Calling all triple negative breast cancer patients in the UK

This post is mainly for any newly diagnosed women who may be viewing. I am always on the lookout for information to help those who have just received a diagnosis of breast cancer. I was recently reading on a website called Y-Me Breast Cancer Support and I thought it was written in clear easy to understand language. The bit I was reading had the following headings.

1. Getting the diagnosis.

2. Types of breast cancer.

3. Understanding diagnosis.

4. Understanding your pathology report.

5. Asking questions.

Looking back to when I was diagnosed on June 20th 2005, I thought how useful I would have found all of the above. The part, Understanding Your Pathology Report, I found particularly interesting, because it has quite a lot of details. I have never asked for my pathology report, but was just told it was excellent. I know that today we are told to ask for a copy of our pathology report and through it with our medical team.

The link is:

http://www.y-me.org/just-diagnosed?gclid=CLu00uPZ5q0CFYgmtAodq3L6VA

I hope all of you will have a good week. Of the small group of women that have been with us from the start of their treatment, three have now finished, BernieEllen, Maria_Malta and mccrimmon324. I hope that all three of you will look forward now with optimism. To christina1961 and bak94, I hope you will both keep well and look forward to the end of your treatment, which is fast approaching. To Karen3, I hope you are progressing and will continue to do so.

Best wishes
Sylvia

I read your posting about pseudomonas aeruginosa. These infections are caused by any of several types of the gram-negative bacteria. The pseudomonas that you have appear to be quite common. Infections range from mild external ones to serious internal ones affecting lungs, blood stream or heart valves. These infections are highly treatable with antibiotics applied externally for external infections or given intravenously for more serious internal infections.

These infections are present throughout the world in soil and water. You can find them in sinks, toilets, swimming pools with insufficient chlorine, etc.

They are more likely to occur in patients who are hospitalised, are weakend by certain severe disorders, have a disorder that weakened the immune system or are taking drugs that suppress the immune system, such as those used to treat cancer.

These bacteria can infect many parts of the body as well as wounds such as burns, injuries or wounds made during surgery.

Use of medical devices such as catheters inserted into the bladder or a vein, breathing tubes and mechanical ventilators increase the risk of pseudomonas aeruginosa infection. These infections are commonly acquired in hospitals.

I have taken these details not from the internet but from the very reputable and latest version of the Merck Manual Home Health Handbook.

There are lots more details in the book.

You may be interested to know that sometimes the source of the bacteria is unknown as may occur in people who have too few white blood cells after cancer chemotherapy. Purple black spots surrounded by a red rim on the skin often develop in the armpits and groin. Immediate treatment is required.

You need to make sure that you are getting the right antibiotics because hospital acquired pseudomonas aeruginosa may be resistant to antibiotics.

I hope this will help you bak94.

Best wishes
Sylvia

Hello everyone

I thought I would post these photos that I took in the grounds of apartment complex yesterday. They show that spring is on its way here in Exmouth UK. I hope they will be of cheer to you all. I find the signs of the rebirth os nature very calming and uplifting.

I hope you are all well.

Best wishes

Sylvia

I am glad you enjoyed the flowers. We have had some daffodils blooming before Christmas here in Exmouth. What is it like in Florida at this time of year? I do hope you are having a good week.

Best wishes
Sylvia

Thank you for posting and for expressing your appreciation of the photographs. The choisya have been in bloom for about two weeks. They look magnificent in the grounds and have a lovely smell.

Do not worry if you do not have time to pm me at the moment. I do understand and know how busy you must be at the moment. How many weeks are there until half term? Please take care of yourself.

Love
Sylvia

I had to laugh about how, in Florida, you are all waiting for it to get a bit cooler. At least you should not be suffering from vitamin D deficiency with all your sunshine. You need only ten minutes in the sun a day. Here in the UK we could do with some of your sunshine! It is so dull most of the time. Vitamin D was in the news again today. It was all about how so many people are deficient in this important vitamin, which is really a hormone. Apparently children here are getting rickets due to lack of it. That disease was supposed to have been eliminated.

Best wishes
Sylvia

Hello bak94,

Thank you for your post. I do hope that you are having a restful weekend and feeling better.

I can understand that you do not want more chemo and that you are having a rethink about reconstruction. If I were you I would get the radiotherapy out of the way and then give your body a good long rest. You have been through so much.

 I agree that the post about Avastin and metastases is scary. If you remember where you read it, let me know as I would like to read it.

Best Wishes,

Sylvia.

I was just reading the other thread and saw that it was your birthday last Sunday. I just wanted to send you belated greetings. I do hope you had an enjoyable day. Do you come under Capricorn?

Try not to worry too much about anything. You have finished treatment and you can look forward with optimism. You have successfully finished treatment and that is a big achievement.

Best wishes
Sylvia

I am using today to catch up on information that I have set aside to post. This is another article from the Tuesday January 24th edition of the Daily Mail in the Good Health section. My preferred newspapers are The Independent and The Guardian, but I find the health sections of the Daily Mail and Daily Express very useful and informative. The latest news to have caught my eye is one by Louise Atkinson and it is about a controversial new book entitled The End of Illness by Dr David Agus who is a respected US oncologist and who has spent the past twenty years treating people with cancer and conducting clinical trials. Apparently, in this book, Dr Agus states that science is struggling to treat advanced cancers and thinks the emphasis on protecting and preventing cancer rather than curing. Remember, the book is described as controversial. He states "We may never understand illnesses such as cancer. In fact, we may never cure it, but an ounce of prevention is worth more than a million pounds "of cure"". He believes that cancer is more likely to be something the body does rather than "gets". He believes that genes are constantly triggering abnormal cell growths in different parts of our body.

