Calling all triple negative breast cancer patients in the UK
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Dear All
I've been having a little think about moving on from cancer. It occurs to me that, while we do naturally fear a recurrence, there are 150 women diagnosed with breast cancer for the first time in the UK every day. We've been through it. We're better off than them.
Susie
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Sylvia,
I understand the the genetic blood test is now down to about $200 in the US. I don't know if that includes the actual teleconference interview. I think mine should be covered by insurance but they said they will let me know if it isn't in all or part.
I had the teleconference a few weeks ago and will have the genetic blood test next week. The gal who interviewed me seemed very pushy and I didn't want to rush into it without better understanding the reason for genetic testing. I gave my oncologist a copy of my sister's report and, after reviewing it, she said I should definitely be tested! I've been told it takes several weeks to get the results.
Susie,
"150 women diagnosed with breast cancer for the first time in the UK every day." Every day?! Just in the UK? It's an epidemic! And still no cure?
Yes, we've been through it but the thought of recurrence can hang over our heads. We need to keep a positive attitude the best we can.
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Hi Viewfinder,
Yes, 55,000 women a year in the UK. One in eight women during their lifetimes. As for there not being a cure -- well, most of us are cured.
Susie
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Hello! Just stopping in to catch up and I hope things are going well. I am havung a good year so far. Ism mos om the sixth minth schedule with my MO; as reports were good in October, I do jot see her until May. The only thing was that my blood calcium levels were high, and she was going to order a parathyroid scan, but as I have not heard anything more about it, I am assuming that she has decided it was necessary. I have promised myself I will not worry About things until it is time to do it. We have just come back from eight days in Mexico, and had a very nice quiet holiday. I am thinking it will be our last trip, as my husband no longer feels able
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hi, read posts today. Typing lefthanded. Must wear awkward sling except if a shower or exercise. This is day 4 post-op and first shower after bandages come off today. Pain so far not as bad as I feared. Passive exercises started yesterday.
Worrying about recurrence BC normal, gets better but always lurking, me anyway.
Enjoyed posts, talk to you all later.
Love, Mary
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Hello Nancy,
Thank you for your post. I was glad to know you had had a good report from your medical oncologist.
I was concerned to read that your blood calcium levels were high. You should make sure that you get a blood test for parathyroid hormone level and if it is high you should see an endocrinologist to arrange a sestamibi scan to check out your four parathyroid hormone glands to see if you have a non-malignant tumour on one or more of them, which will be causing your high calcium levels and your parathyroid hormone level will be high.
I know all this because when I was diagnosed with my breast cancer in 2005 it was discovered that my blood calcium level was high. My breast cancer surgeon/endocrinologist ordered a scan, a non-malignant tumour was found on the lower right parathyroid gland and I had to have surgery to remove this. The calcium etc. then became normal and I was cured. This disease is from an overactive parathyroid.
You might like to read the threads in two forums where I posted a lot and you will find all the details.
Look at the forum Not diagnosed with recurrence or mets but concerned and go to the thread High calcium.
You can also look at the forum IDC (invasive ductal carcinoma) and go to the thread Parathyroid disease and breast cancer that someone I got to know, Sam52, created. I posted a lot there and Sam and I went through our surgery at the same time.
There is a lot of research that indicates a connection between breast cancer and an overactive parathyroid gland (hyperparathyroidism). They are not sure which one comes first. My breast cancer consultant surgeon/endocrinologist told me that my parathyroid disease preceded my breast cancer.
You may also want to have a look at parathyroid.com.
This is a serious disease and will not go away without surgery. If untreated it is life threatening.
I was glad to know that you had a nice quiet holiday in Mexico.
Please let me know if I can help in any way and please read those two threads.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I do hope you will make a good recovery from this surgery. It was brave of you to have it.
Love.
Sylvia xxxx
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Hello Susie,
I saw your post to viewfinder and I do agree that too many women are being diagnosed with breast cancer in the UK. There are multiple risk factors and possible causes of this, much to do with lifestyle, but all the emphasis is on finding more and more toxic drugs.
There is no cure for breast cancer, as yet, and I do not think there will ever be a magic bullet. When we finish treatment and have an excellent pathology report we are told that we are NED, no evidence of disease. We are not told that we are cured and the medical experts do not even use the term in remission.
There is always a chance of recurrence or spread.
