Calling all triple negative breast cancer patients in the UK
Comments
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Hello all,
I am back from my trip, it was a short one but wore me out!
Kath, I also did not get tumor markers. I asked about them after talking to women who did have them done, but my oncologist said they are not dependable in our kind of breast cancer and there is not much point to it. Plus, she said it is a process that needs to be started when the tumor is first studied.
Adagio, I am excited for your trip to India! I am currently reading "The Best Exotic Marigold Hotel", a book about a group of senior Brits who move to a old hotel in Bangalore that has been made into a retirement home. I just noticed that they take most of their meals in the home, and nobody ever mentions a problem with it. There are only a couple of them that do eat "street food" from time to time, but it is considered risky. It is a charming, well-written book, but probably not a dependable travelogue. I am glad Kath said it's not necessary to always take the malaria drug, doesn't sound pleasant. I hope you have a fabulous time, I'm sure you will, safe travels! I also always get the "travel nerves" before a trip, they will disappear as soon as you are on the way!
Lou, at one point I had an ultrasound on my remaining breast and my mastectomy side, but I think it was because I had a seroma for a while on the surgery side, and I complained of discomfort there. But I think that is with me forever, the numb, yet tingly and sometimes achiness on the surgery side of my chest. But I think too, if they are going to do an ultrasound they might as well do both sides, since they can't do a mammogram of the removed breast.
Sylvia, I am glad you feel well enough to come here again, I will post again in a bit.
Talk soon, Mary
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Hi Sylvia,
It is good to hear from you and that you are feeling much better.
My treatment profile is complete. I didn't go for radiotherapy same as Mary.
Yes, one tiny step each day and most of the time, it haunts me. I am still constantly checking myself. Every aches and pains sends alarming sound.
I will learn along the way their standard practice here. So far it is an alternate check up between my BS & MO for the next 2 years every 3 months. 9 October is my check up with my MO.
We will be in Malaysia again on 3rd week of October to celebrate the Deepavali festival. It is the Festival of Lights for the Hindus. We will be there for about 10 days.
We celebrate Christmas here but not as commercialised. In Philippines, we start decorating as early as 1 Sept and you will also start hearing Christmas songs played on the radio or malls. I normally decorate my place at 1 Dec each year.
Mary - That was my point as well. I thought they will be doing ultrasound for bothbreast.
Best regards,
Lou
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Hi, Sylvia
I hope you are feeling much better, sorry you came down with the bug and I do hope it is gone soon. We are entering that time of year when everywhere you go, someone is around sniffing and sneezing and coughing.
We had a nice trip for the family wedding, the family had planned something for every evening. It turned out to be much more elaborate than weddings around here. It was a beautiful area, we took a drive to the coast one day, about an hour away. Charming little towns with clapboard houses there, the area where we were for the weddinhg activities was quite upscale, but we weren't there long enough to get much more of an idea about it. We had a good time overall.
I see Adagio is going to India, how exciting. That is a huge country, all I really know of it is from books and movies. I'm sure she will have stories and pics when she gets back. I think Pam and Rhonda will be back, and 4everstrong pops in from time to time. Angie wasn't here very long at all, and I don't believe Galway was either. I hope they are all doing fabulously! And I hope Marias is okay, and the radiation is not being too hard on her. She is not having an easy time of it, that's for sure.
I will talk to you again soon, keep recuperating and I will talk to you again soon.
Love, Mary
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This is me happy to be in mountains a few weeks ago.
Mary
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hello Silvia and all of you.
I'm in my 12 radiotherapy session I'm being so tired and all the time in the machine some scared. My breast is more red that ever and my nipple pain. I hope this is will be finish soon.
Have a nice time.
Abrazos
Marias
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Hello Everyone,
I am back from my trip from Scotland, and all of my work was waiting for me. I'm trying not to overdo things, but I wanted to pop in and say hello. I'm doing this from my now-crummy memory, so I apologize if I forget something or someone.
