Calling all triple negative breast cancer patients in the UK
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Good morning to everyone. Sadly this will be my last post. I feel that I have to move away from cancer, I have thought long and hard about this decision and I know that for me it is the best way forward.
My niece, Sinead, (lives next door) is very ill at the moment and I need to focus on her wellbeeing.
This forum has been an inspiration, Sylvia has been my rock.
I wish you all the very best for the future.
You are in my heart and in my prayers.
Bernie.
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I shall miss you Bernie!
Hope your niece recovers soon. She is lucky to have a devoted Aunt so close to her.
Very best wishes from your No 1 fan.
Love and hugs, Lola.
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Hello Cynthie,
I was glad to know that things are going pretty well with your radiotherapy. I was interested to know the procedure in Germany. Here in the UK before I started radiotherapy I was given a very nice smock to bring to each session. I used to arrive, be called in on time, went to a private cubicle and just removed my top clothes, blouse and bra, and put on my smock. The smock was such that the top part could be undone to expose the part to be radiated, the part where I had had a right breast mastectomy and under the arm where I had lymph nodes removed. I was then positioned on what was literally a hard table, everything checked and the process began. I had three weeks of this with boosters included in it. The smock was mine to bring home and wash it if I wanted. I was not told not to shower and did so regularly. Even if the markings faded I was told that the outline was clear from visible points. I had no problems and washed with aqueous cream. I was told not to use Dove soap because it had metal in it. I did not need extra creams most of the time, but sometimes used a little aloe vera gel.
You may be having a lot of radiotherapy because you did not have a mastectomy. Friends of mine here had just a lumpectomy and radiotherapy, no chemotherapy. They had small tumours, but all were hormonal receptors.
I hope you continue to do well.
Best wishes.
Sylvia xxxx
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Hello adagio,
Yesterday I saw my GP to discuss the results of my DEXA scan and was not really impressed. As I expected, she said it was her duty to offer me polyphosphates. I told her I would not be taking bisphosphonates as I thought they did more harm than good. She was alright with that. I gave her a print out of how I was coping with my osteoporosis and she said I seemed to be doing all I could. I asked her about taking calcium supplements and the possible risks of heart problems. She said she thought this had all been overstated and that because of my mainly good health I would not be the type of patient she might be concerned about taking calcium supplements. By this she meant I did not smoke, drink etc., and that my cholesterol was normal.
In the surgery before seeing the GP I saw a notice about Informed Consent, entitled BRAIN.
B Benefits
R Risks
A Alternatives
I what does my Intuition tell me
N what happens if I do Nothing
While I was talking to the GP I had this in mind!
I was putting the questions to myself mentally and answering them.
I can see no benefits to taking bisphosphonates.
I can see plenty of risks, including brittle bones, or perhaps more brittle than they already are, inflammation of the oesophagus, leading to more problems and more pills, necrosis of the jaw and goodness only knows what else, for which the GP will no doubt have another pill!!!
Alternatives – I carry on doing what I am doing, however, having told the GP that I will never take bisphosphonates I then asked if she had any alternatives to offer. She replied that I might like to try Strontium. I knew vaguely about strontium, having come across it some weeks before, but I did not know much about it. I just asked what it was and was 'gob-smacked' when she said it was a bisphosphonate! I shall be researching this later on.
I – my intuition tells me to carry on as I am. I know that the goal of the GP is to diagnose something and match it up to a pill and then to keep adding on pills as side effects accumulate from each diagnosis! I have seen some of the residents in my apartment complex with bags of pills the size of supermarket bags.
N – I do nothing more than what I am already doing. What happens? I carry on, or more exactly keep calm and carry on, putting one foot in front of the other each day, until I stop. Then, presumably, my troubles will be over!!!
I think that is enough of my sermon for today. I hope you are coping with your treatment.
Best wishes.
Sylvia xxxx
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Hello Bernie,
Thank you for your post. I was so very sad to know that this will be your last post and that you feel you have to move away from cancer. I can, of course, understand this. I shall miss you very much as you were part of that first very strong group that I tried to guide through your treatment and I saw you go through from start to finish with all your concerns and come out successfully. Remember the other four, Maria from Malta, and the three Americans, bak94, christina1961, and mccrimmon324. I know that you all got through that long journey. Remember bak94 who was going through it for the second time after being eight years out from diagnosis. If you ever feel like popping in you know you will always be very welcome.
