Calling all triple negative breast cancer patients in the UK
Comments
-
Hi mumtobe!
Hospitals seem to vary in their pre/post surgery procedures.....
I did not have any scans either before or after surgery (I also had 3 nodes positive); as far as I can remember, I got a chest x-ray at some point and also an ECG.That was it!
I was also told that scans would only be given after treatment if there were any symptoms.
My check-ups were always just 'prod and poke' and a yearly mammogram, which went to 2-yearly after about 8 years (at my insistence - I did not want so much radiation).
I don't think you should be concerned - I know that what happens to other people always sets us thinking and worrying, but your care seems to be fairly standard.The question is - why did your friend not have her 'suspicious nodules' further investigated at the time; and knowing that they were there from a CT scan obviously did not help her.
Try to set your mind at rest; I know this is often easier said than done.
0 -
Sylvia, thank you for all the imformation.
Sam, so sorry to hear about you father. It must be a difficult time for you.
0 -
Good morning ladies, so sorry Its been a week since my last post. I have been so busy trying to figure out schooling and volunteering at the cancer clinic here. I start volunteering next week and am very much looking forward to giving back. About the conference it was amazing I have been to two parts so far the first was a 5 day intense seminar dealing with our negative thought patterns and how they affect every aspect of our lives. The colours seminar was the second one and it was 3 days and it has to do with different personality types, not the colours that look good on you lol but I do remember back in the eighties when that was all the rage. Basically it talks about the 4 different colour types Blue,Green,Gold and Orange and the different ways we interact and deal with the world, ourselves, others and why. It was really interesting and help me to understand my own brain lol. I am a blue/green which is emotional thoughtfull the blue and logical the green so I can logically understand a situation and gather all the information I need to understand it but it doesnt always match up with my blue emotional side of my personality, I thought I was going crazy lol that I could still have so much sorrow over my x abusive narcassistic relationship knowing clearly that it was unhealthy the abuse cycle the narc tendancies that he would never change etc etc. It was extremely helpful, there are a lot of very interesting books out there on this subject. The third part of the course is in January and its for 3 days also and it focuses on the dark side of our colours and our mission in life. It has been a wonderful growing experience. Self knowledge and understanding he human condition is truly a passion of mine. My ultimate goal is to become a life coach.
Anyhow hope I didnt bore you all, lol. Have a great day.
Oh and NO I dont like the cold snowy alberta winters
. I LOVE THE SUNHugs Kymn
0 -
Thank you Sam for your kind words, gives me a bit of reassurance. I have no idea why they didn't investigate further with the lady I spoke with yesterday. They were suspicious but according to what she was told, they don't treat cancer to lung/liver until it gets to a certain stage. Don't know how true that is but thats what she was told. I was told that unless I present with symptoms I won't be getting further tests but what scares me is that this lady had cancer in her lung and had no symptoms.....when does it become too late! Very scary to not know what's going on inside your body but I guess as a human being we all live with that uncertainty.
0 -
Hello sam52
Thank you for your post. I was glad to know that you find the posts informative.
I do not understand why you have not received the e-mails from CANCERactive, because if you click on CANCERactive, enter your e-mail address and click on Add me to the News List, that should do it. This is what I did and the e-mails arrive very regularly at my e-mail address. The CANCERactive e-mails are always very informative and I read through one as it arrives and then click on the titles underlined and read information in more detail, and then post the link etc. on our thread.
I have been thinking of you a lot and thought that you were probably very busy looking after your father. I really understand that, as I had to do a similar thing with my mother. Where I live in Exmouth, there are a lot of elderly people who end up needing care. They start off with carers coming in morning and evening, but I have seen first hand that this care is inadequate, especially if it is funded by the NHS. I have looked after some of the neighbours here and have dealt with carers. They are usually very young girls who have less than half an hour in the morning and the same in the evening and can do virtually nothing. Often they do not arrive on time because they have been delayed by other visits. They also come too early in the evening and put patients to bed. I think when elderly people cannot cope they are probably better off in a retirement home or a nursing home, but you have to make sure they are in a good one.
Often, you can find a place by arranging respite and then making it permanent.
I do hope you will be able to find the best arrangement for your father, so that he will be safe. It is so dangerous to be alone in your home, have a fall and be lying there for hours waiting for someone to come to your rescue.
