Calling all triple negative breast cancer patients in the UK
Comments
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Sylvia,
I just saw your post to Pam and I am so sorry about your arm. I hope it is not lymphedema, perhaps it is a strain of some kind? I hope it makes an exit and leaves you in peace, whatever it is.
I had just added a post to you 10 minutes before you posted to Pam, just in case you missed it.
Mary
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picture of my impatiens/hosta bed before it freezes, we will be there before long. Inpatiens seeded themselves, hostas are young and hopefully won't get eaten this winter
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Hi Sylvia,
I really hope that lymphedema is not happening in your arm after all this time. I will say that my oncologist told me that if I developed it, he was confident that it could be reversed. I've been hanging my hopes on that. And I'm sure you'll keep us posted when you can.
Thinking of you,
Pam
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Hello Pam,
Thank you for your posts.
I am pretty sure that the swelling that started mainly on Friday is lymphoedema. I am puzzled as to why this should happen after all these years, but I do know that after breast cancer surgery, removal of lymph nodes and radiotherapy it can happen at any time.
On Saturday morning I went to our local Exmouth hospital to the minor injuries department because I wanted to rule out sprains and strains. I was not in any pain or inability to move arms easily, so I did not think it was this. At the hospital I saw a very nice woman to whom I gave all the relevant medical history. She ruled out strains and sprains and said it was most likely lymphoedema. There was nothing really they could do there at that hospital.
I came back home and decided to phone someone I know from the surgery where I have regular appointments with a podiatrist for my foot care and checks on my neuropathy. In that surgery there is also a clinic for complementary and clinical therapy. I noticed when I first went there that they did lymphatic manual drainage, but I did not need it then. It so happened that the therapist running it was familiar to me and I recognised her from when she was working at FORCE, the cancer charity in the grounds of Exeter hospital, which is where I was diagnosed with breast cancer. I phoned her and she gave me some advice and information on what to do during the weekend.
I followed all this and propped my right arm up on four pillows to keep it elevated. I also had to keep my arm very cool and avoid heat. I did the manual massage, which I had learned after surgery. The swelling gradually subsided and it is also normal. I kept it elevated on the pillows during the night as well.
This got me to Monday morning. I have been in touch with my GP and hope to see her later today to see what she has to say.
I have an appointment with the therapist I contacted on Friday.
I hope I do not have to have regular treatment and that this is a one off incident.
I have been trying to work out what I did last week that was not part of my normal routine and may have sparked something off with the lymph. I had a flu jab last Tuesday and that was the first one I had had since 2005 when my oncologist told me to get a flu jab and a pneumonia jab. This was the first flu jab I had had in twelve years. I had the jab in my left arm as I know we are not supposed to have anything done in the right arm in the way of injections or blood pressure measurements etc.
I phoned the pharmacist who did my injection and asked if there was anything in the injection that might have had some kind of effect on my damaged lymph system. She did not think the contents would have had any effect but the vaccine quite possible could have done something to the lymph system. Apparently the vaccine sets the antibodies in action and since mine would have been low from not having had any flu injections for a long time, there could have been some kind of over-reaction. I shall let you know what the GP says.
I have detailed all this because we should all be alert to the possibility of lymphoedema when we have had lymph nodes removed and/or radiotherapy.
What I learned from the therapist talking to her on the phone, was that when you have a swelling like I had, you have to look for any redness on the skin and whether the swelling is between the wrist and the elbow or in the upper arm. Apparently it is much worse if it is in the upper arm as it means there could be a blockage somewhere. That and redness means you could be developing cellulitis and you need to get to A&E or a doctor as you need antibiotics urgently.
It has been quite a frightening few days. One positive thing about my visit to Exmouth hospital was that I found a useful magazine abandoned on a table. The title is LymphLine – Newsletter of the Lymphoedema Support Network. This edition was summer 2017 and it is loaded with information about lymphoedema and cellulitis. It has articles and personal stories from patients. The link is www.lymphoedema.org. You can subscribe by giving a donation. You get four editions a year and other things sent to you. The organisation is located in London, UK.
I still have bits more of your posts to answer and I shall do it as I can.
Talk later.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your posts. It is a mystery to me where your post went. I was sure it was on the same thread as mine.
I think that dementia and Alzheimer's are more likely to be lifestyle than genetic. I also think that all the medication that is thrust on elderly people may play a part. I have my doubts about giving all these statins to so many people, especially the elderly. Sleeping tablets and antidepressants will not be doing any good either. Goodness knows what antibiotics and steroids are doing to people.
