Calling all triple negative breast cancer patients in the UK
Comments
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Hello Anne (Apandy) from a fellow Londoner.
Although I am not a TN, I have been part of this thread for a while, as Sylvia and I went through diagnosis and treatment (surgery) for hyperparathyroidism at about the same time a few years ago.
I was diagnosed almost 12 years ago now; I had the works: mastectomy, chemo (4 x FEC, then 4 x taxotere),radiotherapy and 8 years of endocrine therapy (tamoxifen for 2.5 years, followed by aromasin).Chemo affects people in different ways - some have lots of side effects, others very little, so I would not be too worried at this stage.It is not 'a walk in the park',but certainly doable.
I am also a teacher (learning support in an independent school) and am a single parent too (my son was almost 18 when I was diagnosed aged 50).Unfortunately he was not able to be of any help since he has Aspergers, and I had to shield him to a certain extent from what was happening.I was not at school from the October half-term to the following September, and then went back with reduced hours.
Whereabouts in London are you? I live in North West London and was treated at the Royal Free Hospital in Hampstead.They have a special breast cancer charity called Cancerkin, which offers services to anyone being treated at a London hospital. They have various therapies (massage, reiki etc) and can also link you with someone who has been through the cancer 'journey'.They also have a support group which meets once a month, and various activities like yoga, pilates, and a writing group.Even if you do not /cannot access Cancerkin, you can speak to someone on the phone for advice and support.
I would not worry too much about the lack of hair when you are at school; you will get a wig before you start chemo which is supposed to be a close match to your real hair. However,I never wore mine, preferring to use scarves.
You will get a lot of support and information here and on this site in general.
Best wishes,
Sam
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Hi Sam
Thanks for your reply. I am in South London, close to Beckenham.
I think I will probably go the scarf route. I bought some really pretty bandanas which arrived today and I am quite looking forward to wearing them. But I am curious about what a wig will look like. Do they tailor make them or just give you a collection to choose from?
We have another thing in common as well as the teaching. I had a subtotal thyroidectomy about 20 years ago for Graves disease. I am now on thyroxine for the rest of my life.
Thanks for the advice and support.
Anne x
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Susan, your story sounds funny! Thank you for sharing, and I know it was a tough time for you having too much Ativan, but the way you described it was funny. Much prayers for you and I will be checking the boards all day on Tuesday waiting for your excellent news, that you will be delivering to us!
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Hello susaninicking,
Thank you for your post. I do hope things will move on fast for you, so that you can begin radiotherapy and then put this breast cancer journey behind you. I cannot believe the rough time you had when you had your first biopsy. That was not right. You seem to have had a pretty rough time yesterday but you write about with humour!
We shall all be thinking of you on Tuesday September 17th and keeping our fingers crossed that all will be fine.
Thinking of you.
Sylvia xxxx
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Hello Anne,
Thank you for your post. I can understand your worry about your 12 year old daughter and how she will cope if you are particularly ill. At her age she will fully understand what is going on and if that were me I would try to involve her in your journey and let her help with little things in any way she can. Tell yourself that you are going to be alright during chemotherapy and that you can get through it, rather than thinking that it is going to make you ill. As sam52 said, chemotherapy affects us all in different ways and it is quite possible you will be fine. Just do everything you can to help yourself.
You have friends, family and neighbours who have all offered to help and they can do practical things in the home and make things for you to eat if you do not feel like doing it. Of course, all these people cannot know how you are feeling because they have not experienced a diagnosis of breast cancer, but for that you can come here, because we have all been through it so we know it can be done.
You are right to try to keep things as normal as possible and this can be done. I carried on in much the same way as before but I just rested when I needed to. I listened to my medical team and did what I was advised before the chemotherapy started and during. Before starting, which was in November of 2005, I was told to get flu injections and a pneumonia injection, as I would be very vulnerable to picking these up. I was also told to see the dentist and get any dental work out of the way, as I would not be able to have dental treatment for fear of infection. I did this. I was told my hair would begin to fall out after the first chemotherapy treatment and that I should get a wig. I went to the cancer charity in the grounds of my hospital to look into what could be done during hair loss. I looked into scarves etc., but knew immediately that was not for me. I went to the House of Fraser wig department and got a lovely wig that was paid for by the NHS. Patients are entitled to one wig on the NHS. I was delighted with the wig and wore it to my second chemotherapy session. It looked very real and people thought I had somehow not lost my hair!