Sylvia, the trip was a complete success. We walked everywhere, and thoroughly enjoyed the gray skies, green scenery, and mild rain. They seem to crave the sun, while we crave their late summer green and rain.
The city of Edinburgh was lovely, and full of things to see and do. And the villages, highlands, and lochs that we saw were very stunning. The Scots that we met were clever and hilarious. I had a lot of trouble understanding everyone almost all of the time, but I liked them. They have a lot of pride in Scotland, and I think they should. The food was very fresh and tasty, though a lot of it was fried. They really do love that haggis, too.
Mary, I really love that happy picture of you in the mountains. You mentioned having a seroma, and I have them on both sides. The onco doesn't seem concerned, but I am hoping that all of that fluid re-absorbs into my body someday.
Marias, I hope you have some improvement soon. I hate to think of you struggling.
Lou, I always thought they would ultrasound my chest if they had any concerns, so that's interesting to know. I'm so glad that you can travel. I think it's therapeutic. Maybe a lot of us are at the "travel" phase.
Kathyseward, I agree about the tumor markers. My ono admits that they are of little use, but because they are the only bloods that he monitors, an upward trend is followed up by a scan. He told me that it makes people worry over nothing. I will be retesting a very minor increase, well below my "normal" range in a month. It does cause anxiety, and may be all for nothing.
Here are pictures of Arthur's Seat and Princes park in Edinburgh:
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Hi Sylvia
Australia has had 38000 cases of documented flu since sept so we are experiencing quite a late surge. We have also had a few deaths from flu in quite young people and some children which is very sad! Our flu season usually follows on from the northern hemisphere but it's a bit different this year. The main type of flu we are seeing is flu a and b
Cheers
Kath
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Hello Again,
One more thing...Sylvia, do you have a way to keep the people in your life from giving you "stuff?" As you said, the holidays are on the way, and I want to avoid getting all of the things - thoughtfully given - that I don't want or need. I try to only give food, wine, gift certificates, etc. myself. Even better than that, I try to persuade people not exchange gifts at all. Any tips you may have would be appreciated!
Cheers, Pam
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Hello Lou,
Thank you for your kind words and thank you for reminding me that you did not have radiotherapy.
It is perfectly normal to have worry and anxiety after these cancer journeys. Cancer is a very frightening illness and I think very complicated. We do get through the treatment and we do slowly get back to a normal life. The important thing is to understand that your body has been turned up side down with harsh toxic treatment and it takes time for your immune system to strengthen and get back into a fighting mode.
I think the post-treatment check ups probably vary from country to country and even from patient to patient. In the first few years after finishing treatment I had check ups every three months, alternating between the oncologist and the breast cancer consultant surgeon. They are just a physical check up and may not seem much, but the consultants know what they are looking for. They do a physical breast check looking for lumps and any signs of something not normal. Since I had a mastectomy of the right breast, they would run their hands over the area and feeling for anything that was not smooth. They would look at the line of the mastectomy scar, looking for any sign of a rash, because this can be a sign of recurrence.
If they have concerns, they will order a mammogram and an ultrasound.
A patient can help themselves by doing monthly breast checks, touching and looking to see if there is anything that is not normal for them.
After about two or three years my routine check ups changed to every six months, again alternating between the oncologist and the breast cancer surgeon.
After five years I was discharged from the care of the breast cancer consultant. For the next five yeas I saw the oncologist once a year. I think she kept me on for ten years because of the triple negative factor, but I am not sure.
I was discharged two years ago. The oncologist told me if I had any concerns to go to my GP and that would be the route to make an appointment at the hospital if I wanted.
I still do my own breast check up once a month and just keep an eye on everything as well as I can.
I do hope this will help you and others to cope.
As far as my lifestyle is concerned, I eat a healthy diet, try to keep physically active and try to avoid stress.
Ever since I was diagnosed I have been eating bitter apricot kernels every day and drinking lots of green tea. My favourite teas in the green kind are Clipper leaf tea and QI gunpowder green tea.
I do hope you enjoy your stay in Malaysia for the Festival of Lights.
I know quite a few people who start Christmas shopping very early.