I have read before that women can inherit breast cancer faulty genes from the males in a family, so I do not know why you were questioned only on your mother's side. I think that the medical establishment is too restricted in their views. I was interviewed by a genetic nurse who, after a long interview, would not refer me to a genetic consultant, because she said that people with the faulty genes develop breast cancer at a much younger age and being diagnosed with breast cancer at sixty-three meant that it was most unlikely that I would have these genes. There are always exceptions and there has been lots of cancer in the family on my mother's side, but I do not know much about family history. My maternal grandmother died of metastatic breast cancer and she was in her early seventies. I think all cancer patients should be screened genetically. I know nothing about my grandparents' families.
The weather has been very mild here, too, and I think it would be good if we could have a frost.
You can see all the details about my past few days in the post to Pam.
Thank you for the beautiful photograph of the flowers in your garden, they look stunning.
That is all for now. I am waiting for the GP to phone.
Love.
Sylvia xxxx
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HI, Sylvia
I hope you have had some more information on the lymphedema that has appeared in your arm, or is that coming today? When I was finishing up chemo I had severe arm, shoulder and back pain. In hindsight I am pretty sure it was because of the systemic neuropathy combined with the pain many of us get from the chemo regimen. I had injured my shoulder while on chemo and was thoroughly miserable with any minor exertion. My MO sent me to a physical therapist who was educated in lymphedema treatment, she inspected me and said in her opinion I did not have lymphedema. But I learned many things from her and from reading. One thing that stuck with me was learning that lymphedema can arrive at any time after we have had the disturbance to lymph nodes, months or years later. I was happy not to have the condition, but sobered by the thought that it could pop up anytime. I was leary of airplane trips the first couple of times, because I was told that could affect any lymphedema one might have. I was talking to an elderly gentleman who had it suddenly pop up in his legs, he was quite miserable until a therapist came to him and treated him with massage and wrapping and gave him a lot of relief.
It is one of the reasons I have avoided having surgery on the partial rotator-cuff tear in my shoulder, I am worried about having a problem with that since it is on the right side, my mastectomy side. Sometimes I do feel my right arm is a little bigger than my left, but then I think it probably would be since one tends to use it more, being right-handed.
Was the lymphedema in your surgery-side arm or left? I noted you said the flu jab was in the left, would that have affected the right arm? I suppose anything is possible.
Talk to you soon, love,
Mary
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Hello Mary,
Thank you for your latest post. I do not know if you read my last post to Pam, but if you did not, have a read of it because I posted a lot of information there about lymphoedema as I thought those going through treatment and those newly diagnosed should know about lymphoedema and should ask about it before stating their treatment.
Yesterday afternoon I went to see my GP and she gave me a thorough examination after I had explained to her what was going on with my right arm. She had a good look at it and said, like me, and the nurse at Exmouth hospital she thought it was lymphoedema, since there was absolutely no pain and no inability to lift my arms etc. She went through the procedure of measuring my right arm at three different parts and compared these measurements to those of my left arm. The main difference was in the middle part of my lower arm between the wrist and the elbow. It was not a big difference but nevertheless noticeable. The good news was that there was big improvement in my upper arm since surgery and radiotherapy in 2006. She referred back to my notes and told me that on August 30th 2006 at the lymphoedema clinic in Exeter, there was a 20% difference between my upper right arm and the upper left arm. The difference is no just 10% so I must have been doing something right.
She checked all under my right arm pit and across my mastectomy area and said all seemed smooth and in order.
She further checked all my heartbeat and checked my oxygen level, which was 98% which she said was excellent.
She further said she thought it was a simple case of lymphoedema but it needed to be checked to make sure.
Because of the way the NHS works here, I had to go first to my GP and then through her she will get me a referral back into the system. I am not happy about this but I shall just have to do it. She is writing to my breast cancer consultant surgeon to explain what has happened and will arrange an appoint for me at her clinic. She thinks this will be to have an ultrasound scan to check things. By doing this I can get referred on to the lymphoedema clinic and take advice from there. I may have wear a compression sleeve for a while to get the arm back to normal. Apparently it will take two weeks for this referral to the breast cancer consultant to happen. This is all too slow, but that is the way the system is here.
In the meantime I shall carry on doing my own manual lymph massage that I remember from way back and that I have sometimes done anyway.
In the meantime, also, on Friday I have an appointment with a clinical and complementary therapist who works in the surgery where I go to see a podiatrist. I shall let you know what happens. As I told Pam, I phoned her on Saturday and got some helpful advice and information. She questioned me about the arm and told me it was good news the swelling was not in the upper part of the arm. She told me to keep everything cool and to look for signs of redness on the arm, as that could indicate cellulitis and I would need to go to A&E and get antibiotics administered. She also told me to keep my arm elevated.