I have just had a look at the thread that you started, Parathyroid disease and breast cancer, which I had not looked at in a while. You just never know when a thread is going to come alive after a while with a new post. I found that latest post extremely interesting and it has got me started wondering again about this connection between hyperparathyroidism and breast cancer and about which one comes first. I am sure you will remember all our discussions about this and all our PMs as we both went through surgery for a parathyroidectomy. I shall read the post again in detail and do another post tomorrow. We need to keep that thread going, so I have put it as one of my favourites. I am also trying to keep two other threads going. One is the High Calcium thread on the forum Not diagnosed with recurrence or metastases but concerned. You will remember we had lots of posts together on there. I am also reactivating a thread started by someone back in 2009, entitled Not a typical triple negative. This thread is about older women diagnosed with TNBC because it is supposed to be a breast cancer of younger women. From what I have been reading, TNBC seems to affect all ages but it could well be that much younger women are in the majority.
I also have no idea whether my bone density has improved. I had a DEXA scan in February 2010 about three months after my parathyroidectomy in November 2009, and I had one before that in March 2009 when I became concerned that I had lost a bit of height. Before that everything had been normal since I was diagnosed with hyperparathyroidism when diagnosed with breast cancer in 2005. My consultants, who were busy treating my breast cancer, seemed to have forgotten about the hyperparathyroidism and I had not worried about it until 2009. It was then that the consultant told me to have the surgery.
There was a slight improvement in the bone density reading in the 2010 DEXA scan, but osteoporosis was still there.
It will be three years in January 2013 since I had that second DEXA scan. I was told that you can have one only every five years. I am beginning to think that I should try to push for one. With the NHS we never have preventive treatment. I am still concerned about taking calcium tablets, even though I take only one a day. I have read a few other posts where women have had high calcium blood serum, been taken off the calcium supplements by their consultants and everything became normal. They were apparently told to take only vitamin D.
We are fine here in Exmouth, but very fed up with the weather. At least, for the past two days, it has been dry, sunny but very cold.
I shall do some more posting tomorrow.
Take care.
Love.
Sylvia xxxx
0 -
Hello Mumtobe (Carol)
I was so sorry to read that you are going through some anxiety and wanted to reassure you. I was glad to know that everything went well with your third Taxol treatment and you must focus on that. You have to get yourself through your chemotherapy and then take it from there. You must remember that all our breast cancers are individual and that we can all take different paths. First of all you do not have hormone positive breast cancer. It is best not to listen too much to other cases if it is going to frighten you. Those suspicious nodules that showed up on the CT scan should have been investigated at the time.
As for scans, there does not seem necessarily to be anything standard. All I can say is that I had a CAT scan and a bone nucleide scan before and after my surgery and I have not had any scans since then, except for an x-ray arranged by my GP a few years ago when I had a bit of a cough and I was worried. Thankfully everything was all right.
If you feel you want peace of mind, you can ask your consultant about having these scans when you have finished your chemotherapy and radiotherapy. You can say that you want them for peace of mind.
I had mammograms every two years after finishing treatment and physical check ups every three months for a few years and then every six months. I am still having the six-monthly check ups alternating between the oncologist and the breast cancer consultant.
I hope this will help and please try to relax and deal with one thing at a time.
Fond thoughts.
Sylvia xxxx
0 -
Hello BernieEllen and Kymn
I have not forgotten you but have run out of time. I shall continue tomorrow.
Best wishes
Sylvia xxxx
0 -
Hello Kymn
Thank you for your post. I can see that you have been very busy this last week.
When you mention schooling, are you talking about organising some studies for yourself or do you have children? I am not sure how old you are, but you look very young.
You are doing a good thing volunteering at the cancer clinic and I hope all goes well for you. Let us know about your experiences there. I do understand that you want to give something back because that is why I started this thread.
I was interested in what you said about your conference and you obviously got a lot out of it. I am sure it must have been interesting during that five day seminar to learn all about negative thought patterns and how they affect every aspect of our lives. I suppose we have to try all ways to look at the glass half full rather than the glass half empty. There are periods of great stress during our lives but somehow we have to find the strength to get through them, dust ourselves down and carry on with optimism.
I was intrigued by the second part of the seminar about different personality types. It is interesting to have them graded by colour. I was glad that the seminar helped you understand more about the abusive and narcissistic relationship you were in. Getting over a broken relationship is always a difficult and painful time, even if there were a lot of problems and a lot of unhappiness. You go through a grieving process, I think, similar to the grieving you go through when someone dies.
Next time I am in my favourite bookshop I shall keep a look out for these kind of books.
I can understand your passion for self knowledge and understanding the human condition. I think it is very important to know ones self and also to try to work out how other people see you.
I do hope you will reach your ultimate goal of becoming a life coach.
Thank you for a most interesting post and keep up the good work.
