Love, Mary
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Hi Gill
Another issue with real hair wigs - aside from the price tag - is they require all the care and treatment normal hair does I.e. Styling. Synthetic wigs will hold their style. No more hat hair! I too have a wig that most people assume is my own hair. You get up and pop it on. At the most I might fluff it one way or the other or pop a band it hat on but no fussing with product, no blow drying, no curling / straightening.
Yes some people lose the lot. I lost most of my eyebrows and fair few eye lashes, my nasal hair, underarms, legs and my lady garden became very sparse! First thing to come back was the hair on my legs (go figure, how cruel!!). I have had my first wax (legs) and trim (head) around my hairline around ears and nape. It basically very dark fluff. My hairdresser even put in some colour to give some body. Still a long way from a cut though. I finished IV chemo in June and reckon I be good to go a la natural by mid to late November.0 -
Hello from Canada ! I was diagnosed with triple negative at 48 , I am 53 now so I just passed the “5 year" mark.
I don't have official stats on my diagnosis but I do know that it was 4 cm left breast , suspicious spot on right . I had bilateral mastectomy, 8 chemo treatments every 3 weeks and 6 weeks of radiation daily plus 3 boosters ! I did have 16 lymph nodes removed on left side with the sentinel being positive and 6 removed in the right side , no involvement there . Thankfully
I had a latissimus flap done 1 1/2 years ago and I am irregular in shape and actually started losing my hair after that surgery. It still hasn't come back ! I am considering removing the implants and having a diep flap surgery ! I did not have enough tissue at the time , I do now
I would say I am doing well , certainly there have been many emotional hurdles to get through.
It is wonderful to connect with others with triple negative, at the time of diagnosis it seems like you can be very alone in this BC
Great to read yours posts & thanks for sharing
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Hello everyone,
My chemotherapy is beginning next Thursday at 9.30. Apparently. I'm considered an urgent case. Don't know if that's just to get me through the system quickly before my temper gets the better of me again or because I am actually urgent.I'm so excited to be able to get on with it. No cold cap is available at such short notice, but that doesn't worry me at all.
Mary and Helenlouise, I'd forgotten all about eyebrows and lashes. My Oncologist also told me about nails lifting off. I'm going to look so attractive, especially when the leg hair comes back first. That's ridiculously unfair. Agree with you Mary, models with no hair always have plenty of unfeasible eyelashes, not to mention proper eyebrows and tiny little pinned back ears. Hardly notice the lack of hair.
Thanks to everyone here, I'm fully converted to synthetic wigs. Apart from all the time they save, they'll be much cooler and leave the bank balance healthier.
Sylvia, like most others with aggressive cancers, I'm now having FEC-T at three weekly intervals, rather than a lower dose every week. The side effects would have been so much less with weekly doses, but perhaps not sufficiently aggressive.
Take care everyone,
Gill X
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Hello Cheryl,
Completely agree about all the emotional hurdles we have to negotiate. This thread has really helped me to keep a sense of perspective now that I know there are others going through the experience and coming out the other side. Like you, I'd begun to feel very isolated after diagnosis, as almost everyone else I knew with breast cancer was oestrogen + and had Tamoxifen to help keep it at bay after the initial treatment. Now, I'm quite happy that once chemotherapy is over I won't have to take anything else.
I'm sorry that your implants aren't what you'd hoped for. There's some information somewhere on this site from women who've had diep flap surgery and it's always useful to get as many viewpoints as possible before taking the plunge. I had a simple left sided mastectomy and as I had quite a small bust, I look OK without any reconstruction. It really depends on how you feel about it and how much it impacts on daily life. Good luck with whatever you decide.
Gill X
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Thank you for replying !
It is difficult to sift through all of the options and make a decision, you never really know which one is the right one ! I think I will do as much reading as possible before moving forward
There really is a lot of positive outcomes from triple negative isn’t there! At first it feels like doom and gloom but as time passes and you read more stories it is very encouraging!
Have a great day !
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Hello Mary,
Thank you for your latest post. I can understand how busy you get if you have people staying with you.