I did know that lymphoedema could set in at any time, so I am just putting up with everything and hoping it will not now become chronic.
It just goes to show how damaged our bodies are after breast cancer treatment. I think that women should all be very vigilant about checking their breasts regularly and if they have any doubts about anything get it checked and get second opinions if necessary. I think they need to aim for the least treatment possible to get them through a cancer journey and into a state of no evidence of disease.
I think it is good if you do not need to have lymph nodes removed and if you do the fewer the better. My breast cancer consultant removed seven and only the first one, the sentinel node, was affected. Had I not delayed my treatment I might not have had node involvement. Once nodes are removed you have a damaged malfunctioning lymph system.
Radiotherapy also damages the lymph system because the radiation is centred on your breast and near your underarm. I noticed puffiness on my right hand sometime in August 2006 after I had finished all my treatment. At the lymphoedema clinic I was told I was borderline and had just two appointments.
I am trying to work out why this happened to me at this particular time. It was the flu jab that stood out as outside of my normal routine. I did not feel any bad effects about the jab. I phoned the pharmacist who gave me the injection to get her opinion. She did not think there was anything in it that would have a bad effect and I had the list of what went into the vaccine on a pamphlet that she gave to me. I asked her whether just having the jab could have sent my lymph system into overdrive. I had not had a flu injection since 2005 before I started all my treatment. The vaccine would have gone straight into action to create a load of antibodies. She said it was possible that the jab had affected my lymph system. My GP was not as convinced, but said never say never.
I shall keep you posted and hope you find all this information helpful. I am of course worried that it may be worse than lymphoedema.
Thank you for your information about lymphoedema and of your story about the elderly gentleman.
By the way, in a newly discovered magazine, entitled LymphLine, I read about someone who had a lot of her lymph nodes removed, with not pleasant consequences.
I also learned a few no-no's about an arm with lymphoedema. Do not take long distance plane journeys, do not wear any jewellery on your arm and do not do gardening! I do not know whether these still apply.
I shall write more about the magazine later.
Thinking of you.
Love.
Sylvia xxxx
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Hello, Sylvia! Hope it's okay to jump into this thread to invite you to join us at the LYMPHEDEMA forum here at breastcancer.org. Lots of wonderful gals there eager to help with questions about lymphoedema and to share their experiences with you.
Here's a lymphedema patient information website especially for those with breast cancer-related lymphedema:
http://www.stepup-speakout.org
Here's their page about what you can expect from lymphedema treatment:
http://www.stepup-speakout.org/treatments_for_lymp...
And here are some tips about what to do while you're waiting to see a therapist:
http://www.stepup-speakout.org/How_You_Can_Cope_wi...
Because a lymphedema diagnosis can be hard on our emotions and self-image, here's an article that has helped a lot of women cope with that:
http://www.stepup-speakout.org/patoconnorcopng.htm
And I'm not sure if you're in the UK or Canada, but here's a link to the Canadian Lymphedema Framework Program and their wonderful lymphedema magazine, "Pathways":
Wishing you great lymphedema care and guidance! Gentle hugs,
Binney0 -
A few more photos of life in India.
They really know how to pile into a vehicle!
This is one of the buildings along the river Ganges.
Sunrise at the "ghats" (the banks of the Ganges) - this was taken around 6am, many people in the river
praying, bathing, swimming, submersion, and yes, even washing clothes.
We had an early morning boat ride, just as the sun was rising. An unforgettable experience.
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Sylvia - my thoughts and prayers are most certainly with you as you deal with lymphodema of your arm. This must be quite a shock for you, but you seem to be handling it all very well and you are being proactive in getting touch with the right kind of people who can give you help and useful information.
I had read that lymphodema can appear up to 20 years after the treatments and I just could hardly believe that, but it seems like it may be the case.
I hope that you will find relief real soon. Try not to worry, although that is almost asking the impossible since our minds do often go to the darkest place.
We are back home safe and sound - just having to deal with the jet lag, but hopefully in a few days we will not experience the extreme tiredness that suddenly comes over us/
Take care of yourself.
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Hello Binney4,
Thank you so much for popping in to our thread and inviting me to join you at the Lymphoedema forum.
Thank you for giving me all those links about lymphoedema and I shall certainly work my way through them.
I do know quite a lot of information but there is always more to learn.
