Calling all triple negative breast cancer patients in the UK
Comments
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Bernie, My oncologist says that he will be prescribing me a specific cream that I can't remember the name of for when I start. He says I'm definitely going to burn and I'm assuming it's some type of burn ointment, my skin is super, super fair, I have never been able to tan and only burn in the sun.
I can't imagine a 2 hour drive every day. That's terrible, do you live in a populated or more rural area?
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Sylvia - that is such great news to hear, and I'm sure you felt such relief! I understand about how you sometimes need to be by yourself to absorb news, even the good. I handle stuff much the same way.
I'm holding up okay - I've been dealing with severe back pain, but have it under control with morphine and steroids. I had an MRI today to assess for damage, so we'll see. The clinical trial I've been waiting for finally opened, so I'll be able to start treatment next week, finally! If it is going to work, it will help with my back pain, and I'll know fairly quickly. The same drugs for my back have been helping my cough too, so even though I feel a little loopy on the morphine, I'm otherwise feeling good.
A bit down over my PET scan report which showed much more extensive mets than my doctors were telling me. But it is water under the bridge, and if I am going to respond to treatment, it isn't really any different than what I knew before.
For all the ladies doing radiation - hang in there, and MOISTURIZE!!! I used Jean's Cream and Udderly Smooth with Urea - both can be ordered on Amazon. They did wonders for me, I used them several times a day (just not right before radiation), and my skin held up really well.
Also, don't be suprised if you feel some nausea - although every doctor will tell you it isn't from radiation, it really is, lol. Especially if you are having your left side radiated - it is close enough to your stomach.
Best of luck to you guys!!
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Taking a break from work to post my radiation update for those who are new to it or haven't started yet. I am on #15 or #16 of 33 planned treatments. The first 28 treatments treat four fields including the axilla. Today I had some very brief twinges of pain when they put the saline pad on my skin and felt some tightness. Last Saturday I went back to my physical therapist who has helped me with everything from a mountain biking injury a few years ago to low back issues, and he showed me a way to gently stretch my shoulder without stressing the shoulder joint itself. I would describe it, but it is individualized to my upper back/neck issues so I don't want to cause someone else problems because it might not suit their body. Anyway, I highly recommend physical therapy during radiation if it is available. My insurance pays for 20 treatments a year so I am taking advantage of it.
I haven't felt very fatigued yet. I've been working long days during each week at my business. So far I can say that the tightness across my chest is starting to get a little worse but that is the only symptom other than some "tanning." I am wearing a bra with protheses everyday on top of the area without a problem. It is so much easier than chemo in my opinion- at least so far.
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I do remember feeling sick from radiation the last time I went through it, and it was on my right side, I also remember getting a headache and very tired towards the last treatments. My skin held up well, but a bit after I was finished, maybe a week or less my nipple turned black! Freaked me out! It was fine and went back to normal after awhile, ro was not concerned about it. This time on the other side I will not have a nipple to worry about! Gotta think of the positives! If you have a mastectomy, how does the scar area hold up during rads? I don't remember any issues with the scar from my lumpectomy.
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Hi mccrimmon. I do live quite rural, have a twenty minute drive to town to get the bus. You get used to driving everywhere. My nearest village is 3 miles away with a tiny little shop and post office but it does have two pubs.
Suze35, thinking of you - great the trial is finally starting.
Best wishes to everyone
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Wow Bernie, I thought I lived in a Rural area. We definitely need to drive to get anywhere but its not as rural. Thankfully you have 2 pubs.
9 days PFC, starting to feel like my old self, just wish the anxiety would go away and my hair would come back faster.
Hope everyone has a good day.
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Hi to all...firstly Sylvia, so glad to read that your scare was just that; you must be so relieved. Next thanks to you, mccrimmon and Bernie Ellen for kind wishes...yes pity op was postponed, but have come to terms with it, and since I've very little to do this week (as I'd prepared to be out of action!), I intend to become a lady who lunches, will read all day if I so wish and do as few chores as possible!!! That should meake me feel better....
I really appreciate the comments of those of you who are having rads right now, as that is what i'll be doing after surgery, so its good to know what to expect. mccrimmon, I know you've only recently finished chemo, but did you have your op before? Don't worry about your hair, it'll start to grow back quite quickly soon..mine is, and is also totally white..