At school it is best that it is all out in the open and then your daughter's friends can help her through this. Think about wearing a wig, as it does make you feel more normal. You will have to allow quite a bit of time for your hair to grow back. I remember wearing my wig from November 2005 for about eighteen months. Your hair will start slowly recovering as soon as you finish chemotherapy. During the time when I had no hair I used to wash my scalp with gentle Johnsons baby shampoo to feel refreshed and sometimes I rubbed in ordinary avocado oil and then rinsed it off. I found my scalp got very dry.
Before the chemotherapy started I had an appointment with the chemotherapy team for a general assessment and information session.
The long chemotherapy journey can be a time of financial worry, so if you do have any problems you might want to see whether you can get any financial help. You might want to consult Macmillan nurses or Hospiscare nurses, as they will know what to do.
Once you have your appointment on the 30th and then start chemotherapy you will find that the time goes pretty quickly, as the chemotherapy session lasts quite a long time. Please let us know what chemotherapy drugs you have and the regimen, whether every three weeks or weekly. I have actually just been reading that what is called high dose chemotherapy, every three weeks, seems to be more effective than weekly lower dose. I was fine on every three weeks, but some of the women on here have said that they thought they fared better from the side effect point of view from weekly.
Please let us know if we can help in any way with anything you need to know before you start chemotherapy and during. You need to go to chemotherapy reassured and relaxed.
Best wishes.
Sylvia xxxx
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Hello sam52,
I was so happy to see you posting and supporting Anne, because I know you are busy. I am sure all your wise words will reassure Anne.
You and Anne have being single parents in common and it will show her that she can get through this journey.
It is interesting how we women differ in how we deal with our hair loss. I know that wearing a wig for me made all the difference and that I could not have done it with scarves and for you it was the opposite. I know at the time that losing my hair and having to stay in hospital for a mastectomy were my two greatest fears. I did not seem to worry too much about chemotherapy and radiotherapy. I felt alright knowing that after each of those treatments I would be coming back home. I was terrified about going into hospital for surgery but I somehow survived. I was lucky to have virtually no problems during chemotherapy and radiotherapy. I was not aware of it at the time, but after I finished treatment I did have strange feelings in my feet. This turned out to be neuropathy from the docetaxel (Taxotere) and I have been told that nothing can be done about it. Of course there is the osteoporosis which could have been caused by the chemotherapy treatment, so I have read, but also, of course, the undiagnosed hyperparathyroidism or a bit of both.
It looks as though most hospitals now offer some kind of complementary therapy and it is probably a good way of getting cancer patients to relax.
I hope all is well with you as we say hello to autumn.
Love.
Sylvia xxxx
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Hello Anne,
Just popping in again to say I was interested to know that you had had a subtotal thyroidectomy twenty years ago for Graves disease and that you are on thyroxine for life. How do you cope with that. Do you have any side effects?
As for the wigs, you can go and have a look and try some on. At my hospital in Exeter, the RD&E, they did have special sessions that you could attend or else go to the wig department at the House of Fraser store. I chose a Raquel Welch wig that really suited me. They can adapt it if you want. I also bought a special brush to comb it, and a special shampoo and conditioner to wash it. I still keep the wig.
I also bought a couple of lovely turbans that I wore at home and at night. You will find it is rather cold on your head at night without hair.
Best wishes.
Sylvia xxxx
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Hello everyone,
It is Friday again and another week has slipped by. Here in Exmouth it has been quite cool and we are now getting some well needed rain. It is strange to watch the parched grass turning green and the green leaves of the trees turning autumn brown. The seafront is very quiet and I always enjoy looking at the sea, the beach and the sand dunes empty of holidaymakers keen to get a tan. I find it looks more beautiful in its natural state. There are a few people still eating huge ice cream cones or sitting on the wall with their fish and chips.
