Calling all triple negative breast cancer patients in the UK
Comments
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Karen,
I'm so sorry to hear about this news. I hope that the abdominal discomfort is unrelated and is not anything serious, and I hope the pathology remains low grade on your biopsy. . Please keep us updated. Hugs, C
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Dear Karen,
You've had a tough time and I'm so sorry to hear of yr diagnoses after 3 painful biopsies! I will be thinking of you on Wednesday and keeping my fingers tightly crossed.
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Hello Karen
Thank you for your post. When I opened up the computer this evening and saw your name I felt so thrilled. I thought it is so good to hear from Karen again. The last time you posted you were going off to Turkey for a holiday and then preparing for your son to leave to go to university. I imagined that everything was going well and that you were getting on with your life and your teaching career.As I read your post I began to feel that everything was far from right and I felt so upset for you. As I read on I could hardly believe what I was reading. I am so glad that you have come back to the thread to tell us everything that you are going through and I know that we shall do all we can to support you through this.
The fact that your mammogram was clear in January 2011 and that you subsequently had all kinds of problems in your body, shows us, what I already believe, which is that we cannot be confident about mammograms showing up clear. So many times I hear about women being diagnosed with breast cancer shortly after having clear mammograms.
It seems as though when you had a bloating and pain in your abdomen and pain under your right shoulder, some action should have been taken immediately. Was it good enough for the oncologist to think that all was well? It makes me think again that blood tests have to be regularly taken to look for cancer markers.
What does your bone scan coming back clear tell us about that kind of scan? I suppose it means that this scan is only good for telling you whether cancer is in the bones.
I can understand that you might think the swelling in your left breast in August might have been inflammation. I suppose the lesson we must all learn from this is that we should get immediate advice on anything that we feel is abnormal for our bodies. I feel that we know our bodies better than anybody else, and that includes the experts. It is hard to believe that still nothing showed up in a mammogram and ultrasound in the last week of August.
This makes me wonder about the mammogram and ultrasound that I had in October after my consultant thought that things seemed a bit dense around the nipple of the left breast. That all came back clear. I do not have any kind of symptoms.
I am so glad that you persisted. Only you could possibly know what you were feeling in your body and know that something was wrong.
That fine needle biopsy you had sounds absolutely awful. Was it done properly? Was this what caused the haemorrhaging? It seems somewhat suspicious that you saw another surgeon on September 2nd and that the one you had seen before "had left their employment". I cannot believe what had happened to your breast.
You must have gone through a terrible time waiting for September 30th after the fine needle was inconclusive. Thank goodness that the core needle biopsy was done properly. I remember how badly bruised my right breast was after a core biopsy shortly after diagnosis. I find it so hard to believe that you had to endure a third biopsy. At least that one, although painful, hit the area that you were concerned about.
I do admire your courage so much and cannot believe that you had the courage to return to your teaching work the same afternoon.
I think we can all imagine how you must have felt on Tuesday October 18th when you returned and were told it was bad news. All of us, on this thread, know only too well the fear, dread and anxiety of sitting outside a consultant's room waiting for the results of whatever test or check up we have been through. Goodness only knows the level of the hormone cortisol that must be racing through our blood at such times.
I am so sorry, Karen, that you are having to go through all this again. I am sure bak94 will have something to say to you. bak94 had a new primary after eight years being free of breast cancer. She had a lumpectomy in 2002, and has been going through chemotherapy again these past months. She is due to have a bilateral mastectomy on November 30th.
I wonder what they found in the other biopsies that they classed as abnormal, but not showing cancer? Do you think they were seeing some of the markers that might indicate cancer?
I think you are wise to be having a bilateral mastectomy. Do you have a date? I do so hope that everything will be alright after the surgery and that you will get to know the grade and stage. We all know that a lot of the TNBCs tend to be grade 3, but that the stages vary. I do hope you will get good news.
We shall all be thinking of you on Wednesday when you have a PET scan and keeping our fingers crossed for you. Are PET scans current in the UK now?
