Calling all triple negative breast cancer patients in the UK
Comments
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Hello InspiredbyDolce (Debra),
Thank you for your post and for the link. It is good to have all this different information coming in.
I was interested to know all your details. It is hard to understand your cholesterol levels, as we obviously do not measure in the same way in the UK. Here the doctors like you to be about 5 or below, but of course, they do not always tell you what your HDL and LDL levels are, that is your good and bad cholesterol levels. They tell you these only if your cholesterol is high and they also tell you your triglyceride level, which some say is more important than your cholesterol levels. What they do not measure here is your homocysteine level which some doctors say is the most important level that you should know and is an important indicator of your health. The lower it is the better.
Are you taking statins? So many people here are prescribed them to lower their cholesterol, but I would not touch them and I am glad my cholesterol is normal.
I was glad to know that you are not having any problems with metformin and I hope that continues to be the case. All I know about metformin is that it belongs to the group of drugs known as BIGUANIDES and that it lowers the blood sugar by increasing cellular uptake of glucose. Metformin is the only one of this group used to treat non-insulin dependent diabetics, who are over-weight, when strict dieting has failed. From what you have said, it looks as though metformin may affect the appetite and act as an appetite suppressant. I am only supposing this but it would make sense if over-weight people are taking them.
Wishing you all the very best and hoping you will pop in from time to time during your breaks from cancer.
Thinking of you.
Sylvia xxxx
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Here in the US, they also test the entire lipid panel. The trigylcerides, the HDL, the LDL and the non-cholesterol level and the total cholesterol level. Triglyceride ranges are normal if values are below 100, HDL normal if above 60, LDL normal below 100, and total cholesterol should be below 200.
I do not take any medicines at all for cholesterol. Interesting enough, 11 years ago at a obgyn visit, my doctor said my cholesterol was sky high. The nurse asked me if I eat a lot of cheese, I said yes, and she said that is probably the culprit. They wanted to put me on something right then. I asked if I could come back in 3 months for a restest first, and they said yes. I never went back for that, but always had it in the back of my mind. From that time on, I removed cheese from diet as well as fast food.
So last year, about 6 months after the start of this new lot fat, fruits and veggies diet, with 90 minutes of exercise each day, my new PCP ran the test on me. I was totally expecting bad news, and I clocked in last year at optimal levels - the best he has ever seen. Then he repeated this test on Saturday, and I had improved on optimal by 10 for the overall, and by 20 on the bad. For me, it's directly tied to minimizing sweets, no cheese, exercise and healthy diet. It really worked the diet and excerise. I'm so pleased, as I do feel like I do work hard at it.
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Good evening Sylvia
I will watch those programmes you mention, they sound interesting.
They didn't mention anything after the scan apart from asking if I wanted a cup of tea. I haven't had an MRI scan so far. I think they are used more for neurological and orthopedic conditions. I was calculating that, on the throughput I observed, that they are scanning about 100 people a week. It seems a lot from a population of 1.5 million.
Weather here is overcast and the evenings are quite cool, I notice the evenings are drawing in.
Best wishes
Michael
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Hello Sylvia
Thank you for asking after me; I am still very tied up with my father's care - not a day goes by without several phone calls to and from social workers, physios, care home etc. I have manged to get him an extra 2 weeks respite at the care home where he has been since leaving hospital. He is due to be discharged home on 17th August.That is entailing more sorting out of care packages, financial assessments etc.I have just found a care agency who can provide a live-in carer for him; this will be prohibitively expensive, so is only a short-term option.
So thus far, I have not really had much time for myself....
Incidentally - I have had 2 MRI scans.The first one was to determine the extent of my breast tumour and to see whether I needed a mastectomy or a lumpectomy; the second as a follow-up to a bone nucleide scan as I was experiencing some pain in the sacro-iliac region of my back some 18 months after finishing treatment.Thankfully, it was not deemed to be anything concerning.I have a feeling I had a third one, but can't remember what it was for.....The noise is actually rather akin to the following, depending on your imagination : a firing squad; pneumatic drilling; and the one I favoured which was a church organ being tuned! I think an MRI is only claustrophobic if your head is being scanned; otherwise, your face is out of the tunnel.For the breast MRI I lay face down and had something injected into my arm, which felt cold as it travelled through the veins. Really, nothing scary!
I remember we both had a sestamibi scan for investigations into our parathyroid adenomas - I think that was worse, since the scanner was directly over the face.
Off to bed now!
With love,
Sam x
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Hi all
I'm a newly diagnosed triple neg and have just had my surgery on the 1st aug, finding it all really scary right now,
Also shooting nerve pain in my arm is quite bad, is that normal,
I've been reading this forum for quite a while and must admit its quite reassuring to know that there's quite a few tnbc out there and I don't feel quite so alone now
I've got to go back on the 16th for my post op app, I'll probably get a date to start chemo
Then I think,
Anyone got any advice on things I can take to help me through chemo
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Hi Jackpot!
