Calling all triple negative breast cancer patients in the UK
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That is awful news to receive, @maryna8. Hoping you can get a medical oncologist as soon as possible. Do they have any idea yet of the staging?
Another thing that could be beneficial is getting additional emotional support outside of family and friends. Have you thought about reaching out to a therapist that specializes in working with cancer patients?
Holding you in our thoughts. ❤️
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Hello Mary,
I have just checked in with the thread to see if you had posted and I was shocked to find your bad news. Just tell yourself that you will deal with this as you dealt with your breast cancer diagnosis. I do hope your primary doctor will deal with this quickly and that you will not have any delay with your PET scan and with obtaining a new oncologist at a different place.
Is there any connection between this pulmonary adenocarcinoma and your breast cancer?
I do hope that Gill will be in touch on the thread. Have you been in touch with her?
My thoughts are with you. Sending you much love.
Sylvia xxxx
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Hi Mary,
I honestly thought you were going to have some good news, I can hardly believe it. You've been through an aggressive breast cancer and come out the other side, this is so unfair. I'm going to do some online research into your diagnosis. I expect you have a lot of questions that you want answering fast.
I hope you have someone to support you throughout your treatment. I'm praying that since the cancer was found on one lung (you don't mention the other lung) it may be possible that surgery, without the need for chemotherapy could be possible. What a horrible year 2014 is turning out to be.
This cancer may be at a very early stage. You'll know where you stand after the PET scan. You're a tough woman, you've been through the mill more than once in the last few years and come out the other side a little bruised and battered, but still standing. I'm going to have everything crossed for you. Candles will be lit and prayers said.
I hope you'll let us know as soon aas the scan results are through.
Good luck Mary.
Much love, Gill xxx
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Hello Gill,
Thank you for your email to me. I am on the thread so have decided to post an answer here.
I am, of course, thinking of Mary but I think we need to wait calmly for the results of the PET scan and for what the new oncologist has to say.
I remember, when I was diagnosed with non-hormonal breast cancer back in 2005, there was concern that they had found high levels of calcium in my blood, which can be a sign of metastases. The oncologist and the breast cancer surgeon (who was also an endocrinologist) carried out a sestamibi scan to ascertain that the high calcium was caused by an over active parathyroid gland on the lower right side. This was removed and the problem went away.
There is research showing that there is a connection between hyperparathyroidism and breast cancer.
I do hope Mary will get news quickly and be told what the treatment is.
As for Raymond and me, we carry on as best we can. Raymond has slowed down a lot since the triple bypass surgery. It was four years since that surgery on Valentine’s Day. I have been very busy looking after him, as well as my cousin in London, and trying to support both of my younger brothers who have their own health problems. I am still a director at out apartment complex. I do not have much time for myself.
I do look at the Active Topics, at least the first couple of pages. I do get the impression that more and more drugs are being used in the treatment of breast cancer, especially hormonal breast cancer, but the old drugs are still there that I had for triple negative breast cancer.
I still do not take anything for granted, especially as I had that problem with malignant melanoma on my right arm in 2017 and had to have two surgeries on the arm to remove it. I was told that all was clear, but it still worries me. It was obviously due to the radiotherapy treatment.
I do hope you are not overworking and that Michael is keeping well. The weather has been dreadful for so long that it takes an effort to keep positive.
By the way, I did not know that breast cancer is classified as an adenocarcinoma, along with cancers of the colon, pancreas and kidney and a few others.
That is all for now.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia
I also noted that breast cancer is an adenocarcinoma, but haven't studied it anymore.
I have an appt with an Oncologist today, my Primary called 2 or 3 hospitals/clinics, he said to go to the 1st one that takes me, while knowing I could still go to another place for 2nd opinion. However, I'm not sure what to expect, since I think they are still going over genetic testing etc. Etc means I don't know what I'm talking about really, it's what I can make out of the biopsy report.
I'll let you know what I find out, if anything.
