Calling all triple negative breast cancer patients in the UK
Comments
-
My sister's surgery went very well yesterday. The surgeon is pleased. She gets her pathology report in four days. I had my six month mammogram since my surgery. It came out just fine. I go back in six months to have both breasts scanned.
I'm very thankful! Thanks everyone for your concern!
0 -
Hello viewfinder and Flora,
I am just popping in to say I am glad your sister's surgery went well and I am glad that you, viewfinder, had a clear mammogram.
Flora, this is just a quick line to say that I did not think you were preachy. I always find your posts interesting. I really was thinking of militant vegans who are getting out of order. I am all in favour of a non-animal food diet but I would like to know what foods vegans are eating. Even though it may be plant based I would like to know whether they are drinking alcohol, fizzy drinks, processed foods, junk foods, sugar-filled foods and so on. Do they wear leather shoes and clothing?
Recently I have noticed that in the natural food sector more and more processed foods are coming out. Lentils are good for you, but lentil crisps??
I shall write more later and want to ask whether you have read about FAKE foods and, no, this is not a joke?!
Love.
Sylvia xxxx
0 -
I just got off the phone with my sister. Her pathology report indicates a THIRD SRUGERY is needed. They also gave her the option of a mastectomy. I'm so upset!!!
Any recommendations?
0 -
Hello viewfinder,
I was very sorry to read that your sister's pathology report indicates a third surgery is necessary. I know from some women here that, certainly in the UK, it seems to be that after two lumpectomies, if it is still considered that there are not clear margins, then a mastectomy is carried out.
Try not to be upset as your sister will be alright. If that were me I would opt for a mastectomy rather than another surgery for a lumpectomy. I was not offered a choice but I had made up my mind that I wanted a mastectomy for peace of mind, knowing that the disease breast had been removed. Please remember this is my personal opinion. It will be up to your sister to decide what she wants to do.
A mastectomy surgery is quite straightforward. My breast cancer consultant surgeon told me it took about 45 minutes and was not considered major surgery, unlike a hysterectomy or hip surgery. It is all outside the body. I was in hospital for five days until the drains that they put in cleared. I had no pain and the scar is barely noticeable after a while.
There is the possibility of having reconstruction surgery afterwards if your sister so desires. Some women have that done at the time of the mastectomy, but that makes the surgery so much longer. I did not want to have that, but if I had gone down that route I would have had it done later on when I had finished all my breast cancer treatment.
I do hope this helps. Try not to worry.
Love.
Sylvia xxxx
0 -
Thanks again Sylvia,
In the Surgery - Before, During, and After Forum, I started a thread called Third surgery recommended!!! What to do?
Jenkins00 responded "I had a BMX and the two more revisions after."
I didn't think you'd need additional surgery after a mastectomy.
We haven't gotten that far in the discussion. She mentioned getting a second opinion however it seems to me that the pathology report would correctly indicate that a third surgery necessary. I do know she's unhappy with her "coordinator."
I know she hasn't even gotten that far to think about reconstruction surgery. I've read something about it and it's probably not something I would consider, especially at my age (74). I understand that sometimes you have to go back for additional surgery after reconstruction. My sister is five years younger than I.
0 -
Hello viewfinder,
I have just read your last post and also the thread that you started in another forum.
I do wonder whether you will find an answer there. Everyone is different. I think it is very important that your sister does not feel overwhelmed and that she thinks about it all calmly and makes her decision.
It seems to me reasonable that she is being offered a third lumpectomy because the team must have found more cancerous matter and it is best to get rid of it.
In the book I keep by me for reference, the Complete Guide to Breast Cancer, which I have mentioned many times, there are chapters on all parts of the breast cancer journey and written by two women who have bee through it all. This is what it says:
"If you have invasive cancer (IDC) you will have either a lumpectomy or a mastectomy, as well as lymph node surgery."
In this book it also talks about margins.