Sylvia, to answer a question you'd asked several pages back, my tumour is in my right breast as well..don't rightly know what position, but basically behind my nipple and slightly to the right..
greetings to you all, it's a lovely day here so I'll go out for a walk.
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Maria,
Take full advantage this week, make sure to get plenty of rest, I'm sure that will help with your recovery. I had my lumpectomy before chemo, everything was so rushed and I wonder if I would have chosen a MX if I had been given the choice. I suppose since I'm large breasted everyone just assumed that would be the best for me. I still have to be tested for the BRCA gene and depending on the results will get a MX anyway. As of right now I'm lopsided and if no MX in the future would like to get them evened out a bit.
As far as my tumor, it was in my right breast and looks to be on maybe 12 o'clock position. I remember being so upset right after the surgeries and looking at these bright red gashes, I felt like a stitched up rag doll but I'm happy to see that they are actually fading slightly. I was told to use vitamin E oil on it so I'm pretty religious about it using it daily.
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I thought you would like to see my cottage, don't know why it posted twice.
I've inherited down from my great granfather
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Bernie, I love it!!!! I love those flowers too. I wish I had a green thumb, sadly living in Florida everyone is into their yards and my husband and I buy flowers and plants, kill them off and have to re-do it again the next year. My job is weeding and trimming while hubby cuts the grass, with me going thru this our yard is a disgrace this this summer, we are just now getting around to a regular routine. Do you have a lot of neighbors?
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Hello mccrimmon324
Thank you for your post. It must be so nice to be in Florida and to be surrounded by all those centres for surgery, cancer and radiotherapy. I wonder if it is like that in all the other states. I keep reading how much better cancer treatment and especially survival is better in the US than anywhere else. Unfortunately, in the UK we do not have a good record for cancer survival rates. In fact, we seem to be among the worst in Europe. I think that the NHS here in England is overloaded. There always seems to be a shortage of money. I have no complaints with my own treatment, which I think has been excellent.You are lucky to have a choice about where you can have your radiation treatment. Here, everything has been too centralised and the hospital in Exeter is huge. It is twelve miles from Exmouth, so it was not too bad for me, but some women were coming from North Devon and travelling fifty or sixty miles to get their treatment in Exeter, and then fifty or sixty miles back home! The NHS provided hospital taxis, but even so, I thought it was a lot to ask of patients. Some women were actually staying in nurses' quarters to avoid the travelling!!!
I hope the time will pass quickly for you and that you can soon get started on your radiotherapy.
What a lot of waiting around, much of it in a state of anxiety, there is in this cancer treatment.
I do hope you will not have too many problems with your skin. I am surprised that your oncologist has told you that you are going to burn. I have fair skin and burn easily if I stay in the sun, but I had no problems with the radiotherapy. I was definitely given a tube of cream to use and advised to wash with "Simple" soap or to use Aqueous Cream to wash with. It is strange, but I went a little red after finishing the treatment. I went to the hospital to show it to a radiologist and she told me to put some aloevera gel on it, which I did and the redness disappeared. As I mentioned in one of my posts, my homoeopathic consultant prescribed X-ray and Belladonna around the time of my radiotherapy and Arnica to help with healing. I know that there is a lot of controversy about homoeopathy, but I am convinced it helped me at every stage of my treatment. It also helped with anxiety, because my consultant and I had a lot of time together and she asked me all kinds of questions about my state of mind etc., which was very calming.
Why not tell us a bit more about Punta Gorda and your everyday life? That would be very educational and help us all to imagine or visualise your everyday life.
Best wishes
Sylvia.0 -
Hello BernieEllen
Thank you for your post and for starting off the discussion about your experience with radiotherapy. I was surprised to know that in Ireland you are not using any creams or lotions. I suppose different health systems have different ways of treating patients.I was amazed to learn that if there are any burns or blisters you will be treated by the burns unit! I had no idea that people could burn in that way from their treatment. It does not sound normal to me. I had no pain whatsoever. I remember my oncologist warning me that there was sometimes inflammation of the lungs. Luckily for me, I did not experience anything like that.