Love, Mary
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Hello Mary,
I just wanted to let you know that I am thinking of you and wanted to offer words of encouragement. You will get through this, Mary. We all know what it is like when we first get a diagnosis and all the detailed checking and tests that are thrust on us before we are told what the plan is. Just keep an eye on everything and make sure that you understand everything that the medical people are saying and that they do not get lost in medicaleze.
Remember, this is your body and you make the decisions.
How are things going across the pond?
I do hope they are not as chaotic as they seem here. On Wednesday Prime Ministers Questions was a complete and utter shambles. Many MPs walked out and there was pandemonium. It was truly shameful. To think these people represent us!
Our weather is miserable. It just rains all the time.
I do hope Gill will be in touch.
Take great care of yourself and remain strong and confident.
Sending you love and best wishes.
Sylvia xxxx
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Hello Mary,
I decided to have a look at our thread to see if you had posted anything, although I realise that it is only a few days since you saw the oncologist. It must be awful for you to have all this waiting. Please let me know when you have any news.
There is nothing from Gill, but I hope she will post. I know we are all upset about this new format on the forum. It cetainly lacks the togetherness of the old forum. "Leave a Comment" does not sound quite right!
I have been having a look at how many posts/comments are coming into this thread and how many views. It appears that we have had 689 views since I last posted, which brings the proper total of views since we started the thread way back in 2010 to 150,136.
It was encouraging to see that the viewing is quite good but sad that there is very little posting.
I would so like to hear from someone who has just started or is going through, or has gone through, triple negative breast cancer treatment recently. I am interested in what the difference is between what we had and what new patients are now having. It would be interesting to know what is happening in the US and what is happening in the UK with TN treatment, or, indeed, anywhere else in the world.
The weather here in Exmouth is dreadful, howling winds and pouring rain.
Keep strong and be positive. We are here for you.
Lots of love.
Sylvia xxxx
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Hi Sylvia
The week coming up, I have tests Tuesday and Friday, then will see oncologist. He will tell me what Stage that I am, and it will be either Stage 2 or Stage 4. He told me that much, what happened to 3?
Anyway, a tense week coming up for your friend Mary, I'll let you know after Friday.
Love, from your friend, for 10 years now
Mary
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Hello Mary,
Thank you for taking the time to post, given all that you are going through.
It looks like a busy week for you.
I shall be thinking of you on Tuesday and Friday when you have more tests and then when you see the oncologist. I do hope he will have good news for you. it is certainly taking a lot of time to get answers and that is always the most anxious time.
It was strange that the oncologist has said that it will be either stage 2 or stage 4. As you wonder, I wonder what happened to stage 3? I know that for breast cancer, when I was going through the initial stages, everything seemd to be dependent on the size of the tumour and I remember being given not only the stage, but the grade and then the automatic treatment because of this, and I was told I would definitely need a mastectomy, chemotherapy for six months before the mastectomy to try to shrink the tumour, and then three weeks of radiotherapy with boosters.
I shall be thinking of you all this week and waiting for your posts.
Have you been told anything about whether this is a new primary in the lung or whether it is something connected to your breast cancer?
Take great care of yourself and try to do something calm and pleasant while going through this week.
I did hear from Gill and I know that the non-stop rain here has caused them problems.
That is all for now. Take care.
Love.
Sylvia xxxx and Raymond sends his regards.
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Hi Mary,
I haven't stopped thinking about you since your diagnosis. I'm praying that your cancer's been caught early and you're still at stage 2. I do hope you have someone supporting you. Let us know when you have some more news.
Take good care of yourself Mary.
Much love, Gill xxx
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Hello Mary,
I am concerned that I have not heard from you and I was wondering whether you had seen the oncologist and what he/she had to say.
There is nothing very interesting going on with me in Exmouth, but plenty of turmoil going on all over the world.
Hope to hear from you.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia and Gill
I'm here finally. It has been rather hectic with the testing, and with my Virgo mind trying to plan ahead and stock up necessities. The Cancer Center this time is an hour away, my brother has been driving me so far. So far I feel better with the place than last go-round.