Best wishes
Sylvia xxxx
0 -
Hello BernieEllen
I was just wondering how you got on this week with your lymphoedema.
How are things going in Ireland?
Best wishes.
Sylvia xxxx
0 -
Hello everyone.
To all you faithful posters, BernieEllen, linali (Lindsay), Mumtobe (Carol), Chatterbox2012 (Michael), FernMF, sam52, Kymn, thank you for the effort you put in. Remember you can post about anything that is on your mind. Let us know what you are reading, what music you like, what you are watching on the television, what is going on in your country or the UK. Have you taken any interest in the problems at the BBC, the Leveson report, a minimum price for alcohol, the new Archbishop of Canterbury, the new Governor of the Bank of England, a Canadian, all the hardship around the world, the economy and the poverty here and elsewhere.
Have a good weekend.
Best wishes.
Sylvia
0 -
Hello sam52
I have just reread the posts on the thread you started and the details about a poster called Sue. She has been through a really bad time.
I have just been back to parathyroid.com to look at some information. I shall read it and let you know if I have any comments.
Was it on parathyroid.com that we found the Swedish research and the connection between breast cancer and hyperparathyroidism? I would like to look at it again. I remember sending it to my GP, consultant and oncologist, as well as Professor Karol Sikora, who was most interested in it.
Love
Sylvia xxxx
0 -
Good Morning Ladies, well at least its still morning here
. Sylvia I admire how you take the time to respond to all who post here with such thoughtful insight, a very admirable quality. I am 43 now and have two children my son is 16 and my daughter is 10 such sweet children I have truly been blessed with them and knock on wood no troubles to date When I left my x FAH...I had to relocate with the children and am now on EI (assistance from the govt) until I find work or they retrain me and I start down a new career path which is the way I am going. I figure I have paid into the system for a long time now I might as well take advantage of some schooling to help further my career. I have learned that if you do what you've always done you'll get what you've always got. I am starting a new chapter, its a bit scary I must admit but so much better than the alternative.Hope you all have a fabulous weekend full of love and laughter
Hugs Kymn
0 -
Hi, Just a quick post as I am up early to put washing on,who would have thought that one 2yr old boy could create so much.
Leigh is home but has only been in bed 30 minutes. He is still wound up after finishing a 50,000 word novel writing competition.
The centre Xmas party is on this afternoon and Mary who runs the centre has no car at the moment and needs to be picked up at 8 15 to shop for the last few items,most importantly lots of fruit for the mulled wine. The men's group is meeting first and then the party starts at 2. We are out in the country and people are nervous of the road on a frosty winters night and so this year it was decided that afternoon would be best. I shall bring Oskar for a while as my friends teenage daughter is keen to see him.
We are doing our first public "performance" as a small choir later on,after a glass of mulled wine! We are not note perfect but are very enthusiastic.
When I first registered for the canceractive news letters I initially had a problem because of having no post code but they e mailed me to sort it out and I have been getting the news letter regularly.
I read the articles re drugs and grapefruit. I was familiar with the grapefruit contra reactions because I am on lipitor and cannot have grapefruit anymore as it affects the absorbtion.I always loved grapefruit especially the ruby or pink ones.
I also had trouble with my veins during chemo and used to travel to each session with either a hot water bottle or hot wheat bag around my arm to heat and plump them up.
I see that Miracle on 34th Street is on later, that and a Christmas Carol and A Wonderful Life are some of my favourite Xmas films.
I usually put my tree up nearer to Xmas because the cat goes crazy and runs up it and then bashes the baubles but I thought that it would be lovely to do it with Oskars help. He is such a cutie and if I had a little red and green outfit he would look just like a little elf. I know I have a Granny's biased but he has such big brown eyes and a cheeky smile.
Ireland has been in the news for the past week or so and not in a good way. It is so sad to hear of a young woman dying in those circumstances and doubly so for her husband who lost both his wife and child. People here are very divided re the laws but I know that Leigh joined many, many people in a candle lit vigil.
I am so looking forward to this afternoon as I have already turned down 2 invitations because they were at night and I am afraid that I am so exhausted chasing round after Oskar that all I want to do is go to bed with a good book when 9pm comes around.
There are 2 wonderful women in particular who are very ill but are determind to come out to the centre party for an hour this afternoon. It makes you even more aware that if possible you should take pleasure in the good and happy things in your life.
Sending thoughts to you all and will be singing for all of you today.
PS sorry about the length, it seems so long since I had this much time on the computer.
0 -
Good morning everyone. We had the bike club children's Christmas party yesterday. Thirty six children, I am still in shock.
