Calling all triple negative breast cancer patients in the UK
Comments
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Hello Pam,
Thank you for your post. I was sorry to read that you found a lump/node in your neck and that you are having to have a CT scan. It is such a long time since I had a CT scan, before and after my treatment that I cannot remember exactly what I had to do. Is drinking iodine water standard?
I do not like these scans and have decided that whatever happens I am not going to have them. Before and after treatment I also had a bone nuclide scan, which makes a patient radioactive, so I am not going to have those either.
I cannot understand why patients are being subjected to radiation when it is well known that it causes cancer!
I have never had an MRI scan and I do not intend to have one ever.
I do hope all goes well for you.
It seems to me that after the worry of this you will need another weekend at that yoga retreat.
I am not looking forward to Tuesday October 31st when I see the breast cancer consultant in her clinic and all I want is perhaps an ultrasound on my right arm to diagnose lymphoedema and a quick referral to the lymphoedema clinic. I know that with the NHS it is all probably going to be slow. Sometimes I think I shall just leave my arm to heal itself and just do the manual lymph massage we are all told to do.
Sending you fondest wishes.
Sylvia xxxx
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Hello adagio,
I am just popping in to say that I still have some information about lymphoedema, the exercises, that I want to post, but I shall have to do it tomorrow now.
I shall be glad when next week is over. Thank you for keeping the posts going.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I have just looked at the posts and noticed that we have not heard from you since about October 23rd.
Have you had another busy week? Do you think we are all getting too busy?
adagio mentioned something your having a check up.
I do hope all is fine.
Love.
Sylvia xxxx
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Hello Kath in Australia,
I have been looking at the actual piece of paper that was in the flu injection package.
Under Other ingredients this is what it stated: sodium chloride, potassium chloride, potassium dihydrogen phosphate, disodium phosphate dihydrate, magnesium chloride hexahydrate, calcium chloride dihydrate, water for injections.
The name of the drug is Agrippal.
What Agrippal contains: the active substances are:
influenza virus surface antigens (haemagglutinin and neuraminidase) of the following strains:
A/Michigan/45/2015(H1N1) pdm 09-like strain (A/Singapore/GP1908/2015, IVR-180)
A/Hong Kong/4801/2014(H3N2) – like strain (A/Hong Kong/4801/2014, NYMCX-263B)
B/Brisbane/60/2008-like strain(B/Brisbane/60/2008, wild type)
Have you any comments on this?
I do wish I had never had this flu injection.
Raymond and I had this injection done by a pharmacist in peace and quiet. We were given the leaflet from the box and a very important leaflet entitled After your flu jab.
It was all perfect.
Today we received letters from the Practice Manager of our GP surgery, not happy that we did not go to one of their crowded clinics to get the flu jab. This letter was not acceptable, especially as we are being told to go to our pharmacist to off-load work from the GPs. The sound of the letter was naughty, naughty, slap on the wrist!!!
I do hope things are ticking along nicely for you.
Fond thoughts.
Sylvia xxxx
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Hello to Valstim52, Rhonda, Lou, 4everStrong, Angie and Galway. We have not heard from you in a while and we hope all is well.
Hello, also, to Hanieh, Gina, Breastcancerhusband Tom, and Michael in Northern Ireland (Chatterbox). We hope you are all well and will perhaps pop in sometime for old times sake.
Keep smiling everybody.
Best wishes.
Sylvia xxxx
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Hi, Adagio
Thanks for asking about my oncologist visit. It was my regular 6-month visit, the nurse bustled in and out and asked me questions so she can fill in the MO before she comes in, I suppose so the MO doesn't waste her time by asking me the same questions. And if I have questions I ask the nurse and she asks the doc and then the doc answers when she comes in. The MO comes in and responds to the questions, chats for a minute, and then she feels my breast and underarms and neck, it's all pretty quick. She said she would order an MRI in 6 months because I always tell her I don't have a lot of faith in mammograms. She is not in there very long, if you don't spit out what you want to say it's all over fast! Anyway, that's how this visit went, I guess I should be glad it's uneventful! She does not order any scans unless I am in pain. She does not order blood tests unless something is in question, she prefers my GP do those tests.
Your idea that I keep things in balance when I am busy is not quite right, I wish it were that way. I usually fall in with whatever is going on and then get back into my routine as soon as possible. The week before last I was only home long enough to sleep, so my routine was out. Then we had a drastic weather change with ups and downs for the next week, and it was all enough to get my aches and pains and sinus miseries flaring up. I am better now I think!