I was told last Friday that I am at Stage 2b, and they call it Curable. With chemo and surgery. I will be given 3 drugs (I think carboplatin, Paclitaxel and one of the new immunology drugs.) 3 drugs, 3 infusions, 3 weeks between each infusion.
I have not looked up all the side effects, it would only add to my worries. The tumors are small, but have doubled in size since January.
Sylvia, this is not related to the TNBC. I asked that question early on, and was told it was a new Primary. Just lucky I guess.
I will talk to you soon. My first infusion is next Tuesday, the 12th. Perhaps after that I will have more quiet time to chat, I'm praying I don't get as ill.
I'll talk to you soon
Love, Mary
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Hi Mary,
Such a relief to know that you've been diagnosed as 2b and not 4. Your tumours do seem to be growing quickly, so I'm very glad that your chemotherapy will begin on Tuesday. I know how much you dread chemotherapy, but needs must. I'm hoping that the side effects will be less than last time. Also, you won't have to juggle your treatments with caring for a very sick husband this time.
You remain in my prayers Mary. I have everything crossed for a full recovery.
I'll be thinking of you on Tuesday.
Much love,
Gill xxx
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Hello Mary,
I had an email from Gill and she told me that you had posted on the thread, so I just wanted to say that I was glad to read that it has not come from the TNBC and that it is a primary tumour that can be cured. You will get through this. I shall have another read tomorrow and study the drugs and treatment etc.
I understand what you mean by the Virgo mind!
Get plenty of rest now and get ready for the treatment programme.
With lots of love.
Sylvia xxxx
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Hello Mary,
I was having another look at your post.
I understand that you do not want to look up the side effects, but forewarned is forearmed. We all know about the taxanes (Paclitaxel and Docetaxel) but I do not know much about carboplatin except that it is an anti-cancer drug and is used to treat lung cancer among others. The immunology drugs are very popular. They are self-explanatory and seek to stimulate the immune system.
I get the impression there are a lot more drugs being used nowadays. Even so, when I think back to 2005 when I was diagnosed and had chemotherapy before surgery, I had epirubicin, cyclophosphamide and docetaxel (Taxotere).
Thank goodness you are now starting chemotherapy quickly on Tuesday March 12th.
Remember to take it easy and do not get overdoing it.
Gill and I will be thinking of you.
Love and best wishes from me and Raymond. xxxx
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Sylvia and Gill
One thing about it, everything in my body has been scanned by now, except my feet. I have found I love the word "unremarkable" when it comes up in scans. I am happy that the pains in my back are Arthritis, not cancer. I find it fascinating that I was injected with a radioactive agent mixed with sugar water before my Pet Scan. The sugar goes to tumors and the agent makes it light up. I had not had a Pet scan before so didn't realize that.
"Needs must", I like that Gill! I do not have a port this time, Doc said he didn't think I need it. He said he thought it was put in before because I was given Arithromycin, same as Epirubicin I think. He said that is very hard on blood veins. Sylvia, I think you didn't have a port and you are fine. But then you are a wonder!
Talk soon, love, Mary
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Hello Mary,
I was interested in what you had to say about PET scans and how they work. Over the years I found reference to having PET scans coming up very often in posts from American women, but not very often from those in the UK. I am not sure how often PET scans are now used in the UK. We seem to get nothing but bad news about cancer treatment in this country that you hardly dare to take it all in. There are so many cancer patients waiting for treatment here. I have never had a PET scan and have never had an MRI scan. After diagnosis I had a CT scan and a bone nuclide scan. I have had no check ups since I was discharged in 2015 after having check ups once a year for ten years, mainly by the oncologist, I was discharged.
I do like the fact that in all of this you are managing to focus on the positive with word such as except my feet, the word unremarkable, and the pains in my back are arthritis, not cancer! I know that you are going to have a positive mind in all of this. Well done.
I think it is probably good news that you have been told you do not need a port. It is something less to go wrong.