Thank you so much, Karen, for reminding everyone reading this thread that they must be aware of their own body. If anyone reading this thread thinks there is something wrong, then they should pester the hell out of the experts and not take NO for an answer!
Maria_Malta recently had a bilateral mastectomy, so she will be able to help you in this respect.
Once again, thank you for coming to the thread and please let us know how you get on. We are all thinking of you.
Best wishes
Sylvia0 -
Hello everyone
Thank you christina1961 and Maria_Malta for coming to the swift support of Karen3. She needs us all to rally round her and I know that I can count on the faithful posters to this thread. You are a wonderful group.If there is anyone else who has stopped posting because of problems with their breast cancer, please come and get support. There are ladies that I know were going through very difficult times and I do wonder how you are and care about you.
I hope you are not feeling too unwell, Suze35. I hope you have had a good weekend, bak94. Good luck tomorrow, mccrimmon324 (Heather). Keep on looking after yourself, Maria_Malta. I hope you had a good bank holiday weekend, BernieEllen and are fighting fit for this coming week of radiotherapy. I hope all goes well, christin1961, with your second infusion of eribulin on November 4th.
Best wishes to everyone
Sylvia0 -
HI Karen, so sorry to hear your news. So unfair. I'm thinking of you.
Warm hugs
Bernie
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Hello Everyone,
Someone recently posted a link on this thread about an oncolytic virus and trials for the treatment of various cancers, but the post seems to have disappeared. I just wanted to say that I read it with great interest and we have to hope that it will be something else that will help in this battlle with breast cancer.
http://www.medicalnewstoday.com/releases/236704.php
It is the clinical trial section of breastcancer.org.
Best wishes
Sylvia
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Hello everyone
I have just received an e-mail CANCERactive. I joined up to receive e-mails as I think this will keep me right up to date with what is going on in the world of cancer. I think that many of you could also benefit from receiving these.This latest newsletter is entitled "Is your environment making you sick? Kicking out environmental toxins".
It is about Xenoestrogens - Poisoning your body with chemical hormones. It is about all the chemicals in your home today that can increase your oestrogen levels.
Part of the newsletter is about detoxing your body.
There is a lot more useful information in this newsletter that I am sure would be of interest to you.
Even though those of us posting are mainly triple negative, we have to remember that cancers mutate. I shall always remember that my oncologist told me that my breast cancer did not necessarily start off as negative.
All of us need all available information to keep all kinds of cancer at bay.
The link for information about xenoestrogens and environmental pollution is:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3148
I hope you have all begun the week with optimism. We know that BernieEllen is having a day off.
Best wishes
Sylvia0 -
Sylvia,
I just read your post asking about the interactions with antihistimines and eribulin. I don't know anything about ekgs, but certain antihistimines, antibiotics, and other drugs have an effect on the QT interval on ekgs - all of these drugs are on the prohibited drug list for use during the eribulin trial. My oncologist prescribed Vistoril (sp?) - and it is also ok to take phenergan. Luckily for me the ragweed pollen has lessened. I am experiencing much less symptoms right now. I am allergic to mold and several pollens; usually the fall season brings the most reaction from my allergies. Overall, feeling ok from the eribulin- a little bit like the flu - but I have not had a fever and am working more than full time. I have had absolutely no nausea, thank goodness! There is one other younger woman in the clinical trial with me; she has lost her hair following her 4th infusion.
For all those who are near the end of radiation, please note that it seems like it is normal to have more skin reaction the week after radiation stops! One of the techs told me that and it is true - I am now bright red and more sore than I was while undergoing the treatment (my last treatment was 10/24.)
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Karen, so sorry you are going through this again. I have found the second time around to be a bit more difficult emotionally and I think knowing partly what to expect is to blame for that. I had a lumpectomy the first time and am now waiting for a bmx. Just finished chemo and waiting to regain some strength before surgery, plus I had Avastin so I have to wait for that to clear out. I will be thinking of you and your upcoming scan. I also have a couple of scans scheduled before surgery, really trying not to think about them until the time comes!
