Calling all triple negative breast cancer patients in the UK
Comments
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Hello Dimwid,
Thank you for your post. I am only too glad to help with any information.
I do not think orthodox medicine gives out much advice on nutrition and healthy eating. I do not think they have too many courses on this in their training. There are nutritionists at the hospital but I not know what kind of diets they think are healthy.
There is so much information out there now about cutting down on meat, being wary of dairy products and processed foods and now staying away from sugar. The same bad foods seem to be responsible for a lot of chronic diseases. The recommended diet to prevent heart disease, stroke, diabetes and cancer seems to be the same.
It seems to be common sense to me that if you want a healthy body you have to nourish it properly and keep it in good shape by keeping physically active. I also feel that avoiding negative stress keeps you mentally healthy.
It is important to keep looking forward as those important survival dates come around.
You asked about the bitter apricot kernels. The ones I get are from Creative Nature, which I have been getting on line and taking for the ten years since diagnosis. I mentioned them to my local independent natural food stores here in Exmouth, and they now stock them. I get the bigger tub and they last quite a while. I think it is up to the individual what they eat and how much. I take about 15 every day. If you feel comfortable with just two, then do that. I know that Chris Woollams of Cancer Active said that he was taking five a day with his breakfast. I tend to take five three times a day with a mug of green tea and I chew them well. I first got to learn about them from Dr Nicola Hembry, a nutritionist and cancer specialist in Bristol. I started taking the bitter apricot kernels back in 2005 when I was first diagnosed and went to see her. The biter apricot kernels were on her list of healthy eating.
These permanent side effects of chemotherapy drugs are of concern and I do hope one day that there will be different treatments with less harmful side effects than we have at present. Neuropathy is not much fun and this dry mouth side effect sounds as though it is quite difficult. It sounds very much like Sjogrens disease. I know someone who suffers from this and it is awful. I can imagine that chewing gum would be quite therapeutic for a dry mouth.
Happy healthy eating!
Best wishes.
Sylvia xxxx
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Hello Amanda,
I was so glad to know you like the flowers. Yes, the Peace rose is very beautiful.
I was interested to know that you had your radiotherapy mapping and will soon be starting radiotherapy. I shall be thinking of you next Monday.
I was wondering whether you were given any advice or information about what to do and not do during this treatment. I was told not to use soap with metal in it, such as Dove, during treatment. I usually use Dove unscented, but during my three weeks of radiotherapy I used Simple soap. I was not told much else and did not have any problems of redness of the skin as I know some women do. I would think washing in aqueous cream might be useful as well.
I was very interested to know that you have joined a trial at the hospital for patients who wish to be more involved in the treatment. I do not quite understand how it will work as you will be lying down flat as the machine moves around above you. It is all very quick and short. Let us know how you get on. Information is so important.
I was wondering if anyone has heard from Marymargarethope, who was on a drug trial.
Good luck for next week.
Best wishes.
Sylvia xxxx
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Hello Alibeths,
Thank you for the link about TNBC survivors. I am glad to know that you find it motivating. It is so important for all of us survivors to be optimistic about our future.
I was glad to know that you have got through all your treatment and long may it continue.
Sending you greetings from the UK to sunny Florida.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I just wanted to pop in and send greetings to everyone in our group.
Jackpot (Gill), Suewirral, Marymargarethope, Maryna8, linali (Lindsay), Michael, Tom, adagio, Amanda, Hanieh, Dimwidx and all others viewing and sometimes posting. I hope you are all doing well and getting on with your lives.
Thinking of you all.
Sylvia xxxx
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Hi to everyone,
Tom it is good to hear from you .I think that it must be so difficult for our families watching whilst we go through treatment. Your new baby and toddler must keep both of you busy and a focus for the future. My new grandson Max is doing well and now has hearing aids which we hope will help stimulate him.
Amanda, so glad that the biopsy came back clear and good luck for the 22nd.
Hanieh, wonderful that your mammogram is clear too.
Sylvia,
We had a great holiday in France with Oskar.The crossing was very rough though and it took 20 hours because of the bad weather. Oskar thought that it was great fun when the ship went up and down.
He had a marvellous time....swimming,cycling on a tandem with Damian, playing on an adventure course and lots of pirate themed activities.
We were about 15 miles from St Malo and just a kilometre walk to a small village. The site was set amongst trees with different kinds of accommodation. There were even tree houses and one day we saw a cricket match complete with afternoon tea. Not something I expected to come across in Northern Brittany.