My hospital appointment went relatively well. I have to rest more and try and put on a bit more weight. My immune system is still compromised so I am permanently cold and that does not help the lymphedema.
Still waiting to hear about my disability claim.
Very concerned about the forthcoming budget (wednesday) and the financial effects. I know that I am fortunate enough not to have a mortgage or dependants so that is not a worry. Some of my friends are seriously struggling, one of them is losing her house in January and she has two children to support. Her ex husband left her in dire financial straits and he swans around the world without a care. Sometimes I wonder if there is any justice.
Did not mean for this to turn into a rant.
Wishing you all a safe and happy weekend.
Bernie.
0 -
Thank you Kymn, linali, and BernieEllen, for your interesting posts. I shall be doing some posts later on today.
Fond thoughts,
Sylvia.
0 -
An ambitious yuppie finally decided to take a vacation. He booked himself on a Caribbean cruise and proceeded to have the time of his life. ... at least for awhile. A hurricane came unexpectedly. The ship went down and was lost instantly.
The man found himself swept up on the shore of an island with no other people, no supplies, nothing. Only bananas and coconuts. Used to 4-star hotels, this guy had no idea what to do.
So for the next four months he ate bananas, drank coconut juice, longed for his old life, and fixed his gaze on the sea, hoping to spot a rescue ship. One day, as he was lying on the beach, he spotted movement out of the corner of his eye. It was a rowboat, and in it was the most gorgeous woman he had ever seen. She rowed up to him.
In disbelief, he asked her: "Where did you come from? How did you get here?"
"I rowed from the other side of the island," she said, "I landed here when my cruise ship sank." "Amazing," he said, "I didn't know anyone else had survived. How many of you are there? You were really lucky to have a rowboat wash up with you."
"It's only me," she said, "and the rowboat didn't wash up, nothing did." He was confused, "Then how did you get the rowboat?". "Oh, simple." replied the woman "I made the rowboat out of raw material that I found on the island, the oars were whittled from Gum tree branches, I wove the bottom from Palm branches, and the sides and stern came from a Eucalyptus tree."
"But-- but, that's impossible," stuttered the man, "you had no tools or hardware, how did you manage?" "Oh, that was no problem," replied the woman, "on the south side of the island there is a very unusual strata of alluvial rock exposed. I found that if I fired it to a certain temperature in my kiln, it melted into forgeable ductile iron. I used that for tools, and used the tools to make the hardware.
But, enough of that," she said. "Where do you live?" Sheepishly he confessed that he had been sleeping on the beach the whole time. "Well, let's row over to my place, then" she said. After a few minutes of rowing, she docked the boat at a small wharf. As the man looked onto shore he nearly fell out of the boat. Before him was a stone walk leading to an exquisite bungalow painted in blue and white.
While the woman tied up the rowboat with an expertly woven hemp rope, the man could only stare ahead, dumbstruck. As they walked into the house, she said casually "It's not much, but I call it home. Sit down please; would you like to have a drink?"
"No, no thank you" he said, still dazed, "can't take any more coconut juice." "It's not coconut juice," the woman replied. "I have a still." How about a Pina Colada?" Trying to hide his continued amazement, the man accepted, and they sat down on her couch to talk. After they had exchanged their stories, the woman announced, "I'm going to slip into something more comfortable. Would you like to take a shower and shave, there is a razor upstairs in the cabinet in the bathroom."
No longer questioning anything, the man went into the bathroom. There in the cabinet was a razor made from a bone handle. Two shells honed to a hollow ground edge were fastened on to its end inside of a swivel mechanism. "This woman is amazing," he mused, "what next?"
When he returned, she greeted him wearing nothing but vines --strategically positioned-- and smelling faintly of gardenias. She beckoned for him to sit down next to her.
"Tell me," she began, suggestively, slithering closer to him, "we've been out here for a very long time. You've been lonely. There's something I'm sure you really feel like doing right now, something you've been longing for all these months? You know..." She stared into his eyes.
He couldn't believe what he was hearing: "You mean--?", he replied, "...I can check my e-mail from here?"0 -
Hello BernieEllen
Thank you for the joke. That gave me quite a laugh! It just shows you what is happening to us all.
I am not a computer addict and I do restrict my use, but I did read that there are people out there who cannot be without their mobile phones and have withdrawal symptoms if they do not have them and keep checking for text messages during the night!!!
I hope you have now recovered from the Christmas party with thirty-six children. I am sure you did a great job with them.
I was glad to know that your hospital appointment went relatively well.
I hope you will heed what you have been advised and that you will try to get more rest. If I were you I would set some time aside during the day just to sit and relax and perhaps dream a little.