We have had some very mild and sunny weather here and the shrubs all seem to be a bit confused as to whether they should bloom or go to sleep! We did get a lot of rain last weekend and the lawns are looking lovely here.
Have you any special plans for the autumn?
Do you have any medical visits?
Sending you best wishes.
Love.
Sylvia xxxx
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Hello CherylMk,
Welcome to the thread that I started here back in September 2010. It was nice to hear from another person from Canada. Which part of Canada are you from? We already have three other women from Canada, adagio from Vancouver BC, 53Nancy from Manitoba, and Moth who is also, I think, from Vancouver.
Congratulations on passing your five year mark.
Thank you for giving us details about your cancer journey. Have you had any long term side effects, such as peripheral neuropathy in the feet or hands, lymphoedema or anything else?
I was interested to know that you started losing your hair after surgery for a latissimus flap. Were you given any explanation for this?
I was surprised to read that your hair still has not come back. I am assuming that you lost your hair through chemotherapy and that it then grew back. It all seems very odd. I do know that hair loss can be caused by an underactive thyroid.
It is good to know that you are doing well. We can all understand here the emotional hurdles that you have had to get through. You have got through them and are now getting on with your life.
It is true that you can feel alone with a diagnosis of triple negative receptor status. I felt the same but all the posts on TNBC show us that we are not alone. Tomorrow I shall mark 13 years and 4 months since diagnosis.
I am glad you have found this thread and that you are finding it useful.
I spent nearly17 years in Canada, 1977 to 1993. My husband and I were in Montreal, Quebec, Ottawa, Ontario and London, Ontario. It was a good experience and found Canadians very friendly.
Wishing you the very best.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. I shall be thinking of you next Thursday October 25th. I do hope all goes well. Make sure you have your wig ready. I found that my hair started to fall out after the second infusion, but I never lost all of it. I had a synthetic wig that I was able to get on the NHS and got it in the wig section of House of Fraser. It was called Raquel. I also got, at the same time, some special shampoo and conditioner at the wig place in order to keep it regularly cleaned. I also got a stand to put it on when I was not wearing it and also to put it on after I had washed it. I got a special brush with it as well, so that I could brush it and keep it styled as I wanted. It looked real and friends here said to me on a couple of occasions that I was lucky not to have lost my hair!!
As for eyebrows and eyelashes, they disappeared when I was having docetaxel (Taxotere). They grew back but are much finer than they were. My underarm hair has never grown back on either arm.
You should ask about getting your wig on the NHS and remember that it does not have to be an NHS wig.
Thank you for letting me know that you are having your treatment every three weeks. In the end, you will have the same amount whatever the time scale is. I was told that the dose you have each time is worked out according to your weight and height. I definitely had to give these details and that information came from the oncologist. I found no problem with every three weeks. It gives your body time to recover. Remember to drink plenty of water throughout your treatment. It is so important to keep hydrated. Rest as much as you need and keep looking forward with a positive attitude. Eat healthily, try to live as normally as possible and keep away from any situations where you are likely to pick up infections. I was told to stay away from crowded places and public transport. I was told back in 2005 to get a flu injection and a once in a lifetime pneumonia injection. As for food, I was told to stay away from raw food and seafood. It would be interesting to know what you are told.
You will have regular blood tests before your chemotherapy day and if these are all in order, you will be able to proceed with the next infusion.
I shall be interested to know if you are told about Neupogen injections to try to keep your white blood cells up. This seems to be standard now.
I was also told to get any dental work done before chemotherapy started, because you cannot have dental work done during chemotherapy, again because of infection. A friend of mine did get dental work done and ended up in hospital.
That is about all for now. We shall all be thinking of you through your chemotherapy journey.
Love.
Sylvia xxxx
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Hello everyone,
It is Friday again and I just wanted to thank you all for your great contribution to the thread this week.
Special hellos to Val and Monica. I hope all is well with you and that we shall hear from you soon.
To Kath in Australia, I hope all is going well with your studies.