It must be nice to be able to talk to other people on the bus and it need not end with treatment. You can always form a group and keep in touch afterwards. I am amazed at all the social groups that are forming on various threads. People are meeting or preparing to meet in New York, others are going to Las Vegas and so on. I do not know why it is but this does not seem to happen with the Brits. Could it be that they are too reserved? I am a bit different, having spent six years in France, three in Morocco and seventeen in Canada. Why not start an Irish Moving On group? How are you getting on with the three elder gents? There were a few men having radiotherapy for prostate cancer when I was going through my treatment. The journey to get your treatment must be very tiring, especially every day for five days a week.
By the way, Bernie, do you get given a lot of information at the hospitals in Ireland?
Your cottage looks so pretty and the flowers are so colourful. I can imagine your life is peaceful there. You are far away from the madness of the city and here am I thinking that Exmouth is small! It is about 40,000, but I was born in London and spent the first twenty years of my life there!!!
Best wishes
Sylvia0 -
Slyvia, I'm very interested in Homoepathic treatments, along with reg medical treatment. I'll have to look into the creams you mentioned and pick up some so I'm ready. If I can ever figure out how to post a picture of myself you'll see just how fair I am. I can't stay in the sun more than 20 min without getting a good burn.
From what I understand Surgery centers are becoming more popular here, my mother in law says they are popping up around her back in Philadelphia where we are from so I guess it might be the new way of things here. I feel so bad for the poor people that have to travel like that, something should be done. I know that I've missed a heck of a lot of work because of this and while I'm not complaining we've definitely had to cut our budget. How are these people expected to support themselves when they spend all day on a bus? Its a shame, added stress is certainly not needed during treatment. It's nice to hear that the nurses offer them a place to stay.
Unfortunately I don't think Punta Gorda or my everyday life would be very educational or entertaining. I'm married, no kids, two dogs that we spoil rotten. We are originally from Philadelphia PA, lived there until we moved to Punta Gorda about six years ago to be closer to my family but neither one of us ever really acclimated so we plan on moving back to Philadelphia as soon as we can. That's not to say Florida isn't beautiful and you certainly can't beat the weather, unless there's a hurricane, but I think since we grew up with four seasons we really miss it. I miss snow, I miss the smell in the air in the fall. I think the change in seasons makes you apprieciate each season more. I believe I read in one of your posts that you grew up in London, my hubby took me there for our anniversary, that was an amazing trip, we can't wait to go back. In fact, I was diagnosed the week after we got home and ever since then my husband and the friends that went with us have been planning a return trip as a celebration once my treatment ends. My only concern is that I have hair, I certainly don't want to travel wearing a wig everywhere.
I think I've rambled enough! Why don't you tell us something about you Slyvia.
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Hello Suze35
Thank you so much for your post. It is very much appreciated, as I know you are going through a difficult time.It is good to know that we both need quiet time.
I am glad to know that you are holding up OK but sorry to hear that you are dealing with severe back pain. Thank goodness for the morphine and steroids. I hope you will have good news from your MRI scan.
It is such good news that your clinical trial has finally started and that you will be starting treatment next week. Please let us all know how you are getting on, so that we can support you. I do hope it will work for you and that it will help your back pain. I was also glad to know that the drugs are helping with your cough as coughs are very wearing at the best of times.
How exactly does the morphine make you feel? I do hope it makes you feel good.
I was sorry to learn about your PET scan report, but keep looking on the bright side and hoping the trial drug will work. I do not know much about PET scans. I have never heard them mentioned at my hospital. I am wondering whether we use them in the UK. All I know is that cancer cell glycolysis is the basis of positron emission tomography. Does anyone know about this?
Thank you for your useful information about radiotherapy. I suppose radiation must make some people feel nauseous because we often hear about radiation sickness.
Best wishes
Sylvia0 -
Hello christina1961
Thank you for your post. I am sure that your detailed account of all you are experiencing so far during your radiotherapy treatment will be of great help to others. You have written it in a very professional way. Thank you.Best wishes
Sylvia.0 -
Hello bak94
Thank you for your information about your experiences when you had radiotherapy.You asked about radiotherapy after a mastectomy. I did not have any problems with the scar area. I had my mastectomy on May 17th 2005 and then started radiotherapy about the last week of June and had it for three weeks. They told me the time between was to give everything time to heal after surgery. I hope that helps you.