Thanks for finding us and congrats on completing your surgery!! There is also a Calling all TNS forum in the US, that many of us are also on. It's for the TNBC population as well.
Your diagnosis says DCIS, but stage 2? Is that correct? I thought DCIS was a stage 0?
For chemo, here are my suggestions. First of all, remember it's very doable and methods and treatments these days are not like you may have heard they were like some 15 years ago.
The night before pack a satchel of some items for your chemo day. They can include items like: your own comfy shawl or afghan/blanket to take wtih you, some magazines, a treat and something to drink, and a cup of ice to suck on. Obviously don't pack the ice cup the night before. Get it at the local cafeteria or cafe that is in the building as your treatment. Sucking on the ice will prevent mouth sores.
At home for after care: Have a bottle of water (16 oz) with 1 teaspoon baking soda and 1 teaspoon salt mixed into it. Swish that in mouth 3x a day to prevent mouth sores and keep metallic taste from forming. Eat with plastic utensils to prevent metallic taste. Stay hydrated, and first 48 hours of chemo very important to drink lots of water. The reason is that they want us to get rid of toxins quickly as possible so that it's not exposing other organs to unncessary and prolonged toxins. About 86-100 ournces of water a day. If you get sick of water, try sucking on Pediolyle Frozen Flavored Pops, which have an added benefit of electrolytes in them. These were quite tasty when water sounded not so tasty to me.
Eat often and when you can to keep your strength up. My Onc advised avoiding anything that would suppress the effects of chemo or make it hard for the chemo to find a cell that was masked by an antioxidant. As he put it, he wanted all the lights on, so chemo would know what to attack, not turn the lights off so that chemo might miss something. So I was not allowed to juice, or take vitamins, or eat my blueberries or anything. He wanted the chemo treatment to work with a natural environment so to speak.
All the drugs were infused in to my chemo session, such as the first two, which coated the stomach and prevented other problems. I did have breakouts on hands, but this was specific to my dry hand condition, and was the first he had seen. Some girls on the Calling all TNS threads have said their Oncs told them to take Claritin the day before or the day of chemo ... can't recall exactly.
He also told me that this was not the time to go breaking any records. Give my body the chance to get the most benefit from this medicine by not over-extending myself. He said when I get tired stop and rest. Do whatever I want, but when I get tired, take a break for a while then return to what I was previously doing, don't try and power through when tired. He really stressed the importance of resting when I felt tired.
If I think of anything else that was partciularly helpful, I'll let you know!
Hugs!
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Hello Jackpot,
Firstly a very warm welcome to our thread. None of us wants to be here but you can be sure that on this thread, which I set up especially for Brits, but to which all are welcome, we shall help and support you all we can. We all know how frightening this diagnosis is and the initial shock that we all go through. Just be reassured that you can get through this and that you have already gone through one of the hurdles and that you are recovering. Please do not be frightened and just take one step at a time.
With reference to your surgery, and the fact that you have a shooting nerve pain in your arm, you should talk about this with your consultant surgeon and perhaps talk first of all to the breast cancer nurse that should have been assigned to you. Never be afraid to ask questions or to pick up the phone with any concerns you may have. When I was first diagnosed I was given the name and number of a breast cancer care nurse whom I could phone and I found her help invaluable.
The pain that you are experiencing in your arm could be due to something that is called 'cording' or it might be due to lymphoedema, a fluid accumulation in the arm that can be quite uncomfortable, especially if you have had lymph nodes removed. There is a lymphoedema clinic, or should be, in our hospitals in the UK and you can get an appointment to see a special nurse who will measure your arm etc. and ascertain whether you have lymphoedema, whether you might benefit from wearing a special sleeve and she will also show you how to do a special massaging of the arm. She will tell you whether you need more appointments or whether you might need to go to physiotherapy for a few treatments. I hope this helps.
I was glad to know that you have been reading the forum for a while and that it helps you to feel less alone. We are all here to help you. We are not allowed by the rules of the forum to give advice, as we are not doctors, but we can relate our own experiences through this cancer journey and we can tell you what we did to help ourselves and what we did to help with side effects, which you may or may not experience. Remember our experiences are all different so do not be afraid if other people have experienced bad side effects, as that may not be what will happen to you.
I noticed that you said you had ductal carcinoma in situ and that it was stage 2 and grade 3. DCIS does have the same stages as other kinds of cancer, so it can go from 0 to 4. That is what I have read. Do not take any notice of all the discouraging things that you can read on the internet about breast cancer that has three negative receptors and is called triple negative breast cancer.
I hope all goes well on August 16th when you go back for your post-operative appointment. We shall be keeping our fingers crossed for you.