I do hope that all will go well for your niece Sinead and I know that she is in very good hands with you.
I was so glad to know that I have been able to help you.
Wishing you and yours all the very best.
With great affection.
Sylvia xxxx
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Hello Michael,
Thank you for your post. I can understand how your stepson is feeling. I think here in England the weather has taken a big toll on all of us. It has been absolutely dreadful and there is still no end in sight. I have never heard of so many deaths and people being ill. My husband and I seem to be rare in not having had any of the serious bugs that have been going around. We just feel worn down by the lack of sunshine and warmth.
I was interested to know about Janette and the points system for getting genetic screening. I think we must have the same system here. My maternal grandmother died of metastatic breast cancer in 1955 but that was not sufficient to get me genetic testing. I was told that the age at which I was diagnosed with breast cancer more or less ruled it out that it was genetic. I was told that with genetic breast cancer it usually occurs in younger women. So far no one else in the family as far as I am aware has had breast cancer, except me and my maternal grandmother.
I hope all is well with you. You are lucky to have a bit of sunshine.
Best wishes.
Sylvia
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Hello everyone,
I am just popping to say that I have just recieved my latest email from Cancer Active and thought you would like to know that this one starts of with information about stress and cancer. The title is , Is stress driving your cancer?I do urge you to join up for this free e-mail. You can read it and then click on the other titles underlined for more information. I have just been reading the title Stress, mental state and cancer.
The new edition of icon magazine is out this week. It is the first one of 2013.
Best wishes,
Sylvia.
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Hello adagio,
I have just been reading up about Strontium ranelate for the treatment of osteoporosis. It does not appear to be a bisphosphonate and does not appear to work in the same way. Do you know anything about this?
Best wishes, Sylvia.
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Hello everyone,
I just wanted to say that I have been looking at some of the other threads and am very concerned with the number of women being diagnosed with breast cancer, especially with triple negative receptors. I keep thinking there must be something seriously wrong for this to be happening.Do any of you have any ideas? Why are so many younger women being diagnosed with this awful disease?
I am concerned to about all the information flying around. This must be so confusing to the newly diagnosed. If it were me, I would listen carefully to my medical team and be guided by my medical team.At the same time I would not be frightened to ask questions.
Do not tax your brain with too much information.Tackle your problems one at a time.
Thinking of you all, and especially those of you going through the shock of diagnosis. You can get through this.
Best wishes,
Sylvia.
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Hello everyone,
With reference to Cancer Active, it would be nice if I could have some input about what you think of this charity which believes in an integrated approach to cancer treatment. It would be nice to know if you have signed up to the free e-mail, what you think of it and whether you are getting any benefit from it. If not, it is not worth my posting about it. I do know from the latest e-mail that twice as many people are reading it as nine months ago and I mean in general not on this thread.
With reference to the article about stress there are ten pages (when printed) on it if you click on the link. There is also a lot more information about the importance of vitamin D and of particular interest to us information about two studies that show the importance of vitamin D with triple negative breast cancer. Researchers studying the BRCA1 gene mutation have identified the pathway involved. It is stated that this frequently leads to triple negative breast cancer (TNBC) an aggressive form of the disease. When the pathway is active tumours grow rapidly. Research shows that vitamin D could block the pathway.
We all realise how important this is as currently chemotherapy options for TNBC are poor and younger women tend to develop the disease.
Apparently clinical trials are now planned.
Please read the article for more details.
It would be useful if we could have some input about other things relating to TNBC that you would like to bring up for discussion.
Best wishes.
Sylvia xxxx
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Bernie - sorry to see you leave the forum, but I totally understand wanting to move away from cancer - it is so consuming! Sorry to hear about your niece and I think it is wonderful that you can devote your time to her and be there for her during her difficult time. I don't post much, but have always enjoyed reading your jokes. Good luck, Bernie!
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Sylvia - I love your post about the BRAIN - I am going to write that down and take it with me to every appointment and remember it each time I have to make a decision about something. Perhaps your GP meant that Strontium was "like a biphosphanate" - sort of a natural one which has a similar effect on the bones that the drugs do!