Keep well and keep happy.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I am pleased to say that I am feeling much better.
It sounds as though you had a very nice trip and you look very relaxed in your photograph.
I think we are all hoping everything goes well in India for adagio and her husband. It is a big adventure. When I think of India now I just see all the scenes from the series on the television about pensioner celebrities going to various countries to see if they want to retire there permanently. I do not think I could deal with a country like India now. I do not like crowded places and I do not like the heat.
As you will have seen, Pam has just posted all about her holiday in Scotland. She seems to have really enjoyed it.
I am quite concerned about Rhonda and the fact that we have not heard from her in a while. She did have some problems.
As you say, 4everStrong pops in from time to time and Angie and Galway were not here very long. I do wish people would tell us when they decide to move on.
I see that Marias has just posted, so I know tat she is having a difficult time.
That is about all for now. I have been dosing myself up with Vogel Echinacea tincture and I think it has helped a lot. I also took some organic honey to help the throat.
That is about all for now.
Talk again soon.
Love.
Sylvia xxxx
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Hello Marias,
Thank you for your post. Just hang in there. You have done twelve days of radiotherapy, so you are bound to be tired. Right now focus on getting to the end of this week. You just have to get through tomorrow and then you have Saturday and Sunday free. Get plenty of rest, keep hydrated, but try to get out for some gentle walks. Take some photographs for us.
The radiotherapy machine can be intimidating but you are not on it for long. I used to close my eyes and keep counting up to sixty and found they the treatment was soon over.
I think you must be assertive with your oncologist and breast cancer consultant and say that you want an explanation for the redness of your breast and the pain in the nipple. You need it for peace of mind.
I still wonder if the redness is because of the ILC type of breast cancer that you have. Only your oncologist can answer this. Only the oncologist can explain why you have nipple pain. There has to be a reason.
Remind me how many more radiotherapy sessions you have. Keep looking forward and telling yourself this radiotherapy is killing off any stray cancer cells. Keep your skin well moisturised. Aloe vera gel should be good.
We are all thinking of you and sending our love.
Sylvia xxxx
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Hello Pam, thank you for two interesting posts, and hello Kath and again thank you for an interesting post. I have been busy catching up, so I am going to take a break but I shall be back later on today to answer.
Pam, about Christmas presents, and birthdays etc., in the past I have told people that I do not really need anything but if they insist on buying then the best thing for me is a book voucher. The no-no's are chocolates, biscuits, sweets ans alcohol, as well as knick-knacks. I love flowers but I cannot have them in the apartment because of Raymond's allergies. I do tell people they should not buy others personal things for their homes!!!
Fond thoughts.
Sylvia xxxx
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Hello Pam,
Thank you for your post. I am so glad that you enjoyed your trip to Scotland. Do not spoil the benefit of it all by overdoing things. It is nice of you to take the time to pop in to say hello to us all.
It was good to know that you considered the trip to be a complete success and it was good to know that you did a lot of walking. The thing about Scotland is that it makes up a large part of the map of the UK, but it has a very small population compared to England, which is overpopulated. Scotland has only 5 million people compared to 60+ million in England.i think there is a lot of wild country in Scotland still, not to mention the lakes and mountains. It does rain a lot there and can be very cloudy and dull. It is no wonder they crave the sun.
it was good to know that you liked the Scots. In England we do talk about the dour Scots but from those I have known in England they are either full of the joys of life or withdrawn. I would say that former Labour Prime Minister Gordon Brown is a dour Scot, but Billy Connolly is full of joy and bounce and just listening to him makes you feel good. Billy Connolly is a well known comedian here and he has done programmes travelling through the States, notably Route 66. I am not surprised you had difficulties with the accent. You have to tune in. the worst accent to understand is the Glaswegian one.
I was glad to know you enjoyed the food. I do not think the Scots are reputed for healthy eating. I think they may like deep fried Mars Bars! Did you eat any Haggis? I have not tried it.
Thank you for the lovely pictures.
How are you doing these days?