You probably have good methods of keeping to routine, having been on your long trips to Australia and India was a good test of that! Do you have more trips on the horizon? I need to set up something good for the spring, I like having a nice excursion looking forward.
Talk to you soon, Adagio, hope you are feeling great!
Love, Mary
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Hello Mary,
It was nice to see you back on the thread.
At long last I can post the information that I found in Focus magazine (a BBC publication), by Odysseus Ray Lopez, US, entitled How does radiation kill cancer if it causes cancer? The article states that this is rather like the way guns can be used to commit crime or stop it.
"Radiation causes cancer because its high-energy photons can cause breaks in the DNA strands in your cells. Cells can repair this damage up to a point, but sometimes the repair is not perfect and leaves some genes defective. If the break affects one of the many tumour-suppressing genes in your DNA, that cell can become cancerous, but cancer cells are also more vulnerable to radiation than ordinary cells. Part of what makes them cancer cells is their ability to divide rapidly and this normally means that some of the DNA 'spellcheck' mechanisms are turned off, so when a cancer cell suffers a break in a DNA strand, it is less likely to repair it correctly. Depending where the break occurs, it might either kill the cell outright, or make it reproduce more slowly. Radiation therapy uses a focussed beam that is aimed at just the part of the body with the tumour, and the dose is carefully calculated to cause the minimum collateral damage to healthy cells. Even so, radiation therapy does very slightly increase your chances of developing a send cancer."
At the top of this article there is a photograph that shows a patient undergoing radiotherapy of the head or neck wearing a custom-built face mask that is fixed to the operating table to hold their head steady. In my opinion it is not something very nice to look at.
I actually saw one of those masks because my friend and neighbour, who died just over two years ago, showed me one that she had had to use when undergoing radiotherapy for metastatic triple positive breast cancer.
As you can see, neither chemotherapy nor radiotherapy is a 100% treatment for cancer. We have already discussed how with chemotherapy the body has to be flooded with toxic drugs in the hope that some of it will kill off the cancer cells.
I believe that this should not be the future treatment for cancer. There has to be another way.
I hope all is well with you, Mary. I am not looking forward to next week. Tomorrow is the 41st wedding anniversary of Raymond and me. It falls on October 30th which is also the 22nd anniversary of my brother's funeral from metastatic cancer, primary unknown. It just happened that the funeral was that day. October 31st ten minutes past ten I shall be back in the breast cancer clinic to see my former breast cancer consultant about the lymphoedema in the lower part of my arm.
I hope you have a good week.
Love.
Sylvia xxxx
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Hello adagio,
This is a simple list of the exercises that I was advised to do, either by the lymphoedema nurse at the hospital way back in 2006, or some suggested by the private lymphoedema therapist recently or at a physiotherapy session also back in 2006. I have also read bits in magazines.
1. Manual lymph massage. This seems to be the standard advice at the hospital.
2. Keep the impaired arm elevated on pillows when sitting, when lying in bed or when sitting in a car. It is bad for the arm to be hanging down by your side.
3. Keep the arm moving. Do all sorts of exercises that raise your arms up and open and close your fists at the same time.
4. Thrust your arms out with your fists closed as if you are doing boxing punches.
5. Breathing from the abdomen. Breathe in and then breathe out while holding your abdomen and feeling it move as you breathe.
6. Hold your impaired arm out with your hand turned palm up. Put your other hand over the elbow joint and raise your hand to touch your shoulder. (I found this difficult to do unless I just put all my fingers on the elbow joint instead of the hand).
Do you have any other exercises?
Reading through lots of information, it seems that exercises will help but I do not know whether they can cure the swelling permanently.
The standard treatment seems to be bandaging or compression sleeve. I just wonder how much of this you need and whether the swelling will come back once they are removed.
What do you think?
I hope you have had a good weekend.
Love.
Sylvia xxxx
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Hi, Sylvia
I am okay, it was another busy week. I do not mind being busy if it is not just being busy with doctors! It seems that suddenly many of us here are busy with doc appointments. Pam is waiting to have a CT scan on lymph node, Marias is going through another surgery, you are dealing with your lymphedema. 53nancy is meeting with her MO Monday. I am a little worried about Rhonda, the last time I remember hearing from her she was going to another hospital to have more tests, and sounded quite down about it. I think Lou is staying very busy with family and traveling, I do hope Valstim is okay, and also Angie, Galway and 4everstrong in Paris. It would be nice to have a pop-in visit from the long-absent ones, but perhaps they have decided to put it all in the rear-view mirror and move on.