I truly understand what you mean about doctors prescribing one thing and then giving us something else to counteract the effects of the drug. This is what happens during chemotherapy. I don't want to get into that cycle.
I think that you are doing all in your power to deal with your osteoporosis - have you ever had any fractures? I did a bit of reading a couple of days ago and one site suggested that even with osteoporosis that some people have naturally strong bones in spite of them being porous - so having osteoporosis doesn't necessarily mean that our bones are not strong. I walk at least 45 minutes every day which I have heard is good for this condition. I don't get any pain in my back at all.
Have you hear of a book called "Your Bones" - I don't know the author, but it came recommended on one of the articles I read.
I am half way through the radiation treatment now - yeah!!!
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Sylvie - I skim read the article on stress and cancer - planning on reading in more depth later. I do enjoy the Cancer Active articles, although sometimes on reading them, I have a niggling doubt in my mind about doing the chemotherapy and radiation instead of just trying alternatives! Do you ever get these doubts?
I wonder if our toxic environment has anything to do with so many people getting cancer these days?
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HI BernieEllen
You will missed very much. You are a woman with a wonderful heart and interest in Life and love for animals.
You will need as much energy as you have to focus on your nieces recovery..... but please don't forget about yourself.
x
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Thanks so much for all the wonderful words of encouragement ladies. I am very relieved to be finished. Am quite sore now, the top of the site is peeling. It is quite raw but I know it'll eventually heal. I just so want to leave this chapter of my life behind me but I guess that's impossible, there is always the worry and I'm conscious of any ache or pain I get now. Still, I know I have done everything i can to kill the beast and I pray the Lord will keep it away.
Hope everyone is having a good week xx
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Hello Mumtobe
I do hope everything will go well for you now and that you will enjoy life.
Wishing you all the best.
Sylvia xxxx
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Hello adagio,
I have also just been reading the article about stress and cancer and I do think so much of it makes sense. We all have to be aware of the effects on our body and mind of stress and try to get through life with a more optimistic and light hearted approach. I do think the Cancer Active charity is producing an amazing amount of information that we might otherwise not get to know. I have just signed up with them for this year and am eagerly awaiting the first edition of 2013 of icon magazine, which is celebrating its tenth year and this will be a special edition. Did you know that icon means integrated chemotherapy and oncology news?
I do not think that we can get through cancer without the orthodox treatment, as lethal as it is, and in no way is a cure. It does keep most of us alive for a long time. I think I would probably be dead without it. However, this is just my opinion and there are probably people out there that could be surviving without orthodox treatment. If so it would be nice to hear from them.
I am quite sure that our environment is part of the many causes of cancer. That with our food, cosmetics and toiletries and smoking and drinking must all contribute. With younger women I am wondering whether it could be taking the pill from a young age and for many years. There are so many factors that could add up to a whole. My real belief is in prevention rather than in cure.
Hope you are getting through the week alright.
Thinking of you.
Sylvia xxxx
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Hello linali
I just wanted to join you in saying that we shall all miss Bernie who is a really lovely person. I also would like to join you in telling her to take care of herself.
I have just been reading in the latest Cancer Active information about how a lot of cancer patients are often very nice selfless people who keep putting other people before themselves. Those of us surviving cancer have to look after ourselves.
I do hope things are continuing to go well.
Fond wishes.
Sylvia xxxx
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sylvia - I find looking after myself and putting myself before others very challenging. But I am determined to learn - I have to remind myself that looking after myself is not being selfish - but that it is very important for my health. Plus if I am not healthy, then I can't help others as much as I would like. So that's why we all need to take great care of ourselves!!
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Hello adagio
Thank you for your post. It looks as though we are of like minds on many things. I tend to put others before myself and even though on diagnosis I remember being told to learn to say no, I find it very hard to do. I am always trying to help people and where I live I have seen a lot of the more elderly people through illness and difficult times. In fact, wherever my husband and I have been, we find ourselves looking after someone. I find a lot of happiness in helping other people.
It is true that we all need to take care of ourselves.
The book you recommended to me has just arrived in my post, so I guess I shall be doing a lot of reading from “Your Bones” this weekend.