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I am hitting my low point after my very last abraxane. My fingers are way more numb than they have been before and I am tired. The watery eyes are also driving me crazy! I have meet with the surgeon this week and my mo, getting my zometa friday. I am hoping I start to feel better after Friday, that is when I would normally be getting my abraxane, so things should get better from there, right?
Off topic-my doggies won 2nd place in a costume contest! They were so cute! Harley, the chihuahua was a foodtball and PT the border collie mix was a football player. They pranced arounnd in their costumes and had a great time with all the other dogs and kids. Hope I can find a good picture to post, it wa pretty chaotic trying to take photos, although we did have some professional ones taken that will be here soon!
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Hi to all. christina1961, thanks for the info on the rads, makes sense. Really sore now, had an extra day off because of the bank holiday so that is probably not helping.
Thinking of you bak94
Sylvia, very interesting about environmental toxins. I have cleared my home of nearly every chemical and have gone back to my grandmothers way of cleaning. Really have a problem with the fact that there are so many artificial deodorisers everywhere. Even scented candles and pot pourries are artificial scented.
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Hello christina1961
Thank you for your post. I was very interested to learn about how certain antihistamines, antibiotics and other drugs do not mix with eribulin. I am glad for you that you are not suffering as much from your allergies. It sounds as though your allergies are as bad as my husband's. His seem to have got worse as he has got older.I am glad to know that you are feeling ok from the eribulin except for flu like symptoms.
It is probably good that you are working, as it will occupy your mind. You mentioned a younger woman losing her hair after the fourth infusion. Is this inevitable for everyone?
Congratulations on finishing your radiotherapy. That puts all the conventional treatment behind you. I have read that the radiotherapy treatment continues to work on your body for about six weeks after you finish your treatment. That explains why some women experience redness weeks after their radiotherapy has finished.
How long will the trial treatment last?
Best wishes
Sylvia0 -
Hello bak94
Thank you for your post. I was sorry to learn that you were hitting a low point after your very last Abraxane. Try to rest as much as you can and you should begin to pick up as the drugs work themselves out of your body. I hope all goes well with the Zometa on Friday and that you will be able to be drug free until your surgery. It must feel like a long wait.Congratulations on your dogs winning second place in a costume contest. It all sounded very entertaining and I can tell how proud you are of your dogs. It is good to be able to get some happiness out of your days, especially during treatment. It is good to express your highs and lows on the thread.
Best wishes
Sylvia0 -
Hello BernieEllen
Thank you for your post. I hope you had a good bank holiday weekend.I was glad to know that you found the information about environmental toxins interesting. You are very wise to have had a clear out of all the chemicals that we use around the home. Grandmother definitely knew what was right, and, of course, she was not exposed to all the poison that is on sale in our supermarkets. I find CANCERactive superb in all the information that it give out. I think the amount of stuff on sale for cleaning your home is getting worse and worse, not to mention all the toilet products and cosmetics.
I have been reading about xenoestrogens over and over again. They are also known as endocrine disrupters. I find it quite frightening when I read a line such as "Chemicals in your nail polish are permitted and deemed safe, even though they could be present in concentrations a 1000 times or more higher than your natural hormones".
I also found it interesting to read about body fat and what a wonderful solvent it is and how it can dissolve and hold all these chemical toxins, including chemicals, in the body, that you would rather excrete. Of course, the female breast is another area of fatty tissue. I think you have to keep reading these articles over and over to absorb all the information.
It could be that women who have oestrogen positive breast cancer have not developed it because of the natural oestrogen that the body produces. It seems that it could be coming from the oestrogen coming from outside of your body. This is food for thought.
I hope you will have a good week with your radiotherapy.
Best wishes
Sylvia0 -
Hello mccrimmon324
I hope all will go well this week as you start your radiotherapy treatment.Hello suze35
I was wondering how you are getting on in your clinical trial now that you have done nearly three weeks.