Do not be afraid to ask as many questions as you feel necessary. You might want to ask what percentage each of the receptors has. For example I was oestrogen 0%, progesterone 5% and HER2 0%. The 5% progesterone was considered negligible so negative. You need to know also whether any nodes were affected.
In preparation for chemotherapy, you might want to ask what chemotherapy drugs will be used and why they have been chosen. Your medical team will want you to have recovered from surgery before they start chemotherapy. You probably know you will suffer hair loss after the first chemotherapy treatment so you will need a nice wig or scarves. You should be able to get this paid for on the NHS.
InspiredbyDolce has given you some good tips on how she coped with her breast cancer journey. What I kept in mind through my journey was to drink plenty of fluids, especially in the first few days after chemotherapy. I also kept in mind to get plenty of rest and not to overdo things or expect too much of myself. I also made sure I kept looking forward until the day of my last chemotherapy treatment. You will probably be told that you should avoid crowds and anyone in poor health or with colds etc., as your immune system will be very low and you will pick up things very easily. You will also probably be told to get flu injections and a pneumonia injection before you start treatment. Since chemotherapy can also cause mouth problems, you will also probably be told to get all dental treatment sorted out before chemotherapy as you will not be able to have dental treatment during your chemotherapy. I had no mouth problems but there are special products you can use if you want to. They are in the brand called Biotene, easily available here in the UK. I did not experience any nausea or sickness but if you do ginger is always very good, whether it be lemon and ginger tea, ginger root, ginger biscuits or ginger capsules. I found eating small meals was the best way and I was told to avoid salad foods and seafood because of risk of infection.
I think I have given you a lot of information here but I am sure I can think of more. There is a lot of information on this thread about chemotherapy, so you might want to look back at some of it.
Please post in as often as you want and ask as many questions as you like. We all want to help.
Will you be working through your treatment? We do not know your age.
Sending you my very best wishes on behalf of all of us on this thread and a special hello to you from Liverpool.
Sylvia xxxx
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Hello InspiredbyDolce (Debra)
Thank you for your post and your support of Jackpot.
Thank you for all the information about the cholesterol testing etc. in the US. I was wondering whether testing for homocysteine is included in all of this. All my reading indicates that this level is very important, the lower the better and much more important than cholesterol levels.
I was so glad to know that you did not get put on statins when your cholesterol was high. My information is that it is not the cholesterol content in food that helps to put your cholesterol high, but mainly saturated fat and transfatty acids found in junk food such as chips (fries), crisps, biscuits, cakes etc.
On this thread where we have a special interest in nutrition I think we all know the importance of fruit and vegetables and exercise. You seem to be doing a marvellous job with your exercise and with your diet. Do you follow a low glycemic diet? That seems to be the current message and also the best way of loosing weight if you are overweight. I have read a lot about how the message of the past forty years of a low fat and high carbohydrate diet has resulted in people being over-weight, and suffering from chronic diseases especially diabetes 2. We need to keep away from saturated fat but we do need healthy oil such as the omega-3s, apparently people have been replacing their fat with sugar and refined carbohydrates and putting on weight. We need to keep away from white bread, white rice, refined pasta and too many potatoes, not to mention biscuits etc. We need some unrefined carbohydrates, such as whole grains.
Another Friday is upon us and I am working through a list of ten things that I need to try to do, but I think some will have to be done at the weekend.
Wishing you well and thanking you for your contribution to our thread.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
Thank you for your post. I shall be very interested in your comments about the programme Long live Britain. I hope to watch the second part of the programme this evening. Apparently it is another fifty minutes.
I was not surprised to learn that the first thing you were asked after your scan was whether you wanted a cup of tea! I think that in the UK a cup of tea is considered a cure-all and that the country could not function without it despite all the coffee shops! It seems to be that whatever is wrong with you, that the answer is to put the kettle on! What amazes me is how people get to sleep after drinking so many cups of black tea full of caffeine as I assume that is what most people are drinking. I know that with my parents generation it was leaf tea as well. Do you drink ordinary black tea? I have been drinking decaffeinated green tea, untold mugs a day, for over eight years and before that I was drinking mainly herbal teas and I still have some of these. I do love strong leaf green tea, but I cannot cope with the caffeine.
I was amazed that you think they are scanning about 100 people a week out of a population of 1.5 million. I am assuming that is the population of Northern Ireland. That is a lot and I wonder how the NHS will cope. It must be nice living in a part of the country with a low population. England is so over-populated and it does spoil the quality of life. I used to love Exeter back in the 70s and 80s but now I find it an ordeal to go there. It is always heaving with people and so noisy.
It is sunny so far today but a bit cooler. The gulls seem to be going mad here today. They seem to be out of control during the tourist season. They have been dive bombing Costa customers sitting out in the precinct. I would not fancy getting attacked by one of our seagulls! They are forever looking for food, and seem to like junk food! I was in the grounds the other day when a seagull came creeping up with an eye on the bag of plant cuttings. I was very wary.