I have been reading up on the internet about strontium ranelate in the treatment of osteoporosis. It works differently to the bisphosphonates. It encourages new bone growth by helping calcium absorption as well as strengthening the existing bones. Bisphosphonates stop calcium leaving the bones (this is a natural process, calcium leaves the bones for the blood for use in other parts of the body) and you have a build up of old bone, which is even more brittle than weak bones. I would value your opinion sometime when you have got through your radiotherapy.
Have a nice weekend.
Fond thoughts.
Sylvia xxxx
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Hello EmmaL UK
I hope all is going well with your chemotherapy treatment with Taxotere (docetaxel).
Best wishes.
Sylvia xxxx
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Hello sam52 UK
I hope you have managed to have a bit of a break during the school holidays.
Thinking of you.
Sylvia xxxx
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Hello Lolalee
Thinking of you and hope all continues to go well in Hong Kong.
Best wishes.
Sylvia xxxx
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Hello placid44 and Cynthie
I do hope that both of you are managing well with your radiotherapy.
Hello InspiredbyDolce (Debra)
I hope you are well and remember to post any new information that you find.
Hello PeggySull
How is everything with you?
Hello linali (Lindsay), Mumtobe (Carol) and Michael
I hope you all have a very good weekend.
Best wishes to everyone. If you get a chance, please read up all the latest information from Cancer Active about stress and cancer and also about vitamin D and its use with all aspects of cancer.
Fond thoughts.
Sylvia xxxx
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Hello Sjesse12345 in Edmonton Canada
I was wondering how you are as if I remember correctly you are going through chemotherapy and then you have to have surgery for a mastectomy followed by radiotherapy. I do hope things are not too bad and we remember we are all here to help you.
Best wishes.
Sylvia xxxx
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Hello everyone, I just discovered this thread and have been reading back a few pages, what an informed positive group of ladies! I was diagnosed with tnbc in jan. when I was told the biopsy results (stage 2 grade 3-tumour grew from 2.3 to 3.2 in a matter of a month) they seemed to want to get me into chemo right away-I actually started chemo 2 days later. I guess because of this I had no scans done other than diagnostic mammogram and core biopsy with aspiration of suspicious node-which came back negative. I have finished FEC and had my first docetaxol 2weeks ago. Sailed through FEC, but am having a lot of bone pain and neuropathy in fingers and toes. Nothing I can't handle and I did call mo who gave me an rx for night so I can sleep pain free. My tumour has shrunk considerably (just a "thickening of mass") after 4 out of 6 treatments. The reason I am explaining all this is that I am having doubts about my radiation treatment plan. My BS says I am a good candidate for lumpectomy (tumour is at 10:30 right breast and not near chest wall). I understand rads are mandatory with lumpectomy but my RO said I would need rads even with mastectomy. He wants to do a very aggressive approach-axillary, chest wall and supraclavicular, with either lumpectomy or mastectomy. At first I think I was in shock and just agreed, but having time to think and read about radiation, I am pretty scared of all the SE possible. I also wonder why such an aggressive approach when no lymph nodes are suspected? I will ask my MO for a second RO opinion unless she can explain why this approach, but am curious what type of radiation other women are getting? It seems like a lot of you are getting a more conservative plan. Thank you everyone, I know I've found a place of comfort amongst you, Shari
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Hi Sylvia and Everyone else,
My names Peter and over the past 5 weeks I have read through all 3500 posts.
Sorry my spelling is not perfect and Liz tells me I type in a Norfolk accent!
Liz my wife was diagnosed with triple negative breast cancer 21 months ago, at the age of 41.
Liz had always expected to get cancer as her mother died of it in 1985.
It really has been a roller coaster ride over this time and it has completely changed our lives. We have a handicapped son aged 12. He has cerebral paulsy down his right side. My 2 children have left home as they are 19 and 21.
We live in Norfolk, UK.
The lump did come up over night as so many others have said. Liz checked herself every day. The day we were told Liz had cancer we were asked what we wanted as far as surgery was concerned? I can say that is an impossible question to answer having been told 5 minutes before it is cancer. We decided to have both breasts removed and reconstruction straight away before chemo. which they agreed with.