Did you loose a lot of weight during treatment? I can understand that your immune system is still compromised as it is not that long ago since you finished treatment. Feeling cold could be due to bad circulation, so some stretching exercises might help. Ginger tea is always very warming. Perhaps you need to put a warm pad on your arms etc., or have a hot water bottle wrapped in a towel.
I do hope you will soon hear about your disability claim and that you will have good news. I have no patience with all the bureaucratic inertia and nonsense that we have to tolerate, not to mention analysis paralysis!
Like you, I am not looking forward to the pre-budget autumn statement here in the UK, which is also on Wednesday. I regularly watch Prime Minister's question time from Westminster and am appalled by the churlish and childish behaviour, mainly from the men. Our Chancellor of the Exchequer, or part time Chancellor as he is known, is going to utter more doom and gloom and tell us of more cuts and longer to wait for recovery. I do not like our Eton posh boy, otherwise known as George Osborne, multimillionaire and Bullingdon Club boy. We are definitely NOT all in this together as we are constantly being told.
This morning, outside our local supermarket, there was a food bank set up asking for basic goods for the needy. It is ironic that people are going into the supermarket to buy food and then donating some of it to the food bank. That supermarket could afford to give away bags of food. They were announcing that they would up by 30% whatever was donated. They are not silly. They are pushing you to buy more which always translates by bigger profits. I asked them once what they did with all the reduced food which did not sell. I was told they threw it away and I told them that was scandalous.
I feel so sorry for your friend whose is going to lose her home in January and has two children to support. Where will she go? Why do so many men behave so badly? I have heard similar tales on the TNS thread, especially of husbands or partners leaving their wives because they cannot deal with the breast cancer diagnosis. I really feel that there is no justice in this world.
This is not a rant, Bernie. There is so much that is wrong in the world.
I think it is very important to talk about all these things and that it is good therapy for all breast cancer patients to let off steam and get their feelings out in the open.
Best wishes.
Sylvia xxxx
0 -
Hello linali (Lindsay)
Thank you for your post. It was most appreciated as I know you are busy with Oskar.
How is Leigh getting on with Oskar? I am amazed that Leigh has written a 50,000 word novel for a writing competition. I do hope he has some success.
You are such a busy lady. I do hope everything went well with the Christmas party at the centre. You are lucky to have such a centre. It is so important for human beings to socialise with one another. There are so many lonely people around. I am always amazed at the number of people living alone. Apparently there is a huge number of people in the 60 plus age group that are splitting up.
I hope all went well with the choir.
I was glad to know that you have signed up for the CANCERactive newsletter. There is so much information in each newsletter.
I would be interested in trying some of the supplements, such as grapeseed, resveratrol, quercetin, and curcumin, but they are so expensive, even in a High Street shop, such as Holland and Barrett.
Does the fact that you are on Lipitor mean that you cannot have grapefruits at all? I also love pink and red grapefruits. I know that Lipitor is a statin, atorvastatin. I know that statins are getting a very bad write up and I was wondering if there is any connection with the statin and your pains. I know quite a few people on statins who suffered from cramps and pains, which disappeared when they stopped taking the statins. Apparently atorvastatin can cause muscle pain, inflammation and muscle damage. I think when taking drugs, you have to be extra vigilant, because I think medication can be dished out without taking into consideration what effect one drug may have on another.
I hope you enjoy your favourite films that are on.
I did read the story about the young woman dying because she was refused an abortion. I do think that an abortion should be a purely medical thing and nothing to do with religion. I admire Leigh for going on that candle lit vigil.
I do agree that we have to take pleasure in the good and happy things in our lives. I know that I get very angry with all the injustices that go on in the UK. We are such a class-ridden society and there is so much inequality. We are governed by millionaires who have no inclining of what it is to live on a tight budget. The job-seekers allowance here is about £64 a week and the powers that be say that is enough to live on! They would spend more than that on a bottle of wine and think they are entitled.
I hope you sang your heart out for all of us today!
Keep well and keep happy.
Sylvia xxxx
0 -
Hello Kymn
Thank you for your post and your kind comments.
I was glad to know that you are blessed with two nice children. You have certainly been through a tough time and I hope the future will bring you better things. I hope you will manage to find work and/or retrain and that you will be on the path to a successful career. I do not know what the job situation is like in Canada these days. Here in the UK it is dire and I feel sorry for young people who are starting out in life. I feel that all the good work that was done here after World War II is unravelling and that we are going backwards.
I hope the assistance that you get from the Canadian Government is better than it is there.
I feel that you are very determined and that things will work out fine for you. I admire your courage.