Damian's mum is much better and had improved before we left. It seems that when you become I'll when you are her age that they withdraw treatment or medication. As if they just let you die.
The centre is as busy as ever. On Friday 5 of us are modelling at a local shop as a fundraiser. I am very reluctant to do it as I am not in the best shape but no one else will do it and they want cancer survivors.
On Saturday it is the Pink Angel Ball. It is in its 3rd year. It is in memory of Maureen a young woman who died from ovarian cancer. Her mum and her close friends arranged it both to celebrate her life and also as a fundraiser. It also helps raise awareness amongst younger women.Needless to say I have nothing pink or sparkly but will enjoy seeing all the glamour.
We just heard this evening that Kurt's cousins son was one of the Irish students killed in Berkeley. We heard the names on the radio and were worried as Schuster is not a common name in Ireland. So tragic for the young people who were enjoying their summer in America.
I had a dexa scan last week but haven't got the result yet.
Today was wet which in one way was a relief as the garden was very dry when we returned from France. The flowers are glorious and flourishing but then so are the weeds. Today I bought an Australian bottle brush tree as a gift for Damian for Fathers day.
Thoughts to everyone
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Hello linali (Lindsay),
It was nice to hear from you and thank you for giving your support to those in need of it on the thread.
I was glad to know that you had had a good holiday in France with Oskar. I am sure it must have made all of you so much better. It sounds as though Oskar had lots of fun.
I was glad to know that Damian's mum is doing much better. I think that the older you are the less able your body is to deal with all the toxic medication going into it. People I know say they feel so much better when they get off medication and a lot of the time they just decide to do it whatever their doctors say.
I am always interested to know about your centre. I do hope all went well at your modelling event. I do hope all goes well at your Pink Angel Ball.
It was indeed very tragic to hear about the young Irish people killed in that balcony incident. I was sorry to read that one of your family members was involved.
I was interested to know that you had a DEXA scan last week. Do you have osteopenia or osteoporosis and were having a check up? Was it to see what is happening to your bones? We all know that chemotherapy and radiotherapy affect our bones and it certainly did mine. I think all newly diagnosed breast cancer patients should ask for a DEXA scan before and after treatment. It is the only way to build up records on how many patients are being affected and to what extent. Osteoporosis is a nasty disease and not to be taken lightly. I also think blood calcium tests should be given. If they are high it could mean the cancer has spread to the bones or that you have an undiagnosed over-active parathyroid gland that can be cured with surgery. An over-active parathyroid gland means that you are walking around with calcium leaching from your bones into the blood stream, which will cause severe problems if left. Please let us know the results of your DEXA scan.
Here in Exmouth we are in dire need of some rain. The grass is drying out and all the flowerbeds in our complex need watering.
I was listening to a news item recently about Ireland and it was most interesting. It was about how Ireland got itself out of all of its financial problems after one year of austerity. I was interested to learn that Ireland has a thriving manufacturing business making stents for heart patients and exports them everywhere, including the UK.
I am following the Labour leadership contest with great interest, but not much enthusiasm for the possible leaders, except for Jeremy Corbyn who will probably get knoocked out. I consider the other three a joke. I think before getting into leaders, the Labour party needs to decide what it stands for. I believe it should stay true to the principles of the 1945 government and choose Jeremy Corbyn.
Today, June 20th, is exactly ten years since I was diagnosed with breast cancer and told the prognosis was poor because it was not hormonal breast cancer. I feel we have gone a long way since then to bring triple negative out of the cupboard. This term was not used here in the UK when I was diagnosed. I can still remember so clearly that day.
Sending fond thoughts.
Sylvia xxxx
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Hello everyone,
Just popping in to say hello to the group and to wish you all a good weekend. As I told Lindsay it is exactly ten years ago that I was diagnosed with breast cancer and told the prognosis was poor because it was not hormonal. Since then the term Triple Negative Breast Cancer is used all the time but it was not mentioned back then.
Nearly five years ago I started this thread to bring it out in the open, especially in the UK. It will be five years on September 12th since I started this thread. A whole lot of women have been through the thread since then. The thread is a lot quieter now and I suppose this is because there is so much more information available now. I hope you will continue to help me keep it going by viewing and posting, to help others who need support and comfort on their cancer journey, even if they have lots of information.
Sending you all very best wishes.