You are right, Mary, I did not have a port. I do not even remember being offered one. I remember I had a large tumour and had six months of chemotherpy to try to shrink it, to make surgery easier. I had epirubicin, cyclophosphamide for the first three months, going every three weeks, and then docetaxel (Taxotere) for three months every three weeks. You will be following more or less the same kind of rhythm.
You are going to be alright. It is true that the veins tend to harden as the treatment goes on and the oncologist nurse may have trouble finding a vein but they always find one!
The trouble with ports is they can always split.
I shall be interested to know what immunology drug you get. They are very popular now.
It is good news that this lung cancer has not spread from TNBC. It is much better I would think for it to be a primary lung cancer, stage 2b and curable. That is a good word to hear.
I do hope you are managing to relax.
I have been watching and listening to all the news about Palestine, Ukraine, and your neck of the woods with your approaching Presidential election. I am very surprised that Biden is going to run again.
I shall not be voting in our General Election and will probably not vote again. None of them is worthy of my vote and they are all playing games.
It is such a pity that all the details of your TNBC treatment have disappeared – so much for improvement of the forum! I have noticed on our thread that as the number of views go up the system is subtracting them instead of adding them!
That is about it for now.
Love and best wishes.
Sylvia xxxx
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Hi Mary,
I was thinking about you yesterday. Hope you're first infusion was easy with unremarkable side effects. You're so right to like that word. I'm wishing you lots of unremarkable tests and scans. At the end of all that, I shall wish you a remarkably good result🙏
When asked how he was coping during the more challenging months of World War II, Winston Churchill said that he would just "keep buggering on". A bit like you have to do now. It's not pleasant, but you'll get through it and come out the other side a bit the worse for wear for a while. Then you'll pick up the pieces and get on with life - after a holiday I hope.
You are in by thought and in my prayers.
Much love, Gill xxx
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Hello Mary -
I was stunned when I got on last night to catch up on any new posts and saw your diagnosis. I have no words other than we are stronger than we think we are even in our weakest moments. I also know that all the platitudes that people give in times like this never seem to help at least they never did for me I just took them as a caring person trying to say something that they hope will help. I do think with some of the new immunotherapy treatments that are using now there has been much success. I know we live in the same state of Missouri, and you are in the southern part of the state, correct? Where are your treatment being done? What health care system? I know that everyone in Kansas City usually goes to the University of Kansas Healthcare for cancer treatment. There are lots of very good Doctors that are working with new treatments there. I hope you will keep in touch and let us know how your chemotherapy treatments are going. I can't remember in your lasts post but will you have surgery at some point? Is your surgeon with the same healthcare system as your oncologist? I want you to know that I will keep you in my intentions of my prayers and sending as much good energy as I can your way. - Paula
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Hello Mary,
I have just looked at the thread to see if there was any news about your treatment and to let you know that I am thinking of you and willing you through this. Please make sure that you do not overdo things.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I just wanted to say thank you for your email. I have got a lot going on at the moment and feel somewhat rundown, so I thall just say that I hope all goes well with you and Michael and whatever treatments you have.
As for this country of ours I have really given up. I could not believe the fiasco that Prime Ministers Questions was yesterday. I did not even watch all of it. Raymond has just told me that he has read that the UK is the second most unhappy place to live in the world. Uzbecistan is the worst and Yemen is ten places above the UK!
I shall be in touch later. Look forward to your cruise.
Love.
Sylvia xxxx
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Hi Paula, Gill and Sylvia
How nice to hear from you and thanks for all the hopes and prayers you are sending. I'm going to Missouri Cancer Associates, affiliated with Boone Hospital in Columbia MO. It is an hour's drive coming from south of Jefferson City, my brother has been driving me.
I'm on Day 3 of my infusion cycle, I can tell the steroids are wearing off. I will miss the false energy they give!
I'm being given 3 drugs in infusions. Paclitaxel (Taxol), Carboplatin, and Nivolumab (Opdivo), with the last one being the immunology drug.