I live in the UK and I started my thread back in 2010 to help Brits because I thought we were in the dark ages over here. It turned out people from all different of the world joined the thread and it is still very active. Canadian women do come to the group and because I lied in Canada for 17 years, 1977 – 1993, I shall always have a special interest in Canada. We have adagio from Vancouver, BC, who is a long time and active poster.
Once again, many thanks.
Sylvia xxxx
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Hello adagio,
Thank you for the amazing photographs. It must be very strange being back in Canada. The truck full of people reminded me of similar scenes in Morocco. Washing clothes in the river was also familiar.
I shall keep you all posted about this lymphoedema and you are right our thoughts do go to dark places. I did know lymphoedema can come back and I am disappointed that I have to get back into the NHS system and wait for an appointment. Fortunately I know someone who is a clinical and complementary therapist, highly qualified in manual lymph drainage. I am just waiting for Friday 4 pm.
Take care and give yourself time to get over jet lag and cultural shock!
Sylvia xxxx
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Hello Pam,
I am just trying to answer the post in which you were talking about Christmas. I agree with you totally about it all. It is just a big commercial event now. I watch with dismay as the shops change everything around to put in all the Christmas "junk". We should have family get togethers when and as we want. As for presents, if we know the people well, books, music and magazine subscriptions might be safe.
I think it was a better time when children were excited to receive simple things like oranges or a bar of chocolate.
I think we all agree that only people that have had personal experience of cancer can understand what we go through. We go on our cancer journey, get through it, but the toxic effects of surgery, chemotherapy, radiotherapy and awful medications for some, but then we have to live for ever with thoughts of cancer and the damage to our bodies, like neuropathy, lymphoedema and goodness knows what else.
On Monday when I saw my GP she examined me and said my heart sounds healthy, my lungs are fine and I have 98% oxygen. It was nice to have some good news because you do not know all the damage that treatment has caused.
The book that you mentioned, One Year Off by David Elliot Cohen, sounds very interesting. My days seem to vanish and I cannot get to read all the books that I would like to. I certainly think that in the capitalist societies we have over-production and there is too much waste. We all need to moderate our consumption and get by with less.
That is all for now.
Love.
Sylvia xxxx
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Hello everyone,
I think I have finally caught up with the posts. Many thanks to all those strong posters who keep the thread going. Mary, adagio and Pam, thanks for the great effort these past few days.
To Kath in Australia, do you think my swollen arm had any connection with the flu jab that I had on the other arm?
Rhonda, Valstim, 4everStrong, Angie and Galway, I hope all is well with you.
Marias, we have not heard from you so I hope you are making good progress. Please pop in to let us know how things are going.
Lou, it is unusual for you not to be posting and I hope all is well.
To everyone, I hope you will all make the effort to read the lymphoedema links that Binney kindly posted. There is a lot of information. Read what you can. You never know when you may need it.
To those who have sent me private messages, I hope all is well or getting better if you have been struggling.
Thinking of you all.
Sylvia xxxx
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Sylvia,
I have read your latest post and the one to Pam. I will answer them in more detail later, it is a very busy week for me, with lots of meetings.
I am so sorry this has all come upon you, and I understand you being upset about it. I am upset about it, we are so used to having you console us, guide us and inform us along the way, it is distressing to find you distressed! But we are here for you as you are always here for us.
I read that you will see a therapist later this week, and the BC surgeon in about 2 weeks.
I will be back later, in the meantime, Binney has indeed left you a lot of information!
Adagio, your pics are fantastic, I am so glad you are enjoying it all so much.
Talk again soon, love,
Mary
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Hello Mary,
Thank you for your latest post. I do appreciate your kind words. We all know how important these words and this kind of support are. You are such a good friend.
I thought you might like to know that I discovered that there is a forum on bc.org entitled Biographies and Inspiring stories, so I clicked on it to have a look. I was surprised at the number of threads inside this forum under this heading. It was so overwhelming that I just could not go through it all.
I have noticed with many of the forums and threads that they can go dead for a year or more and then someone posts in as if the last post was hours ago! It is very confusing.
I do hope you will be able to get some time for yourself. I am hoping that I shall soon get some time to do some reading for my own leisure. It seems that every day there is something to do with the running of our apartment complex and keeping our own life up-to-date.
I am waiting for 4 pm tomorrow to see the private Clinical and Complementary therapist. I have an appointment to see my former breast cancer consultant at 10:30 am on October 31st. I am not looking forward to it as the NHS is in a bad way. I do get impatient with bureaucracy. I have already had to tell a secretary who was trying to make me accept an appointment with a consultant I do not know that I shall see only the one I know.