Sylvia xxxx
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Hi Sylvia and everyone
Thank all of you for your kind words. It s really encouraging to have great friends like you. Last Thursday I visited my oncologist and he again insisted on having Diphereline injections for five yeard as he believes my hormones should be shut down completely. I was somehow disappointed to hear those words about the reoccurrence . Yet I want to keep my spirits to overcome all my anxieties.
Can I beg you to ask your oncologists about any possible efficacy of Diphereline on TNBC if you got the chance.
Lots of love
Hanieh
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By the way
we are in a holey month called Ramadan in which we fast and we believe God answers all the prayers in this month. I would like to tell you all my dear friends that I'm sending my prayers and all the best wishes hoping to always hear the best news of health from everyone here.
I am also trying to post some pictures of me and my family in my father's villa garden .
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Hello Hanieh,
It was nice to hear from you. I am glad that the people on this thread are helping you as you adjust to life post-breast cancer treatment.
I was sorry to read that you are suffering anxiety as a result of a visit to your oncologist. It si difficult for us on the thread to know what to say about these Diphereline injections that your oncologist wants you to have for five years in order to shut down your hormones. Your breast cancer diagnosis was IDC with triple negative receptors, which means it was negative for oestrogen, progesterone and HER2, so it was not hormonally driven. I remember my oncologist telling me that although I was negative in these hormones that the cancer did not necessarily start as such as they mutate. If I were you I would ask your oncologist which hormones he wants to shut down and why. The fact that he is saying for five years reminds me of the fact that five years is the usual number of years here that women with hormonal breast cancer are put on tamoxifen.
Once again, I am asking anyone reading this thread that has any knowledge of Diphereline to post and help you.
You could post a PM to the Moderators of this forum to help you. If the Moderators read this thread today I do hope they will get in touch to help.
You could also get a second opinion.
Try not to worry, but you do need an answer and you do need a proper explanation as to why you are being told you need these injections.
I have just looked up Diphereline injections again and I think you should have a look at it. It is a drug that is used to treat metastatic prostate cancer in men and one of the things it says on the following link is that it should not be given to women. It is an anti-androgen drug used to lower testosterone in men with prostate cancer.
http://www.news-medical.net/drugs/Diphereline.aspx
According to this link it has a lot of nasty side effects and a lot of health conditions that are seriously affected by it.
Thank you for the photograph of you and your family. It is a lovely photograph.
I did know about Ramadan as it was in the news here as well. I do remember it from my three years teaching in Morocco. I know that you fast from sunrise to sunset and that then you eat. I remember the celebration of Eid at the end of it.
Please let us know how you get on with this problem of injections.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
If any of you have any knowledge about these Diphereline injections, please post and let us know.
Hello to Tom. I hope you had a happy Father's day. It must have been very special this year.
Can you help us about Diphereline injections?
I hope you all had a good weekend and that fathers everywhere got special treatment.
Best wishes.
Sylvia xxxx
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hi Sylvia/everyone
So happy for you Sylvia 10 years that's brilliant , wishing you and us all many more.
Hanieh lovely photo you have a beautiful family.
Just a quick post as I'm off for first rads appointment. The hospital is about 25 mins walk away so plant to walk there and back for the exercise . I asked for early appointments so from Wednesday start at 8.50.
Love to you all
Amanda
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Hello Amanda,
Thank you for your kind words.
I just wanted to let you know that I am thinking of you and wishing you good luck. That is a good idea to walk. We all need to walk as much as possible. Let us know how you feel after the first session and as you progress. All these details are very important.
Fond thoughts,
Sylvia xxx.
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Hi Han Tagh,
Diphereline is used to treat prostate cancer that has spread into surrounding tissue and/or to other parts of the body. It is not a cure for prostate cancer.
Diphereline works by lowering the production of testosterone in men. Testosterone is the natural male sex hormone.
When you must not be given it
Diphereline should only be given to men. It must not be given to women or children.
http://www.news-medical.net/drugs/Diphereline.aspx
Regards
Peter
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Hello Hanieh,
I have just read the post from peterandliz and you will see that Peter is saying exactly the same things as I said in my post. He has sent you the same link that I sent you.
If I were you I would ask your oncologist why you are being asked to go on a drug for five years when your information is that this is a drug that should not be given to women.
If that were me I would be wanting a better explanation of why he wants you on this drug for five years. Why not get a second opinion? Why not see a female oncologist?
Please let us know how you get on. You might be able to get information from the Royal Marsden Hospital in London, UK.
I hope this helps.
Best wishes.
