Calling all triple negative breast cancer patients in the UK
Comments
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Awww thank you susaninnicking!!!! I have the longest legs on the planet so my kick will be swift and harsh :-D I'm a 6ft short bodied gal! (Bizzarely I was told that being tall and slim was a risk factor)
Ladies, all those who replied re taxanes, I'm going for my induction tomorrow so will be asking some questions. Thank you for replying.
Sylvia... my mri scan is for my breasts. Two mammograms failed to show my tumour and only my left breast was scanned via ultrasound (when the tumour was found) so as you can imagine, I don't have complete confidence that my right breast is clear. This mri was not offered routinely, I demanded it... :-D
Take care... xxx
Sandra
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Sylvia... thinking of you at this time. I'm sure you have some amazingly happy memories!!! Xx
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big leggy - if the mammogram failed to show your tumour - how did you discover it? Perhaps yaounde mentioned before , but somehow have missed it.0 -
Thank you for that Sylvia just reading through helps remind me how only I can decide how I deal with this financial set back. It is how I can still appreciate things that dont involve money, although I would love to have more hugs from Oskar. I spoke to him last night and just the sound of his voice and laughter makes me feel so happy.
I suppose the reason that the removal of the medical card has affected me so much is that it is concern for the future and how much of our money is and now more will go towards medical costs and the fact that cancer seems to be dismissed as something you fully recover from or just go away and die quietly. Yes the women on hormone therapy have to pay for their drugs unless they have a medical card and under the present system many will have theirs taken away. 144 a month is the cost of a drug scheme card, that is per family but no reduction for a sole claimant. I also am not sure how much my pain clinic and treatment will cost me. There is no one or no group that will speak on behalf of cancer patients and to be honest if you dont have private health insurance you are unlikely to be able to access and new or revolutionary treatment. I know of at least two women that were written off but thankfully have insurance and are being treated in private hospitals.
Sorry about the negativity but writing this makes me realise..... what am I doing about it! Staying quiet only allows this to continue.
It is amazing though that yesterday I had to take Luna to the vet and payed out 50 euros without hesitation. She has a sore eye and she may need to go to an animal opthalmist. I never knew there was such a thing.
Today we are having a wooden floor put down and I will go the centre to keep out of the way.I am glad that I bought it with some of my final payment before knowing about the medical card . We are at the stage now where we are both retired , have our final payments and need various things doing about the house. I suppose that in itself means that we are looking to the future!
Thanks once again for your posts, they always seem to come just when needed..... be it advice or support.
Good luck to those starting treatment, it is good to get started and the feeling that something is going after that cancer.0 -
Morning ladies
Lindsay... I feel heart sorry for you! We in the UK take the NHS for granted and often moan about inadequacies. We forget (myself included) how lucky we actually are to be treated by the best health care service in the world. Financial worries and pressures are the last thing you need at this stage of your treatment as you need to be able to focus on life as stress free as possible. Hugs... xx
Adagio... I had pain in my breast for about six months. I've had two benign tumours removed in the past so was sent for mammogram immediately. The tumour to the breast specialist felt like a deformity on my rib and that is in fact what he thought it was. I however, know my body and along with a strong gut feeling, knew it wasn't right. When the two mammograms (six months apart) were negative I asked for a scan. He originally said no and that it was unnecessary but eventually caved when I went on and on about it. He laughingly said "I'm sending you for this scan to shut you up and I don't expect to see you back here for a year...". I think he was more shocked than I when I appeared in his next clinic with a positive diagnosis. To be fair, it's located where a breast cancer is not normally found. It's beautifully oval and smooth in shape and was painful. All indicators that it would not be cancer. :-D
I have to go now as I have an appointment with the sheep shearer to get shorn, lol! My long blond hair becomes a pixie cut today... :-(
Take care... xx
Sandra
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Hi Sandra,
Thanks for that and good luck with the hair. I also had long but dark hair prior to the cancer and even my nurse commented on it the day that I started chemo. I too had a pixie cut before my hair started to come out and I am sure that it did help me come to terms with the hair loss because I loved the short hair style. It did help that my hairdresser had breast cancer several years before too.