Hope to hear from you soon.
Love.
Sylvia xxxx
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hi Sylvia,
Swelling and enlarged lymph nodes are usually seen in the arm where youreceived the vaccine I've not heard of it in the other arm. It's interesting that it occurred after vaccination though so it might be good to discuss that with the consultant u see to see what they say. I'll do some digging at work and see if I can see anything similar
Cheers
Kat
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HI, Sylvia
I am going over your post of August 17 again, and trying not to miss anything. I see that your GP did a thorough examination of you and said she thought it was a case of "simple" lymphedema. She has referred you to BC surgeon for further evalutation and you are thinking you many have to wear a sleeve for a while to get the arm back to normal, since even though it is smaller than in 2006, it is still larger than the other one. You are going to carry on doing your own manual massage that helps the lymphatic system. My massage therapist is familiar with this type of massage and does it for some people, she has showed me how it is done, and it is a very light massage.
I am glad that your clinical therapist was able to help you with further advice and you are carrying out the instructions she has given you. I hope as you do that this condition will not become chronic since I am sure that you have been careful not to do things that aggravate the lymph system. I do know also that you help tend to the grounds of your apartment complex, and I noted your comment on the article you read in Lymphline, that we (people who have had nodes removed) should avoid gardening, long plane trips, and tight jewelry on the affected arm(s). Well, I do wear jewelry (bracelets) sometimes on my affected arm, but I despise tight jewelry, so am not worried about that one. I was worried about flying, but have flown several times since with no bad results yet, but perhaps I should take more precautions on long overseas flights. You have said you don't care to travel anymore, so will not have to be concerned about that. The gardening however; I think if we enjoy gentle gardening, we should be able to do so without so much concern. I am somewhat limited anyway, by my bad shoulder, so I do use my left arm a lot when pulling weeds and I do humor my right arm somewhat. I do not think we should have to give up everything that gives us pleasure as long as we remember the possible consequences and accommodate that. That's just my opinion however, I know that you will do what is right for you.
Breast cancer treatment is damaging, I know it has taken a long time for me to get back to where I am now, I didn't know how long it would take but I'm sure the people who treated me didn't exactly know either. I can only hope that the treatments they are working on perfecting now are efficient as well as much less damaging to our bodies.
I had 3 nodes removed, I have a friend who had 30 removed, she does not have lympedema, but from what I have read there is no rhyme or reason for whom it will affect. I see that you had a puffy hand after radiation, I did not know that radiation could worsen lymphedema.
I am sure your very curious mind is trying to work out why this has happened to you now, and I do hope you will get some answers. It can help the rest of us too!
I am not sure what you mean when you say you are concerned that "this may be something worse than lymphedema."
I did go to the site called "Biographies and Inspiring Stories." You are right, it is another very large site! I think we are lucky to have this website, it is wonderful. I did give them a donation last year, and will do so again this year, it is so very valuable to so many.
My very busy week is coming to an end, I do have to drive a lady to the airport this morning, she was with us all week for all the meetings and dinners, and then my time will be my own somewhat, for a little while! I hope you get time to do some reading, things do get piled up.
You should be seeing your private Clinical and Complementary therapist about now if I am figuring the time difference correctly. I know you will let us know what happens from that.
(Continued)
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Syvia, this is continued from above, I didn't want to lose it!
I understand that you are impatient with the bureaucracy of the NHS. I am on our Medicare system now, since I turned 65. I also have to have a supplemental insurance policy and one for prescription medication. I have to pay for all this, it is definitely not free! But they have had problems with cancelling my old policy, and the last time I called Medicare they said they had done everything right and they referred me to another department with a very long unintelligible name. Turns out that somewhere in that department my old policy had not been cancelled, so everything was still going to the old policy, and of course, getting declined! I think I have it straightened out now, we will see! I also just got a letter saying that they have made a determination that I owe still more money every month. Never mind that my husband put money into that fund for his entire working life, as did I. He is gone now, and will get none of it back. I am getting a fraction of it every month, and am supposed to feel that I am getting a handout! It is the system we have, far from perfect, but we do get to see doctors rather quickly, unless one needs to see a good neurologist or dermatologist. The wait is long for these specialists.
I hope you get some good news, my friend.
I will talk to you soon,
Love, Mary
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Hello Silvia and all of you. I finally finish my radiotherapy sessions on Tuesday. My breast is more that red is purple. I have a lot of pain. The doctor radiotherapy says is normal for two weeks.