Here in Exmouth my weather forecast told me that you have had a lot of snow and that it is quite early in the season. Do you enjoy the snowy weather?
Hello Maria_Malta
What are you doing this week in the way of relaxation?
Hallo Sam52
I do hope you will find the time to read the CANCERactive information about the dangers of xenoestrogens etc. I am sure you will find it interesting.
Best wishes to you all.
Sylvia0 -
Hello Karen3
I just wanted to say that we shall all be thinking of you on Wednesday November 2nd as you undergo scans. We are all hoping you get good news.Best wishes
Sylvia0 -
Hi Sylvia and everyone,
I'm afraid the early part of the week isn't going to be too relaxing! I went to the bs yesterday and he tried to aspirate blood/fluid from my left breast...we'd known there was a hematoma there but he thought we'd give it time to go down on its own... well, it didn't but seemed to get harder and larger and yesterday he tried to aspirate it using a syringe. That didn't work as he couldn't reach it very easily, and the fluid is too thick to come out in this way. So tomorrow I'm going in to hospital to have it 'cleaned up' under general anaesthetic....it'll be a very quick thing and I can come home in the afternoon, but you can imagine that I really could have done without this little extra. On the other hand I was really lucky with my path results and this is nothing in comparison with some of the things others are having to deal with here, so I'm being philosophical and am seeing this as a very temporary bleep in my recovery.
Karen, I too will be thinking of you tomorrow. mccrimmon how did yr first radiotherapy session go? Well I hope. Very best wishes to all, especially those going through rough times.
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Hello Ladies,
Had my first Rad treatment yesterday and it went fine. As I expected I wasn't nearly as nervous as I was prior to chemo. So 1 down, 29 to go. I think I'm as prepared as I can be, I've got aloe plants, aloe get and lotion with aloe, both at home and at work since I'll be coming straight to work after my appointments.
Karen, I'm sorry you have to go thru this a second time, I'll be thinking of you as well.
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Bak94 - I hope you start feeling better soon and I hope you post those costume pics soon. The football sounds hysterical. Our dogs suffer thru the hats we make them wear and we have them for every holiday. I think if I tried to put them in a full costume they'd attack me in my sleep. LOL.
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Hello Sylvia
As you know from my PM to you, I have been very taken up with looking after my father after his collapse, nearly 2 weeks ago.Since yesterday afternoon he has been staying with my brother near Brighton for a few days. He plans to drive him back to me on Saturday, and hopefullly I can then take him back to his own home.I have made an appointment for a re-assesment with social services for Monday morning, when I am still with him.I will need to go back to London in the afternoon, however, as I have work the next day. I just hope my father will be able to cope on his own until any recommendations are implemented.
I did have a quick look at the CancerActive site you mentioned, and find it very interesting.I will look in greater depth when I have time. The aspect of oestrogen and in particuIar xenoestrogens is interesting in relation to hormone status.I was told after my bc surgery that part of my tumor was ER+ and part was ER-........so that is even more confusing.I always felt I had high levels of oestrogen circulating as I had been having a period every 3 weeks for some 10 years before diagnosis. I know that environmental oestrogen can have an impact on the body too.
I thought you might be interested to know that I have had a letter from John Radcliffe Hospital in Oxford, who did my parathyroidectomy 18 months ago. They have asked me to participate in research into long-term results after parathyroid surgery.For this I need to have a further blood test to confirm that my calcium, albumin and PTH levels have remained normal since the surgery.I am very keen to know if this is the case,as I have heard of someone (on this site), who had parathyroid surgery and then developed hyperparathyroid disease again.
LIke you, I am convinced there is some conection between this and breast cancer.
With love,
Sam
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Hello Maria_Malta,
I was sorry to learn that you have had some post surgery problems and I do hope that everything is now sorted out. You are right to see the problem as a temporary bleep on your cancer journey. Just keep focusing on the fact that your treatment will soon be over.