Best wishes.
Sylvia xxxx
0 -
An attractive blonde from Cork, Ireland, arrived at the casino. She seemed a
little intoxicated and bet twenty thousand dollars in a single roll of the
dice.
She said, "I hope you don't mind, but I feel much luckier when I'm
completely nude." with that, she stripped from the neck down, rolled the
dice and with an Irish brogue yelled, "Come on, baby, Mama needs new
clothes!"
As the dice came to a stop, she jumped up and down and squealed... "Yes!
Yes! I won, I won!"
She hugged each of the dealers, picked up her winnings and her clothes and
quickly parted.
The dealers stared at each other dumbfounded.
Finally, one of them asked, "What did she roll?" The other answered, "I
don't know - I thought you were watching."
MORAL OF THE STORY
Not all Irish are drunks, not all blondes are dumb.....
But all men...Are men!0 -
Hello sam52,
I hope all is well. I wanted to let you know that I spent a lot of time yesterday printing out a lot of information about hyperparathyroidism, breast cancer, osteoporosis etc on parathyroid.com.I hope you will be able to read it, so that we can discuss it. It made me think that the Dexa scan I had was inadequate and that there is a link between hyperparathyroidism and breast cancer and that the hyperparathyroidism comes first. I also think we should be more closely followed to see what is happening with our osteoporosis after our hyperparathyroidectomy. The site does say that osteoporosis after hyperparathyroidectomy is reversible most of the time. Of course we have had a double whammy because of our breast cancer treatment that also causes osteoporosis, and I do not know whether this is reversible.
The link is http://www.parathyroid.com/
On this site there is all the information you could possibly want.
Wishing you all the best.
Love
Sylvia xxxx
0 -
Hello sam52
I thought I would refer you to the section on parathyroid.com that has particular reference to osteoporosis. It is entitled Osteoporosis and Parathyroid Disease (Hyperparathyroidism).
There is a particular section entitled How to read your Bone Density DEXA Scan. It starts off “If you have hyperparathyroidism then you must know what your bone density is so you can see how much damage has been done to your bones by the parathyroid tumour, and so you can compare your bone density scores after your parathyroid tumour has been removed, so you can see your bones get better every year.....”
It then goes on to show you the bone density scale that is used world wide. It further goes on to give details of the readings you should have. It says a good quality DEXA scan will have at least ten measures of bone density and that the best scans have twenty or more individual readings. The worst have only two. I have had a look at my scan results from the hospital and saw that the readings taken in 2009 and 2010, before and after the parathyroidectomy have, you guessed it, just two readings! It says that if this is the case the scan should be redone, and, I am assuming, done properly.
I hope this will be useful. You must be looking forward to the end of term. There can only be a couple of weeks left.
Hoping you will read these posts.
Love
Sylvia xxxx
0 -
Hello everyone
I hope your week is going well. If you have been reading the recent posts, you will see that I have been mentioning hyperparathyroidism (an over-active parathyroid gland). Please do not confuse with the thyroid gland. An over-active parathyroid gland causes calcium to leach from the bones into the blood stream. There is research showing a connection between hyperparathyroidism and the development of breast cancer.
You might like to read more, in particular about high blood calcium (too much calcium in the blood). The link is:
http://www.parathyroid.com/high-calcium.htm
It is never normal, apparently, to have high levels of calcium in the blood and even slightly elevated levels should be checked out. The information I have read states “Over 99.8% of all people who have a blood test that shows too much calcium will have a parathyroid problem. In fact the number is closer to 100%”.
You need to get your PTH (parathyroid hormone) level checked. If you have a parathyroid problem that is not treated you end up with osteoporosis.
That is enough for today.
Best wishes.
Sylvia.
0 -
Hello Mumtobe,
I was thinking about the scans I had pre and post treatment , A CAT scan and a BONE nuclide scan.
I may have had them because a blood test showed elevated blood calcium. Sometimes this can be a sign of spread to the bones, which is why I also had a bone nuclide scan, in addition to a CAT scan. My breast cancer consultant is also an endocrinologist. She tested for elevated parathyroid hormone level, which I had and was able to diagnose an over active parathyroid gland. Along with the oncologist, I think they needed to find out whether my breast cancer with a large tumour, had spread to the bones. Fortunately for me it had not. I suppose they did the scans again post treatment to see that everything was clear.
I hope all is well with you. Treatment seems to vary from hospital to hospital as regards scans and check ups, but the pool of chemotherapy drugs seems to be the same.
Wishing you well.
Sylvia xxxx
0 -
Hi, up early to catch up on things.