Best wishes
Sylvia0 -
Hello Maria_Malta
Yes, I am very relieved that everything was OK for me. It made me realise once again that one can never take anything for granted with this awful disease. You can switch off, but there can never be any real peace of mind.I do hope you will enjoy yourself this week and become a lady of leisure for a while. It is good to goof off as we say here, or, as the younger people say, chill out!
Thank you for all your information. That will help everybody. It would be interesting to know if there are statistics about how many women with breast cancer in the right breast are TNBC and why it is more common to have breast cancer in general in the left breast.
Enjoy your lunches!!
Best wishes
Sylvia.0 -
Hello again mccrimmon324
I was interested to know that your breast cancer was also in the right breast. I was also interested to know that you are going to be tested for the BRCA gene. I think this is a very good idea and I think we should all be tested. Here in the UK it is difficult to get genetic testing. You can get it on the NHS but it is not easy and private is very expensive.I think that vitamin E oil is a marvellous product and I am glad to know you are using it.
I do quite a lot of gardening in the grounds where we live, so I was interested to know that you and your husband do a bit. I think it is very good therapy. I find it peaceful and calming. I have been doing quite a bit today as I needed some peace of mind after two trips to the hospital in Exeter and a trip to the dentist yesterday, which I found painful! I shall reply to your post about homoeopathy and my life tomorrow, as I am getting very tired after doing a lot of posts. It is 8 pm and I think I am going to watch television for a little while.
All the best
Sylvia0 -
Thank you, Sylvia! I'm still busy at work (I'm trying to make up for lost time during chemo) but will hopefully have a chance to catch up with all the posts this weekend. My bone scan results came back today and they were clear but I still do not have the results of the CT. Hopefully, it will be in tomorrow. I had a very anxious day, breaking down into tears during radiation. I'm not usually very emotive around strangers but the tension of waiting on results from these scans along with my busy workload has been wearing me down this week.
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I am a very different person when waiting for scan results! I get crabby, I cry, I shake, it is just crazy! I need to learn to be more calm while waiting!
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Hi christina1961. It is hard waiting for results and all off this does wear us down. Why wouldn't it
I give myself small treats, i know it might sound a bit daft but i find it helps. Little things like a new plant for the garden or just a visit to my favourite coffee shop. Things i probably took for granted before.
Hi mccrimmon, i do have neighbours but you can't see their houses from mine. I totally agree about the seasons, this is my favourite time of year. All the amazing colours. I am just picking the blackberries and hazelnuts now. Just started lighting the fire, we don't have central heating, have a range cooker that heats the cottage, so i also collect all the fallen wood for that.
We'll have to all have our own meet up sometime.
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our road last winter
still can't work out why it posts double
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view from the car
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Hello mccrimmon324
I was interested to know that you are interested in homoeopathic treatments, along with regular medical treatments. I read last week that it is now considered enlightened by the medical establishment to include alternative treatments along with orthodox. I have a mind of my own, accept that I have to play an active part in my own health and if I think a product might be of help I research it and try it. After all, a lot of the orthodox medicine comes from nature, so why should the medical establishment mock natural products? I think Taxotere (paclitaxel) comes from the yew tree and along with Taxol (docetaxel) they have done wonders for the treatment of cancer. As you may remember, I saw a homoeopathic consultant to whom my breast care surgeon referred me (and other patients) before I started my orthodox treatment. Unfortunately, it now seems impossible to get funding here, but I think the UK has to adopt more progressive thinking in many ways. We have our feet too much in the past in the UK.I think it is good that more and more surgery centres are becoming popular in the US. We certainly need everything near to where we live when suffering from breast cancer, other cancers and other degenerative diseases. A friend of ours is having to travel from here to London for an ablation procedure to do with heart problems. Even if they lay on transport, that is one hell of a journey, especially if it is done in a day, as I expect it will be. That will be a 300 mile round trip!
I think it is so unfair that people have to suffer financially because of illness. Any fair country should be able to support the sick and needy. In the UK we have a very unequal society.
Thank you for telling us a little bit about your life in Punta Gorda. I can understand that you have found it difficult to get used to life in Florida after Philadelphia. I can understand how you miss the seasons.