To Susie in the UK, I hope all continues well with your radiotherapy. I have noticed that you enjoy the theatre. Is there anything in particular that you enjoy?
Best wishes to all.
Sylvia xxxx
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Hello Sylvia and thank you for welcoming me !
I live in Sarnia , which is about 100 km Sw of London, I frequent London often for shopping etc.
I have some neuropathy in my left hand , not bad though and some numbness under left auxiliary area!
Very little lymphedema also in my left arm , most people don’t notice it but me.
I wish I had a definitive answer for my hair loss, what I know is within two months of the latissimus surgery I started to notice my hair getting thinner but mostly at the front, I assumed it was just normal hair loss. It continued though and it is quit noticeable now , I have gone to see a hair transplant Dr. about it.
I have read about other women who also have experienced the same thing. It seems to relate to the Expanders and implant specifically. So I have decided to remove them ( really not happy with the outcome anyway) I have an appointment with my PS in a couple of weeks and we will discuss the possibility of a diep flap surgery. Hopefully I can have it
I did rule out other possibilities including thyroid etc.
It would be nice to reconstruct because I find my posture is better than it was prior to reconstruction. I was overly sensitive in my chest area too and I have youngish children and I was always guarded when they would come too close. I know I started quite late lol but they are wonderful girls and have been amazing throughout this journey.
It’s nice to hear you enjoyed living in Canada 🇨🇦 it is a wonderfully blessed country.
Wow 13 years is a great length of time! Do you have any long term side effects from your treatment?
Nice talking to you !
Cheryl
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Hello Cheryl,
Thank you for your post. I was delighted to know that you are in Sarnia, which is not that far from London, Ontario and I was interested to know that you often go to London, Ontario for shopping. We were living not far from the Westmount Mall on Wonderland Road and used to go into town often. I used to go into town to get my hair done at Eaton's Hair Salon.
I have peripheral neuropathy in my feet, but it does not bother me that much. My oncologist told me that it was from the taxane drug, docetaxel (Taxotere) that I had during chemotherapy. I was glad to know that your neuropathy is not too bad.
As for lymphoedema, I have a little in my right arm but it is not that bad and there is not much difference between that arm and the left one, but I am told that we all have to be wary and take care not to overdo things with the affected arm and avoid getting stung, as this can become dire.
I shall try to do a bit of research to find out what could be the cause of your hairloss. Let us know what the hair transplant doctor says.
You might like to read a book entitled The Complete Guide to Breast Cancer by Professor Trisha Greenhalgh and Dr Liz O'Riordan, both of whom are breast cancer survivors. It is new this year. I have just looked back at it and saw that chapter 8 is all about breast reconstruction. There are lots of diagrams to explain the procedures. There is a lot of information about reconstruction and they do go into what the complications of flap reconstruction are.
I have no experience of reconstruction as I did not contemplate it and it was not offered. My breast cancer surgeon just told me that it would make the operation a lot longer.
You might also want to look at the All Topics section of bc.org. I think the Moderators have just posted something about problems with silicone implants. I need to go back and look at it in more detail.
There may be someone viewing who has had experience with the latissimus flap and someone else with a diep flap surgery.
I have to stop now, but I shall continue later.
Love.
Sylvia xxxx
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Hello Cheryl,
You might like to look at this link:
https://www.breastcancer.org/research-news/silicone-implants-linked-to-complications
It is right up-to-date.
Love.
Sylvia xxxx
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Hello Sylvia !
You are a wealth of information, thank you for the for the link and the book recommendations .
When I have some time I will do some reading, I did just happen to download a book by Dr.Patricia Prijatel, it is called Surviving Triple Negative Breast Cancer , I am looking forward to reading it. She was diagnosed with it 5 years ago. This is a great site to connect with people who have had similar experiences, it is very helpful .
Your are so kind ! Yes I too loved Eatons , so unfortunate that it is no longer open , the good department stores all seem to be closing.
I know the area you once lived near , I take Wonderland road often. London has changed a great deal over the past 10-15 years , it’s much busier these days , but it seems everywhere is!