"To make sure there are no cancer cells left behind, your surgeon will remove a rim of normal breast tissue, called a 'margin'. When your cancer is analysed, the pathologist checks to make sure that the margin under the microscope is a minimum distance of 1.2 mm between the cancer and the free edge – a 'clear margin'. If there are cancer cells closer than 1.2 mm from the free edge, you have a 'positive margin'."
This will need to be cleared.
As for pathology reports, I do wonder whether they are really helping patients. I certainly was not given one and I am glad about that. I have seen samples and some of the wording is for medical experts. It seems to me that they are another source of anxiety.
We do not need over-information filling up our brains when we are trying to get through our breast cancer journey.
My own personal opinion is that your sister would have more peace of mind by having a mastectomy.
I think you would find the book I mentioned a lot more useful than trying to take in all the various views coming out of some of the posts.
Thinking of you and telling you that you and your sister can get to the end of this.
Love.
Sylvia xxxx
0 -
Hi Mary,
Apologies for my late response. I Needed to get on with some work before Paclitaxel infusion yesterday.
My eyebrows will certainly require some work on them in the future. I'm not much good at drawing them in. I don't like the idea of the pain of micro cutting and think I'll probably just go in for a simple light tattoo. I Iike the low upkeep idea of eyeliner tattoos like your sister. But will have to stay pale and interesting. So much for creating a new me after cancer!
Decided to ice both feet and one hand yesterday. I used frozen peas and those large ice packs you can buy for cool bags. Very uncomfortable to say the least. also painted my nails with very dark varnish which allegedly helps to prevent nail damage. We'll see.
My 'hair' is just a fluffy head really, but it's a relief to see that it will return one day. It seems that some patients remain bald or very patchy.
My first Zoledronic Acid infusion was give immediately after Paxlitaxel yesterday. I've never heard of this before. Also my three years of infusions have been cut to two. I'm wondering how many you had, if any. I'm not sure if it was used five years ago?
Oh well, back to the grindstone.
Take good care of yourself.
Love,
Gill X
0 -
Hi Sylvia,
Thanks for your through and compassionate response! What you say makes a lot of sense. This is something my sister has to decide; just want her to make an informed decision. I will share what you said when she asks for any additional advice.
You're right that we do not need over-information filling up our brains when we are trying to get through our breast cancer journey. I guess I've been filling up my brain for two of us...two sisters diagnosed with breast cancer within three months of each other.
When my sister was first diagnosed, she told me that she had the same type of cancer as I do, so I've been shell-shocked with all that has transpired. Never knew there were so many varieties of breast cancer.
It's time to let go, and let God.
A few weeks ago, I sent her "Navigating Breast Cancer: Guide for the Newly Diagnosed" 2nd Edition by Lillie D. Shockney. I never looked at it since it was shipped directly from Amazon.
I wonder if "Complete Guide to Breast Cancer" would simply have duplicate content. I will do some research.
Sylvia, I'm amazed at the care and devotion you give to others who have breast cancer. You have no idea how much I appreciate all that you do for us.
Love back to you!
PS Is the book you recommend written by Trisha Greenhalgh and Liz O'Riordan?
0 -
Hello viewfinder,
I shall reply to your post later.
Yes, they are the authors of that book.
The whole title is The Complete Guide to Breast Cancer - How to feel Empowered and Take Control, by Professor Trisha Greenhalgh and Dr Liz O'Riordan - expert doctors and breast cancer survivors. There are 24 chapters and covers everything in simple language. Chapter 1 is entitled Joining the Cancer Club, 2 Breast Cancer and Overview, 3 Learning more and goes on right through to chapter 23 Secondary (metastatic) breast cancer, 24 Moving forward. You will probably be particularly interested in chapter 9, Having an operation, 10 Chemotherapy, 12 Radiotherapy.
I bought mine from Amazon about September 2018 when it came out. I found some of the diagrams very useful and interesting.
I shall look up the book you mentioned and see what it is like and perhaps buy it.
Love.