On Wednesday I had the surgery of my ovaries they took out both of them and one myoma of the uterus and a pollicis of the cervix.
I'm home.now getting better. I hope I can read yours last posts and now more about what happen to all of you this days.
Abrazos
Marias
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Hi Sylvia
I did some ringing around yesterday at work and spoke to a few of the adverse events report lines that we use. There have been some notifications of lymphadenopathy after flu vaccine but normally in the affected side. They did say that it is difficult to say especially if there has been a bilateral mastectomy however given that. U developed lymphadenopathy within 48 hours after vaccination it could be the reason and shouldn't be ruled out. The vaccine is new every year and sometimes the reagents are a little different. If it occurred here given the time frame I would be asked to report as a vaccine reaction. Im betting that's what it is? Hope u are feeling better soon. Think of u!
Cheers
Kat
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Hello everyone. I hope you are looking forward to a great weekend.
sylviaexmouthuk, just wanted to post an update. I found out today that that both my SNL biopsy report and Bone Scan report are totally clear of signs of metastases, but the Bone Scan does show osteoarthritis in the spine, shoulders, elbows, wrists, hips, knees and feet. I knew about the spine; in 2008 I was told I had OA in the neck and at the bottom of my spine; now it has spread further into the spine, and I had no idea it could spread so much. I do know that there was no OA in the knees in 2008 because I was x-rayed for that. So, I feel like I've been handed a double whammy.
Yesterday, I had a call from the my nurse navigator and the CT Department had booked my Abdominal Scan for November 17th. She said that was unacceptable and, I don't know how she did it, but it has now been moved up to this coming Monday, and hopefully I will have the results by the end of next week. I see the surgeon on November 1st, and the next step will be Cancer Care.
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Hello Marias,
I was so glad to hear from you and I am sure Mary will be glad to see you on the thread as well. We have both been wondering how you were getting on. You must be very relieved to have finished your radiotherapy. I would not have thought that your breast should be discoloured, either red or purple, but I am not a doctor. Do you think this is from burning from the radiotherapy or somehow a general bruising from all the cancer treatment. I hope someone viewing who had a lumpectomy, will post in to say what their breast looked like after radiotherapy. I had a mastectomy and through my radiotherapy I had no discolouring over the area where my breast had been.
I had no pain either and I would not have thought that you should be in pain, but, again, I am not a doctor. I hope someone will post to say whether they had pain.
I do hope the pain and the discolouring will go away soon, and that it does not last for two weeks.
You are really going through a lot and I cannot believe that you have gone straight from finishing radiotherapy and its side effects on you, to surgery the next day.
How long were you in the hospital? Did you just stay overnight? You mentioned myoma and that you had one removed. I think the common name for this is a fibroid and they are quite common in the uterus. They are non-malignant.
What exactly is a "pollicis" of the cervix?
I was glad to know that you are back home and getting better. Take care of yourself and do not overdo things.
Do you have an appointment to check on how things are going?
What is happening about your thyroid problem?
I do hope you will be able to catch up on the posts. It is useful to keep up-to-date because like that you do not miss out on important information that may be helpful to you.
Thinking of you.
Abrazos.
Sylvia
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Hello Kath,
Thank you for your post. Thank you so much for looking into possible adverse events reports that you use. Of course, I was very interested in what you said about notifications of lymphadenopathy after flu vaccines.
You said that this lymphadenopathy is normally on the affected side. Do you mean that the lymphadenopathy usually occurs on the arm that has had the flu injection? This was not what happened with me. As you probably know, a cancer patient can never have injections into the arm where they have had surgery. They cannot have blood taken on the surgery side or blood pressure. I always have every thing done on my left arm.
I had no visible side effects on my left arm and not really any other side effects.
I did not have a bilateral mastectomy so that does not apply to me either. I did have a neighbour who had had a bilateral mastectomy and she told me she had to have all injections in her foot and that it was very painful.
In my own case, I thought that the swelling in my lower right arm may have been caused from straining it with a vacuum cleaner that I was finding too heavy (I have now changed it), or the flu jab. The pharmacist who did the injection did say it was possible that the injection had started something off. She said that my body would be low in anti-bodies because I had not had a fly jab since 2005 and that was before I started any breast cancer treatment. I think it is possible it somehow sent my impaired lymph system on the right side into overdrive and the lymph built up because it had nowhere to go.
I do know that the strains I had were A H1N1 (swine), A H3N2 (I do not know what that is) and B Brisbane. Of course there were other things in the injection, such as calcium chloride. I have read in a magazine that these injections do have heavy metals in them.