Nice chatting again
Take care
Cheryl
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hi Sylvia
I am alone in my house again, after 8 days it seems very quiet. It was nice to have people staying here, it's been a while.
I did have a mammogram today, Monday I'm having a blood draw for labs, and Tuesday the 19th will be my 6-month visit with oncologist. To be clear, MO did not order labs, my gyno did and I forgot about it so I received a letter about it with the orders.
I found myself feeling nervous about the mammo, I guess I do every year. And I always remember that I found the tumor I had, the mammo I had 2 months before that didn't see anything there.
Talk to you later, love, Mary
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Hello, Sylvia,
Yes, I love the theatre. On Thursday I went to see The Height of the Storm, starring Eileen Atkins and Jonathan Pryce, with my Meetup Theatre group and we all agreed that it was excellent. This afternoon I'm off to the wonderful new Bridge Theatre at Tower Bridge to see the new Martin McDonagh, A Very Very Very Dark Matter, which I am really looking forward to. I mostly avoid West End Theatre. I love the Royal Court and The Hampstead Theatre and more obscure fringe theatres such as the Bush and the Kiln. I like to see new plays although I'll occasionally go to see an old favourite., Tuesday afternoon I shall be at the National Theatre and got my treatment moved to the morning that day specially.
Only boosters to go now. I saw the nurse yesterday and she was happy with my well being. All the staff at Radiotherapy are great and we now have a good laugh and joke. Many familiar faces each day now. All the breast patients are pretty gung-ho but there are a couple of women with brain cancer who are in a bad way.
Have a great weekend, everyone.
Susie
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Sylvia,
This morning I got my mammogram results from the scan yesterday. It showed no malignancies, but as usual, said my breast tissue is very dense and an annual MRI would be of benefit. I had one of those in April and will probably have another one next April.
Mary
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Hi, CherylMk
It is nice to see you here and to see that you are over 5 years out from diagnosis, that is great! Sorry you are having problems with your recon. I did not have reconstruction; my surgeon suggested that I have double mastectomy with reconstruction but at the time my husband was very ill and I wanted the shortest recovery period possible. So I opted for just the right breast removed, no recon. Now I wear a prosthetic in my bra when I want to dress nicely and go out, otherwise here at home I am "au naturel". Being small-breasted anyway it probably doesn't matter much. Sometimes I do wish I had had the double mastectomy, just because then I wouldn't have to wonder about my remaining breast with its' very dense tissue that makes it hard for scans to read.
Odd about your hair loss, I can't see either why breast recon would cause that, but I hope you can find out for sure. Perhaps it is some nutrient deficiency? Just guessing here.
I see that Sylvia has suggested a book, and you have just gotten a book of your own; I have not read either of them but both are probably very helpful.
I hope you find answers to your questions, and solutions to problems. There are other threads relating to the questions you have, but we like having you here too!
Talk to you again soon,
Mary
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Hello all,
I was wondering if anyone had any advice about fingernails. I lost four from the taxane and, I think, three toenails, though I'm not bothered about them. The rest feel simultaneously brittle and soft, if that makes any sense. Where the lost ones are trying to regrow, they are much the same. Does anyone have any good ideas? Is there any point in painting nail-hardener on?
Any tips gratefully received.
Susie
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Hello everyone. Just doing a quick stop-in to say hello and how are you? This past month has really flown while we have been busy "putting the garden, flowerbeds and outdoor furniture to bed for the winter". Our cold, near freezing temperatures started in the last week in September and it was so cold and windy most days, that things got left undone. We have finally had two nice days in a row - around 60F - and hubby is out getting the last of the tulip bulbs planted while I am preparing for company tomorrow.. We did about half yesterday and hope that they will put in an appearance in the spring. This past winter was so cold, with so little snow, and then a dry summer, that we really didn't have much by way of flowers this year at all. I hope you are all doing well and will be back on again when things settle down.
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Hello Sylvia,
Thank you for your very informative post. My information session with the breast care nurse was probably a bit shorter than usual, as following my Oncology consultation, I was quickly booked in for blood tests and an echocardiogram to take place that morning. The hospital is moving very quickly on this one now - I still blush at my overbearing behaviour, not my finest hour.