Best Wishes,
Sylvia.0 -
Hello Sam 52,
I do so hope that you will be able to sort something out with your father and that he can be well cared for in his home It is a very difficult time for children when their parents are no longer able to function on their own.
I was most interested to know about the hospital follow up and I shall be interested to learn how you are faring after your minimal invasive surgery for your parathyroidectomy.
Take care,
Best Wishes,
Sylvia.
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Thanks Sylvia, the 'apiration' was pretty straightforward...very light anaesthetic and I recovered straight away. Came home in the afternoon and apart from my new breasts, which are still vey tender, I'm feeling fine.
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Hello Maria,
I am so glad to know that everything went well and that you are feeling fine. That is something else to put behind you.Take good care of yourself and I am sure you will sail through radiotherapy.
Best wishes,
Sylvia.
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Hello bak94,
Iam so sorry to learn that your treatment is taking such a toll on you. You must bear in mind that you are doing this for the second time and I feel this might have something to do with your exhaustion. You can get through this and we are all here wishing you nothing but the best. Hang in there and focus on yourself.Remember all our cancers are personal and it is difficult to compare our reactions to those of others.
Best Wishes,
Sylvia
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Hello mccrimmon324,
Thank you for letting us know that you have been through your first radiotherapy treatment and that all is well. It is so much easier than chemotherapy and the time goes so much more quickly.
Best Wishes,
Sylvia.
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Hello again Sam52,
I just wanted to say that I was most interested in what you had to say about the fact that you were told that your tumour was a mixture of e+ and e -. It seems to make more sense in a way that tumours should be a mixture of things because nature is not cut and dried. They also mutate, as my oncologist reminded me. And what starts of as one thing does not necessarily remain the same.
I think patients mix up types of breast cancer with the receptor status of cancers. For example, a lot of us were diagnosed with Invasive Ductal Carcinoma, but we had different receptors, a mixture of oestrogen, progesterone, and her2, and positive or negative.
I do hope life will get less stressful for you. I think of you as a friend. We have been through a lot together.
Best Wishes,
Sylvia0 -
Hello everyone
I just wanted to post a few bits of information that I thought might be of interest. This information is about spontaneous remission in cancer. There are cases where this does happen and I believe that doctors themselves are not always sure why this occurs, but there are various theories about why this happens. These are connected with the immune system, DNA, hormones etc. There are also theories about spontaneous remission after bouts of fever.I remember reading the case of someone with lung cancer going into remission after being ill with a bad fever. A friend of mine, when I was in Canada, was diagnosed with cancer, and his wife was told that there was no hope and to prepare for his funeral. Instead of that she took him out of the hospital. He did not die and then he died of a heart attack many years later, and there was no trace of cancer in his body.
If you Google "spontaneous remission in cancer", you will find lots of links. One that I found particularly interesting was the one entitled "A New Hypothesis for Spontaneous Remission in Cancer". It is all about Coley's Toxins. It makes a lot of sense to me. The link is:
http://www.second-opinions.co.uk/thuo-hypothesis.html
I would like to know what you think.
I think there is always a logical explanation for everything and I think with cancer it will always have something to do with the body managing to fight back and conquer. Only your body can do this. I remember my consultant telling me that it could be that healthy women get cancer because their immune systems have become lazy because they have not had to fight illness. I recently read that it is good to have fevers in childhood and in adulthood. This makes me wonder why we all go rushing to have flu vaccines!!! I hope there is some food for thought here.
I leave you with this. The American Cancer Society believes that healthy behaviour could prevent about half of all cancer deaths.
Best wishes
Sylvia0 -
Hello Karen3
I hope that you had some good news from your scans yesterday. Please keep in touch and let us know how you got on.To everyone, has anyone had any news of TEK2009 or josephine_ recently.
Sylvia
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Hello Sylvia,
I thought you might be interested in the article below:
http://www.sciencedaily.com/releases/2011/11/111101141347.htm
Sam x
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