I hope you have a nice weekend and will find something enjoyable to do. It is true the evenings are drawing in and it is now dark by 9 pm.
Fond thoughts.
Sylvia.
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Hello sam52,
It was so nice to hear from you. I thought you were probably still dealing with your father's care and I do know how time consuming such things can be. I know how much time you can spend on the phone and what a task it is to get everything organised and coordinating.
It is good to know that your father has been having respite in a care home since leaving hospital and that you have managed to get him some extra time. At least in a care home you know that someone is keeping an eye on him. He will probably find it very strange when he gets discharged and finds himself back home on August 17th. Do you think he will be well enough to cope at home even with carers? A live-in carer would be a good solution but, as you say, it will be very expensive. Please let me know how things go.
I can understand only too well that you have not had too much time for yourself. I do hope you are managing to keep well and that you are looking after yourself. We have to be vigilant about ourselves all the time.
I do hope all is well with Tom.
I was very interested to know that you had had two MRI scans.
After your description of the noise and what you likened it too, I hope I can manage to evade the experience of one of these scans! I cannot stand noise and we do live in a society where it is hard to find peace and quiet. Everybody seems to shout rather than speak and people on their mobile phones can be torment! I think discretion, courtesy and consideration for others has gone out of the window in England. Am I getting old or are children screaming more than they ever did?
I do remember about the sestamibi scan we both had to investigate our parathyroid adenoma problems. It may seem strange but I do not remember that the scanner was directly over the face, so it cannot have traumatised me!!!
I hope you are managing to have a bit of relaxation with reading and doing some gardening.
Please keep in touch and take great care.
Love.
Sylvia xxxx
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Hello Jackpot again,
It just occurred to me that you might want to ask whether you will be having chemotherapy on a weekly basis or on a three weekly basis. Women posting on this thread have said that they found having chemotherapy once a week seemed more manageable than having it every three weeks, which seemed to be the done thing when I was diagnosed. Also, I avoided going to the GP surgery the day before my chemotherapy treatment to have a blood test to make sure all was in order to have the chemotherapy the next day, by having a district nurse come to my home to do the test. I thought the last place I needed to be with a lowered immune system was the surgery.
You will also want to know how the chemotherapy drugs are going to be administered, either intravenously through a cannula in the back of the hand or whether you will have port inserted. If you are to have a port, ask what kind you are going to have.
Before you start the chemotherapy regime, the oncologist should be asking you your height and weight as the amount of chemotherapy administered depends on these things.
Earlier on in the thread on July 12th 2011 on page 11 I did post information about the side effects of chemotherapy and I have updated them various times on the thread.
During your chemotherapy your medical team will be keeping an eye on the level of red and white blood cells to see if they are going too low and need something to boost their levels.
I hope this all helps.
Thinking of you.
Sylvia xxxx
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Hello everyone,
Friday is here again, yet another week has gone by and I hope it has been a positive one for you all.
A special hello to Carolben. If I am right you finished chemotherapy on August 6th. I hope all is going well and that you will be able to relax and not worry too much about your scan at the end of August.
I have been enjoying some delicious fruit from South Africa.
Adagio, I hope all is going well out there in British Columbia, Canada. You must be preparing for your holiday abroad.
peterandliz in Norfolk UK. I was wondering whether you made it to North Devon. There has been a lot of rain there recently which caused trouble in a little place called Combe Martin. Here in Exmouth we are desperate for rain!
linali (Lindsay) I hope you had a good bank holiday weekend.
PeggySull (US) how are things going with you?
susaninicking, our American friend in Germany, I hope all continues to go well with your Taxol treatment.
Best wishes to the many people viewing the thread and many thanks to those of you posting with information, tips, help and comfort.
Sylvia.
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Hi
Thanx for the advice, I've corrected my diagnosis that was my fault...still trying to understand all the information I've been given in this whirlwind last couple of weeks, it's a lot to take in
The pain in my arm is just as bad, just waitin for the dn to arrive, I'm goin to ask her to take this drain out today instead of tomorrow I'm sure it's contributing to the pain as its got steadily worse over the past week,
Thanx for the advice on getting through chemo really not looking forward to it, the only bit I don't understand is the no vitamin, juice, fruit rule you got from your onc, I understand the reason he gave you but I would've thought taking in as many nutrients as possible would be a good thing, do many people carry on with the healthy juices and vitamins without affectin chemo, I'd rather carry on with them if possible
Nurse has just been and removed the drain....what a relief, feel like I've got some freedom back now, I've got a week of almost normality now till follow up next Friday
I work as a Postie and I've taken time off from there but I'm also a photographer and I'm going to keep as many jobs as I can including my bosses wedding at the end off the month ha, just to keep things as normal as possible
I'm 45 by the way
Regards from liverpool x0 -
Just back from a chemo morning with a pack of fabulous, fun women. Chemo here lately is so much fun that my husband even loves to go! I have found the rowdy, loud, laughing, party women so I'm all happy these days that I found my people even if I do have to whoop it up with them in German!