Sylvia xxxx
0 -
My sister emailed me her schedule this morning:
- Chemo first (four treatments over 12 weeks)
- Surgery afterward (date unknown) (possible mastectomy??)
- Radiation after that (date unknown)
She has a big decision to make.
My daughter will be there for the first round of chemo, which I understand is often the worst. Others will be with her during all of her other treatments and surgery. She has very good friends, who are like family, that will be with her throughout this journey. Some are flying in from other states.
I hope the US government shutdown is resolved soon. I've read that it's really affecting airports as workers call in sick.
0 -
Hello Sylvia,
Apologies or taking so long to respond to your last post.
I began making healthy changes to my diet as soon as I was diagnosed. Unfortunately, while I'm still trying to eat sensibly, I've found that my taste has changed during my treatments. I now eat what I can when I can. Not ideal and I Intend to press on with healthy dietary changes when I'm free of chemotherapy.
Thinking of Viewfinder's sister, I decided on a simple mastectomy as some research I indicated that women with smaller breasts, like me, were more likely to get better margins with mastectomy. My margins are 5mm. I think Viewfinder's said that her sister was quite well built though. It's certainly very disappointing for her. Like you, I found mastectomy quick and painless. No after effects once the seroma had been absorbed either. I was told that I had seven years to make a decision regarding reconstruction. I decided against it because the surgery is very lengthy. Also, I really wanted to check for smoothness regularly and some reconstructions, not all, are lumpy.
I did ask for my pathology reports following diagnosis and mastectomy. I was not fully informed after diagnosis and had no idea what metaplastic cancer was. It's not for everyone though. The problem in the UK these days is that Oncologists and their time is at a premium and explanations and answering questions are rather pushed to one side. I remember the shock of being told that I wouldn't be seeing an Oncologist at all and that no further treatment was to be offered. Knowing my pathology was essential in challenging this.
Hope all is well in Exmouth. Norfolk is very blustery today and much colder weather is on the way. The North Norfolk coast suffered from flooding last week as the sea poured over the walls, onto roads and into houses. Must be misery for those people who now have to get their houses dry and warm again.
Take care.
Love,
Gill X
0 -
hi viewfinder
It's very important to have clean margins when removing BC, whatever it takes. As Sylvia said your sis can reconstruct breast if desired.
I was scheduled for lumpectomy but later testing showed the tumor shape was uneven, the surgeon said it had "fingers." Since my breast was small, would not have been much left of it anyway.
By that time I did not care, just wanted to be rid of it. Glad your sis has schedule, and can get started with things.
Later, Mary
0 -
hi viewfinder
It's very important to have clean margins when removing BC, whatever it takes. As Sylvia said your sis can reconstruct breast if desired.
I was scheduled for lumpectomy but later testing showed the tumor shape was uneven, the surgeon said it had "fingers." Since my breast was small, would not have been much left of it anyway.
By that time I did not care, just wanted to be rid of it. Glad your sis has schedule, and can get started with things.
Later, Mary
0 -
Our beach, beaches are all public but ours is usually quiet and deserted, perfect.
Our timing was good, at home they had big snowfall.
0 -
We took a ferry to St John VI, they have much hurricane damage but beautiful beaches still here. This is Trunk Bay.
0 -
Me, whereabouts Cinnamon Bay St. John VI
0 -
Thanks Gill, Mary and Sylvia for additional feedback. My sister is meeting with her doctor this week and will make a decision on the type of surgery.
Mary, lucky you! It looks gorgeous in St John VI. Have a wonderful time and thanks for sharing the lovely photos!
0 -
Went to Ealing Hospital today to be randomised for the Add Aspirin trial. Only the pharmacist knows what I'm taking. Also asked the oncologist to take a look at a couple of sort of pimply things on my breast. Seems it's the hairs growing back and the folicles being a bit inflamed. You forget that there used to be hair pretty much everywhere.
Susie
0 -
Hello Sylvia, Maryna and all others.