About Christmas, I think it is a good idea to try to persuade people not to exchange gifts at all. I think a lot of people have too much and are cluttering up cupboards and homes. When I was in Canada I much preferred Thanksgiving Day when families got together and enjoyed a family meal. Christmas is too commercialised when it is supposed to be a religious day for Christians. I do not make much of a deal about it. In the shops here the big build up of Christmas stock has already started and it is awful. I just think there is over-production and abuse of vital resources.
As I said previously, my ideal gift is a book voucher. Where I live I do a lot of work as a volunteer director and my happiest moments are when residents here say thank you for all that you do and when they tell me how lovely the grounds are looking. I get pleasure from helping people.
Take care and ease your way carefully back into a post holiday routine.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
Thank you for your post and for the information about the 38,000 cases of documented flu since Septemebr. I have been hearing about how bad the flu has been. I think it is beginning to hit here in the UK. Do you know what strain it is supposed to be? I have heard strain A H1N1 (swine flu). I have also read something about avian flu. What is strain B?
There are lots of clinics being held for these flu vaccinations. I have not had one since 2005 when I was diagnosed with breast cancer. During all that time I have not had so much as a sniffle. Raymond and I are thinking we may get a flu shot this year but we want to get this bug out of our systems first.
How is your work going? I am very interested in what you do.
Yesterday on the television I was watching a programme all about research into ageing called How to stay young. The experts were testing people in various ways and one of them was telling people what their biological age was. There was one man who was 49 but his biological age showed up as 92. They were put on various challenges to get this biological age down. It was mainly through diet and exercise. One lady went from biological age 79 to 59. I think her birth age was 44. Another lady reversed her diabetes. A lot of ageing and illness seems to be due to fatty livers, fatty pancreases, too much body fat, over weight and obesity, and too much sugar played a major role in going down the slippery slope. I was wondering whether anyone else managed to see it. It was on BBC2 television here in the UK.
Take care and relax as much as you can.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Thanks for your thoughtful and detailed response. I always appreciate how thorough and attentive you are to the members of this thread. And as I have said before I hope; you help me, and I'm sure all of us, quite a bit.
I've been feeling much better, and noticed that I don't hit a "wall" of fatigue as early in the day as I did earlier in the month. I did very well on our trip, but I could rest when I needed to then.
I had to take a moment to respond, because we rested most of the time and watched TV in the evenings while we were in Scotland. One of my favorite shows was "Location, Location, Location." But we also saw a part of the exact BBC2 program about aging that you mentioned. I told my husband that I wished we could see it all, and that I thought you have better quality TV shows in the UK than we do!
We did try haggis, and it was not as gruesome as it sounds. It was like any ground meat mixture - neither amazing nor terrible. But we heard about it all of the time, and different people that we met mentioned cooking it at home, cooking it for 60 people, and so on. It seems like a very regular thing to eat.
We were lucky enough to be taken to Gullane and Musselburgh, near the shore, and the person that we were with said that Billy Connolley has a home in one of those places. We are certainly familiar with him, and I agree that he seems full of joy. The people that we met seemed full of joy too.
Hope you feel better soon,
Pam
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hi everyone
In Sydney for work. Sylvia we don't get a lot of H1N1 strain here and it is in the current quadravalent vaccine we use. It covers for 4 strains and changes each year depending on the most virulent strain which is noted from ur winters in the northern hemisphere as you go through them before us. The vaccine covers that strain which is different every year, flu A, Flu B which is very common and H1 N1. It's only been about 75% effective this year so they are discussing whether a boost will help. This is the view from my hotel window in Nth Sydney. Very hard to take!!!
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Hello Pam,
Thank you for your very kind words. I am so glad to be of help to you.
I was glad to read that you have been feeling much better. Time is the great healer. I think you have been coping really well given that you have been working as well as coping with breast cancer treatment.
I was interested to know that you enjoyed the programme Location, Location, Location. I think it is probably a great favourite with television viewers. I do not watch a great deal of television and rarely watch anything before about 7pm. I do like programmes about health and I see this coming week there is yet another episode about superfoods. It is not that often that so-called superfoods stand up to testing. I think this week they are talking about baobab which is the latest cure-all. I tend to stick to simple food.