Sylvia xxxx
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Hello peterandliz,
It was a surprise to see you on the thread. I hope all is well with you and yours. I hope you had a good holiday in Finland. How is Liz doing?
Wishing you all the best.
Sylvia
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Hello Sylvia and everyone,Liz and I are fine.
I have been reading most of the posts these last few months.
Our holiday in Iceland was good but Liz and Taylor caught a virus on the flight over so were very ill for 2 days. We did get a lot of travelling done while we were there. We never saw the Northern lights so plan to go back next year. We also went to Lanzarote. hired a car for the week and visited as many places as we could including a visit to the top of the volcano. As we are home schooling Taylor (15 years old) holidays are very cheap. we have just purchased another motorhome and plan to travel around England and Scotland this summer starting in July with 2 weeks in Devon and Cornwall. then hopefully the South of France, Geneva and Northern Italy.
It was sad to see that Lulu died, she really was one in a million and people still comment on her facebook page. Even sadder was another young lady died the day of Lulu;s funeral. She found her cancer very early but only survived for a year as it came back very quickly in her brain. She had a 6 year old daughter.
Liz's friend who has ovarian cancer has been taken into hospital to die as she can no longer do anything and is only conscious some of the time. Liz and her friend fell out over a year ago and has not spoken since.
I wrote in my last post on here a few months ago that Liz had finally been given HRT after about 12 months of trying to convince doctors it was ok. Only to be told 5 months later she was on the wrong type so they took them away. as Liz only had her ovaries removed she should still have a period so should have the combined tablets. the doctor prescribed her HRT only so she had a build up of blood. After another 3 months she has been given HRT again but she has a period each month. In this process I have been banned from going into the doctors with Liz as they did not like me questioning them and making them look stupid as they really did not know what they were doing or anything about triple negative. When the doctor realised Liz had not had a period for 5 months the doctor was worried they had caused womb cancer so sent Liz to the hospital for scans and a womb biopsy. When Liz went to the hospital appointment the specialists said it was crazy the chances were very minimal especially after only 5 months and in their opinion was a waste of time. Instead of taking 2 weeks for the results to come back they took 2 months as the hospital is that far behind.
It will be 4 years in 2 weeks time that Liz found the lump and I am only now starting to relax and not be too concerned every time Liz says she has a headache or develops a cough or any other sign that could be the cancer returning. Even though I am still planning holidays and new experiences the urgency has dropped.
Congratulations Sylvia on reaching 10 years cancer free.
Regards
Peter
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Hello Hanieh,
I have spent an hour looking on the internet and can find nothing connecting Diphereline to female Breast cancer.
Regards
Peter
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Hi everybody
Thanks a lot for all your information and search. I should try to make hard decision in the next 2 or 3 months. I hope I manage to make the wisest one.
Lots of love
Hanieh
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Flowering evergreen hebe - attracts bees and butterflies.
Another evergreen flowering hebe.
Flowering evergreen hebe with lovely blooms and showy variegated leaves.
Another evergreen flowering hebe that is attractive to bees and butterflies.
Convovulus
Yet another hebe with small convovulus.
All these shrubs have blooms that last a long time and pretty leaves when the blooms have faded. They give great body to a garden.
Sylvia
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To anyone,
Does anyone know why none our treatments seem to have been involved with tumor markers in our cancer journey? I am often asked about my tumor markers, and I reply I don't have them done. I asked my oncologist and she said because they werent done at the time of your surgery. She has since told me that blood tests are of no use in the check-ups of recurrence of triple-negative cancer.
I was asked this again yesterday, and it's true that usually people with cancer are often having their markers checked. Anyone know why we don't??
Best wishes to all
Mary
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Good day Sylvia,
Thanks for the useful info. Went to local Health Shop and they had the apricot kernel in stock. They were also very clued up on why wanted them. Very very good people, they even gave me a small bag for free , just to see if I could actually tolerate them. I find them absolutely fine but just a bit bitter. Am taking +- 10 per day. Was looking through the other messages and was curious about the lady having a Dexa scan, what is this for as I have never heard this mentioned by the oncologists I have seen? Also never heard of a Blood Calcium test. In fact after reading lots of comments on here, I am under the impression I am very in the dark about most of the treatments and options for TBN ? In face last time I saw an oncologist from the Christie at my local hospital Tameside she was mentioning my diabetes ???DIABETES!! I looked at my husband and he looked at me absolutely gobsmacked, I then said 'But no one has mentioned this to me', she then looked a bit flustered and left the room to go next door. Came back in and actually laughed because she was reading someone elses notes!!!!Needless to say I don't really have much confidence in her, and during my treatment she was on maternity leave so in fact have only met this woman twice...each time as a follow-up. Gosh, when I read this back all I seem to do is moan. But at the same time know that everyone on here will completely have empathy with my sorry tale. Love to everyone xxDimwidx
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Hi to everyone,
Sylvia congrats on 10 years it gives us great hope. Also the flowers are beautiful. The weather combination means that there is a lot of growth here, but our flowers seem to be behind a little. Some seedlings haven't survived and some the labels have become unreadable because of the watering.