My friend at the support centre had a long blond bob and even had 2 wigs that exact style. Some months after our treatment ended and our hair had grown back mine curly and grey we and another woman sat talking around the kitchen table at the support centre and decided to have short hair cuts and to dye our hair. We used natural dyes and were the 3 guineau pigs for a young hairdresser who is now our resident one for the centre.
We all swore that we would never have long hair again and my friend has kept her pixie cut and she looks 10 years younger.
I never wore my wig and as my treatment was from September to March there were many hats available and I had a great selection of scarves and skull caps that I twisted into different shapes. In fact someone that I met recently told me that they hadnt realised what blue eyes and cheekbones I had until they saw me in the caps.Also I became a great fan of dangly earrings.
Thinking of you0 -
Hello big_leggy (Sandra)
Thank you for your posts and for your explanation about the MRI. Good for you for demanding it. I have read so many times on these threads of women having mammograms, being given the all clear and then being diagnosed with breast cancer. The opposite also happens with mammograms.
I was very interested to know that you have very long legs. How long are they? I am 5 ft 10 ins and I thought my legs were long. I need trouser leg length of 32½ inches and the longest I have seen is 31. I was very lucky to have found and become friends with a bespoke tailor who made me made to measure trousers at a very reasonable price. Unfortunately he died in 2006 and I have not bought any trousers since. They were very good quality, made from 50% wool, 50% polyester and he made then high waisted as I like them. Where do you buy your trousers?
I remember reading all about how tall slim people were at a greater risk of developing breast cancer. It was something to do with growth hormones. We have to remember that risk factors are just that. It does not mean they caused the cancer. I have other risk factors as well, such as late menopause and not having had any children. Apparently having your periods early and having a first child after 30 are also risk factors.
Thank you for your kind words. October is not my favourite month. Today was the anniversary, three years, of an uncle to whom I was very close. He died of throat cancer, having refused all treatment and it was horrendous to watch him die. I think cancers of the throat and mouth are among the worst you can possibly have.
We shall all be thinking of you tomorrow.
Fond thoughts.
Sylvia xxxx0 -
Hello linali (Lindsay)
Thank you for your post. I do hope you will be able to resolve the financial situation. Fight for your rights. No health care system should be based on having to pay money up front. Good health care should be a human right. In the meantime, appreciate gentle walks and watch nature. There are some beautiful colours at this time of year. Get as many hugs fro Oskar as you can.
There seems to be something very unfair about the way your health system operates. The care you get should not be based on your ability to pay. Things are not perfect with the NHS and NICE (the National Institute for Clinical Excellence) decides which drugs will be available on the NHS. A lot of this is based on whether they think a drug is cost effective. What price a human life??? I think more and more drugs will not be available on the NHS.
I was not surprised about how much you had to pay to the vet. Vets are very expensive here.
Since Raymond and I are also living in retirement, I can understand what it is like to be living on a limited income and the worry it is to keep everything maintained in the home.
I am so glad that my posts help you. Come and talk here as often as you like. It is not good to bottle things up.
Take care.
Sylvia xxxx0 -
Hello linali
I do not know why I have formatting commands on the post to you. I cannot seem to delete it.
Thinking of you.
Sylvia xxxx0 -
big_leggy - my cancer started as pain also. In fact I first went to my doctor in November 2011 with breast pain - got thouroughly checked and was assured there was no cancer. Then it was July 2012 when I discovered the lump myself - then I had to wait a month for a diagnostic mammo and ultrasound - and they found the tumour which was invasive but fortunately it had only grown to 2.5cm - so it was a stage 2.