As soon as we returned home we both started to search on the internet to get more answers and found out we had made the wrong choice. We phoned the cancer nurse 2 days later telling them we had changed our mind and we wanted both breasts removed but no reconstruction. This was good as it brought the operation forward by 2 weeks.
When we went back to see the surgeon after surgery we asked for a 10 year prognosis. We had to ask this 5 times before we received an answer as he said most people do not want to know? We left with print outs of Liz's reports and a 10 year prognosis with and without chemo.
A few weeks after surgery we saw the oncologist. He told us Liz would have 6 treatments of FEC. She was also offered 3 FEC and 3 T but the onc said the T was a "designer drug and was in fashion at the moment". He did not think it would make much difference. We had read up on T so decided against it. The onc is very highly thought of at the hospital and has retired this year. Liz is very sensitive to drugs so we asked for 70% on the first dose 80% on the second 100% on the third. We then saw the onc again were we requested 100% for the forth and 80% on the fifth and sixth dose. The nurses on the chemo ward said they had never heard of someone requesting how much chemo they wanted each time before. We knew 6, 100% doses would be to much for Liz to cope with.
We requested radiotherapy afterwards as well so we were happy we had done as much as possible to stop it coming back.
Liz still has a lot of pain in her joints, thigh muscles, wrists and shoulder blade. This seem to come and go at certain times of the month. As she still has periods we think it is hormonal. Liz has had scans, Xrays etc but nothing can be found causing the pain.
We saw a doctor today concerning the Brca gene and hope to be offered the test. Either way Liz will have her ovary's removed this winter as we do not plan any more children so feel this is something else we can do to help prevent the cancer coming back.
Liz does not eat any special diet, she loves beef, sugar and milk products so has no plans on giving these up.
I feel like I have lived through it as well and can understand why so many men leave their partners as it is a way out of this nightmare for them.
Liz and I have been together for 15 years. 13 of them we have been together nearly 24 hours a day as we have our own chocolate fountain hire business that we run from home. We argue like any other couple as we both like to be top dog but cannot imagine what it would be like without each other. We love sitting at home watching TV, having days out etc neither of us drink or smoke.
Since Liz was diagnosed we have purchased a motorhome and travelled a little around Europe and the UK but this year we plan to travel more as Liz is feeling better after the chemo effects are calming down. We take our son out of school when ever we want and the school has been very good about it. We have just come back from Lanzarote. Liz said she had no joint pain while she was there because of the hot weather. We plan to go to the French Alps in the motorhome in a few weeks time.
It may sound like I am in charge and Liz does what I suggest. I would point out Liz has never done what I suggest over the past 15 years everything is discussed, we agree that I am right then she does what SHE wants, as it should be.
I think the more information I can have the better I can make the remaining years we are together. Liz like many of you on here like to try and put it to the back of her mind and not think about it, if thats possible?
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Hello Peter,
Thank you for your post. I was very impressed to know that you had taken the trouble to read all the posts on this thread. That takes some doing, but is a very sensible thing to do, and is the sort thing that I would do and would advise others to do, so you know what is going on. There is a huge amount of valuable information on this thread.
I was so sorry to learn that your wife Liz was diagnosed with triple negative breast cancer 21 months ago at the young age of 41. I was very sorry to hear that her mother had died of it in 1985.
I can understand what a roller coaster ride it has been for both of you over the past twenty-one months and how it has completely changed your lives.
In addition to this you had to take care of your twelve year old son who suffers from cerebral paulsy down his right side. Do your other two children live close so that they can give some support and how are they coping with their mother's breast cancer?
I was interested to know that the lump seemed to appear from nowhere. As you know from the thread, this often seems to be the case with these cancers that have triple negative receptors. It was certainly the case with my own. You do not say in your details what kind of breast cancer your wife was diagnosed with. Was it invasive ductal carcinoma (IDC) which is the most common form of breast cancer, whether the receptors are negative or positive?
From reading your post it sounds as though you were pushed somewhat too quickly into making decisions. A breast cancer diagnosis always sends you into shock, even if you know beforehand this is what you are going to be told. You need time to take in the diagnosis before discussing your options.