I suppose that each one of us on this thread goes through the same motions in our daily lives wherever we are. It is a routine of work, eating, shopping, cleaning, paying bills and sleeping. In between we hope to get some relaxation.
How unfortunate that you were diagnosed with breast cancer just after returning from a trip to London that you so obviously enjoyed. I am sure you will return there when all this is behind you. I would not worry about wearing a wig. They are so natural looking that nobody notices. In fact, friends here thought that I had not lost my hair during treatment! Your hair will grow back pretty quickly anyway.
My life here in Exmouth is pretty quiet and uneventful. I do not look for too much, and, of course, my biggest wish and hope is that I shall live cancer-free. In my younger days I liked to travel and after finishing university I went to live in France, where I taught 11 - 18 year olds. I also lived in Morocco for three years and taught mainly boys 13 - 18. It was quite an experience and I lived through the time when there was a military coup, pretty frightening. I taught French in the UK for a bit and then my husband and I went to Canada where we stayed for seventeen years. We have been back in the UK for seventeen years and have lived in Exmouth for nearly ten years in an apartment complex, which I help run as a volunteer director. There is quite a lot of work involved but I can cope because I am very hard working, thorough and dedicated. My motto in life has always been that if a job is worth doing it is worth doing well.
I like to garden, walk, read a lot, and help people. Wherever we have been, we always seem to adopt elderly people and help them.
I like peace and quiet and I do sometimes get anxious. My life changed when I was diagnosed with breast cancer. It was such a shock as I had always looked after myself. Anxiety from that will always be with me.
I hope that gives you an idea of what I am like. I am tall and slim, fair skin, green eyes and brown hair. I have very little grey. I think that must be my diet.
Very best wishes
Sylvia.0 -
Hello christina1961
Thank you for your post. Please remember to do your posting at your pleasure, when you have the time. I want this thread to be a source of relaxation and support where you can really be yourself and write whatever you like. It should not be a chore.I was so glad that your bone results were good and I hope you will have the CT results today. I wonder whether our medical teams really understand the emotional stress that a cancer diagnosis puts us under and how draining it is to have to wait for results.
It probably did you a lot of good to break down into tears during radiation. The worst thing is to keep our emotions bottled up. I do admire your courage in working so hard during treatment. You have barely recovered from chemotherapy and surgery. Remember, the effects of chemotherapy can last for a long time and you do need a lot of peace and quiet, rest and relaxation. I think that stress is the great enemy in our modern life and especially for those of us who have been through cancer. We have to learn not to worry and look after ourselves. I have always been a worrier, but now try hard to take life more light heartedly and tell myself that worry gets you nowhere. Life is too short.
I hope you are getting a lot of support from your daughter and that you are reassuring her, because she will have her own anxieties.
The weekend is nearly here, so have a good rest.
Best wishes
Sylvia0 -
Hello bak94
I can understand how upset you get when waiting for scan results. You react how you react and we are all different. There is nothing wrong with that. I think it is good to cry and be crabby if you want. I tend to be very anxious inside of me and I find that I cannot breathe properly. I may get a bit teary, but I do not know if I can cry any more about my self.Best wishes
Sylvia0 -
Hello BernieEllen
I was amazed at the photographs of the snow. For one minute I thought I was back in Canada! However, I do remember that it snowed in Exmouth last winter and many of our residents found it hard to cope. We had to do a lot of chauffeuring and running errands for people.I definitely think it is a good idea for everyone going through breast cancer treatment to give themselves little treats. It can be anything that makes them feel a little better. I like your idea of buying a plant for the garden or going to your favourite coffee shop. You have to do whatever you can to get you through the long treatment. When treatment is finished it is a good idea to carry on with the treats. Here, in Exmouth, there is a very beautiful garden centre with a lovely coffee shop. It is not a big place and the small grounds are a haven of peace. The coffee shop is very welcoming and we often go there for a pot of green tea and a scone. Sometimes we have a healthy lunch there, especially if we feel a bit stressed. My idea of a good treat is to buy a book and my husband likes to buy magazines about computers!
It would be interesting to hear what others like to do as a special treat.
I hope you have had a good day with your radiotherapy today and I know you will be feeling happy because your husband is home for a while.
Best wishes
Sylvia.0