It has been a busy week on the thread and we have some new people who need all our support and help as they go through treatment.
Our thoughts are with MartOne, in the Midlands UK, as she posts for her mother and of course we are all thinking of her mother as she waits for radiotherapy.
Our thoughts are with apandy (Anne), London UK, as she waits for her chemotherapy appointment.
A special hello to jackpot who had her first chemotherapy on September 4th. I do hope you are feeling better and have recovered from nausea and sickness.
Hello to peterandliz and Michael, our two men on the thread. Thank you for your contribution.
Hello to SamUK. We have not heard from you for a while and hope all is well.
To adagio in Canada, we hope you are having a good holiday.
To linali (Lindsay) in Ireland, thinking of you and hoping all is well.
To Carolben in South Africa, I hope you are getting stronger. You must be getting ready to go to see your son in Israel. Try to have a look at the link Debra posted about all the optimism now coming out about triple negative breast cancer.
I hope I have not forgotten anyone.
Have a good weekend everyone.
Sylvia.
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Hi everyone! And thank you all, wonderful ladies for all the advice and support you're offering in this forum!
Thinking of all of you, and wishing you a nice and relaxing weekend!
((((((HUGS))))) from the Mods.
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Hi Sylvia
The thyroid medication is not a problem, it's just a bit of a nuisance having to get repeat prescriptions and make sure I don't miss any.
I have not had any side effects that I am aware of as they seem to have got my thyroid hormone at the correct level. I have found the menopause more of a problem. I had just settled down onto a low dose HRT which got rid of the hot sweats and was not causing so many migraines, but then I was told to come off it. I have been off the HRT since my daignosis i July, about 8 weeks now. It's not too bad, just a few hot sweats every day but they are doable. I told myself if it was too much of a nightmare coming off HRT I might ask about going back on, since hormone doesn't play a part in Triple Negative cancer, but for now it's not too bad and I hope the hot sweats will settle a bit. I am going to try to stay off it. There have been no periods so I assume I am through menopause now.
Regards and thanks for the ongoing advice.
Anne
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Hi Sylvia,
Liz received her results yesterday 10 weeks after the test and she does not carry either of the Brca genes, so thats good news. She is still having her ovaries removed in October just incase. Even though she is not looking forward to the side effects. Her Onc now retired did say in his opinion she could have HRT as her cancer is TN so she would not be feeding it.
Liz and her friend is at Norwich hospital today as her friend is having a scan. Liz is trying to get her friend to change her onc as he is rude and dismissive. It may be he took a disliking to Liz last time as she was asking a lot of questions he did not really want to answer.
Peter
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Hi Anne,
I have just mentioned HRT in my last post. Even though you like Liz are TN you may find it hard to get a doctor to prescribe HRT. Liz had a problem a year ago with aching joints at the wrong time of the month which we thought were caused by Liz possibly starting to go through the menopause. when we saw a doctor he was against HRT as Liz had had breast cancer.
Peter
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Hello peterandliz,
I always enjoy your posts. It is strange that you should pop up posting about HRT because I was just about to post to Anne, whose post I had just read. I was very surprised to learn that she had been on HRT because everything that I have read tells me this is a no no and I did not think it was being prescribed any more. Although triple negative breast cancer is not directly driven by hormones, as far as we know, my oncologist, whom I really respect, told me that, although I was diagnosed with triple negative, it did not mean that the breast cancer started off as triple negative. She told me that cancer cells mutate within the body, so we do not know what actually started them off. I think she said it could have started off as hormonal. My own opinion of HRT is that it is something completely unnatural. If we give it its full name of Hormone Replacement Therapy, I think it says it all. At the time of a woman's life when her oestrogen from the ovaries is disappearing because it is not needed, oestrogen is put back in by HRT. That does not seem normal. I think it is probably better to go through the menopause naturally. There is still some oestrogen in other glands of a woman's body to supple oestrogen. There must be a better way to cope with hot flushes and night sweats. I suppose it is easy for me to talk because I am one of those women that had no problem with menopause and it is the one date I barely remember, although I know I had a late menopause compared to the average woman. I have a friend here who developed breast cancer after being allowed to stay on HRT for about 10 years. She is convinced HRT was to blame. We also have to remember that another popular drug, tamoxifen, does the opposite to HRT and takes away oestrogen and I have read that if you stay on tamoxifen long enough you can end up with TNBC. My philosophy is to stay away from all drugs as much as possible.