This was my 2nd Taxol infusion this week....Monday and today. Not sure if this will hit me as a bit more dose dense than normal...guess we will see. I seem to come home these days fairly tired but otherwise fine. I'm going to have a little nap because it is POURING rain and nice and cool and perfect for a little rest.
I have my last 'mo in 3 weeks and my compadre in the next chair in 2 weeks. We want to do something to celebrate and any ideas are welcome. We are all rooting for each other's health and I think it will be fun to eat some celebratory something, blow some party blower thingies, etc. ....any ideas? Thanks much! Susan in the pouring rain in Icking!0 -
Hi, ALL
i finished my treatment (chemo and radiotherapy) 1.5 months ago (20/06). because i am TN, i don't have ANY treatment since then. i ve read a few of us having the recurrence just 6 months after finishing the chemo. i am scared of recurrence very much because my oncologist once DID mention that my cancer was (is?) present very aggressive and i ve got a 'high risk' label in my file.
for me, bc is the most inexplicable thing that ever happened to me. this time. this time, i would much rather find it as early as possible which typically may not be symptomatic than wait for symptoms to present themselves.
So far, i've had a few physical exams from my breast cancer consultant and oncologist, checking the wound, chin, armpit and the other breast left. i don't think these checks can pick up cancer cells. so i d like to ask a scan. Here is the problem - i dont know WHICH ONE?！
i ve read some posts here before posting mine. you have all kinds of scans after the treatment, e.g. mammogram, bone and ct scan, pet scan, mri, ultrasound etc. i did the researching on my own. it seems all these tests have their advantages and disadvantages.
personally, i d like to try all of them if possible but that is not going to happen. so which ONE is the best choice to my situation? i ll ask my doc about it when my next appointment but i d like to get some advices and suggestions here as well .
THANK YOU VERY MUCH!
(appology for posting my quesiton twice! i am told i ll get more answer in this thread.)
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I have exactly the same questions. I am almost done with chemo, have 8 weeks of rads and then what? I am seeing a new gyno next week and everything here is driven by gynecology so a good doctor is key. I would like to go next week as well armed as possible and want to ask for everything within reason for TNBC follow-up. Help!
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susan and Emma - I live in Vancouver Canada, and I will not be having any scans, MRIs, or tumour markers at all unless I present with specific symptoms like blisters over the tumour bed scar or inexplicable pain (anywhere in the body) which doesn't go away after a couple of weeks. My oncologist told me that with TN it is wait and watch!! At first I was disappointed that I wouldn't be having active followup in the way of tests etc, but now I am at peace with the fact that I don't have the stress or worry of what will show up! I still go to my MO every 3 months for a physical check up of the breasts and lymph nodes. I am scheduled for a mammogram on October 1st, but am somewhat ambivalent about having that done. I gather from a few previous posts here and other forums that there is a vast diversity on opinions regarding scans etc.
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Hi Jackpot
I have just read that you are a postie. Do you belong to Beneden Health? I used to work for Post Office counters and I joined the Civil Service Sanatorium society (the former name for Beneden) back in the mid 80's. Their help has been invaluable. They recently allowed me £1500 to go and have a private biopsy because of delays in the NHS. It is well worth the £7.50 a month.
Michael
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Hi Emmal
This might help you decide which scan you should have:
http://springboard4health.com/breaking_news/scans.html
Michael
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Hello Jackpot,
I was glad to know that the district nurse removed the drain for you and that it has helped with the pain. How long had the drain been in, as it seems a long time to me. When I had a mastectomy in 2005 I was in hospital for five days and all the drains were removed within that time and had to be clear of fluid before I was allowed to have them removed and leave. I did not experience any pain from the drains or from my surgery.
Please do not be afraid of chemotherapy treatment. There is nothing to fear and it can be done. The proof of this is all the women on these threads that have got through it. Chemotherapy is not a painful procedure. It is just that it is a long procedure and you get tired. You need to go into chemotherapy feeling optimistic and relaxed and accepting the fact that it can be a six month journey, depending on what your oncologist decides. Once you know what drug regime you will have and why, the possible side effects of the drugs, and how to alleviate them, just accept what you need to do. A day of chemotherapy treatment can be long. You need to get to the hospital. The drugs will be made up then, you will get yourself comfortable in an armchair and the drugs will be administered. I always had my husband with me and we just used to sit and chat while the drugs went through my system. My appointments were in the morning, most of the time they were on time, and we used to take a packed lunch. After treatment was finished we would drive back home and I would have a rest and sometimes a sleep. For the first few days you may not feel up to par, but after the first week I used to get back to my normal routine and live as normally as possible until my next appointment. The secret is to drink plenty of water.