I am wondering how many other TNBC had breast pain as their very first indicator that all was not well - just curious.0 -
Hi ladies
Well.... hair now lopped off and I can't believe how different I look. I looked in the mirror and exclaimed "OMG, I look like my mother! " with a few profanities thrown in lol! :-D
Adagio... Just goes to show we instinctively know our own bodies. Let's face it, look at the amount of woman who instantly know they're pregnant before a pregnancy test can detect it. I know I did!
Sylvia... I'm 6ft exactly (as measured at the hospital today). I'm 10 stone and have an inside leg of 38" so as you can imagine, a nightmare for clothes shopping. I buy most of my clothes from Long Tall Sally.
My daughter Ayvae Is bathed, fed and sleepy so I'm about to pour myself a huge glass of wine (oncologist said it was a good idea and who am I to argue) and chill out before it all kicks off tomorrow. Change that..... I may just take the bottle with a straw :-D :-D Cheers girls...
Take care xx
Sandra
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Hello Sandra
Thank you for your post and good luck today.
I was AMAZED that you have 38 inch legs and I can just imagine the trouble you have with trousers. We do have a Long Tall Sally in Exeter but I have never had much luck there. I used to buy trousers in the Tall Girl Shop for most of the 17 years that I lived in Canada. I think the two are connected. I think I shall have another look next time I am in Exeter.
When I lived in France it was so easy with trousers, because they were sold with no hems done. They used to put the hems in when you bought them. I find the quality of clothes has gone right downhill.
I love the name of your little girl. How old is she?
I do hope you are getting lots of support from friends and family.
Fond thoughts.
Sylvia xxxx0 -
Hi All
Just popped in for an update. I'm feeling a lot better today, a week on from chemo. I think I'm over the worst side effects now. Today I felt a lot of energy and had a big appetite, which I am trying to restrain as I don't want to be one of those who gains weight on chemo. I have been going for daily half hour walks so this should help.
One thing I noticed today is that my scalp feels itchy. I assume this is a sign that hair loss is imminent.
Regards to all,
Anne x0 -
Hi Anne
I was thinking about you today. I'm pleased you're feeling good now! :-D
I started my chemo today and all went well though I've been feeling a bit spaced out since but not unwell. My throat however, is very dry! Been drinking tons!
How did your first week go and what side effects (if any) did you experience?
I think you're right that your head is telling you to brace yourself. Just remember bald can be beautiful... xx
Sandra
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...... or it could be nits, lol!!!
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BALD IS BEAUTIFUL and the sign of warriors!
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Susan, I wish there was a like button for your comment... :-D xxx
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Hi Sandra
You do make me laugh re the nits... Funny you should mention that since my daughter came home with a letter about an outbreak in her year at school. I just laughed as there would be a certain irony in getting nits just before my hair fell out! But she no sign of nits, and I haven't been near the place since July, so I doubt it. You did make me laugh though.
My side effects have been very much like morning sickness, a general feeling of being unwell but not really ill. In other words, mild nausea but no sickness, some trouble sleeping, a bit of trouble passing water the first 24 hours, dry sandpaper mouth, taste changes and a feeling of tiredness or heaviness which makes it difficult to do much physically without wanting to collapse on the settee. Also I had very bad indigestion a couple of times but perhaps because I had eaten too much. My appetite is still there but I am finding I enjoy some things less than I did, like tea, and have strange cravings, like salt!
I felt very drowsy the first evening of my FEC, or as you say 'spaced out,' but slept well that night except for a three hour break between 2-5 that first night. Since then I have just woken a few times in the night but got straight back to sleep so felt rested next day. I have also had occasional flu-like feelings, like aching limbs, but not severe. My head has also felt like someone is squeezing it from the inside (weird, hu?). I have been lucky to have the anti nausea drug, Emend, which has meant I haven't had any serious problems with nausea and haven't actually been sick at all.
All these side effects sound like a lot but it has all been spasmodic and non of it severe. I will be happy if this is as bad as it gets. I feel really good today.
