Calling all triple negative breast cancer patients in the UK

merscotland · January 2017

Wishes for a very peaceful and happy new year all. Thanks for your Christmas wishes Sylvia. I thought I'd bring you up to date on current circumstances

After completing treatment and told my follow up plan was to see surgeon a year after lumpectomy I've been keeping pretty well and managing my side effects reasonably well. I was looking forward to getting fitter in the new year and I've had meetings about returning to work soon. However, I learned just before Christmas that I have the BRACA2 mutation.

I had pushed for the test because I don't have very much family history information, not really expecting to have the faulty gene! So now it's back to researching the imllications for my family and myself.

My understandings and expectations around TNBC now need to be adjusted. I would like to find out about the stats on disease free survival rates for BRACA2 after cancer.

I am waiting for appointment with my excellent breast surgeon and will be very happy to accept his advice. But I am expecting to go for prophylactic double mastectomy and probably hysterectomy.

What I'm wondering though is whether or not I will have any investigations into my current cancer status before any surgery is undertaken. Will my oncologist for example, routinely offer me an appointment to discuss the change in my circumstances and/or offer MRI, blood tests etc?

Has anyone else with TN been through this situation? Can anyone advise me on what tests(if any) I should expect(or push for)?

Our 3 children have started the ball rolling to find out if they have the faulty gene (50:50 chance). Our daughter has an appointment tomorrow with the genetic counsellor. She is 32 and doesn't have children yet so we're praying she doesn't have the faulty gene.

I/we are grateful though for finding out about the faulty gene as it offers me and our children opportunities to take action (if necessary) to reduce their individual risks.

Warmest regards to all

X

Maggie

maryna8 · January 2017

Amanda,

Love the picture, happy New Year to you, hope you can take some more vacations in 2017!

I was at a New Year's party where the theme was the 60's, but I didn't dress up much, I told someone that I used to wear all that stuff but just called it clothes!! I did wear a "Peace" necklace.

Talk to you soon,

Mary

maryna8 · January 2017

Rhonda,

You do look very healthy and happy, and your little dog is very cute in his sweater. I am a little envious of your snow, we didn't get much last winter and have only had a very small one so far this winter. I guess I should be careful what I wish for! We have had one surprise ice event, which is always a nasty occurrence. I had to drive on it, and it was spooky. This afternoon is supposed to turn bitter cold again for the rest of the week, and remind us it is January!

Happy New Year!

Mary

maryna8 · January 2017

Sylvia, and all,

This was in Chris Woollams's November newsletter, maybe of interest to those looking for answers on what to take in for fighting cancer.

http://www.canceractive.com/cancer-active-page-link.aspx?n=3594

Sylvia, I looked at the article you linked to on the "inhibition of MCL-1 to suppress metastasis in breast cancer". It is indeed quite technical, I wonder how it is will be administered if and when it gets to be in use, if it is taken indefinitely to fight recurrence, or given when first diagnosed. I am glad there are people who understand all this, you seem to have a good handle on it. We could use Tom's expert opinion.

I did not make any formal resolutions for New Year's. I am going to watch my diet closer, since I ate a lot of food I don't usually eat at the many family, and other functions I have attended the past couple of weeks. It wouldn't hurt to tweak things in a little better direction anyway. I really also would like to figure out just how active I am capable of being, I have had some good days, am now having problems with ankles that my GP is laying at the feet of venous issues combined with the neuropathy. An ultrasound on veins showed some problems, not sure about solution since my last attempt did not go well, and the doctor I used was not helpful and only referred me to the Pain Clinic when I saw him recently. I am not ready for that, since they will only offer more drugs. I will save that for a time when I may possibly need it.

Have a dentist appt. to go to today, they called me yesterday to remind me and I am so glad because I had no idea!

Talk to you all soon,

Love, Mary

Anonymous · January 2017

Hi Mary,

Thanks for the links you gave. I like them both, the TTAC with the absurd cow's fart being taxed by the government and Chris Woolams article on Epigenetics. That's a new word to me, Epigenetics, very interesting. Thanks, wishing you're ok.

Talk to you later.

Gina

Anonymous · January 2017

Hi Rhonda,

You look healthy in your pic. Wish you continued strength and recovery.

Hi Amanda,

Nice picture you posted. Hope your vacation made you relaxed and ready for another bright new year.

Regards,

Gina

Anonymous · January 2017

Sylvia, just greeting you hello.

What's keeping yoi busy?

sylviaexmouthuk · January 2017

Hello Rhonda,

Thank you for the photograph. I was so glad to know that you are feeling better. Keep up the good work and make sure that you do not overdo things. You are nearly there on this chemotherapy journey, so keep looking ahead.