It has been a long time since I have been on the forum, but want to let you know that I am well - we have had a family crisis here which involved our daughter, her husband, her baby and her 15 year old dog moving in with us and staying for a month. On top of that we had 6 other family members come and stay with us - we were bursting at the seams and it was exhausting for me.But I have survived - we have had 3 days now without people in our house and I am relishing the peace and quiet. The next week will see me do mountains of sheets and towels and then eventually get my house back in order and out of chaos.
In addition to this, I had a fall and tore the tendon off the distal joint of my baby finger - so it is in a splint for 10 weeks - fortunately it is not painful, but it is very annoying and inhibiting since I cannot get it wet.
I have not had time to read all the posts and to get to know the new members yet - but hopefully soon I will find the time to sit down and read the previous posts.
Wishing everyone a healthy 2019!
0 -
Maryna - enjoy your vacation - it looks fabulous!
0 -
Hello viewfinder,
Thank you for sending some details of your sister's treatment. Please keep us informed.
Love.
Sylvia xxxx
0 -
Hello Gill,
I do understand about food and eating during chemotherapy. I do remember a strange metallic taste for a little while during docetaxel (Taxotere). I think you just need to eat whatever gets you through. I just continued with my normal diet and also made lots of vegetable soups with whole wheat pasta and some tumeric.
Keep well.
Love.
Sylvia xxxx
0 -
Hello adagio,
It was nice to see you back on the thread. You seem to have had a very busy time and I really do not know how you have managed.
I was so sorry to read that you had torn a tendon in your baby finger.
Take your time to catch up. You sound like you need a rest. We are just a small group. We have viewfinder, US, who has had hormonal breast cancer but is posting for her younger sister who is about to start chemotherapy for non-hormonal breast cancer, with triple negative receptors.
Susie and Gill are from the UK, England. Susie has recently finished treatment and Gill is going through chemotherapy.
Mary, of course, you know and some of the others like Val, US, Kathseward, Helenlousie and cocooncat, Australia, pop in from time to time, along with Nancy from Canada. I hope I have not forgotten anyone. Marias and Hanieh seem to have disappeared.
Love.
Sylvia xxxx
0 -
Hello Mary,
Thank you for your photographs. I do hope you had a nice break.
Love.
Sylvia xxxx
0 -
My sister has decided to go to a new cancer team, one that was highly recommended to her, which coincidentally was mentioned to me in another thread: The Seattle Cancer Care Alliance, associated with Fred Hutch and the National Cancer Institute.
She has her first appointments the day my daughter arrives on the 23rd so in all likelihood they will go right from the airport to the appointments.
She sounds much relieved and it will be interesting to see what they recommend.
adagio, sorry about all you had been going through with your family and hope your torn a tendon heals well. Good idea to save the laundry for next week.
0 -
beach pic look beautiful - enjoy!!
0 -
Hi Sylvia
I'm back from sunnier climate, I returned to a cold fog and it hasn't really changed since I got here. Our trip timing was excellent, while gone my area received about a foot of snow, we are now expecting another significant snow over the weekend. The sunny beach seems far away!
Also while gone, one of my neighbors died, I attended her funeral yesterday. Also an old friend became suddenly very ill and she died while we were traveling home. Her funeral will be tomorrow. Not a jolly return at all. But the week away was very relaxing, we were right on the beach so spent time there every day and also traveled to a neighboring island, wandered around the streets and in and out of shops. We also had some very good meals and a few so-so meals, and we shopped for fresh fruit which was wonderful. A simple banana was so much better because it's just fresher than the ones we get.
I also received my first print copy of "What Doctors Don't Tell You" while I was gone, I am looking foward to reading it. I had a mountain of mail to go through, mostly junk but I have gone through most of it.
I did look at the thread while gone and saw that Adagio had posted and also HelenLouise. It's been pretty quiet here apparently. I also saw that you had posted on another thread that concerned Metaplastic TNBC. It would be nice if that person came here and could get support from Gill and vice versa. I hope she will be all right.