Hope your continued feeling of well being continues,
Anne x0 -
Thanks Anne
I always aim to make people smile! My daughter actually came home with new friends last week and as i had long hair i couldn't help but laugh at the irony also. Thankfully i was clear but all of my radioactive treatment they probably bolted rapido!.... or could have mutated into superheroes, lol!
It will be great to have you as a chemo buddy as we can compare notes and strategies. You take care this week... xx
Sandra
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Hi Sandra
It would be great to be buddies on here. It's like you are following in my footsteps!
I also have a great group going on the Breast Cancer Care Website, under the discussion board 'Going through Treatment', Chemotherapy Monthly Threads. The thread is called October Optimists 2013 and women going through their first treatments this month are joining together. You might like to join. We are having fun comparing notes, offering advice etc. But bear in mind they are not all triple negative, like us. But many are going through FEC like we are.
Kind Regards,
Anne x0 -
Hello Anne
I think an itchy scalp may be quite common when going through chemotherapy. I remember I had dry crusts forming on my scalp once my hair had gone. I was advised to wash my scalp with Johnson's Baby shampoo when having a shower. In addition, I chose to massage my scalp gently with pure avocado oil before shampooing. It worked wonders. I used the avocado oil that is sold for cooking and salads, so it is pure avocado. It is is the only oil that mixes with water. I have used it off and on over the years on my face to keep my skin in good condition. I just put a little on and wash it is with water. It is the best skin treatment that I know.
I was glad to know you are not doing so badly and that there is nothing major. Keep up the good work.
Thinking of you.
Sylvia xxxx0 -
Hello Sandra
I was glad to know that all went well with your first treatment. That is one behind you and now you know what to expect. I am sure you and Anne are going to get through this smoothly, especially as you both have a good sense of humour.
The most important thing is to keep hydrated. Water and herbal teas are ideal. The Hospiscare nurses that I had to my home during treatment told me to eat plenty of canned pineapple in its own juice to refresh a dry mouth. It did work. I found juiced avocados also worked well. As I have said before, Biotene products, toothpaste and mouthwash, also work wonders, as does a little bicarbonate of soda in warm water as a mouthwash.
If you get any tips about what to take during chemotherapy please post.
Take care of yourself and get plenty of rest.
Sylvia xxxx0 -
adagio
My first symptom was also pain it seems to be a lot more common with TNBC
Jackpot0 -
Hi,
Yes I did have a small lump but it was the pain that made me go to the doc thank god.
As for the FEC chemo it was my throat and mouth that became very sore. Even to have some glacier fruits to suck whist doing the chemo.
My taste buds changed and I never took salt before the cancer but did crave Pringles and spicy food whilst on chemo.
I did get used to my body's pattern in the 3 week cycle and adapted to doing things when I knew that I had energy ...for me the three days after chemo. That was down to the steroids that they put into the drip and give you for after. I took all the anti nausea meds as I can tolerate pain but hate to feel sick.
The morning here in Ireland isn't as bad as forecast but there are storms on the way. Our power goes off very often in bad weather and so I had better check our candle supply.
Just wondering does anyone know of a good website for rugs, one that delivers internationally. The carpet shops here don't stock many.
I have an oak floor and a heavy brown leather suite so I would like something with a bit of blue or greys as I have a stone chimney breast and floral wouldnt be good.
Thanks and wishing everyone a good weekend.0 -
Hello everyone,
Just popping in to wish everyone a good weekend and to remind you to relax and do what makes you most happy. Do not forget to put your clocks back!
To Gill, Anne and Sandra, look after yourselves. I hope you are all not feeling too bad from your chemotherapy sessions.
To Susan, are you nearing the end of radiotherapy? Sending best wishes to you in Germany.
To adagio in Canada, did you get the results of your mammogram on October 21st? The last time I had one they told me all was fine straightaway.