As for nutrition, I had been on a healthy diet before diagnosis and I carried on eating my usual healthy foods but in very small portions as I felt able. I ate fruit and vegetables as I normally did and just kept away from raw foods and seafood as advised at the hospital. I am not in favour of fruit juices, especially store bought, as they are too concentrated. I did juice occasionally but it would be refreshing pineapple juice or avocado which was very refreshing on the mouth. Canned pinapple in its own juice is very good for a dry mouth.
I used to eat plenty of prunes and figs to guard against constipation.
I did take some vitamins so that I did not get run down from the treatment. I also took astragalus powder and pycnogenol tablets, as they are both good immune boosters.
When I look back on my chemotherapy journey I can honestly say that it was not at all frightening and I suffered very few side effects. The most traumatic for me was losing my hair and then eyelashes and eyebrows, but you do cope. You need to face all of this with confidence, and just keep looking towards the end of it. Ultimately we all have to make our own decisions about what we shall do to get us through treatment.
We shall all be thinking of you next Friday August 16th when you go for your appointment.
Take one day at a time.
Best wishes from Exmouth, Devon.
Sylvia xxxx
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Hello EmmaL,
Welcome back to the thread. You must be very relieved to have finished your treatment and to have surgery, chemotherapy and radiotherapy behind you. I do hope you have recovered well from all of this.
It is well known that with breast cancer with triple negative receptors there is no other treatment after the standard surgery, chemotherapy and radiotherapy, unlike breast cancers that have hormonal positive receptors and take tamoxifen and/or aromatase inhibitors like Arimidex for five years or more in the hope of preventing the cancer coming back. I, personally, am glad that I do not have to take these drugs as they do have nasty side effects.
It sounds as though your oncologist has really frightened you about TNBC and I cannot see that this serves any useful purpose. Hang on to the fact that there are loads of us surviving and for a very long time. I have survived for over eight years and I have read posts on the forum where women have survived for much, much longer.
I can see that you are very concerned about keeping an eye on everything to catch recurrence or spread as early as possible. I can only relate what my own treatment was at my hospital in Exeter. When I was first diagnosed in addition to a mammogram and ultrasound, I also had a CT scan and a bone nucleide scan. After my treatment, chemotherapy first, six months, surgery, and three weeks of radiotherapy, I had a CT scan and a bone nucleide scan. I was told I had no visible sign of cancer and an excellent pathology report. I was told that because I was TNBC there was no further treatment available and that I would now enter a regime of regular physical check ups and mammograms. I started off with check ups every three months, alternating between my oncologist and my breast cancer consultant. After two years this went to check ups every six months, alternating again between my oncologist and my breast cancer surgeon. This continued until last year when I was discharged from the breast cancer consultant but was kept on by the oncologist, whom I now see once a year. I am due to see her in April 2014. By 2015, when I shall be due to see her again, it will be 10 years since diagnosis and I shall probably be discharged, provided I do not have a recurrence or spread. I have been having mammograms every two years since the end of my treatment. My oncologist told me that it is usual to be discharged from both the oncologist and the breast cancer consultant surgeon after five years, but they have kept me on longer because things looked bad initially, as I had a very large tumour.
My oncologist told me after I had finished my standard treatment that the first sign of any recurrence would be a rash along the line of the mastectomy scar, so I am always looking out for that. The other thing to do is to listen to your body and look at your body for any sign that you think is not normal for you. The regular physical check ups that we have may not seem much but they can tell a lot by just feeling. My oncologist told me they are looking for anything that does not seem smooth.
If you feel you would need scans for peace of mind or because you feel that something is not right, you must contact your medical team and express all this. You must be your own best advocate and fight your own corner.
Remember that scans do subject you to radiation and I feel they are best avoided unless absolutely necessary, but that is my own personal opinion. On this forum we are not supposed to give advice, so we cannot really say what scan you should have. That is something about which you should consult your medical team.
We are all thinking of you and wishing you the best. It would be useful if you could tell us your age. TNBC is supposed to affect younger women more than older ones.
Make sure you get all the attention that you feel you need from your hospital.
Please keep in touch.
Best wishes.
Sylvia xxxx
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Hello susaninicking,
I hope all is well with you. As you were asking the same questions as EmmaL about what happens to you when you finish chemotherapy and radiotherapy, you might like to have a look at what I have posted to her, bearing in mind that you are in Germany and she is in England.
I would be interested to know whether follow up with breast cancer with triple negative receptors is the same as in England. I am not even sure whether it is the same in Scotland, Wales and Northern Ireland as it is in England. All information is useful.
Fond thoughts.