Wishing you all the very best for 2017.

Fond thoughts.

Sylvia xxxx

Kathseward · January 2017

hi all

11 th taxol this Friday and 12 th next Thursday and my cycle is complete. Still very achy but feeling better within myself ! Hope u are all enjoy your snow. The long range forecast for sat Sunday Monday and Tuesday here is 40 degrees Celsius! . It's sweltering

Cheers

Kath

sylviaexmouthuk · January 2017

Hello Maggie,

It was so nice to hear from you and thank you for bringing us up to date.

I can understand that you may be feeling a disappointed to be told that you have the BRCA2 mutation. Try to concentrate on the fact that you have got through your treatment, are feeling reasonably well. There is no reason not to keep to looking forward to getting fitter and returning to work as soon as you can. These are two good goals. Remain optimistic about everything.

I think you were right to ask for genetic testing. I think it is something that should be offered to all of us.

Do not let this diagnosis of BRCA2 make you less optimistic. If it were me, I would not look for survival rates, because we are all different and our health in general is very different. Listen carefully to your medical team and be guided by what they say, and give yourself time to think things over carefully before deciding on a prophylactic double mastectomy and hysterectomy. These are big decisions.

I was surprised to read that before the BRCA2 gene was diagnosed, you were only going to be seen in a year's time. When I finished the standard treatment I had physical check ups every three months, alternating between the oncologist and the breast cancer surgeon. After a couple of years this went to once every six months, again alternating, and then after a couple of years this went to once a year. After about five years I was discharged from the breast cancer surgeon, but continued with the oncologist one a year. The oncologist kept these check ups going until I reached ten years. During that time, I had a couple of mammograms, but no scans. The physical check ups seemed fairly basic but the oncologist told me she was looking for everything to be smooth over my mastectomy scar and no abnormality in the lymph nodes under the arms and around the neck. I think they also look for signs of a rash over the mastectomy scar, because she told me that this could indicate recurrence.

Talk to your oncologist about this and if you feel you want to be kept under more supervision, then I am sure this can be arranged.

I do hope that, if there is someone else on the thread that has been through treatment after being told about BRCA1 or 2, they will post in to relate their experiences.

Please let us know how you get on and how you decide to proceed. Please let us know, also, how your children get on. I know someone whose sister had breast cancer with the faulty gene, and that friend did have the prophylactic surgery, although she did not have cancer, and she is fine, healthy, living and working normally. Her three brothers had the genetic testing, two were positive and one was not. Strangely, the brother who was not positive had a different blood group to the rest of them.

I do hope all will go well with your children.

I was wondering how old you are, because we are always told that younger women are more likely to have triple negative and to have the faulty genes. I think statistically this is true, but more and more older women seem to be getting diagnosed with triple negative breast cancer.

Please keep in touch and remain optimistic about everything.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk · January 2017

Hello Kath and Mary,

Thank you for your posts.

Good luck, Kath, for Friday and next Thursday. I shall be thinking of you and wishing you all the best. You are going to finish this journey.

Be careful in that heat.

Fond thoughts.

Sylvia xxxx.

Hello Mary,

Thank you for your post. I have to go out but I shall answer when I get back. Have you had any emails from Chris for December? No matter what I try, I cannot seem to get back on his email. It seems crazy because I have been following him and buying icon magazine since 2005 when I was diagnosed and icon magazine had only just started. I picked it up at the hospital.

Fond thoughts and talk later.

Sylvia xxxx

maryna8 · January 2017

Hello, all

This is one more link from Chris Woollams' newsletter of November, a little similar with the diet tips. Sylvia, he did not send one out in December, I suppose he was too busy! Sorry you can't get back on. I have a problem getting him in my Inbox, the newsletter always ends up in my spam no matter what I do, and I have to remember to look for it.

http://www.canceractive.com/cancer-active-page-link.aspx?n=3642

Later, Mary

sylviaexmouthuk · January 2017

Hello Mary,

Thank you for posting the link to Chris Woollams' November newsletter. I am sure it will be of interest to a lot of those viewing. Of course the best thing for them to do is to sign up to his newsletter and look at his website regularly. They need to remember that he works within Cancer Active.

I have no clear idea about how the inhibition of MCL-1 will work. The 'experts' talk of shutting it off, but they do not tell you how. Will it be yet another pill? I remember back in 2005 when I was diagnosed, that one of my medical team mentioned to me the role of p58 and the role in causing breast cancer of when this was silenced through some process, that I think was called methylation. It all sounded very complicated to me.