I am nearly fourteen years since diagnosis, but I am not cured. I have a friend here who was in the clear for thirteen years and then she had spread to the bones and she has been like that for over three years and she is on and off chemotherapy drugs and radiotherapy.
We all know the odds but we nevertheless live normally.
Love.
Sylvia xxxx
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Hello viewfinder,
Thank you for your post.
As for genetic testing only you can decide about that. I suppose there is no perfect solution and there will probably be anxiety and worry about not having it and the same worry and anxiety if you have it.
Knowing you test positive creates worries for other family members.
Love.
Sylvia xxxx
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Hello Sylvia,
Some oncologists are now starting to use the term 'cured'. I find the idea that cancer is somehow unique in being incurable bizarre. Moreover, as I was trying, perhaps clumsily, to explain some time ago, my cancer might recur, okay, but the woman standing next to me on the tube is just as likely to be diagnosed for the first time. At least my health is being monitored.
Lifestyle, especially diet, does seem to be the key to the number of women getting breast cancer. Countries such as Japan and South Korea, which have seen big changes away from their traditional diet to a western one, have seen huge jumps in diagnosis over the last 20-30 years.
Susie
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Hello Susie,
I do agree that Western lifestyle and food is probably causing a lot of the cancers, especially breast cancer.
I did post a chart sometime ago that showed food represented about 35% and smoking 30%. I think the Pill and HRT have also caused a lot of breast cancers and then we have to take in our polluted environment. If I can find the picture again I will post it.
I have found the picture. It is in the large BMA Medical Book - Complete Home Medical Guide. There is a very detailed section on cancer from pages 152 to 159, with lots about cancer and plenty of coloured illustrations.
I shall try to post tomorrow the illustration about the causes of cancer.
Keep up your optimism, Susie, we all need that on here.
Love.
Sylvia xxxx
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Hello everyone,
I am just posting this chart of the causes of cancer. It comes from the BMA book.
Best wishes
Sylvia
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Hello Sylvia and all,
This is going to be very short, but I needed to keep you informed as to what was happening.
After each treatment I've needed antibiotics. These killed all the good bacteria in my gut. I'm now in hospital with Clostridiium difficile - C-diff. Last Thursday I was told I was extremely sick and there was a chance that I wouldn't respond to treatment as my body was very weak . Well, here I still am, but utterly exhausted.
Best wishes to everyone. I'll have another go at posting when I'm feeling better.
Love,
Gill X
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Dear Gill,
I am keeping my fingers crossed for you.
Love,
Susie
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Hello Gill,
Thank you for posting. I was so sorry to read that you are in hospital and that you are so unwell. I was so sorry to read that you now have ci-difficile and that all those antibiotics have messed up your gut.
Please do not give up and you need to take things into your own hands to put back the good bacteria into your gut. You need to eat loads of plain organic unsweetened yogurt with live culture. Tell Michael to bring you in whatever he can find. Tesco does a plain soy yogurt and also a dairy one. At Holland and Barrett you can get Provamel. You could also get some kefir. In addition, you might want to take some Holland and Barrett probiotic supplements. I take acidophilus with pectin supplements with 3 billion friendly bacteria per capsule. Take them with food.
Keep fighting and think of all of us in our group sending you love and best wishes and supporting you back to good health.
Lots of love.
Sylvia xxxx
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Hello Susie,
I did post the diagram from the BMA medical book and it is at the bottom of the previous page.
Love.
Sylvia xxxx
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Gill, I'm sorry to hear that you've been so sick and in the hospital. I pray you will fully recover. Keep fighting!
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Dear Gill,
I was shocked to hear how ill you’ve been over the last week, but very glad to hear that your body is managing to fight the C-difficile.
You must be absolutely exhausted and overwhelmed by all that’s been going on.
I wish you all the very best- in continuing to beat these infections and in returning to a state of good health once more.
I’m rooting for you- I’m sure we all are.
Flora
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Sylvia, that chart is very interesting. I wish this fact was shown on the chart:
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So 96% of cancer isn't caused by fat?
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Hi Gill
so sorry you have come down with this c difficile. im glad you are getting treated. you must be weak as a newborn kitten. i hope you can eat and can take in some nourishment, and the probiotic food mentioned.
on the bright side,(however dim that seems right now) you have finished chemo.
still writing left-handed here. thinking of you and sending prayers. You have been thru so much in these last months. time for you to have some healing.