Other trivia: My older car still has no official diagnosis, but what they know so far does not sound promising, we will see. The repairs on my old farmhouse have not progressed very much while I was gone, I'm sure they will use the excuse of bad weather when I see the workmen! I did not think this would take so long.
I also saw that Theresa May had survived another vote, and I saw that NIgel Farage is back in the news and talking about the Brexit ordeal. I always enjoy listening to him.
I will talk to you again soon, and hope you and Raymond are handling your not-so-good weather well.
Love, Mary
0 -
Hi, Adagio
I'm sorry about your finger and understand your hand injury being very inconvenient to say the least. You have had a trying time, and I hope whatever the situation was going on with your family it came to a happy resolution.
I very much enjoyed my time away, it was one of the more relaxing vacations I have had, we did not get in a hurry for anything until the day we left, then of course it was the madhouse of airports; customs, long security lines and crowded planes. On the first day there we slept till 11:00 AM, we were so tired from the Christmas and New Year bustle and the trip to the island, it was wonderful to be away from it all.
I hope you have a great 2019, with happy days and interesting travels. Heal fast and we'll talk to you soon!
Love, Mary
0 -
Hi, Helenlouise
I was on the sunny beach for a week, then we had a long day of travel and I've been home for 3 days now and feel as if I've been wrapped in a cold, gray fog every day. My skin is still a little brown, so that's a nice reminder. Every time I come home from a trip, I always seem to be thrust right back into the mix, this time I have 2 funerals to attend with all that goes with that.
I'm glad the Xeloda has not been too hard on you, I do know a lady having a hard time with her feet being sensitive with peeling skin.
The end of treatment is an experience, it's like being sent out into the world on your own in a way. Instead of being in the routine of seeing doctors and nurses and treatment rooms regularly. And I agree with your view of life now, my perception of things now is very different from before. I have gottten 5 years older while all these things have happened, and I know that I should not get worked up about things that don't really matter.
I sat next to a lady from Aruba on one of my flights the other day, she talked about her travels and also her trip to Australia. She enjoyed it very much, but her husband said never again because of the very long flight. I hope to come to Australia within a couple of years, but am also not looking forward to that flight.
I hope you are well and continue to feel better and better, talk again soon,
Love, Mary
0 -
Hello Mary,
Thank you for your latest post. It must have been quite a shock going from sun and warmth to snow.
The sad thing about living on is that we see our friends and family die. I have no desire to live to a ripe old age (whatever that is?).
I do hope you enjoy What Doctors Don't Tell You.
As for the thread I am not sure what to say. There are not many regular posters but that is the only way that it will keep going. People who pop in very occasionally cannot expect necessarily to see it still existing and they get completely out of touch about what is going on.
I am somewhat disappointed that the woman with metaplastic TNBC did not come over to us to join up with Gill, who is so well informed.
As for Brexit, Theresa May has messed it up completely. We never should have had a Remainer like her in charge of Brexit negotiations. She lost the parliamentary vote on accepting her deal by a huge majority of about 236. That is the biggest defeat in British history.
She did win the no confidence vote put forward by the leader of the Opposition but only by 19 votes that she got from the insignificant DUP party in Northern Ireland. She is only in power as Prime Minister because she paid the DUP £1 billion to support her and the Tories and allow her to govern as a minority government. She keeps stalling everything so that in the end there will be no time to exit on March 29th this year as the majority voted to do. She is full of fake sincerity and stubbornly foolish. What with her and Margaret Thatcher in the past, I do hope not to see anther woman leader in my lifetime.
As for Nigel Farage, he is a good speaker but should not have stood down after Brexit and he certainly should not have told his members and voters to vote tactically for the Tories at the last election. If he had not done that we would not be having Theresa May.
Needless to say I am fed up to the teeth with all politicians. They do nothing for the ordinary people of this country and live in a privileged bubble. To coin a well known phrase, we need to clean out the swamp?!
Raymond and I are not so bad. We try to keep our spirits up despite the dreary January weather.
Take care.
Love.
Sylvia xxxx
0