Hanieh,
Thank you for your prayers especially at this important and spiritual time . You are a very handsome family.
Dimwid,
I was sent for a Dexa scan because of hip and back pain. My gp referred me. I have already had an MRI and a bone scan in the past 2 years because of pain as a precaution. Fortunately the bone scan was clear and the MRI showed that I had a tear that was the cause of my shoulder pain. I still attend a pain specialist but have graduated from strong pain medication.
Other people at my support centre have had Dexa scans after treatment, but frustratingly they are mostly private patients. I had mine done privately or I would have had to wait up to 18 months.
My Dexa scan shows that I have osteopenia in my spine but not in my hips.
I just need to take vitamin d and calcium combined.
Sometimes I forget that pre cancer I had aches and pains and sometimes fatigue that appears to run in my family. Perhaps treatment has exacerbated them but as my sisters tell me I was never a night owl and was in bed early and up early.
We had fun doing the modelling and I think that we were the shops best customers, each of us buying something that we modelled.
The Pink Angel ball was a fabulous night and lovely to see all the young people looking so smart and glamorous. A guy from our centre won the most dapper man....and he was, Sadly although you wouldn't tell .- he is terminally ill but determined to live every day.
There was champagne and I danced alot - better than any pain medication or physio.
On a more serious note, our centre has started a 7 point petition for cancer patients and survivors. If I can I will try to post the link. I am writing this on my tablet and am not fully au fait with it yet.
It will be our main focus this summer and will be launched at our 4 th July party.
I am tidying and cleaning for my sisters visit on Saturday. Leighanna has just left and so I can get stuck into it.
Good luck to those in treatment and to those starting radiotherapy. If you can have a little treat once a week as a reward for completing your sessions. X
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The link for our petition is
www.ipetitions.com/petition/better-cancer-support-ireland
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Hello Peter,
I was glad to know that you and Liz are both fine and I was glad to know also that you had a good holiday in Iceland. It was unfortunate that Liz and Taylor caught a virus on the way over but at least they made a speedy recovery. You are certainly getting around and seeing some interesting sights.
It was very sad indeed to learn that Lulu had died. She was obviously a very special person. Jackpot (Gill) kept us informed about her. We have not heard from Gill in a while so I do hope all is well with her. Gill introduced me to Karl Pilkington and I really enjoy his series. They are funny but profound and I always think of Gill when I watch them. We are both great fans of John Bishop too and I am watching his show on Saturday evenings. He has some very talented people on it.
I was so sorry to read that another young woman had died on the day of Lulu's funeral. The experts tell us that finding the cancer early improves a person's chances of survival, but I am not convinced. I do not think any of us can know how we are going to fare once we are diagnosed. It does seem that the younger you are the more aggressive the cancer tends to be, and, of course, it has more time in which to recur and spread. It is about time the experts found out what is causing aggressive cancers in young people. They should also stop saying it is a disease of the elderly. It is so tragic to have all these young women dying and their young children being left with no mothers.
I was so sorry to read that Liz's friend with ovarian cancer is in hospital and is going to die. Ovarian cancer is one that seems to have a high mortality rate.
It is hard to believe the mess up that Liz has been through with HRT. I was glad to know she is on the right kind of HRT now. We hear a lot of negative reports about HRT and I thought doctors had stopped prescribing it. I do hope she is being closely monitored.
I cannot believe that you have been banned from going into the doctors with Liz. I think this is absolutely shocking and I do not believe it can be legal. You have the right to question them as much as you like and to share your knowledge with them. Doctors are not Gods. They do not know everything and they should listen to patients and their loved ones. I think we should all question what our doctors tell us and I am certainly not afraid to speak my mind. I would not accept my husband, Raymond, being banned from being with me at all my appointments. I think two minds listening to what a doctor is saying is better than one. If I were you I would insist on being with Liz.