I think that with the small tumour that Liz had, surgery was probably the right option with which to start the treatment. I can understand with the family history that you opted for a bilateral mastectomy. I think having reconstruction straight away or waiting until treatment is over is a very personal choice. Having reconstruction at the same time as surgery makes for a much longer operation and probably more complicated. I knew that I did not want reconstruction, so I did not have that worry. I was told also that breast cancer surgery was not considered a major operation, such as a hysterectomy or hip replacement.
I think it is probably unusual to ask for an exact prognosis with breast cancer, because no one really knows. I was told that my prognosis was poor, but that was based solely on the fact that the receptors were negative and that medication such as Tamoxifen was of no use.
I would be very interested to know what the prognosis was with chemo and without it. I know my oncologist told me that chemotherapy cannot cure cancer.
I was very interested to know about Liz's chemotherapy treatment. FEC (fluorouracil, epirubicin and cyclophosphomide) are a common combination, but I was very surprised to read that your oncologist said that T, which can stand for Taxotere (docetaxel) or Taxol (paclitaxel), was a designer drug and that he thought it would not make much difference. Both of these drugs belong to the group of drugs known as taxanes and have been in use for quite some time now and are said to be very effective against breast cancers with triple negative receptors. They are expensive, so I wonder whether he was just trying to save some money.
I was very puzzled by what you said about asking for certain percentages of the drugs. I have not heard of this, but I suppose all hospitals work differently. Usually you are given doses of the drugs depending on your height and weight. I remember all this very clearly the drugs were made up at the hospital only after you signed in for your appointment. The dose given according to your height and weight will be the dose required to work.
I am assuming that you had radiotherapy to finish the treatment, as this is important for mopping up any stray cells. How many weeks of radiotherapy did Liz have?
I know from women on this thread that they do have all sorts of aches and pains after treatment, and they should be checked out. Since Liz has had scans and x-rays that have found nothing, it could be just the results of treatment. Has she had a bone nucleide scan to make sure nothing is going wrong in the bones? On diagnosis I had an CAT scan and a bone nucleide scan and had the same scans after treatment. Is she having regular three-monthly check ups? This is often the case for two to three years after diagnosis and then it goes to six-monthly check ups.
I think you have done the right thing about trying to get a BRCA1 or 2 gene check up, given that Liz was only forty one when diagnosed. How old was her mother on diagnosis and on death?
I know that some of the younger women who post have opted to have their ovaries removed in an attempt to prevent the cancer coming back, since there is also a connection between TNBC and the risk of ovarian cancer.
As you will know from reading this thread, we are all very interested in nutrition and healthy eating and taking control of what we eat is one way we can help ourselves. We all know that there are multi-causes to breast cancer, but a lot of information tells us that diet plays a big part. My breast cancer surgeon is convinced of a connection between breast cancer and dairy products, because of the growth hormones in them and this also applies to meat. Another thing we have all learned is that sugar should be avoided because cancer cells love sugar and thrive on it.
It is very difficult on family members when a loved one develops cancer and everyone needs a lot of support and counselling, that is why there is a lot of counselling on offer and should not be rejected out of hand. It is good for all concerned to have somewhere to go to express what is going on in your head.
With the treatment behind you, Just take it one day at a time and enjoy your travelling.
Keep in touch.
Best wishes.
Sylvia
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Hello slv58 (Shari),
Thank you for your post. I was sorry to hear that you have been diagnosed with triple negative breast cancer. Like many of us with triple negative receptors, your tumour grew quickly, so it was just as well that you had your chemotherapy quickly. Most of the TNBCs are grade 3. It is good that you have no nodes affected.
The way we react to chemotherapy is very individual and none of us really knows how we are going to be affected. The thing about Taxotere (docetaxel) is that we are told it is very effective against triple negative breast cancer, so hang in there. Docetaxel does cause neuropathy in the fingers and toes in some women. I have peripheral neuropathy in the feet but it did not come on until after I had finished chemotherapy. I still have it, nearly eight years out from diagnosis, but most of the time it does not bother me. My oncologist told me it was definitely caused by the docetaxel and there is no cure for it. I had it checked out by a podiatrist as well and she said the same. It can also cause discolouring of the nails and some even find there nails fall off.