I suppose we can be too busy, but that's life, and we want to live life and that's why we fight for it. The disconcerting part is how fast it is all going by, I swear the world is spinning faster!
My check-up was my regular 6-month checkup with the MO. I had a mammogram 2 weeks ago that was normal, she ordered an MRI in 6 months because I don't trust mammogram results and I have dense breasts. My acupuncture doc told me an MRI is a very safe test, no radiation involved. He also said too many CT scans are not good, too much radiation concentrated. Fortunately they are very fast, I have had a couple of them in the past. If you ever need a test, the MRI is the safest, also the most expensive unfortunately.
I am also still having problems with the "system" of Medicare, seems to me there is no system. When I call them, I am told everything is in order, then I get another letter from them saying things are not in order! Monday I will have to call again, and be shuffled around the bureaucracy again. Frustrating! I got another such chiding letter 2 days ago, sigh.
I understand you wish you had never had the flu jab; as I wish I had never thought I needed to be doing elaborate exercises which only "woke up" the arthritis in my knees. As the song goes, "Regrets, I have a few......"
Hope you have a good trip to the clinic Tuesday, and you can get this lymphedema into the rearview mirror!
Talk to you soon, Sylvia
Love, Mary
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Hello Mary,
Thank you for your post. I shall get back to you after I have been to the clinic on Tuesday. Have a good week. Like you, I find the days going too fast and I do not have enough leisure time. I have a silly letter from my GP surgery about not getting my flu injection at their manic clinics! The letter is from the Practice Manager and it openly admits that they are doing the flu injections to get money! That can only be from the drug companies. I shall enjoy answering that letter, as I am fed up to the teeth with inane bureaucracy.
I love that song about I did it my way. I have a few regrets and not too few to forget. I think we all need two lives!
Talk soon.
Love.
Sylvia xxxx
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hi everyone
Sorry I've been mia. Has been a very busy month. Had a family wedding, and traditionally Indian weddings are three weeks long, and family from England stay with us during this time. It was nice, but am happy to have my space again.
I've finished chemo a month ago, and am waiting to start radiation. Believe it ior not I am still dealing with my open wound. After much persuading my wound doc finally put me back on a vac. It's definitely healing now. Maybe two more weeks to heal....
I'm still trying to catch up on the thread will post more once I'm all caught up.
Much love to all
Angie
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Hi, Sylvia
I am responding to your post on the article about radiation therapy, I didn't really know how it worked before so that was informative. So "Radiation can cause breaks in the DNA strands in your cells." That makes it die or grow back very slowly. So with all the technology we have now, it still sounds like an inexact science, they are not sure if it will cause these breaks, and if it does, they are not sure if the tumor cell will die or just grow more slowly, is what I gather. Like chemo therapy, we are just using it and hoping it will work because it's all we have.
I didn't have radiation after chemo, at the time I was given a choice and I was so run down from the chemo and was suffering so much arm and shoulder pain already that I said no. I am neither glad or sad about the choice, at the time I didn't feel I had a choice, I was so miserable. That was a strange time; you can imagine my reaction when my new MO walked in at my first post-chemo visit (because my original MO retired), and told me that I had not done enough Taxotere and would have to resume treatment! I think I was almost hysterical, and I was positive I had done the regimen that the first MO had prescribed. She and the nurse left the room, and the nurse came back and told me that after reviewing my chart, I had indeed done all the Taxotere ordered for me. What a circus! In hindsight, I think it was very possible that my first MO cut off some of the Taxotere dose because of all the side effects I was having, the new doc had no idea what was going on till she actually looked at my chart. Which I would have hoped she would have done before she saw me, but didn't.
I will hear from you after your appointment about the lymphedema, I just noticed that we both posted at about the same time, and I hadn't seen your post on radiation at the time.
On a happier note, Happy 41st Anniversary to you and Raymond, I am so happy that you have had all these good years together, it seems that he is a great partner for you. Wishing you many more years together!