Sylvia xxxx
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Hi chatterbox2012
No I don't belong to Beneden health, I have got some health insurance through work
But it's only financial help for outpatient apps and so on, it might be worth lookin into but they would probably be reluctant to let anyone sign up with an ongoing illness,
Hi Sylvia,
The drains were in place for nine days, but I was only in hospital for 1 night, they send you home with the drain in place now and a dn comes out each day to check it,
It's deffo a relief to have the drain out but I think a lot of the pain seems to be from nerves, but at least I don't have to worry about my crazy hyperactive dog ' bailey' pulling it out now ha ha,
I think I'm going to carry on with most vitamins while I'm on chemo but I think I will have a chat with my onc first
I've been reading a lot about what to eat and take while going through this and read a lot about bitter apricot kernels and b17, just wondering about your thoughts or experience with them, anything worth a try i guess....but don't know anyone whose tried them first hand
Thanx for all the advice about going through chemo, I feel a little more confident now about the whole thing and hopefully the side affects won't be as bad as what I was expecting
Take care
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Hello everyone,
I have been missing the company of you all on this post; but seeing as my marriage disintegrated I felt it unfair to mention it so often, so please accept my heartfelt apologies for that. It was the combination of my husband leaving before the results of my second tumour that made things so unbearable and yet I found comfort and solace from everyone here. Thank you so much for that and please, never under-estimate the strength of a kind word!!
I am definitely of the opinion that for me at least, stress produced more tumours; before my husband left, he was still living in the same house for a month, during which I ended up with two tumours at the same time, then another one hot on the tail of those and now I have another... it has to be stress!
I am in the somewhat dubiously 'fortunate' position of having private health care. Trouble is, my first surgeon made a complete mess of me and I am terribly scarred. This prompted a second opinion in Harley Street, but the problem I am having (not knowing London, only the hospitals therein) is that the surgeons are taking their own sweet time and multiple appointments with only a mention of surgery being over 12 - 18 months...to fix what was done to me. I have an appointment for September and no sign of when they will begin surgery! Summer is not a good time for treatment of any kind and I now feel ''how rude of me to be diagnosed with TNBC in July!''. How nice for them to go off on multiple holidays, while I wait and count tumours and guess...try not to stress about it...but too much time elapses with no movement forwards. Sorry, am I moaning again? I don't mean to, just all up in the air...so no change there!
Truly hope this finds you all in a better place and getting stronger by the day. Thank you and bless you for your support.
Sam XXX
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Hello Jackpot,
I read what you wrote to chatterbox2012 and just wanted to say that you should be able to get all your cancer treatment free on the NHS at the point of delivery. The trouble is with the NHS that you have to do a lot of waiting and it is getting worse because they are getting so squeezed and seem to have more and more patients. I had the two scans mentioned before and after treatment and they were done pretty quickly back in 2005/6. You do have to learn to speak out and get what you want.
I have heard of them sending people home quickly after surgery and it may be the difference between a lumpectomy and a mastectomy. They also probably need beds!!
If you still have pain you need to get it checked out as it does sound as though it could be cording or lymphoedema. At least you do not have to worry now about your dog pulling out the drains!!!
I can understand that you want to carry on with most vitamins etc. but it will not hurt to have a chat with your oncologist about the matter. Just bear in mind that in the orthodox world of medicine medication from Big Pharma is the answer to everything! I remember the recommended nutrition sheet I was given at the hospital, and I would not have followed it for all the money in the world! You might want to look up the Cancer Active website and Chris Woollams, to see what he thinks about the NHS nutrition advice.
I was glad to know that you have been reading a lot about what to eat and take while going through all this. What books have you been reading? There is a lot of information flying around. I have been interested in health and nutrition all my life and I continue to read as much as I can.
It is strange that you mentioned bitter apricot kernels and B17. I have been taking them virtually every day since I was diagnosed over eight years ago. I cannot really say what they have done for me but they certainly do not seem to have done me any harm and they could be helping to keep my cancer at bay. Who knows? They are supposed to kill cancer cells.
When I was first diagnosed on June 20th 2005 I was shocked because I had never been ill and I was fit and healthy. I saw my GP first and got a private consultation the same day (cost about £200) with a breast cancer consultant who worked also in the NHS and who became my surgeon. I did this because I was told there was a two week wait for an initial appointment on the NHS and I thought that was too long to wait. At the same time I made an appointment to see a nutritionist in Bristol. She told me that I would need conventional treatment but after a long consultation she provided me with helpful paperwork and nutrition advice. It was there that I saw she recommended taking bitter apricot kernels and I bought some and started taking them. I took thirty daily during my cancer treatment and afterwards I went to fifteen/twenty a day and that is what I continue to do. I take five at a time throughout the day, usually with a mug of decaffeinated green tea. Before that I usually have some wholemeal bread or a banana as I find I cannot take green tea on an empty stomach. I do not know if anyone else is taking them. We have had lots of discussions on this thread about nutrition and healthy eating but I cannot remember anyone mentioning bitter apricot kernels. I do think green tea is good for you as well. It does have a reputation for having an anti-cancer effect.