Here in the UK standard treatment for a small tumour is often lumpectomy and radiotherapy, but your medical team may want more aggressive treatment because of the aggressive nature of breast cancer with triple negative receptors. I had a large tumour, chemotherapy before surgery, a mastectomy of the right breast and removal of seven lymph nodes, even only the first one, the sentinel one, was affected. I then had three weeks of radiotherapy with boosters. This was what the medical team advised and this is what I would have chosen anyway. I would go by what your medical team advise. Radiotherapy is a very important completion of breast cancer treatment as it mops up any stray cells. By all means get a second opinion if it gives you peace of mind.
Remember, we are all different and we get slightly different treatment plans. For example, I had three months of EC (epirubicin and cyclophosphomide) not FEC. I then had three months of Taxotere (docetaxel) and not Taxol (paclitaxel). When I asked why I was having docetaxel my oncologist told me it was less harmful on the heart than paclitaxel. I do not know what the difference is. They belong to the taxanes group of drugs but come from slightly different trees. Your oncologist will know exactly how much radiotherapy you need.
On behalf of all on the thread I would like to say welcome and I hope we can help and comfort you. I am glad to know that you feel you have found a place of comfort amongst us. Keep us informed about what is happening with you.
A special welcome for someone from Ontario, Canada. I lived in Ottawa for nine years and London for four years. I also lived in Montreal, Quebec for four years.
Best wishes.
Sylvia xxxx
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Hi Sylvia,
On the confidential report it says Invasive Ductal Carcinoma: present.
Type: Ductal NST, Basal phenotype.
No definite lymphovascular invasion
My oldest 2 children are not Liz's and has coped ok. We have not told Taylor our 12 year old as we feel not telling him is better than telling him.
Yes Liz was originally going to be given the standard dose of Fec worked out by weight and height but Liz is very sensitive to drugs she only need to take 5 mils of night nurse to knock here out for the night instead of the stated 20 mils and Liz only took half a little blue tablet instead of 2 to help her sleep while going through chemo. As we had read up on chemotherapy by this time she was to start it we did not want Liz to start with the full dose and the onc said that may be wise. But we decided to cut most doses down. As you have said yourself we are in control of any treatments we have and we decided not to have the FEC at full strength. The only thing the onc said was if the cancer comes back you will always be thinking would it have come back if you had had the full dose? He said he cannot say whether a reduced dose makes any difference at all. He was speaking from over 20 years experience.
The onc was very highly thought of at the Norfolk and Norwich hospital and I have wondered about his comment about the T being a designer drug and in fashion at the moment but I do not think it was anything to do with cost.
I think the amount of chemo they prescibe is the maximum safe amount they feel they can give you. I do not think it is the amount needed to work as that is something very individual? Also all the drugs Liz takes works on her but in a lot smaller doses compared to most people. Neither of us worry about the reduced dose she had as it was only a preventative measure as hopefully all the cancer was removed.
Liz had 15 doses of radiotherapy over 3 weeks. We were told it was not really needed but we were offered it so took it.
Yes Liz has had the bone Nucliede scan which was all clear.
We only have yearly check ups. Our first check up was with a foreign doctor who does not treat women very well (we have been told by the nurses) he examined Liz for all of 60 seconds and said she was fine see you next year. Well we have changed to a lady doctor for Liz's check up 12 months later.
Liz's mother was 55 when diagnosed and 57 when she died. Liz has decided to have her ovaries removed whether she has the Gene or not but maybe not before the winter so we can travel about through the summer months.
The prognosis was done by a programme called Adjuvant! Online which is a programme available to the medical profession to calculate mortality etc
it uses Age(41), Your health(perfect), ER Status(neg), Tumor grade(3), Tumor size(3.1 to 5cm), Positive nodes(0), Liz's result was:
64% to be alive in 10 years time. With Chemotherapy 77.6% so an increase of 13.6%.
But as we know this is an average over 100s of patients and not personnal.
We believe that Liz's journey with cancer has been set and we cannot do much about it. If it is to return we cannot stop it only maybe slow it down and if she is cured then what ever she does will not bring it back.
We were also told that there are no cases of Triple negative coming back after 5 years so once you are over the 5 year mark from the end of treatment date. It will be a primary cancer not the old one coming back!
We do plan to enjoy our life and see as much of the world as possible.
Peter.
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