Love, Mary
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Hi, Angie
Good to hear from you, I see you have been very busy with a family wedding, you must be quite tired out having all that right after finishing chemo. Oddly enough, I was in Connecticut about a month ago for a family wedding, we were there 4 days and it was quite a large wedding. I'm sure my SIL and her husband were very glad when it was all over, but they did a fabulous job of pulling off the whole thing. I was possibly not very far from you in MA.
I am glad you have finished chemo in good shape, and see you are moving on to radiation therapy. Sylvia's post above explains how all that works. Good luck with the treatment. It is hard to believe you still are dealing with the open wound, it is a good thing that it's finally healing. Do you know why that happened, that it didn't heal properly?
Enjoy your space, and get some rest! I will talk to you again soon,
Love, Mary
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hi
Sylvia those reagents are quite common and in very small doses which shouldn’t cause a great deal of problems. We also use a quadravalent vaccine which is very similar. A trivalent vaccine is used in the states which apparently has been proven to be effective.
I tend to agree with the pharmacist in say that the vaccine may have woken up ur immune system to respond in that way and it affected the lymphatic drainage in ur affected arm which is quite rare.
If the vaccine did cause it the problems then fingers crossed it will be temporary and exercises and massage will help it greatly. I definitely think that the vaccine is probably the cause given the 48 hour time frame. Here’s hoping it settles quickly and given ur good state of health I’m sure that will be the case. I’m in Melbourne seeing my grandchildren this weekend then off to Sydney for the state tb and communicable disease conferences the week after where there are lots of pharmaceutical reps and nsw health people so I will definite put the word out to see what I can find out and keep u posted.
I have been slowly building up strength with yoga and the gym and my aches and pains are feeling a little better. I still have quite severe neuropathy in my feet and hands. I have some good days but still a lot of dark ones so I’m try to be logical when I get them.
I had a panic attack the other day when I felt a small lump on the inside of my arm with my fingers not the flat of my hand just below my auxilia . I know I had it when I started chemo and my onco has checked it before and said it was fine but I had forgotten about it do what was the first thing I did?? Panic!!! I need to stop and breathe and think logically but it’s sooo hard!
Hope everyone is well and taking one day at a time?
Cheers
Kath
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Update! I saw the oncologist yesterday and ALL tests have come back negative for cancer, so I have chosen NOT to do chemo. I have decided to do the radiation, not because I really want to, but because it makes sense that if there is a possiblity of stray cells in the breast, to treat it without affect the whole body. Most people are not in agreement with my decision, and perhaps the radiation is also a compromise for them, but the oncologist will have a teleservice meeting with me in January and I return to see her in April. She asked me if I would leave the door open for chemo, and I said yes. I got a call today that I go to see the radiation team tomorrow, so things are moving along. I hope things are going better for all of you.
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Dear Sylvia,
Thank you for your message, yes my sister is now 2 weeks post surgery, so she has her follow up appointment with the breast surgeon today, she may need some draining as she has a swelling (which she describes as the size of a tangerine) on her left side, a collection of fluid I think, which may be drained today. She is taking things easy, which is difficult for her as she is prefers to keep busy. She said that there is usually a 6 week gap between surgery and radiotherapy, so she is not sure if she will be able to complete radiotherapy before Christmas. But she is concentrating on resting for now, as she has quite a lot of discomfort at the moment from the double mastectomy and lymph node removal. I really need to catch up on the thread properly, I feel completely out of touch and plan to catch up on the thread this evening, I really hope that you have a good day too,
Love Kathy xxx
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Hello Angie,
Thank you for your post. I can understand how you feel about having your space again. You must be glad to have finished chemotherapy.
Let us know when you start radiotherapy.
I hope you manage to catch up on the thread.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your posts. Like you I found the radiation information very interesting.
I went for my appointment at the hospital in Exeter where I had all my treatment. I was seen very promptly by my breast cancer consultant surgeon. I really respect her. She did a thorough examination under my right arm and told me all was clear and well with my lymph nodes and that what I had was indeed lymphoedema. All that was a huge relief. She told me to continue doing my own gentle manual lymph massage until I got the appointment at the lymphoedema clinic, which is part of the hospital. She sent me to get an ultrasound scan and this was concentrated again under the right arm. Everything was clear and in order. It was a long day at the hospital and I still feel very tired from it all. It was strange being back where I had all my treatment but everywhere seemed so much busier. There seemed to be so many youngish women having ultrasounds and mammograms. I declined to have a mammogram.
My breast cancer consultant told me that I did not have to wear the compression sleeve when I get it if I do not want to, but she said it might be useful to do my usual massage and then wear the sleeve for a while to help get the swelling down.
