Calling all triple negative breast cancer patients in the UK
Comments
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Morning Sylvia..i hope you are well?.
I saw my new surgeon on Tuesday...he is very direct which i like! My tumour at least the main one..is 6cm and not attached to the chest wall..he said he could do a masectomy and leave my lymph nodes...but he might have to go back in to get clear margins..so i have agreed to have ALL lymph node removed at the same time as mx.. he told me that i will then..possibly have rads ..more chemo and anything else they can throw at it....then in the future ..pallitive care!
He has agreed to send me first one down for op..and he has given me the hospital of my choice..with a possible transfer at the weekend to a hospital that has doctors at the weekend!
When my nurse knew the 'real' reason i had turned my op down in March ..she was horrified and said i should have asked for a second opinion then..the trouble was my GP and other doctors had not heard of my surgeon..as he only came early this year! I only came to hear of him by chance as a lady on the other forum has him...and said how good he is! Thank goodness she did!
I could only tell you by PM why i did not have the surgery in March...i didnt actually 'opt' for chemo..i felt my options had run out...there seems to be a lack of communication at my hospital..total!
My partner whose appt was 8.10pm at another hospital ..didnt go well at all! He was last in and they asked him to remove pants etc...(but there was an 'air' of we are all dashing home in a minute)..as he had undressed ..we expected a rectal examination..as the equipment was there! The consultant asked him..'do you know why you are here' duh? strange question to ask a very sick man...he agreed he was anaemic..and has said they will do tests in 2 to 3 weeks time!! and he only examined his tummy....i am speechless and i dont know how to get him into hospital...fast! i have the doc ringing me anytime now..and i will ask her what to do about him!
Sorry for this to turn into a moan...
Dulcie xxxx
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Hello Dulcie
Thank you for your post. I was glad to know that you saw your new breast cancer surgeon on Tuesday and that he is very direct, which you like.It is good news that the tumour is not attached to the chest wall, as I think that makes the surgery easier, according to what my own breast surgeon consultant told me. I was glad to know that he will be able to do a mastectomy. I am a bit concerned about what is going on with the lymph nodes. Were you not offered the blue dye procedure which is injected into you and highlights any affected lymph nodes, so that you know how many are affected and need to be removed. When I was diagnosed, I was not offered this procedure and was told that they did it for younger women. After surgery I was told that only one node, the first node known as the sentinel node, had been affected and that during surgery they had removed that and only six others, just to err on the side of caution. I think there are a lot of lymph nodes under the arm, so I would not have thought you needed to have them all removed. If I were you I would talk to your breast cancer surgeon about this.
As I understand it, the lymph nodes are very important for keeping lymph moving around the body and getting rid of waste from the blood system. My understanding is that when lymph nodes are removed, you break this chain, and I think get build up of waste resulting in lymphodema. This lymphodema can be very mild, but it can also be severe and you have to wear a tight sleeve on your arm from the fingers to the top of your arm to help the lymph to move around. You will usually attend a lymphodema clinic where your arm is measured to decide how big the swelling is, whether you need a sleeve and you will be taught manual exercises, a kind of gentle massage to help with the swelling.
I think you will find radiotherapy much easier that chemotherapy. The tiring thing about it is you have to go in to the hospital five days a week, usually for three weeks or more. The radiotherapy is supposed to mop up any stray cancer cells. For the moment, if I were you, I would concentrate on all of this and not think about future chemotherapy, as it has been such a bad experience for you.
Do not worry about the word "palliative care". It is a word that can have frightening meaning for patients. It simply means support while you go through treatment. My oncologist used it and explained that it did not always mean care for terminal patients. My palliative care was to have Hospicecare nurses come to my home once a week for very useful chats and to help me in any way they could. I found them very useful and good company.
I was glad to know that you will be the first one to be operated on, as otherwise you will have too much time to worry. You must be glad that you have been able to choose the hospital of your choice. I know nothing about the hospitals in Cheshire, but I know you will have done your homework on them. As for a hospital where doctors are in attendance at the weekend, if I were you I would also check that out carefully. Nothing much happens in hospitals at the weekend, as consultants are often not there. We do hear some bad stories about doctors from Europe who come over and fill in at weekends, but do not have a good command of English. I had my surgery on a Wednesday morning and was second in the queue. I was fully awake in the evening, pain free and fine. The next day they got me up and sitting in an armchair and the physiotherapist came to show me how to do arm exercises. You need to get your arm moving as quickly as possible. The rest of the time it was just taking blood pressure, your temperature, your oxygen level and, above all, the drains that are put in after surgery. At the time they did not like patients to go home until the drains were clear. I was allowed home on the Monday morning and nothing much happened during the weekend. I think that now they may allow patients home with the drains and have the district nurse come in. I would still prefer to stay under the care of the hospital until the drains are clear. Before I left, one of the breast care nurses came with a supply of 'softies' to put in my bra until I felt healed enough to get measured for a proper lightweight prosthesis. Do not be afraid of the surgery and take advantage of your short stay in hospital to have a good rest.