I was interested to read that you think television is better here. I know that people moan a lot about it and say that it is a load of junk! I suppose it depends on what you are looking for. I tend to look for information and education rather than entertainment. I do watch the news channels but tend to watch RT and TV5 French news.
You obviously took in quite a bit about Scotland.
I hope you are having a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
Thank you for your post and the information about flu vaccines.
I really enjoyed looking at those two photographs you posted. I noticed among many other things the big wheel! They seem to be everywhere. They even had one on the Exmouth seafront this year for the season. It was very popular.
I hope you are having a good weekend.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia and all,
Sorry I haven’t posted.I had a CT scan the beginning of September and I have to have a biopsy on my liver.Havent started Xeloda.I feel fine and I am back to work.This Tuesday is much biopsy in NYC -not thrilled about going there.My daughter is going with me.I miss
Going to Dana Farber in Boston for a second opinion
Rhonda
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Hello all of you.
I hope you are good without any flu.
Last Friday was my 15 radiotherapy sessions and they say we cut now and start on 9.October.
I'm really really tired I didn't go out of bed yesterday today I feel better.
My breast is purple and has a.little blister near the nipple. I wish this finish soon.
Abrazos
Marias
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Hello Rhonda,
It was so nice to hear from you. We are all very attached to our group and get concerned when we do not hear from certain people.
I do hope you will have good news from the biopsy on your liver. It is always an anxious time after a CT scan to have to have a biopsy.
I suppose you will start the Xeloda when you feel ready for it and your doctors think you are ready for it.
It is good to know that you are feeling fine and that you are back to work. Take it easy at work and do not overdo things.
We shall all be thinking of you on Tuesday and I am glad to know that your daughter is going with you.
Keep in touch and let us know how things go.
Keep telling yourself you are going to get through all this.
Fond thoughts.
Sylvia xxxx
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Hello Marias,
I have just read your post and I am so sorry to read that you continue to have such a difficult time.
It is a pity that you have had to have your radiotherapy sessions stopped for a week, but a week of rest will probably do you a lot of good. Take care of your skin during the coming week.
Rest and sleep as much as you can. Sleep is good for strengthening the immune system.
I was not surprised to read that you had to stay in bed all yesterday. You must be exhausted.
What have the doctors said about your breast being purple and that there is a little blister near the nipple. Have they given you anything to put on it? Have they said why the breast is purple? Is it some kind of bruising? Cancer patients do bruise very easily with chemotherapy and all the rest.
Keep in touch with us while you are at home for a week, so that you have someone to talk to and to support you. Is your brother still with you?
Drink plenty of fluids and try to eat small healthy meals. Do you drink any green tea? I drink loads and it is supposed to be very good for you.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Hello Pam
Glad you had such an awesome trip to Scotland, loved the pics you posted. I was curious about Arthur's Seat, so I Googled about it and learned why it's called that etc. It apparently did not have a whole lot to do with King Arthur, except 1 myth says it could have been the site of Camelot.
I wonder if the haggis is somewhat like what my parents and grandparents made. They would save the heads of the animals and boil them and then take whatever meat what left on them and the broth and thicken it with flour and cornmeal and pour it in pans and then cut it into logs, that was called panhaus. I remember as a child when they were butchering pigs and cattle they would save the blood in buckets and later thicken it with cornmeal and flour and stuff it in clean intestines and called it blood sausage. The better pork meat scraps were stuffed into intestines for pork sausage. My brother and I still every so often will make panhaus if we can find large cheap pieces of pork and bones of some kind. We have several family members that enjoy it as a treat. Other than that, I seldom eat pork or beef. When I was growing up, we raised small numbers of pigs ourselves, now the big industrial pig farmers have taken over that business, and who knows what they give them. We would also have a small cow herd at all times, they were like members of the family and I had to learn not to get attached to them.