She said it should all heal by itself gradually.
I mentioned about the vacuum cleaner and the flu jab and she said it was quite possibly a reaction to a bit of both that had caused the lymphoedema after all these years.
She told me the usual things, treat the right arm very gently, vacuum with the other arm if possible, be careful in the garden, wear gloves and beware of bites and scratches etc., not to lift heavy weights, vigilance on flights and so on.
I am very lucky to have Raymond and cannot imagine life without him.
That is all for now.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your post. It is so useful to have you on our thread.
I was interested to know that you are in Melbourne seeing your grandchildren and that you are then off to Sydney for what seems to be a most interesting conference. What interesting work you do. Please keep us updated on anything you find of interest.
I was glad to know that you are making progress. Everything will get better as time goes on.
I think we are all very much more aware of our bodies after cancer than before. I think we all start to panic about things that perhaps before we would not have noticed much. It is always good to get things checked out.
Keep up the good work.
Love.
Sylvia xxxx
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Hello 53nancy,
It is good to know that all your tests have come back clear and that you have made the decision not to have chemotherapy. This will make your cancer journey so much shorter and probably so much easier. You will not have all the possible side effects.
I do hope you will soon get your radiotherapy and that it will take care of any possible stray cancer cells. Remember, that radiotherapy does have side effects and you should ask your consultant to spell them out for you, how to prevent them if possible, and what to do for the best possible result and the fewest problems.
Keep us posted.
Fond thoughts.
Sylvia xxxx
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Hello Kathy,
Thank you for keeping in touch and I was glad to know that your sister continues to recover slowly.
She has been through a big trauma with a double mastectomy so she must give herself time to recover and get back her strength. If that were me, I would make sure I feel completely recovered and strong enough to go through radiotherapy. How many weeks of this will she have? It can be very tiring because you have to go for treatment five days a week with a rest at the weekend and then back again to start another week. She will probably have an appointment to be mapped out with pinpoints on a prototype radiotherapy machine, so that the area to receive the treatment is clearly visible. She should ask advice about skin care and any other information that they have to make her treatment easier.
Thinking of you and your sister.
Sending fond thoughts.
Sylvia xxxx
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Hello everyone,
I just wanted to say hello and thank you all for making this thread interesting and informative.
Best wishes to adagio, Pam, Val, Rhonda, Lou, Marias, 4everStrong, and Galway. Please do not be shy about popping in and sharing anythong you want with us.
Best wishes.
Sylvia xxxx
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HI, 53Nancy
I see you have come to a decision about chemotherapy. I looked at your stats at see that you were diagnosed with DICS (ductual carcinoma in situ), meaning it hasn't traveled outside the breast. That is great diagnosis, if one has to have a BC diagnosis! My DIL and 2 other women I know were diagnosed with this within the last 6 months. They were told they did not need chemotherapy because they had the E+P-H- type of BC, and they were put on the estrogen-inhibiting oral meds instead after having mastectomy/lumpectomy. The TN diagnosis you have means that chemo is all they have to give you, but it is definitely not a sure thing, and hard to take sometimes.
I see you have an appt. with the radiation team, time to learn all about that! Let us know how that goes, Good luck with everything.
Talk to you later, Mary
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HI, Sylvia
Thanks for posting all the info about your consultation with the BC consultant surgeon. It sounds very promising, especially the 4th paragraph where you are told that it should all heal by itself gradually. I don't think I had heard lymphedema referred to like that before, I thought one either had it or didn't. It also makes me wonder about the flu injection, since you had it in the unaffected arm. I wonder what would have happened if you would have had it in the affected arm?
I don't think I was told about lifing heavy weights (I still don't because of injured shoulder), or vigorous exertion, (I am guilty of that at times, and I pay for it with a lot of pain), I only remember being told about not having the needle sticks or the blood pressure cuffs on the right arm. It all makes me wonder about my shoulder and all its' problems, perhaps being forced into limited activity in that limb has been beneficial for me regarding lymphedema, it's all quite vague. For all I know, I may have a bit of lymphedema myself.
Housework is difficult for me, I started having a girl come in and do it while I was on chemo, and I have kept up with that practice. She comes every few weeks or monthly, and does the things like vacuuming, window cleaning, dusting and I do touch-ups in between. It is an expense, but well worth it to me. Doing a couple of windows is okay, but I cannot do several rooms of windows without pain, and the vacuuming is indeed painful, and so is the mopping. All those grand sweeping, circling motions that I used to not even think about are now too much for my right arm, I can do one room okay but that's it. It takes me so long to get through the house that it's just not worth it.