I was so glad to know that Liz received her results yesterday and that she does not carry either BRCA1 or BRCA2. That is good news indeed and she must be very happy and relieved.
I can understand that she is not looking forward to having a surgery induced menopause, but she may be one of the women that does not have side effects. There must be some natural products to help if she does.
Liz's friend is so lucky to have her to help through this cancer journey. I do hope there will be good news from the scan and that her friend will not have to wait too long for the results. Waiting creates too much worry and anxiety and that does not help the cancer.
Liz is absolutely right to get her friend to change her oncologist and he has no right whatsoever to be rude and dismissive. He is there to serve the patients and answer all of their questions. If that were me I would be putting in a complaint and saying he is not worthy of his job. No matter how many questions a patient may ask, they have to be answered. It is the patient's body and not the oncologist!
Keep in touch and let us know how things go. I hope your son has settled back at school. As a former High School teacher I have been watching the documentary Educating Yorkshire and cannot believe what is happening in schools. It is every bit as bad as Waterloo Road. Apparently there was a documentary entitled Educating Essex, but I missed it. I hope it will be repeated. I would never have put up with the behaviour I see in these schools. I taught French in this country and had a very good relationship with my pupils. I taught English as a second language in France and Morocco for many years and there were no problems at all. Pupils were so keen to learn. Have you seen any of these programmes?
Thinking of you and sending best wishes.
Sylvia.
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Hello Anne,
Thank you for your post. I was glad to know you have no problems with your thyroid medication.
I was surprised to know that you had been on HRT. Please have a look at my post to peterandliz. If that were me I would not go back on it.
I hope you have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Moderators
On behalf of everyone on this thread, I would like to say thank you for popping in and for your kind words. We are so lucky to have this forum to come to, to help and support others. Thank you.
Wishing you as well a nice weekend, wherever you are spending it.
Fond thoughts from a wet autumnal day in Exmouth, Devon, UK.
Sylvia xxxx
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Hello everyone,
You might want to read about triple negative breast cancer and the role that the androgen receptor plays in it. The link is
Apparently some triple negative breast cancers are androgen receptor positive and are similar to prostate cancer. I need to read more but was wondering what you may know about this and whether any of you have noticed this in your pathology reports?
Best wishes.
Sylvia.
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Still catching up with all the posts - it's been busy here!! But I just wanted to write quickly before I go on my trip.
Sylvia, a belated happy birthday! Hope it'll be a healthy and happy year ahead for you.
Debra, thanks for the yoga and bc link - I swear it's been yoga that has kept me sane and moving! I just love it. And it helps with the anxiety too.
MartOne, sorry you're here for your Mom - but there is so much help and empathy here, it's a good place to be.
Anne, good luck with chemo, and I second Susan re Dr Google - there is so much info on this site alone; and I try to be careful about where I get my info from. As I don't know enough, I often ask my sisters to research things for me.
Susan - pleased the biopsy went well - I also had a good laugh at your Ativan experience, but I'm sure it was not so funny vomiting all over the place - poor you!! At least now you know for future use! Will be thinking of you on Tuesday and crossing everything!!
I'll be flying to Israel on Tuesday - my family are urging me to take wheelchair assistance. I've just come off 6 months of chemo and am not as strong as I thought I would be. Standing in queues for any length of time is killing, and it'll be late afternoon, my most tired time. So I'm considering it, it certainly would help to be just taken right through with no long standing times. I still get light headed at times and maybe just to be cautious I will. I hate the thought of it, it kinda smacks of yelling I'm sick, and I don't feel myself to be sick.