Oskar had a bad night so hope he sleeps on. He loves the tree and all the sparkling lights.
Still cannot get him to be gentle with the cat.
I didnt sleep to well either as I am dreading today's budget and all the cuts it will bring. I cannot work out how governments think that they can stimulate an economy by taking more money from the middle people who are likely to spend on their homes. They have created no jobs and once again will hit the old and defenceless. They are even talking of taking away the grant that people can get to help with a funeral and the oap home package is to be cut .
Once again the wealthy will escape. I admire the people in continental Europe who take to the streets en mass to protest. At least it shows they have some fight in them left.
This is Oskars last day with us. His daddy is coming tomorrow. I will miss him so much but will spend Friday just chilling and winding down.
Hope that everyone is warm and safe.
0 -
LINALI - your latest post is what at least half of we USA citizens are feeling - - we "middle" class people are paying for all the loafers, and "obamacare" hasn't kicked in any benefit YET to we middle classers . . . this world is a scary place to live. My hubby has worked for 46 years to be "comfortably" retired, and I still have 10 more years to work, and NOW they are talking about raising the medicare eligibility age . . . I can't NOT work without health insurance. I happen to work for an EXCELLENT company that pays 90% of the premium each month . . . but my portion is going up come January to more than $240/month . . . that's a big chunk. This year, I have met my "out-of-pocket" maximum of $6,500 . . but come January, we are back to paying the co-pays, and 20%'s, etc. . . . Wish and hope that SOMEONE would have answers for us hard-working people!
0 -
Hello everyone
I thought you might be interested in this post that I have just posted on the High Calcium thread in the forum Not diagnosed with recurrence or mets but concerned.
I know that you have to be careful about websites on the internet, but in my own case I really listened to my breast cancer surgeon who is also an endocrinologist and has a lot of experience. She will always go that extra mile and I really trust her.
She diagnosed my hyperparathyroidism at the same time as my triple negative breast cancer back in 2005. She told me that by the size of the non-malignant adenoma on my upper right parathyroid gland (same side as my breast cancer), that it had been there before my breast cancer started. She told me that after my breast cancer treatment was over and that I was fully recovered that I would need to have surgery to remove the adenoma and that then I would be considered cured of my hyperparathyroidism and that the parathyroid hormone and calcium would normalise, and that this would be quick.
I had general anaesthetic and full surgery in 2009. She explained to me why she did not do minimal invasive surgery. I had the surgery one day and left the hospital the next and my parathyroid hormone and calcium were already normalising. I had no bad effects whatsoever and everything has remained normal to date.
I had a DEXA scan before this surgery and osteoporosis was confirmed. Four months later I had another DEXA scan and there was a slight improvement. In our health system I have not been allowed to have another DEXA scan since then, but I am going to push for one now. Apparently osteoporosis caused by hyperparathyroidism is reversible in most cases. I am not sure what will happen in my own case as my osteoporosis has probably been compounded by the chemotherapy and radiotherapy from my breast cancer treatment.
I do believe my endocrinologist and parathyroid.com when they say that the only way to treat and cure hyperparathyroidism is through surgery. All the time you delay, as I did for a while, the adenoma will continue to grow and the parathyroid hormone will increase or be variable as it tries to deal with the calcium that is leaching from the bones into the blood stream. The only function of the four parathyroid glands is to control the level of calcium in the body, and once one or more of the glands gets an adenoma the parathyroid gland can no longer control the parathyroid hormone. Often the other three have gone dormant, but start to function once the adenoma has been removed.
I had a sestamibi scan before surgery which enables the endocrinologist to know exactly where the four parathyroid glands were located. My endocrinologist did the full surgery because she liked to look at the other three as well. I have no scar on my neck where the surgery was done and my voice was not affected.
By the way, apparently if you have osteoporosis as a result of hyperparathyroidism, bisphosphonates are of no use. I would not take them anyway. I am dealing with my osteoporosis with calcium supplements, magnesium and vitamin D. I am cautious about the calcium supplements as I think they may do more harm than good.
I do not know if you measure parathyroid hormone in the same way as in the UK, but here the normal range of PTH is 1.2 to 7.6. Mine was way above that before surgery. My calcium was only slightly elevated but that is just as bad as it being high.
It is interesting to read together the High Calcium thread and the Parathyroid Disease and Breast Cancer thread (in the IDC forum). You might also like to compare to parathyroid.com the following link to Medscape – Hyperparathyroidism: http://emedicine.medscape.com/article/127351-overview#showall
Best wishes.