As far as I am concerned, I do not take too much notice of all these miracle things that may happen. I have had breast cancer and I try to focus all my goals on keeping it at bay through my everyday lifestyle. I know that it could recur, or spread, whatever I do, and that there are not guarantees.

I do hope that Tom will stay with us and post from time to time in his busy family life.

I am disappointed that we have not heard from Michael in about two months, and I do hope he is fine and just getting on with his life. His story about the death of his wife was so tragic. I remember how he first posted on bc.org and how a regular poster here, an American woman, going though treatment, Christina1961 I think it was, told him to come and join our thread. I do hope the Janette Collins Foundation that he created in her memory, has been successful.

I have not really made any formal resolutions for New Year, but I have tried in my life to stay true to what one of my teachers was always saying to us when I was at Junior school. It was "If a job is worth doing, it is worth doing well".

I also think it is very prudent to remember another saying that I rather like. It is "Engage brain before opening mouth!".

Try to stick to healthy eating is a good idea for all of us.

I do hope you will be able to figure out how active you are capable of being. I tend to try to do too much, but I am trying to pace myself a bit more. I am such a perfectionist and have always been like that. I am not superstitious, but according to the astrology charts etc. I am the perfect Virgo. I was born on September 1^st.

I do hope you find out why you are having problems with your ankles. Is the GP able to do anything to cure this? Please let us know what goes on.

I do hope your dental appointment was fine yesterday.

That is about all for now.

Sending you fond thoughts.

Sylvia xxxx

sylviaexmouthuk · January 2017

Hello Mary, again,

Thank you for letting me know that Chris Woollams did not send out a newsletter for December. You are probably right in thinking that he is too busy. I find it so frustrating that I cannot get back. You would think it would be simple. I do wonder how Chris manages to do all that he does. He has websites for cancer and chronic illnesses in general, his newsletters, his personal prescriptions through interviews, all his conferences around the world, not to mention icon magazine.

I am now going to try to catch up with my newspaper reading, as well as the latest edition (January) of the magazine What Doctors Don't Tell You.

What are you reading at the moment?

Love.

Sylvia xxxx

sylviaexmouthuk · January 2017

Hello Pam (lilyp6), we have not heard from you in a while and I was wondering how things are going with your reconstruction.

Hello Chris (Chrisash), how are things going with you? Could you update is with what is going on with your Taxol?

Hello Gina, I hope you are well. Could you update us on what is happening with your chemotherapy treatment? I think you started Taxol.

Hello lamis, how is your mother getting on with her treatment?

Hello Val, what are you doing these days now that you have finished treatment? Do you have any special plans for 2017?

Hello 4everStrong, I was wondering how things are going with you and whether you have any special plans for 2017? Are you taking any interest in the Presidential elections in France for 2017? I have taken an interest in the first primaries for for the Right and am wondering what will happen if François Fillon wins the Presidency. I have no idea who will become the candidate for the Left.

Hello Barbed, I am wondering what has happened to you and hope that all is OK.

Hello PeterandLiz, I hope you had a good Christmas and wish you a Happy New Year. Do you have any travel plans for 2017?

Wishing everyone viewing and posting, all the very best.

Fond thoughts.

Sylvia xxxx

Anonymous · January 2017

Hi Sylvia,

My docetaxel will start on Jan 11 and will be on 21-day cycle for 3 sessions. Today, i will have my ecg, 2D echo and bloodworks to check on my condition before proceeding with chemo.

I will update you on these tests once results are in.

Wish you well,

Gina

Anonymous · January 2017

Hello Mary,

Thanks for all the very interesting links. They are great guides for cancer diets.

I hope you find a permanent cure to your leg vein/feet problems and good luck on your dental appointment.

Gentle hug,

Gina

Anonymous · January 2017

Being Happy is like...

InspiredbyDolce · January 2017

Hi Sylvia and Everyone,

It's a big day in our household, as we celebrate my 5-year healthy victory today! Diagnosed on 12/27, but BMX on 1/4, so I choose this date.

Every year I log in and post my annual update. For one, it's a reminder to me of many things, things I've have accomplished, things I've had to change, etc... and two, it provides hope and inspiration for others.

However, I think going forward, I really want this day to be about All of Us! For this isn't only my victory, it's a victory for everyone who supported me, from each and every one of you on these boards, to vital material left on these boards by other members who don't frequent as much, to the new research and treatments that are extending the life of many survivors. I also want this day to be about celebrating every one of you! For everyone who is here, and for everyone who has ever become a member of this forum, it's a day to be thankful for all of our friendships, and to extend love and support to everyone.