That is very strange considering I have MBC, but I don't think of myself as sick. Mmmmm.
No one has to do this alone, and I can't say how much it's helped me, being on these boards.
I'm not taking my laptop with me, it's just one more thing to carry, but I'll be back in October!
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Carolben, Being a brand new user of wheelchairs myself I have to say for SURE get the wheelchair! So fast and with any luck the people will be nicer to you. And get one going home too, those lines through Tel Aviv security are brutal. Maybe you can even move to the front of the line somehow? I'm all for using whatever is at my disposal with BC to my advantage! xo
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Hi Sylvia
I'm feeling much better now thanks, the only side affect I have at the moment is Bone pain in my legs, anyone had this...
I went to a makeover night at the shop were i am getting my wig from, I'm not one normally for wearing makeup but it was nice to be spoilt, once I was made up...my new wig was added and I honestly didn't recognise myself,
Feeling rather strange from the extreme change in appearance it was lovely to be encouraged and complimented by the other woman who were there who were a mixture of cancer patients and alopecia sufferers, all in all in was a lovely night.....
There was a lady there who was promoting aloe Vera products from drinks taken as a daily shot to gels and tooth pastes as one of the best things you can take for cancer treatment as well as many other complaints, I've done a bit of research since and there does seem to be something in it....has anyone else looked into the healing properties of aloe Vera or maybe used it themselves, it would be interesting to know if it helped.....
Take care
Jackpot0 -
Hi Sylvia
Just read the link you posted, it's good to know there is so much research going on into tnbc, lets hope they find a targeted therapy soon....
I was aware that there are sub types within tnbc so ive just checked my pathology report and it says NST which apparently means "no special type"
Jackpot0 -
Hello Carolben,
Thank you for your post. I do hope you will have a good holiday in Israel with your son. I am sure it will do you a world of good. I can understand that you will not be taking your laptop, so we shall hear from you when you get back.
Take care and enjoy every day.
Fond thoughts.
Sylvia xxxx
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Hello Jackpot,
I was so glad to hear from you and to know that you are feeling much better. I think that the treatment does affect the bones but there must be something that can help with this. Point out anything like this to your medical team.
It sounds as though you had a good time at the shop where you are going to get your wig and I am sure it has done you a lot of good. I am certain you will soon get used to the wig and wear it with confidence. I am not one for wearing make up either, but if a little of it gets you through your cancer journey then it can only be good. It must have been quite an experience to be with a mixture of people and it is useful to know that not only cancer sufferers go through baldness. At least for breast cancer patients we know it is only temporary.
I have heard lots of good things about aloe vera products and I know that people who drink the aloe vera juice find it beneficial. I have used aloe vera gel in the past after radiotherapy treatments to keep my skin in good condition. I can only think that aloe vera gel toothpaste must be good. I have tried so called natural toothpastes in the past but found my teeth did not feel clean after them. Talking about the mouth, you might already know that this is another area that can be affected by chemotherapy and lots of women complain of sore mouth. There are products out there for sore and dry mouths during chemotherapy or for other problems. The brand is Biotene and you might find it useful if you get problems with your mouth.
In the past I did have an aloe vera plant that a friend gave me. It was quite an interesting cactus like plant that grew fairly quickly. You could cut off bits and rub the gel straight onto skin. It is good for burns.
It is good to know that your pathology report says no special type. That must make it easier.
Have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia
I hope you won't mind me correcting you about tamoxifen.....
It is known as a SERM : Selective Estrogen Receptor Modulator ; it does not remove estrogen from the body, but acts selectively in different tissues, as either an agonist or antagonist.Thus it is an antagonist for estrogen receptors in the breast, but an agonist for estrogen receptors in the uterus.For this reason,it has been prescribed for some women who are having difficulty conceiving, and conversely for those who have estrogen receptor positive breast cancer, since it acts in completely different ways in those two body tissues.
This also explains why most people who take tamoxifen for bc experience a thickening of the uterus lining (endometrium); also why one of the (rarer) side effects is cancer of the endometrium.