Remember, Dulcie, you are in charge during this cancer journey and you are the one who should make the decisions.
If you feel you want to PM me about what went on in the past, please do.
Please let us know when you have your pre-op and the day of your surgery.
We shall all be thinking of you and wishing you well. I feel that you will be so relieved after surgery.
Best wishes
Sylvia0 -
Hello again Dulcie
I was sorry to know that the appointment your partner had at another hospital did not go well. I was amazed that he had an appointment at 8:10 pm. How awful for him to be given the feeling that they were all in a hurry to get home. Where is the total dedication that was the hallmark of the NHS? I know there are still dedicated staff. One of my friends is one of them. I cannot understand why a consultant would ask a patient whether he knew why he was there! You certainly are not there to party. You are there because you are ill. I wonder whether there was a bit of ageism here. Apparently it goes on a lot.Had a blood test been taken that showed your partner was anaemic? I get the impression that nothing much was done at that appointment. Why are they waiting two to three weeks to do tests? In this situation time is of the essence. Did the consultant tell you what kind of tests they are going to do? It all seems very out of order.
In a previous post you said that this Tuesday appointment was an emergency one, so I can understand how disappointed you were at the way you were treated. I suppose the best way is to go to A&E and say your partner feels terribly ill and needs to know what is wrong. I advised one of my relatives to do this and he got prompt attention.
With prostate problems, there should not be any delay.
I hope you and your partner will soon be able to put this all behind you.
Best wishes
Sylvia0 -
Hello again Sylvia and thanks for your responses.
In answer to your query about how I feel having Heparin injected once a week, I don't really mind. The line is flushed out first with something (I will try and find out what). When that is done I get a chemical taste in the back of my throat. Then the Heparin is injected, and it seems that they inject just enough to leave in the line itself to prevent blockages. This all has to be done in as sterile an environment as possible. The plus side is that you avoid the potential problems with veins and lymphodaema. The chemotherapy nurses like it because it provides them with easy access.
I am not familiar with the Portacath that you had inserted. It's probably a good thing that they removed it and you don't have it now, I don't like the idea of having a foreign object in my body long term. I will persevere with the Hickman Line but it will be removed once the treatment has finished.
The steroids have to be taken 4 at a time, so that is 8 a day for the 3 days involved (2mg tablets). I think they are given to suppress the immune system so that your body doesn't have an allergic reaction to the other drugs, particularly Taxotere. On the week of Chemo I have to go to the hospital on the Tuesday to have blood taken, be weighed and see the Oncologist. If everything is OK the prescription is made up ready to be administered on the Thursday.
I was interested to hear that you had an electro-cardiogram during your treatment. I have not had this and I have not witnessed anyone else having it either. I will make a point of asking about it and looking to see if anyone else has it when I go next time.
I have got a wig already and feel reasonably normal when I wear it, however when I lose my eyebrows and eyelashes I don't know how I will feel! I think I am going to lose them because my eyebrows seemed to have thinned out a bit already.
I went to the dentist before my treatment started and there were no problems. In fact I had had no problems before with the wisdom tooth which became infected. I think when you become neutropeanic things which may have been kept at bay by your own immune system come to the fore. That is why its important to try to stop the white cell count dropping. No one has told me to have flu or pneumonia injections. If my throat continues to feel the way it does at the moment I will get it checked out by my GP. Thanks for telling me to delay treatment even further if I need to. Sometimes I think the medical profession put you under pressure and you feel as though you are letting them down if you don't conform to their advice.
I don't know the name of the growth factor I will be using but will let you know as soon as I find out. You asked about my previous cancer. I had a mastectomy and no chemotherapy or radiation, just Tamoxifen, so I got off pretty lightly that time!
Thanks for mentioning the pro-biotic supplement and the mouth treatment. So far I have not taken any supplements because I was advised against them, but I think that advice was overly cautious.
I saw the Genetecist today and she confirmed that I have the BRCA2 gene, which appears to have come down through my grandfather on my mum's side. She explained that each parent has two genes and one of those from the father joins one of the ones from the mother. In my mums case she would have inherited a good gene from her mother but one of her father's two genes was faulty and unfortunately she got that one. Her sisters got good ones from both parents. She said these genes can go back through lots of generations but they are not easy to pick up because people died younger in previous generations and therefore the cancer may not have had chance to develop. Through family research I discovered that a sister of my grandfather died at 29 of breast cancer which had also spread to the spinal column. Someone with the BRCA2 gene has a 1 in 10 chance of getting ovarian cancer so she is referring me to a gyneacologist to discuss it further and to discuss my options. The best choice seems to be to have the ovaries removed but that is not something I want to face for some time. My brother should be tested to see if he inherited the faulty gene and my son too. Apparently they are at higher risk of prostate cancer if they have the faulty gene and she recommended my son be screened from the age of 40 if he has it. My brother needs to know for the sake of his daughter as well. I wish I had had my ovaries removed when I had my first breast cancer. My mum had a hysterectomy and her BC never came back. The geneticist said that there was some evidence that it came back less in those whose ovaries had been removed. I prefer surgery over drugs any day!