I am glad you have that BC surgeon visit behind you, and that you are satisfied with it. I think it sounds very promising for you, and I know you will take care of yourself.
I think you and Raymond are so fortunate to have each other, it seems like it is rare these days for a couple to both be in reasonable health, of good mind, and able to enjoy life as they get into their 70s. Since I became a widow I am aware of how many widows there are just in my community, and among my friends, who are mostly in their 60's with some in their 50's and 70's. I am very happy for you both, it is a wonderful thing to have a partner in this world!
I am going out-of-town for a couple of days with my SIL, I plan to take my tablet along so I can keep up with the thread somewhat.
Take good care of yourself!
Love, Mary
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hi everyone,
Finally caught up with reading our posts. Whew.
Mary I live 20 minutes north of Boston. The weather has been crazy as you may know.
Sylvia, m lad that you are slowly recouping from your arm pain.
I had my wound appointment today, the open wound is now the size of a peanut m&m. The doc seems to think 2 more weeks and then I can move onto radiation. In the meantime it's no fun walking around with a noisy wound vac.
I work at a elemenraty school, and the stomp he bugs and flu have been going around. I have not had my flu vaccine yet, and after reading about Sylvia s experience not sure if I will.
Marias and Lou,I hope you are doing well.
53Nancy so happy that you don't have to do chemo
Kathy, keeping your sister in my thoughts
Angi
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Hi Sylvia and everyone,
Finishing up my second cycle of Xeloda one week one and one week off.Thank God no terrible side effects.Feeling good and staying busy!
Love
Rhonda
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Hola no me operaron me levantaron de la cama de cirugía por el.celecoxib que podía permitir que me desangrara. Así que Dios es grande y escuchó todas las oraciones. La Dra Pérez estaba brava cuando me entraron a cirugía porque el anestesiologo se había ido... Y había dejado un reemplazo... Que estaba operando en ese momento. Cuando comencé a hablar con ella le.conté del.celecoxib y dijo espera fue por.otra médica creo que la Dra García la anestesiologa y dijo no. es un anticuagulante como la.aspirina y la.cirugía es de gran sangrado así que queda suspendida. Así que agradezco sus oraciones y por algo será que se interrumpió esta cirugía en último momento. Mil gracias por estar pendiente.Is hard to me say all of This in English. Today I didn't get the surgery because the celecoxib.
My cat give me this colibri today. Is harmed I hope he can live
Abrazos
Marias
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Hi Ladies,
I have been busy this few weeks. 2 weeks before I was in Malaysia for the Deepavali celebration. Then this week my cousin came to visit from Qatar with her DS who is the same age as my DS. It's term break and so we have been going around to entertain the little ones. It was exhausting but we had lots of fun.
Next week, I will be starting a part time job from Thursday to Saturday. I decided to go back to work so that I can keep my mind off from over thinking.
I started adding to my weekly diet fresh coconut juice, beet root, fresh turmeric and bitter gourd. This is quiet abundant in our tropical climate.
Sylvia - Belated happy anniversary to you and Raymond. May you have many more years to spend together. It is good to hear that you are able to get help for your lymphedema problem. I hope it will get better soon.
Mary - It is good to know that you have been busy. I find that when I am busy it almost feel like normal and made me thought less of BC.
Marias - Hope you will feel better soon.
Angie - You mentioned about attending an Indian wedding. My DH is Indian but he was born in Malaysia.
Pam - In your pocket as you go for your test.
Best regards,
Lou
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Hello Mary,
Thank you for your post. With reference to lymphoedema, it can occur in anyone who has had surgery and it is not confined to surgery for cancer and it is not confined to breast cancer. Even if you do not have it post surgery, it can occur at any time after that surgery, even years. It can occur in the hand and arms, groin, legs, feet etc. I would imagine it can become chronic. I think it can be mild or serious. If you are interested you can measure your arm that had the surgery, and your other arm. I think you will usually find a little bit of a difference, but that difference stands out if you look closely. I know that when I first noticed puffiness in my hand, it was about a month after I had finished my treatment, so it could also have been caused by my radiotherapy treatment. We have to remember that radiotherapy can cause lymphoedema.