If my understanding is correct, something happens to weaken our defence systems, cells continue to malfunction with the result that tumours grow out of control. In order to avoid this, we have to keep our bodies in a state of good balance or homoeostasis.

The basic headlines in this article are Loose the heels (wear sensible shoes), this avoids inflammation, Have a flu jab, Avoid taking supplements (unless you are deficient or pregnant), Get on your feet (avoid hours of sitting about), Forget the lie-in (eat meals at the same time, go to bed and get up at the same time. Apparently the body likes constancy), Ask for statins (Dr Agus argues that statins have a more widespread role to play than lowering cholesterol in people at high risk of heart disease. Apparently studies show that statins have powerful inflammatory action that can reduce your risk of many diseases. He is also a believer in low dose aspirin for the over 50s).

The link is:

http://www.dailymail.co.uk/health/article-2090903/Ditch-multi-vitamins-Stand-Wear-better-shoes--Can-simple-habits-stop-getting-cancer.html

There is more in the article than I have been able to post.

It is only my own personal opinion, but I have reservations about statins. I have a friend who was made life-threating ill by them and it will take years to get the statins out of his system and the damage cannot be undone. Of course this is only one incident and we have to remember that we all react differently to illnesses and medication. As for low dose aspirin, there seem to be differing opinions. I have read about bleeding in the brain, not to mention stomach. As for vitamins, again there are a lot of differing opinions and you have to make up your own mind. For many reasons, we should all be wearing "sensible" shoes!!! We should also not be leading a sedentary life.

Best wishes
Sylvia

Thank you for posting the link. I have just been reading it and it is quite complicated, but the title says it all, "Anti Angiogenesis may not be an entirely good thing".

It seems to be that researchers go along thinking they are doing good and perhaps giving a lot of false hopes, only to find that things are not as they seem. I am posting a part of the article that caught my eye:-

Importantly, the team found that these molecular changes occurred inside the smaller, pericyte-depleted tumors that had increased incidences of secondary tumors in the lungs in the mouse models. "This suggested that smaller tumors are shedding more cancer cells into the blood and causing more metastasis," says Kalluri. "We showed that a big tumor with good pericyte coverage is less metastatic than a smaller tumor of the same type with less pericyte coverage."

Because cancer therapies such as Imatinib, Sunitinib and others have been shown to decrease pericytes in tumors, the researchers' next step was to perform the same experiments in mice with primary tumors, only this time, using Imatinib and Sunitinib rather than genetic programs to decrease pericyte numbers. And while both Imatinib and Sunitinib caused a 70 percent pericyte depletion, the end results, stayed the same: metastasis increased threefold. "We showed that a big tumor with good pericyte coverage is less metastatic than a smaller tumor of the same type with less pericyte coverage," says Kalluri, who corroborated these findings in multiple types of cancer by repeating these same experiments with implanted renal cell carcinoma and melanoma tumors.
Additional experiments showed that combining pericyte-depleting drugs with the Met-inhibiting drug helped suppress EMT and metastasis.
Finally, to determine if the findings were relevant to patients, the scientists examined 130 breast cancer tumor samples of varying cancer stages and tumor sizes and compared pericyte levels with prognosis. They found that samples with low numbers of pericytes in tumor vasculature and high levels of Met expression correlated with the most deeply invasive cancers, distant metastasis and 5- and 10- year survival rates lower than 20 percent.
"These results are quite provocative and will influence clinical programs designed to target tumor angiogenesis," says Ronald A. DePinho, president of the University of Texas MD Anderson Cancer Center. "These impressive studies will inform and refine potential therapeutic approaches for many cancers."
Meanwhile, for Kalluri, the work suggests that certain assumptions about cancer must be revisited. "We must go back and audit the tumor and find out which cells play a protective role versus which cells promote growth and aggression," says Kalluri. "Not everything is black and white. There are some cells inside a tumor that are actually good in certain contexts."

My first question after reading this is what are pericytes? Are patients now being told about pericytes in their pathology reports or by their medical teams? Is this another aspect of breast cancer and others that is going to frighten and discourage some patients? Looking at threads and articles, I get so annoyed about all the doom and gloom over TNBC. I do not take much notice of it any more. I just look upon it as part of the common type of cancer described as invasive ductal carcinoma (IDC) with negative receptors instead of positive ones. This is how my medical team described it to me. I believe that all cancers are aggressive and that patients with hormonal IDC have just as much fear and as many concerns as those without hormonal positive status. I would think that whatever combination of receptor status you have, you will have concerns. Ask yourself the following. Is triple positive of any less concern than triple negative? All the medication for hormonal positive breast cancers have nasty and serious side effects and do not work for everyone. As I have said before, I, for one, am glad that I am not taking any medication and am putting my faith in my immune system fighting for me.

There is another link on another thread about a "hopeful" cure. The link is:

http://news.harvard.edu/gazette/story/2011/03/new-hope-for-the-cure/?utm_source=alumniaffairs&utm_medium=harvardmonthlyemail&utm_campaign=april11&sms_ss=email&at_xt=4daf0fdaa1c99c77,0

Have a read of it and see what you think. I find all this information very confusing. To the newly diagnosed, I would say get through your treatment and try to put the rest to the back of your mind.

Best wishes
Sylvia

I have looked up the Wikipedia definition of Pericyte. The link is:

http://en.wikipedia.org/wiki/Pericyte

Sylvia