Sylvia
0 -
Hello linali
Thank you for your post. It is nice of you to have kept posting when we all know how busy you have been with Oskar. Perhaps Oskar had a bad night because he was very excited about seeing his daddy. I am sure you are going to miss him and that it will feel very strange.
I was interested to know that you are having a budget in Ireland today and I can understand your fears. We have had what is known as an autumn pre-budget today, but I have not yet had the time to sit down and watch the news to find out what the Chancellor of the Exchequer has in store for us. No doubt it will be more cuts and more taxes but the very rich people at the top will still escape paying their dues by getting their solicitors and accountants to use all the loopholes in tax avoidance. In some of the companies the cleaning ladies pay more tax than the big bosses!!! Remember we are the squeezed middle, as Ed Milliband likes to say. To get the economy moving in the UK people need to have money left in their pockets after they have paid all their bills etc. Here in the UK and especially in Devon, the cost of water, electricity and gas is getting out of control. I do not think they should have been privatised and run for profit for shareholders. They are a service and not a business. The same goes for transport. Fares are out of control.
Our Conservative government, in coalition with the Lib-dems, came to power with a promise of cutting the deficit, but after two and a half years they have achieved nothing, even though they have cut too much and caused untold hardship. We have children living in poverty, food banks and soup kitchens, not to mention people sleeping on the streets. The NHS is deteriorating, as are the schools and some pensioners are having to choose between eating and heating. We have all of this and yet our leaders are arrogant and uncaring and pontificate around the globe as if they still have an Empire!
With all of this going on our headline news was about Kate Middleton and morning sickness! I bet there are lots of women out there, pregnant with morning sickness, but who have gone off to work.
We have lots of people looking for work but there are not enough jobs to go round and what jobs there are do not pay enough for people to live on. Lots of working people are having to take benefits to top up the slave wages that they earn. The answer is not to cut benefits to make work pay, it is for companies to offer a living wage. In the UK, with the high cost of living, you need to earn good money to make ends meet.
I was interested to know that the grant for funerals is being taken away in Ireland. I think it still exists here, but you have to fill in a book of forms to qualify and if in the meantime you pay a deposit for a funeral, you are disqualified.
What exactly is the oap home package that you have in Ireland? Here in the UK we have a heating bonus of £200 per household each year. It used to be starting at age 60, but I think it might be 62 now, because they are busy changing all the retirement ages.
I agree with you that the people of Europe do take to the streets to protest. In the UK, on the whole, I find people very apathetic. They are quite content to sit back and moan and say let 'them' do it or something should be done about it. For six years I lived in France and I found the people very politicised and ready to fight for their rights. I taught there and found teaching conditions superior to those in the UK. I was living in France in 1968 when all hell let loose and the French really fought for their rights.
That is about all for today. I shall put away my soapbox now and probably put the television news on and shout at the screen as I watch George Osborne, the Chancellor, deliver his speech. He is a multi-millionaire, so he will be alright, as will most of the cabinet. My message to him is we are NOT all in this together. Some of us are more in it than others!
Fond thoughts.
Sylvia xxxx
0 -
Hey Everyone,
I just came across this article. The first half talks about prelim results of a trial adding a certain mTor Inhibitor.
But the real exciting thing, is the 2nd half of the article, talking about the vaccination.
Look at this: ..."The disease-free rate among the triple-negative breast cancer patients in the vaccine group was 83.3% compared to 47.6% in the control group—a 68% risk reduction. Due to the small patient population, the results are not yet statistically significant."...
www.cancernetwork.com/conferen...
It also said they recommend patients asking if they can go into this trial.
What do you all think? That is an incredible difference!
Have a great day my friends!
- TNBC Trial Vaccine, Triple Negative Breast Cancer Trial Vaccine
0 -
To all my pals on this thread:
Good news folks: went to my oncologist today for the report on the "baseline CT" taken last week.
CT scans show NO EVIDENCE OF METASTATIC DISEASE . . YIPEEEEEEEE!!! SO I am 7 months since surgery - and 7 months "cancer free" . . . this is a great way for me to begin my holiday festivities. I am THANKFUL!!!
A funny for the day, I also had a pelvic ultrasound (gynecologist wanted it because of post-chemo vaginal bleeding, even though that IS one of the side effects of Taxotere) - the test result shows nothing of concern . . but it says “non-visualization” of the left ovary - - meaning the left ovary couldn’t be found during the test . . . wonder if it wanted to be found? Where is it hiding? Maybe it’s hanging out with it’s friend somewhere, drinking a beer???? Do I get a 1/2 refund on the test since the ovary couldn't be found? This is making me SMILE . . a funny for the day!
0