I have been measuring my right arm regularly for a few weeks now. There is very little difference. The wrist on my right arm (surgery side) is 7 inches and the left is 6 ½. Halfway between my wrist and the elbow joint the right arm is 10 inches and the left is 8 ½. On the elbow joint the right is 11 ½ and the left is 10. The upper part of the arm is not involved, which is a good sign, but ever since I had treatment it has been bigger than the upper part of the left arm, but it has gone from a 20% difference to a 10% difference over the years and I did not really realise this. I think the difference is because I have kept the right arm normally active and thus kept the lymph moving.
It seems to be that I strained the right arm on a heavy vacuum cleaner and that at the same time I had a flu vaccine after twelve years of not having had one. It seems it could have affected the arm as well, even though the vaccine was done in the left arm.
I suppose everyone could have a bit of lymphoedema after surgery, radiotherapy etc. and will not necessarily have been referred to a lymphoedema clinic. They probably go on numbers. I asked to be referred way back in 2006, had two appointments and that was it. I was told I did not need to return. The second appointment was only to get a compression sleeve which I decided not to wear. My GP at the time told me not to go that route. I was fine until up to a few weeks ago. That same GP arranged for me to have a couple of physiotherapy appointments where I was given exercises to do and told I need not return.
I think the secret to managing all this is to keep your arm active, but not to overdo it. You are definitely not supposed to have injections or blood pressure in the affected arm. I dread to think what might happen if you do! You must make sure this affected arm does not get bitten by insects, that you do not lift heavy weights with it, that you do the exercises I mentioned in a previous post, that keep the arm elevated when sitting and that you do your gently lymph massage. That massage does make a difference, but it does need a lot of massage throughout the day.
I think the problem is now going to be getting a quick appointment at the lymphoedema clinic at the NHS hospital and then the wait for a compression sleeve. The consultant told me to do a gentle massage and then put the sleeve on for a while to help get the swelling down.
I do hope this episode of lymphoedema will disappear in time but if it does not I shall just have to live with it.
I think that the danger with all of this is if you have a serious mishap on the affected arm, such as a bite, you could develop an infection and end up with cellulitis. That is an emergency and requires quick treatment with antibiotics.
I do not know how chemotherapy plays a role in all of this, but I would not think it is doing us any good.
I think we should go carefully with housework and gardening. I now have a very lightweight vacuum cleaner and I am trying to use it with the unaffected arm. As for gardening, I shall carry on, but I do not do heavy work and I have always had long sleeves and protective gloves.
Keep on exercising, keep that damaged lymph system moving.
I know that I am very lucky to have Raymond. We do everything together. I cannot imagine life without him.
It is true there are lots of widows around. In Exmouth, which is a seaside town and a popular retirement place, I see many widows. The coaches come in to the hotels on the sea front and you may see just a few men compared to all the women. If you go to cafes etc. it is the same. There are groups of women, never groups of men, and the women tend to be very noisy!
I do hope you enjoy your couple of days away.
At the moment I am trying to catch up with the thread once again. It is surprising how you can get behind. It is a busy time for me in the apartment complex as there is a lot of administrative work to do as we go towards the end of the year.
Thinking of you.
Love.
Sylvia xxxx
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Hello Angie,
Congratulations on catching up with the posts. It is hard work if you get behind.
I was glad to know that your open wound is now very small. If I were you I would not start radiotherapy until that open wound has completely gone.
I was interested to know that you work at an elementary school. That is one of the worst places for picking up bugs and flu.
I do hope you will not be put off a flu vaccination because of my latest experience. I shall never really know whether it was the heavy vacuum cleaner, the flu vaccination after more than twelve years of not having them, or a bit of both. I am not really in favour of these vaccinations and I have not had any flu all the years of not having them. However, I do know that people in the public services here tend to have them. I did not realise that doctors' surgeries got paid for each flu injection. The pharmacies here are also doing them and must be getting paid. This is all good business for the drug companies. I now understand why the surgeries here have been advertising so much for people to have these flu vaccinations! People here over 60 get "free" injections, as do vulnerable people.
I think everything seems to revolve around making money. Nothing here is really free on the NHS, because it is paid for out of national insurance and income tax.
I have read that there is a low uptake of these vaccines among all ages in England. That tells you something.
Keep in touch with us all and let us know when you begin radiotherapy.
Fond thoughts.
Sylvia xxxx
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