It is good news that Liz is now approaching four years since she discovered a lump and I am glad to know that you are starting to relax a bit when Liz has symptoms that make you anxious. That is how it needs to be.
Continue looking for new experiences and planning holidays. Live every day to the full. We get only one life.
Thank you for your kind words about my ten year survival.
We now have three men on the thread, Michael, Tom and you.
Wishing you all the best.
Sylvia
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Hello Hanieh,
I shall continue to try to find information about the drug Diphereline. Do you know whether this is the brand name or the generic (chemical) name? I think we should get to the bottom of why this drug is being offered in the treatment of a young woman who has recently finished treatment for triple negative breast cancer?
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Hello maryna8 (Mary),
I was interested in your post about tumour markers. When I first discovered bc.org and was reading Tns I kept reading about tumour markers and whether they were high. I did at one point ask my oncologist whether I should be having blood tests to monitor these tumour markers. She said that she did not believe they were necessary as they varied. We have to remember that cancer cells are part of our make up and they are circulating in our body all the time. Our immune system snaps them up and we develop cancer when our immune system fails to snap them up, they escape and over time form into tumours.
I would not worry about them. You have completed your cancer journey and need to carry on with a normal life. If you feel unwell or have concerns you can always request such a test. As for myself, I do not quite believe in all these numbers that we get thrown at us. In this country at present the GPs are busy trying to put everyone on statins and frightening patients into accepting them. They seem t ignore all the terrible side effects of statins. I try to stay away from doctors as I think they are dishing out too many pills and probably subjecting patients to too many tests.
I check my remaining breast and under the arms every month, feeling for anything unusual. I check my mastectomy scar for any sign of a rash, since my oncologist told me that could be a sign of a recurrence. I try to be my own doctor. I keep on a healthy diet, keep physically and mentally active and keep informed. I read anything from Cancer Active and read the magazine What Doctors Don't Tell You every month. I keep drinking my green tea, eating my bitter apricot kernels and just hoping for the best.
Who is asking you for your cancer markers and why?
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello Dimwidx,
I was glad to know you had found the bitter apricot kernels and you are alright with them.
There are various scans that are used in hospitals. They are CT scans, MRI scans, PET scans, ultrasound scans, bone nuclide scans and DEXA scans. They are used for lots of different diseases, not only cancer.
A DEXA scan is one that is used to look at the bones to find out whether a person has osteopenia or osteoporosis of the bones. These two diseases are a weakening or thinning of the bones, which could lead to breaks or fractures. They are caused by different things and can develop because of cancer treatment. A DEXA scan is relatively safe and I would think it prudent to have one before and after cancer treatment. Like this, you can see whether your bones are normal before treatment, not normal after treatment and conclude that treatment has probably caused the problem.
A blood test can show up high calcium levels in the blood and this can indicate that the cancer may have spread to the bones, but not necessarily. The high calcium may have been caused by something else, such as an over active parathyroid or thyroid gland.
If it is thought that the cancer may have spread to the bones you will be given a bone nuclide test to see if the bones are clear. There is nothing to fear from this test but it is a bit long and you will be radioactive for a short time afterwards. I have had three DEXA scans to monitor my osteoporosis which was caused, I think, partly by my breast cancer treatment and also by an over-active parathyroid gland discovered when my breast cancer was diagnosed. Surgery cured the over-active parathyroid gland.
I had a CT scan before and after treatment and a bone nuclide scan before and after treatment.
When you have a routine blood test to monitor cholesterol etc. it is routine to measure the calcium level.
I was horrified but not surprised to read that your oncologist had mixed up your notes. I think this happens quite a lot. It is very important for a patient to take complete control of her treatment. You are just one person and must keep an eye on everything that concerns you. Your doctor is looking after loads of patients and can easily make a mistake. Be vigilant.
I do not think you are moaning. Keep asking as many questions as you like. Knowledge is power.
Fond thoughts.
Sylvia xxxx
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Hello Lindsay,
Thank you for your kind words about my ten year survival and about the flowers.
I was so glad to know that everything went well for the modelling and the Ball. I was glad to know you had an enjoyable time.
I was very interested to know that your centre had started a 7 point petition for cancer patients and I am going to have a look at it.
I was interested to know that you are writing on your tablet. This seems to be the way that people are going. If it is not the tablet it is the smart phone! I am still using a large screen laptop (18") and do not like the idea of all these small screens.
I do hope you will have a good time with your sisters.
Fond thoughts.
Sylvia xxxx
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