I am glad that you feel more confident about going through chemotherapy. You will be alright. Please do not hesitate to ask anything that is worrying you.
Wishing you well.
Sylvia xxxx
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Hello Sam_UK
Thank you for your post. I have often wondered what had happened to you as I know you were going through a difficult time. I know we all felt great sympathy for you and I was hoping that perhaps everything had worked out well for you. I am sorry this is not the case. We are only too glad to welcome you back, even though it is not under good circumstances.
What exactly is happening with you now that your husband has gone and you are dealing with all this? You do not need to convince me that stress is one of the causes or risk factors for developing cancerous tumours. It must have been so stressful living for a month in the house with your husband, knowing that he was going to leave. Stress causes us to produce a lot of the hormone cortisol, which is bad for us and which I think causes inflammation. If I am reading correctly you now have four tumours. Are they in the same breast as before or the other breast? What is happening about this? It seems to me that you need to have these tumours removed as quickly as possible and then get on with what other treatment is needed. Why are you having to wait over twelve to eighteen months? It seems to me you need to see an oncologist and a breast cancer surgeon to remove the tumours and then go from there. Perhaps I am missing something.
Which hospital in London are you going to in September and what is it for? I think the best cancer hospital in London is the Royal Marsden, but I have also read that Barts Hospital has a very good cancer department.
I agree that summer is not a good time to be ill with anything, as so many consultants etc. are on holiday.
I have been reading recently in the newspapers that cancer patients are not being treated properly in hospital and that files for 18,000 cancer patients are being lost each year! That is unbelievable. I have also read that while in hospital they are not being treated in a way that guarantees dignity and privacy, such as being examined with curtains not drawn around them.
I hope my post helps in some way and please feel free to vent your feelings here. We shall do all we can to help. Make sure when you go to the hospital you have a good friend to accompany you. I seem to remember that you do have a good friend to help.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Hello Michael,
I just wanted to say that I have just finished watching the rest of that programme Long Live Britain. Almost 400 patients were tested. The result was 73% had referrals to their doctor. The highest percentage (47%) had problems with their livers due to alchohol, the next (42%) was diabetes 2, and the next was heart disease (28%). Some had more than one disease. The three celebrities on there also had problems. One had diabetes 2, one had heart problems and gave up smoking, and the other had liver problems.
I would love to know what you thought of the programme.
Best wishes.
Sylvia
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Hi Jackpot
As far as I know there is no problem with pre-existing conditions but there is a wait of six months before you can make any claims. They pay for most things where there is an excessive delay on NHS waiting lists and they also pay for travel to and from hospital and car parking which is handy if you have to go daily for radiotherapy. Another benefit is they will pay for home care if needed.
Sylvia
I will watch these programmes later as there is never anything on TV Sundays, or come to that Friday to Mondays that I like.
Michael
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Good day Ladies,
sorry for late response.
i have a ds and dh, both 3 years old who keep me busy, especially in weekends.
Hello adagio,what worries me is that last time when i presented with a sympton, i was in stage 3 already! that is why i get tense and uptight. thank you for your information. thank you!
Hello chatterbox2,thank you for your link.
Hello Sylvia,during the treatment, my mind was occupied by those horrible side effects. once i am out, i start to worry again. cant help.
i dont have any bone scan before or after. i ll ask about the scan when i see my breast cancer consultant . i guess we ve done what we can do。 the rest, leave to pray and hope!
thank you for still remembering me! from what i see, my experience is quite same with yours (except the bone scan part). i kind of follow you step by step... so far. hopefully, in 1year, 2years, 3years...and one day, i can also have a 'discharged' label in my file!
to be honest, i cried when i saw your 'discharged' story! i am a 35 years mum ....still with lots of plans and dreams.
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Good day Ladies,
sorry for late response.
i have a ds and dh, both 3 years old who keep me busy, especially in weekends.
Hello adagio,what worries me is that last time when i presented with a sympton, i was in stage 3 already! that is why i get tense and uptight. thank you for your information. thank you!
Hello chatterbox2,thank you for your link.
Hello Sylvia,during the treatment, my mind was occupied by those horrible side effects. once i am out, i start to worry again. cant help.
i dont have any bone scan before or after. i ll ask about the scan when i see my breast cancer consultant . i guess we ve done what we can do。 the rest, leave to pray and hope!
thank you for still remembering me! from what i see, my experience is quite same with yours (except the bone scan part). i kind of follow you step by step... so far. hopefully, in 1year, 2years, 3years...and one day, i can also have a 'discharged' label in my file!
to be honest, i cried when i saw your 'discharged' story! i am a 35 years mum ....still with lots of plans and dreams.
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