My Oncologist and the Surgeon both work under the wing of Boone Hospital and it's across the street.
I'm being reacquainted with my old nemesis constipation, which is bothering me already. But as the good Mr. Churchill said, Gill, I shall keep buggering on!
I did get a haircut yesterday, it looks nice I'll hate to lose it, but I will, they say. Haven't got as far as getting turbans or a wig, except for my old one. They have a roomful however!
I'm going, thanks all the love: Sylvia I'll try not to overdo, and hydrate, hydrate.
Talk soon love, Mary
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Dear Mary -
Thank you for the update! Yes hydrate and hydrate! Popcorn is good fiber if you like it, but it may not be the fiber that is causing the constipation but just the infusions that are slowing your system down. I'm glad to hear that your Oncologist and surgeon both are under the same wing of the hospital! Maybe that should be our motto…"keep buggering on"!
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Hello Mary,
It was nice to hear from you and to learn how you are coping. It was also interesting to learn how your health system works and compare it to ours. Your system sounds organised, whereas ours, especially now, is chaotic. It sounds as though it should be straightforward, but that hours journey is long. I am so glad you have your brother driving you.
With the drugs that you are being given in infusions, are you having all three together? We should all know about the taxanes, paclitaxel (Taxol) and docetaxel (Taxotere). I doubt if there is much difference between the two. I do not know much about carboplatin. In my BMA Guide to Medicines carboplatin is listed under other drugs used for cancer treatment. I know that it is used for lung cancer but I do not know if it is relatively new or one that has been around for a long time. Apparently it goes back to 1989, so I suppose that is long. Of course, we shall all be more familiar with breast cancer drugs for triple negative.
As for nivolumab the spelling gives it away as a monoclonal antibody.
I do hope you will feel better as the days move on. As you will remember, a patient is supposed to feel better as the days wear on. Just when you are feeling not too bad, you have to get ready for the next infusion.
You mentioned constipation. A very good way to relieve this is a strong mug of black coffee. I would think a regular way is to have plenty of fruit, especially ripe pears and keep drinking plenty of water.
We all know how difficult and upsetting losing your hair is but it will grow back. Get yourself a nice wig.
Keep positive, Mary. Thinking of you and sending you all my love.
Sylvia xxxx
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Hello Sylvia,
Thank you for your message. No rush at all to respond. We both seem to be in the same boat, too much to do and feeling run down and utterly fed up with it all.
Just concentrate on taking good care of yourself and Raymond. Get plenty of rest. Everything else can wait .
Much love,
Gill xxx
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Hi Mary,
You're on your way. First steps taken and getting on with it. Nothing much else you can do, but knowing that doesn't make it any easier. I'm very glad that your brother's driving you, an hour there and back is pretty exhausting when you're having chemotherapy.
I guessed you'd lose your hair again. I didn't bother with scarves or turbans, wore my wig all the time. Much easier and quicker. Not much fun watching your hair drop out after going through the whole thing just a few years ago. Fortunately, it doesn't take long to grow back.
I had the opposite of constipation and had to cut right back on fibre. Paula mentioned popcorn. Lentils, pears, nuts and sweetcorn are good too.
Good idea of Paula's. Keep buggering on, our new motto🤭😅🤣
Another candle will be lit for you tomorrow. You're costing me a fortune in tealights!
Plenty of rest Mary, no trying to do too much, no worrying about housework and definitely no gardening. Go green - weeds are good for the pollinators and long grass is home to thousands of different insects. I'm using that excuse myself.
Take care Mary, love Gill xxx 🙏
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Hello Mary,
I do hope all is well with you. I have just looked at the thread and discovered that there have been no posts since March 18th. Gill was the last person to post and I have not answered that because I felt under the weather and had a nasty visual migraine last Thursday which made me feel peculiar.
I have been wondering what is going on with you and whether the chemotherapy treatment is taking a heavy toll on you. I do hope it is not but I cannot imagine what chemotherapy may do when it is a second round and to treat a different kind of cancer.
Please come back as soon as you can.