Hope this helps,
With love,
Sam xx
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Hi Sylvia and everyone
I've just found out over the weekend my Neice who was diagnosed with lymphoma 18 months ago and been in remission only a year has got it back....another 6 months of chemo starts, feel so sorry for her....hate this disease....she's only 27 years old
Take care
Jackpot0 -
Hello sam52,
Thank you for your post and for your explanation. I was merely repeating what I had read recently. I did know that tamoxifen was known as a SERM but was not quite sure what it meant. If it acts as an antagonist for oestrogen receptors in the breast, what does that mean that it actually does? It looks as though by helping with hormonal breast cancer, it raises the risk of uterine cancer. I have also read many times that if you stay on tamoxifen for a long time, there is the risk of ending up with TNBC. Why? I have also read about research that wants to manipulate things so that if you have TNBC they turn it into hormonal positive breast cancer so that it can be treated in the same way as hormonal breast cancer.
I know women who are most distressed because tamoxifen has made them put on a lot of weight. Why should this be?
In my own family the sister of my sister in law had drugs (probably tamoxifen) to help her conceive and she had twins. A few years later she was diagnosed with breast cancer. She was only forty.
Thank you for your input. That is what the thread is all about.
It is very autumnal here, cold and wet.
Love.
Sylvia xxxx
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Hello Jackpot,
Thank you for your post. I was so sorry to read that your young niece of just 27 has had a recurrence of lymphoma, just 18 months after being diagnosed and is facing another six months of chemotherapy. That is so awful. I do hope she will be alright. Do you know what drugs she is going to have?
I hope Michael will post as he has been through all this with lymphoma and he may have some tips.
I am convinced there is something very wrong going on for so many people to be developing cancer of some sort. All the emphasis is on more and more expensive drugs and treatment but not enough searching into causes.
How are you doing now? When is your second dose of chemotherapy?
Thinking of you.
Sylvia xxxx
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Hello susaninicking
I am just popping in to say that I hope you have had good news today.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I must apologise for my somewhat sporadic posts, but most days are up and down for me, although that's hardly a good reason.
As many have said already, this forum has been a life line to me and has helped to keep me sane through some of my darkest days. I had my appointment earlier this month and surgery is scheduled for the 16th October, when I will be operated on by my new onco-plastic surgeon and a plastic surgeon.
The appointment wasn't so bad as my friend was able (again) to re-schedule her work to accompany me...how grateful I am and so humbled by the generosity of spirit and kindness of others. As I have said before, kindness goes a long way and I appreciate every morsel of it.
One interesting thing happened at the appointment and that was that the plastic surgeon openly admitted that my first (eminent) surgeon had done a really bad job of my augmentation (bi-lateral reduction after lumpectomy) as he hadn't left me symmetrical !! I am still of the opinion that had it been a female surgeon, I wouldn't have been left so blatantly lop-sided. It made matters worse when the surgeon hadn't believed me when I told him that I had capsular contracture...only later did he believe me when removing the expanders (with a major post op haemorraghe that happened 3 weeks post op...as it wasn't checked...hence the whole nightmare of ambulance and emergency surgery where I lost so much blood and needed to be resuscitated) and he saw for himself how badly my chest is scarred on both sides.
I find that similar to lawyers, the medical profession tend to close ranks even when an obvious mistake has been made...the plastic surgeon now puts my chances of a 'normal' chest as ''unlikely'' to the point where he would not operate unless I accepted that any expectation of success was set at the lowest bar. The onco-plastic surgeon on the other hand is setting the bar high (perhaps as the first surgeon was a mentor to them both) and admitted the mess I was in was a mistake (''well we all can make a mistake''). Currently I have a lot of expanded tissue under both arms and scarring on both sides from the beginning of each breast form right the way round to almost being visible from my back. On my right (where the tumour was 4.5cm, reduced to 7mm by chemotherapy) I also have a long sentinel node biopsy scar that almost touches the other one...so I find it difficult to reach with my right arm (standing on tip toes helps).