I am going to try to find a way of reporting this as a possible reaction to the flu injection.
My GP has not stated categorically that the lymphoedema has not been caused by the flu injection.
Yesterday I saw a private lymphoedema specialist who also said she thought is was possible that the flu injection had caused something to happen.
I shall write more about this visit later.
I feel fine. I just want this swelling to go away.
I do hope you are feeling better and are having more positive days than negative ones. You are certainly doing a very interesting job.
Fond thoughts.
Sylvia xxxx
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Hello 53nancy and Mary,
Thank you for your posts. I shall be answering later today when I have taken a break. I have to keep my arm elevated as much as possible, so I have to take breaks.
Nancy, on behalf of the group, I would like to say welcome.
Fond thoughts.
Sylvia xxxx
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Hello 53nancy,
It is good news that your sentinel lymph node biopsy is clear as well as your bone scan report.
I was sorry to read that you have so much osteoarthritis throughout your body. Have you had any explanation from your doctors about what has caused this and why it has spread so much? How is this being treated and are you in a lot of pain?
Let us know how you get on when you have your abdominal scan on Monday October 23rd. It is good that this date is close and you do not have to wait until November.
I hope everything gets sorted out on November 1st with the surgeon and that you will be able to start your cancer treatment.
I was reading your details and was puzzled about why you had a lumpectomy before you had the diagnosis. Am I missing something?
I think, if I were going through treatment today, and had a small tumour, I would be asking what is the minimal treatment I can go through in order to get a pathology report that says NED, no evidence of disease. There seems to be so many long term side effects from cancer treatment, such as neuropathy in the hands or feet, lymphoedema and osteoporosis.
I have recently learned that you can get lymphoedema from any surgery and not just surgery with lymph nodes removed. I also learned that lymphoedema can occur years after treatment and I do not like the sound of how it is treated.
I do wish you well and hope you will stay with us.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I have been learning a lot about lymphoedema and had a good discussion with the lymphoedema specialist I saw privately yesterday. Apparently there are two kinds of lymphoedema. One is primary lymphoedema and is usually determined from birth and may be due to underdevelopment of the lymphatic system. It can also affect infants, children, men and women of any age and can run in families.
Secondary lymphoedema occurs when the lymphatic system is damaged or overloaded. This lymphoedema can happen as a result of cancer treatment and it is not necessary caused by only removal of lymph nodes in cancer treatment. It can happen after any kind of surgery and it can happen after radiotherapy. It is not that radiotherapy worsens it, it can apparently cause it. It can also occur after infections, burns, severe injury or other trauma and as a consequence of having varicose veins. Lymph nodes are in different places in the body, so you can get swelling in different places.
It is quite depressing to know that having gone through all the ups and downs of cancer treatment, patients may at any time have to deal with lymphoedema.
The treatment of lymphoedema is based on four specific areas, skin care, exercise, lymphatic drainage and external compression.
Patients need to keep the skin and tissues in good condition and must try to prevent or reduce the risk of infection. Infection can produce cellulitis which is serious and needs prompt antibiotic treatment.
As far as exercise is concerned, you need to try to maximise lymph drainage without over exertion. You need to improve the movement of the swollen limb.
You need to do lymphatic drainage. This involves a gentle massage technique, involving simple hand movements to help move the fluid out of the affected area. I think a lot of us are familiar with this technique. I just called it manual lymphatic massage. There is a difference between simple lymphatic drainage, SLD, and manual lymphatic drainage, MLD, carried out by trained practitioners. I had some of the MLD yesterday.
The other treatment is external compression and this forms the basis of lymphoedema treatment. Most patients will be given some form of compression garment, device or bandage, to help maintain/control and improve lymphoedema.
All this can be quite taxing and emotional support is very important.
Yesterday at that first appointment, I had to provide a lot of information about my cancer journey, my general state of health, so that took up quite a lot of time.
I was asked what I wanted to achieve with this swelling of the lower limb. I said that, just like my breast cancer treatment, I did not want it to take over my life and that I wanted to carry on as normal. I would like the swelling to disappear through a natural process if possible.
I was asked what my gut feeling was about why this had suddenly happened. I said I had two feelings, one was over-exertion with a vacuum that was too heavy for me, or the flu vaccine that I had 48 hours before and that it was the first flu jab I had had since before I started my cancer treatment back in 2005. She told me that both were possible. This is what I had from my GP and the pharmacist who delivered the jab. I asked Kath what she thought, so have a look at her posts to me.