I didn't know about raw foods, so I suppose salads are out. I never eat seafood as I've always been concerned about contamination. I agree that crowded places are now no go areas for me. If only people would keep their colds, sore throats etc away from the rest of us.
Once I'd discovered just how much care a real hair wig needed, I was converted to synthetic. I'm going to the Big C centre at the hospital this Tuesday for my free wig. That would be a good time for me to buy a stand and all the other accessories as the Big C doesn't make a profit from sales. It seems strange to visit them as a patient now as I've always been a keen supporter. It's such a worthwhile charity and both patients and their relatives at the local hospice have always said that the Big C has been such a strong support to them. As soon as possible after my NHS wig is sorted out, I'm arranging for a better quality wig.
Looking forward to Thursday, though not the side effects. The sooner the treatment is over, the sooner I can look forward again. Though I doubt if many of us here will ever attend for scans or mammograms without some element of fear.
I had my flu injection three weeks ago, but need to ask about a pneumonia injection, thank you for reminding me.
Talk later.
Love,
Gill X
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Hello Cheryl,
Thank you for your latest post. I do hope you will find the link helpful and I certainly recommend that latest book.
I do know the book by Dr Patricia Prijatel and I did read it quite some years ago. The latest book that I recommend, the Complete Guide to Breast Cancer – How to feel empowered and take control, by Professor Tricia Greenhalgh and Dr Liz O'Riordan – expert doctors and breast cancer survivors is well worth having as a reference book. It is always wise to look at the most recent books.
I am so glad to know that you find our thread helpful.
I was so sorry to read that Eatons no longer existed. I suppose Canada has gone the way of the UK where there have been huge changes in stores. What has replaced Eatons? I know that Sears has gone in the US and I am now wondering what has happened in Canada to Simpsons and the Bay stores.
I was interested to know that you know the area near to where my husband and I used to live. We were in London, Ontario for four years and before that nine years in Ottawa and four in Montreal. We used to love the park in London, Ontario and always remember the Canadian geese and how they used to walk military style, so orderly, along the grass, holding up the traffic!
Thinking of you.
Love.
Sylvia xxxx
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Hello Mary, my faithful friend and poster,
Thank you for your post. It must seem very strange to be alone again after having guests for eight days. I keep trying to imagine your local setting and whether you have some houses nearby where you can pop across for a coffee or tea.
I was interested to read about your medical routine. Will this change after five years? This seems to be the routine here, although my oncologist kept me for check ups for ten years, but I was discharged from the breast cancer consultant after five years. I think you probably get more medical check ups than we do here under the NHS. Unless you have a specific illness or condition, I do not think anyone will call you in here, but I think a patient can ask to have blood tests etc. but no one will chase you to have them. I have really checked myself out from the medical establishment here, as they only want to fill you with pills.
I have not had a mammogram since I was discharged from the oncologist in 2015. She told me that I could go for a mass-screening when the mobile unit came to Exmouth, but that I would not be called in to the hospital clinic. As you say, we get nervous about these visits and I feel I just want to be left now.
How are you feeling these days? Do you have any plans for the autumn? I can hardly believe that there are just ten weeks left to the end of this year. With all that is going on I wonder whether the planet will survive the mad antics of our politicians.
Thinking of you.
Love.
Sylvia xxxx
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Hello Susie,
I did some research about damaged nails, nothing much came out of it, but some women recommend breaking open a vitamin E capsule and massaging the oil into the cuticle. It wouldn't help much with the already damaged nails/regrowth, but might work later on. It would increase the blood flow at the very least. Annoying that even new growth looks damaged for now. Apparently good fingerails take at least six months to reappears. I'm going to ice mine and hope for the best.
Gill X
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Hello Susie,
Thank you for your latest post. I was very interested in what you said about your Meet-up Theatre group. It sounds like an enjoyable group to which to belong.
It sounds as though this is a very enjoyable way to get through your treatment.
Thinking of you and sending best wishes.
Sylvia xxxx
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