I see you also have seromas. My BC surgeon drained mine 3 times, she stuck a needle in it and withdrew fluid, getting less each time. The last time I went in she did an ultrasound, and told me that fluid was gone, it still looks puffy but she said it is just normal tissue. She told me that when fluid is in there for a while the inside skin gets very slick and it is hard for the fluid to re-absorb. If the seromas are large, she will sometimes go in and "roughen up" the interior to make it easier to be absorbed.
I have given up on the Christmas fight over gifting. I told several people (not immediate family) years ago that we had decided to just give the little children a gift to open but were going to stop with the adults. That lasted one year and then when we went to visit we were given gifts again, and it started again. I tried with extended family too, but was told by a couple of them that I could do what I wanted but they were going to keep giving everyone gifts because they love Christmas, not sure how to deal with it all either. I tell step-kids if they insist on giving me something, to make it gift cards to bookstore. They think that is too cheap and lacks imagination, never mind it is what I want! As I said, I have given up! Let me know how you do, please.
I know what you mean about the "wall" of fatigue; up till about a year ago I would have to lie down every afternoon, which was very unusual for me. I no longer do feel that need, but found it just takes a long time to get over the effects of the chemo and in your case, radiation. I wasn't warned by medical staff that it would take that long, my MO said chemo is out of your body in 6 weeks and then you will start feeling better. No, it takes much longer. But you are doing well, traveling is a great test, and you are traveling and enjoying and if you need rest at times, then just do it, and eat well, and know that you will get stronger.
Talk to you again soon, love,
Mary
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Kath,
Love the pics of Sidney and the harbor you posted, it looks like a wonderland, by day and night. What a view! Hope you are feeling well and strong.
Mary
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Hello, Sylvia
I hope you are feeling better this week, and the echinacea has done its' work.
I woke up to terrible news of a sniper shooting in Las Vegas NV last night at an outside concert. 50 dead for now, but many wounded. There is no defense against something like that, it is just one tragedy after another around the world on a daily basis, have no idea what's the answer or if there is an answer.
There is another post from Chris Woollams. I skimmed over it quickly and it is rather short, not much new there.
If you are inclined or have time, next weekend is the 2nd Annual "The Truth about Cancer" event. It takes place in Florida this year, I went last year but not this year. They will be live-streaming it for free, Oct. 5, 6 and 7. All you have to do is go to TTAC website and sign up with email address, and you will be ready to livestream all or none of it, totally up to you. I found it a great experience, with many very good speakers on many different topics.
I am off for now, talk to you again soon, hope you are back to feeling well, and Raymond too!
Love, Mary
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Hi, Rhonda
I am sorry you are having to go through this now. I did actually have a liver biopsy many years ago and it was not bad at all. They gave me the "twilight" drug and it was all over before I knew it. I was a little tired the next day and that was it. I do hope you have a good result from yours, and it is only a cautionary measure.
Glad you are back at work and feeling well, sounds like you have your ducks in a row by already having second opinion scheduled, if I am reading your message right.
I will be thinking of you tomorrow, let us know how you are.
Talk again soon, love, Mary
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Hi, Marias
I am sorry your breast is still so sore and has a blister, maybe the time off from radiation will help it heal.
Are you starting your Letrozol now in October? I remember your surgery is October 18th, right?
Sorry you are having a hard time through all this, I wish I could be there to hold your hand, I am still holding you in my thoughts.
I will talk to you again soon, love
Mary
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Hi, Lou
I am glad you are feeling better all the time and now have a trip to Malaysia to look forward to, the best medicine!
I guess we will always have that thought in the back of our heads about recurrence, I know that every day I feel my breast and the surgery area, probably more than once. It's just something we will have to learn to live with, I think.
There was Christmas stuff in some of the stores here already in August, after Halloween at the end of October it will really get non-stop with all the advertising. It's too bad that I have come to dread this time of year, when it used to be something joyful and warm and simple. But that was many years ago, I guess.
Keep doing what you're doing, sounds like you are doing great.
Talk to you again soon, love, Mary
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