Now my main concern, apart from realising that my husband is having a mid life crisis, which I don't involve myself with ( I just can't do it...makes me cry still ) and I haven't seen him since May...is that the first surgeon could have gotten the sentinel node biopsy wrong. He didn't use the nuclear type dye (sorry my brain is befuddled) but just a straight forward intense blue dye that set my tumour off on such a pain soar that I felt like it was on fire...I saw that my notes have a question mark against the dye proposing a possible allergy; I couldn't bear the weight of a sheet on me at the time and nobody has ever explained why the tumour was so agonisingly painful because of it.
Considering the size of the original tumour and the finding of some DCIS (also 7mm, interestingly post chemo) I am cautious to even dare to believe that none of my lymph nodes were affected.
I have lost count of how many tumours I ended up having so far but they ended up being fat necrosis and lumpy scar tissue, so I do have a LOT to be thankful for. Despite the examination on the 2nd inst. Neither surgeon spotted the latest tumour, but no doubt they will during the operation.
Please forgive me if my words are somewhat jumbled but I am taking morphine for implants in my spine and stress just makes it all a bit of a blur. I do try to stay positive, but if anyone can help with suggestions on how to stay busy when I have limited mobility, I would be most grateful.
Sorry to complain, I just feel the need to explain a little more of what is happening. Oh, apparently I will need 2-3 surgeries to try to fix things (hence the year to 18mths agenda).
Thinking of you all and wishing you better health with every new day. Thank you so much for listening.
Sam X
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Hi Sylvia
I think your right about something being very wrong, there's so many people of all ages races being diagnosed with cancer it's like an epidemic and I definitely do think all the treatments are all about the money, there's so much more out there that can help that is just not researched enough because there is no money to be made from it....is it just me who thinks this is true...
I received a letter yesterday from the genetics clinic asking me to phone for an appointment to be tested for the brca1 brca2 mutation because I'm triple neg has anyone else been offered this, is this standard, apparently most people with the brca mutation end up with tnbc, I think I read somewhere it was 80%....does anyone else know their brca status?
I'm not sure what chemo my Neice is on yet Sylvia I just know that it is going to be at lot more aggressive this time....my next one is 25th sep,
Take care
Jackpot0 -
Hello Sam_UK
It was so nice to hear from you and there is no need to apologise. Post when you can, read the posts when you can and do not worry about anything except getting all this surgery behind you and going forward. We are all here to support you and help in any way that we can. I am just so glad that this thread can help you and get you through the bad days.
I was so glad to know that you have a date for your surgery and I realise you will find this a long wait, but this seems to be the name of the game. It is all waiting for the next appointment. Four weeks is a long time to wait. Thank goodness that you have a new oncoplastic surgeon and a plastic surgeon.
You are so lucky to have such a loyal friend. These are not that easy to find.
It must be awful to know that your first surgeon did a really bad job. You could well be right about how things might have been different had you had a female surgeon. I thank my lucky stars that I had a female breast cancer surgeon to carry out my mastectomy and removal of lymph nodes. She did such a neat job and I think smaller female hands probably played a part. When I try to imagine her doing this I often think about a delicate piece of sewing and the different result you would have from the work done by a female hand and that done by a male hand. That same female surgeon did the same marvellous work on my throat when I had to have a parathyroidectomy. There is no detectable scar.
What you have been through sounds like an absolute nightmare.
I think you are probably right about how the medical profession closes ranks just like the legal profession. It is very hard to fight them. Let us hope you will now have a much better outcome.
I know it will be very difficult but for your own well-being it is best to put all that has happened with, shall we say 'botched work' behind you and look forward to everything going well and you getting back to a more normal and happier life.
It is very difficult for us to say how we think you can keep busy because we are not there with you. Since you have limited mobility I can only think that reading and music may help you or drawing and painting if you feel inclined that way. You could try writing, if you might find that relaxing. You could put everything you have been through into writing and that might be a form of therapy through unburdening yourself from what is and has been mental and physical torture. If you are not up to writing, you could record your thoughts.
It is a pity about your husband, but he does not appear to be a very worthy person. There is always a soul mate out there somewhere.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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