To Debra in the USA, do not forget to pop in to see us. You have done such good work on the TNS recently with your comforting words amidst the sadness felt by many over the deaths of some on that thread.
To Peter and Liz, Michael, MartOne, thinking of you and hoping all is well.
To Lindsay, thank you for your post. Keep well and happy and I hope someone will be able to help you with your carpet.
To sam52, SamUK and Carolben, I hope all is well and that you will post with your news.
Thanks to the many people that are viewing this thread.
Fond thoughts.
Sylvia0 -
Hi Sylvia & everyone,
Sincere apologies for not being on here for so long. I don't like coming on here too much, I prefer not to most of the time to be honest. But I think of you all, all the time.
I'm doing really well thank God. My life is pretty busy, back at work and Emma turned 1yr old this week! Don't know where the time went. Enjoying life and feeling well. I do tire a lot easier than before, I guess that's the side affects of chemo & having a demanding baby to take care of, as well as work.
Went for a check up recently, no scans because my doctor doesn't do that but from a physical check, everything is good. Have my first mammogram this week. Will be meeting my breast surgeon next February to discuss 2nd mastectomy (my choice!) and full reconstruction. Got tested for the BRCA 1 & 2 gene and it came back negative. I was stunned, but very thankful. Perhaps it wasn't a gene defect that brought on my cancer, perhaps it was and the medical world haven't discovered it yet. I'll probably never know.
I hope you are all feeling well and keeping well.
Much love from a very rainy Ireland
Carol xx0 -
Mumtobe - glad you are feeling so good, and that your check up went well. Great that you are negative to the BRCA gene! Good luck with the upcoming mammogram . Life with a one year old is generally very busy and tiring, so that is not too unusual, but I guess with chemo it would be even more tiring. I am like you in not wanting to come on the web site very often any more - but I think that new people do benefit from hearing other people's experiences. Enjoy your weekend.0 -
Hi Mum to be,
Good to hear from you and great to know that you doing well. Happy birthday to Emma, she must be so cute and up to all sorts.
Sylvia,
I hope that the storm has not affected you too much, it looks severe around your part of England. We had thunder and lightening but hopefully the worst has passed us by. We have to leave soon for North Mayo right on the Atlantic. Damian's cousin died at 52 In Coventry and as not everyone will be going to the funeral there is a mass for him in his home church in Killala. I love that part of Ireland it is so wild and beautiful, but hoping that it won't be too wild today. Stay safe,warm and dry.0 -
Hello Mumtobe (Carol)
Thank you for your post and it was so nice to hear from you.
I was glad to hear that all was going well with you and that you had good results from your check up. I can understand that you get tired because it must be exhausting to be working and looking after a one year old child. I am glad that you are enjoying life.
I do hope all will go well with your first mammogram next week. Please pop in to let us know that everything is fine. It is very brave of you to be thinking about having a second mastectomy and full reconstruction. It is good news that your tests for the BRCA1 and BRCA2 gene came back negative.
I can understand your reluctance to come on the thread now that you have finished treatment and that you want to get on with a normal life and put all the cancer treatment behind you. Just pop in when you can and remember that it is so important for the newly diagnosed and those beginning treatment to hear good news and to know that people are surviving breast cancer. Without posts there can be no threads.
I often think about you and all the things you went through. Enjoy every day and above all enjoy little Emma.
Fond thoughts.
Sylvia xxxx0 -
Hello linali (Lindsay)
Thank you for popping in. The storm here in Exmouth seems to have come and gone in the early hours and seems not to have affected us much. Until I get out and about today I shall not really know. It is very calm here at the moment and the sun has started to shine. The storm seems to have got worse as it has gone towards London and the south east.
I was sorry to hear about the death of Damian's cousin at just 52. I do hope all will go well at the mass and that you will have a safe journey.
Keep well and pop in whenever you can.
Thinking of you.
Sylvia xxxx0