As for the no nos, I have gardened ever since I was diagnosed and have not had any cuts or bites that might cause trouble. As you know, I do not fly anywhere and have not done so since 1993 when we came back from Canada. I do not wear any jewellery except a wedding ring on my left hand.
I have always taken care of my right arm and kept is exercised and massaged in the way I was shown all those years ago.
I think that new patients have to ask more and more questions and see what the minimal treatment is that they can have to bring them into a pathology report which says no evidence of disease. I asked many questions and the consultants thought it odd. They said patients usually did not want to know anything and just wanted to get on with the treatment. No one ever mentioned neuropathy, lymphoedema, osteoporosis until I actually asked about these things in due course and then I was told it was all to do with the treatment.
As far as my treatment goes, I finished everything about mid-July. It was after all this that I noticed a little puffiness in my right hand. At the end of August I got an appointment with the lymphoedema clinic at the hospital where I went through treatment. The nurse did all the measuring and said that according to the numbers they used to diagnose lymphoedema, I was borderline and would not need to come regularly. She showed me how to do the manual lymph massage, measured me for a compression sleeve and I returned to pick that up on a second appointment. I did not return, decided not to wear the tight compression sleeve and the puffiness in the hand quickly disappeared.
I am now mulling over what to think about my appointment yesterday. I did have something that is called Hivamat Therapy/Massage. I shall explain this in another post. Do you know about it and what do you think?
I hope you are managing to have a relaxing weekend after a busy week. Are you a member of different organisations, church, political or others, that keep you busy?
I cannot make up my mind whether to join the Lymphoedema Support Network. As we both know, there is so much information overload.
I am trying to read a novel by a very Spanish writer, whom I think is one of the best writers. I want to read it English and with the Spanish version at the same time! His name is Javier Marias and the title in English is Thus Bad Begins. He writes very profound books with very long sentences. The Spanish title is Asi Empieza Lo Malo, published 2014, English version 2017.
I have also three French language magazines to read and a newsletter and directors' meeting to prepare for at our apartment complex!
I shall answer the other post later.
Love.
Sylvia xxxx
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hi Sylvia
I'll keep digging and would be interested to know the outcome. Yep I meant that reactions are usually on the side the vaccine was given and people with bilateral mastectomies are usually given the vaccine in their thigh which is a lot less painful than the foot ha ha.
The vaccine we use covers for flu a and flu b as well as h1 n1 and this years strain which was as u said the Brisbane strain. It is called a quadravakent vaccine and different pharmaceutical companies use different reagents to bind it but no heavy metal are used any more. Hope u are feeling better soon.
I have started yoga and exercise which is helping with my muscle an bone ache but I still worry that it is something else. I have no problems with movement however and I have had osteo arthritis for years. I keep putting one foot in front of the other and I am have some good days now but the dark ones are still really hard. I hope u are feeling better soon
Cheers
Kath
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Hello Silvia, like always thanks for your support words.
I find this articule in spanish where show picture of breast with dermatitis
http://www.medigraphic.com/pdfs/derrevmex/rmd-2012...
is like that what I have.
The "polyps in the cervix" I find this in english. I didnot know I have. Since 20 years I dont take a transvaginal ultrasound so when the doctor were take out the ovaries they saw the polyps and the myoma. I when to the hospital at 5:45 am and went out at 1:00 pm.
Every year I took the cytology and never tell me about the polyps.
Well I still be with pain in my breast.
Abrazos
Marias
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Hello Mary,
Thank you for your second post of October 20th. I certainly do not envy you all that hassle with the health system.
I think here the NHS which is a system brought in in 1948, is still trying to carry on as if we were the same country with the same population. It is definitely underfunded, understaffed and I think probably overused unnecessarily by the population. We also have an ageing population who are treated with too many pills!
I am not really looking forward to having to go back into the system. I have already had three letters for one appointment! The first one just made an appointment with not the consultant I had requested. A phone call came about this and I had to point out that I did not want to see that consultant. She made me an appointment on the phone with the consultant who treated me before. A letter came confirming that appointment. The next day another letter came stating that the time of the appointment had been changed. I am now going October 31st at 10:10 am. I am having to do this to get to the lymphoedema clinic. They will measure my arm etc., tell me I need a compression sleeve, made to measure, and so that will have to be ordered. In the meantime, I just have to hope that the lymphoedema stays stable.
With the private lymphoedema specialist she did that massage on the special machine, but still wanted to bandage everything up. I said no. I am doing my own massage and am continuing as if everything is normal.
That is about all for today. It is a very windy day.
Love.
Sylvia xxxx
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