Much love to all of you ladies.

Have a wonderful New Year everyone!

Debra

Anonymous · January 2017

Another survivor!!!

Congratulations Debra.

A happy day for us!

merscotland · January 2017

Thank you for your kindness and words of support Sylvia. It's always helpful to receive further information. I have not been told what to watch out for anything besides breathlessness and new pain so the advice you were given is especially helpful.

I turned 56 in October so I wouldn't have expected to have the faulty gene as this appears to affect younger women. However, I take your point about about the increase in numbers of older women experiencing TNBC.

My daughter had a blood test yesterday and she will learn of her BRACA status within 4-6 weeks.

I will keep you posted. Take care and very best wishes.

Maggi

rlk58 · January 2017

Hi Kathy,

So happy that you are almost done with Taxol!I had my 5th infusion yesterday.Slight hiccup with the nurse forgetting to turn the pump on so I iced for an hour and my husband came back and said the bag is full.You can bet from now on I will be questioning and making sure they you start it. Did you find the pain is cumulative with Taxol?I have only experienced mild back pain.Did you ice your hands and feet? So far I feel good with the Taxol as compared with the AC.

Rhond

rlk58 · January 2017

Maggie,

I was 57 at diagnosis and had the genetic testing in December and waiting for results-one more week.

Rhonda

ChrisAsh · January 2017

Hello everyone and happy new year

This is the 3 rd time in as many days I've attempted to post but for some reason my iPad freezes part way through and I lose everything I typed so I'm going to post a series of short messages instead.

Chri

ChrisAsh · January 2017

Hello again

I have been busy for the past few weeks. Had my lumpectomy the week before Christmas and then straight into festivities. Fortunately for me my sister hosted this year so all I had to do was turn up and stir the gravy 😊. I got the results from my surgery a couple of days ago and was really pleased to here I'd had a pCR so all those weeks of chemo seemed worth it. Next step for me will be radiotherapy.

Chris

ChrisAsh · January 2017

And again!

We managed a short break over New year to North devon ( Biddeford) which I think might be in your neck of the woods Sylvia? It was lovely to get away and be spoiled and the scenery was lovely even though the weather wasn't!

I'm now looking to getting the last step of my active treatment done but continuing with the new healthy lifestyle I've had since diagnosis - namely Mediterranean diet and exercise ( I try to walk an hour each day) . In answer to your question Sylvia, I finished taxol / carboplatin at end November. I had this regime weekly over 9 weeks and it was ok until the last couple of weeks when I got a chest infection which floored me somewhat. It did play havoc with my neutrophils and platelets (carbo is notorious for this) but all is back to normal now. I used cold mitts / socks throughout this bit of my treatment and have fortunately avoided any peripheral neuropathy.

Although im not a regular poster I do read the thread frequently and it is lovely to hear that so many of you are doing well, many years from diagnosis. We can do this ladies!

Chris xx

ChrisAsh · January 2017

Ps could someone remind me how to update my signature with details of surgery / radiotherapy. I tried to figure it out but my chemo brain wouldn't let me!

Thank you

Chris

sylviaexmouthuk · January 2017

Hello Gina,

Thank you for the details.

I do hope all goes well today with your tests.

Best wishes.

Sylvia xxxx

sylviaexmouthuk · January 2017

Hello Debra,

Congratulations on your five year healthy victory today. Thank you for posting in to let us know. You must be one of the posters who has kept in touch for the longest time. A lot of people seem to disappear without a word once they have finished treatment.

I was looking at the TNs and find that I know very few of the names now. Most of those who were posting when Titan started the thread have gone. We started the two threads at the same time, and I started posting first of all back in 2010 on the TNs. I recently noticed that Linda had posted and she does go a long way back. I also remember Slv from Ontario. It is good to know thay are both doing well.

Thank you for your kind words to all of us. You were a great poster and had such a lot to offer us all.

Keep up the good work and pop in when you can.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk · January 2017

Hello Maggie,

It was nice to hear from you and I am only too glad to be of help. It is always good to be as informed as possible.

Thank you for telling us your age. It just shows that there are no hard and fast rules about who can have these faulty genes.

There must be a reason for all these diagnoses of TNBC in younger and older women. I am wondering whether the 20% of women diagnosed with TNBC is increasing and am wondering whether the faulty genes are also on the increase.

I do hope your daughter will have good news. Keep us informed about everything.

Best wishes.

Sylvia xxxx

Calling all triple negative breast cancer patients in the UK

Comments

Categories