Sending you lots of love.
Sylvia xxxx
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Hello Gill,
I had just typed a nice long post to you when the computer crashed and I lost is all. I have only just got the computer back working. I was saying there was no news from Mary and I was concerned. I was also asking how Michael was and whether you had found out what was causing his cough. I was also asking about you and how your procedures were going.
I shall have to leave the rest for now.
Love.
Sylvia xxxx
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Hello Sylvia,
I didn't realise that you suffered from migraines. I haven't had one for many years, but I do remember how ill they made be feel. They used to sap my energy for days and leave me feeling ill and nauseated. You have all my sympathy.
Michael's x-ray came back clear. Getting the results was difficult as no one from the surgery contacted him. He still has a dry cough. The nurse suggested it could be a side effect of his ace inhibitor medication. No further investigations and he didn't see a GP at any point. Not very impressed at all.
I too was wondering how Mary's chemotherapy was affecting her. I know she dreaded having to go through it again, but there's no viable option. I just hope that she won't need as many cycles this time.
I heard from the plastic surgery department that due to covid, my appointment will be weeks, (more like months) away. I wasn't really considering the diep flap option, 7 or 8 hours on the operating table doesn't seem very sensible at nearly 70. The surgeon who's doing the implant just wants me to consider this option before making a final decision.
I do hope you're feeling much better now Sylvia. As you know, stress isn't good for migraine sufferers. You need to relax more. Easier said than done, but your health comes first.
Take good care of yourself and Raymond.
Much love,
Gill xxx
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Hello Gill,
I just checked the thread and noticed your post. I do not suffer from migraines. The thing I had I have only had once before, a few years ago. Apparently it is called a visual migraine and Raymond has had them in the past. They are flashing coloured zigzag lights that are in your line of vision. There is not necessarily a headache. They can last for a few minutes or some say for twenty minutes. Mine were about five minutes but they were very uncomfortable and disconcerting and my blood pressure shot up. I did feel exhausted. I have gradually got my blood pressure more or less back to normal. It is due to stress and I have been under a lot of stress.
I was glad to know that Michael’s x-ray came back clear. I was interested to know that he has a dry cough and that he is on Ace inhibitor medication. If it is ramipril it is often used to lower high blood pressure and it is well known for causing a chronic dry cough. Raymond was put on it when he went into the RD&E after his heart attack. He soon got himself of it, but not before it had started a cough. I have a friend here who was put on it for high blood pressure, and there are a few other people here as well, and all of them got a persistent cough. I think Raymond was changed to losartan which belongs to the group of drugs known as vasodilator drugs and is used to treat hypertension. My friend here changed heres to a mixture of candesartan and amlodipine.
Candesartan belongs to the same group as losartan and amlodipine which belongs to a group of drugs known as calcium channel blockers. It seems popular these days and is used to reduce raised blood pressure, amongst other things.
It is not good that we have not heard from Mary. I do hope she is not having problems.
I am not surprised that you are having to wait for your surgery. Like you, I would be very reluctant to have any surgery that lasts seven or eight hours.
When is your 70th birthday?
In the post I lost I was telling you about my good friend here who died a few weeks ago. She had hormonal breast cancer in 2001 and had done well. It came back about 2012 and had spread to the bone. She was doing fine on medication and chemotherapy but took a turn for the worse and died pretty quickly. It was such a shock.
The thread is not really making any progress and the counting of the views are all up the creek. I do think technology is going over the top and needs to slow down. I shall always regret the old forum.
There is so much that is wrong with the world, especially this country. It is never going to be right again.
At the moment I am trying to take care of myself, look after Raymond, support my two younger brothers and trying to protect my cousin now permanently in a home with terrible problems with his diabetes, not to mention his dementia. That is in addition to running the complex.
To switch off I sometimes watch Bread in the evening or Yes Minister or even Allo, Allo!
That is about all for now. We have just had yet another scam phone call.
Let us hope we hear from Mary.
Love and best wishes.
Sylvia xxxx
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