Love, Mary
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Susie, Diet, which can be related to obesity, is 35%, higher than tobacco (30%) according to the chart.
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hi viewfinder
its odd maybe, but in thinking about the people i know who have,or had, cancer, (which seems a lot) only a couple of them could be called overrweight.maybe they are part of 4%
hope all is well with you and sis.
Love Mary
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sylvia i wrote post but hit wrong key and it vanished. ill try again later. love Mary
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Mary, thanks for you continued concern about my sister:
She has 9 additional chemo appointments starting today: blood draws, Chemo #2-4, Chemo shot #2-4.
Radiation and third surgery coming up. I can't get it out of my mind that her surgeon has recommended a lumpectomy instead of a mastectomy, especially that she is triple negative and has the BRAC1 mutation.
I spoke with one of her dear friends and she shares the same concern as I. She is a cancer survivor and had a mastectomy. Others I've discussed this with including discussions in the a few threads in this forum, also have this concern.
I'm afraid to push this with my sister because, after all, she's going to one of the most respected cancer centers in the world. What the heck do I (and others) know??!!
PS It's a real shame this site doesn't offer autosave. I've sent several suggestions to the moderators that would enhance participant usability.
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hi Sylvia
I don't think it's being brave, I think of the surgery as a gamble, I'm gambling that I will lose function of rt. Arm for now, but it will be worth it later. I hope.
When I became 5 yrs NED of BC I thought it might be worth it to try and get more use from rt. Arm.
I hope you and Raymond are completely over your bug, in time for spring.
Love Mary
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viewfinder
I have noticed on some posters' histories they have lumpectomies and later have to have the whole breasr off. It's all about the clear margins. My surgery was going. To be lumpectomy but became mastectomy because there wasn't enough tissue to get good clean margins. Let us hope your sis's Docs know what they're doing and you say it's a very good hospital, they must have good Docs. Being BRCA 1 would make this all rather puzzling to me too,
Good idea about auto-save, I've wished for that too.
Love Mary
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Hello Mary,
I do sincerely hope that everything will work out for you after this surgery and that you will regain full use of your right arm.
Thank you for thinking of Raymond and me. It took us four weeks to get over the nasty bug, but it has left us both feeling rather weary.
I have a problem with my right eye and have been told it is a sty and have been given Golden Eye ointment, an antibacterial, but it is taking its time to heal. I have been told it may have been caused by the bug.
Some days I feel full of energy and my normal self, and other days I feel fatigued. At the moment Raymond and I are taking astragalus supplements as they are immune boosters.
I think all this is minor compared to what some people are going through.
I am looking forward to nicer days and getting out more in the open.
I see from the posts that the diagram I posted from my BMA book has sparked quite a lot of conversation. I think it is quite obvious that the modern Western diet is one of the many causes and risk factors with breast cancer and is one that we can try to control. If we live on a diet of processed and over-processed foods plus junk food, we shall not be putting nutrients into our body. The chart does have a part saying 10% is caused by other factors. Being overweight and especially being obese will not be conducive to good health. We have to accept that we shall never really know what caused our own breast cancers and trying to find out is a waste of time. What I noticed here is that the men and women are built very differently to the men and women of my generation. I see so many obese people here. When I was going through treatment I saw a mixture of people, some very overweight and some slim like me.
I see we have another email from Chris Woollams but I have not read it in detail yet.
I was astonished yesterday when I was watching Prime Minister's Questions on the Parliament channel that one of the women MPs stood up and started to mention triple negative breast cancer. She asked the Prime Minister to intervene on behalf of one of her constituents with metastatic TNBC to get some new drug for her that was being refused. The Prime Minister said that the drug situation was not in her hands.
We are way behind with cancer treatment here and the MP said that the drug was available in countries like Germany and twenty other ones. This is shameful. The patient in question is obviously young with young children. I also think there should be much more attention paid to why so many younger women are getting breast cancer.
All the interest seems to be in creating more and more drugs but there is only so much that the body can withstand. However, drugs bring in money.
That is about all. I am still following Brexit and I cannot believe the shenanigans of our so called MPs. They should be ashamed of themselves.
Keep well Mary.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for posting that link. I have read it and printed it off to look at in more detail. I can see the theme running through it is more new drugs. I do not think that drugs are the answer. Finding the causes and emphasising prevention is the way to go, but that does not make money!
Love.
Sylvia xxxx
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