Now that I have been referred to the gyneacologist I will have been to every hospital in Sheffield since all this started. We are quite lucky to have two major general hospitals, a children's hospital (where I went to have the genetic test), a maternity hospital and a specialist cancer hospital as well as a Dental Hospital. They are all teaching hospitals linked to Sheffield University. The cancer hospital is one of only 3 in the country and it has a world-leading reputation as a centre of excellence, so I suppose I should be more confident about the advice my Oncologist gives me!
I have not had chance to look at the posts from the people you mentioned but will read them as soon as I can and if there is any advice I can give I will respond. I hope I haven't rambled on too much.
Bye for now, Karen
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Hello everyone
On Tuesday in the Health section of the Daily Express, in the column "Under the Microscope" by Professor Justin Stebbing (Professor of Cancer Medicine and Oncology at Imperial College, London) I found some useful information. It was about the 2012 meeting in June in Chicago of the American Society of Clinical Oncology. If you can, please have a look at this article.There were 35,000 experts from all over the world and it was all about new drugs, innovative trials and the improved understanding of cancer pathways. The article states that it is now becoming clearer that multiple targeted therapies to treat an individual patient's cancer will be used together. This is because resistance to an individual drug is likely to be common.
There is information about prostate cancer and how patients thought to be resistant to hormonal therapy, can still respond to drugs that inhibit the testosterone/androgen driving mechanism that promotes the disease.
It is further stated that two major drugs will be used to treat prostate cancer in five years time. They are Zytiga (abiraterone) and MDV3100 (enzalutamide). Please look at the details if you are interested. It is stated that these drugs will one day end the need for chemotherapy.
You may be wondering why I have mentioned prostate cancer. It is because there is a connection between prostate cancer and breast cancer. Most of breast cancers are hormonal driven and the same for prostate cancer. It is in my head because a few people I know have been recently diagnosed with prostate cancer and are going through the same fear that we women go through with breast cancer. I am wondering whether there is such a thing as triple negative prostate cancer!
The article also says that developments such as these are good news for patients but also highlight the fact that advances in knowledge are made in small steps.
I hope this information will be of interest.
Having read this article I then Googled ASCO and discovered that at this meeting there were also quite a lot of papers presented about TNBC. The following link will take you to the list of abstracts for TNBC papers.
Some of them seem a bit complicated. They are meant for medical professionals. At least it shows they are still working on treatment for TNBC and that we are not forgotten. If only progress were not so slow. Read them and try to let me know what you think. I picked up on a combined treatment of iniparib and paclitaxel. I also picked up something on AR (androgen receptor). Lint_Roller_Derby (Betty) mentioned this in one of her excellent posts. No one had ever mentioned AR before, if I remember correctly. I was wondering if any of you viewing this thread were told that you were AR+ and what the implications were?
If you are diagnosed as ER- PR- and HER2- but AR+, I was wondering what this means, because androgen is a hormone. I was also wondering whether a woman could be testosterone positive and what that means.
This is enough brain stretching for tonight. I think I might have a chocolate fix (90% - really DARKKK) (Lindt).
It is nearly the end of the week and I hope it has not been too bad for all of you. Do you start winding down during the day on Friday and what do you do to relax on Friday nights? In Canada in the company where my husband worked, they used to have dress down Friday. It was also known as POETS day - push off early, tomorrow is Saturday!
Thinking of you all.
Sylvia0 -
Hello Karen_Sheffield
Thank you for your most interesting post. I have been at the computer for quite a long time this evening, so I shall respond tomorrow. I am really interested in all you had to say and especially the genetic connection.Take care.
Sylvia0 -
Hi Sylvia ..i will PM you soon!
My surgery is Wednesday and Surgeon said the reason for taking all nodes out was..he wanted complete clearance..and if he only took several..he would quite possibly have to go in again...and he knew that i dont want more than the one op! So i agreed and he explained what my chances where of the 'arm'..but i just want rid..
.I am now so fed up as we have 'family' problems too! People being 'nasty' would you believe? Cancer so does bring the best out in some people ..doesnt it (smiles).I have tried to be so 'upbeat' for so long but families can drag you down!
Dulcie xxxx
My OH has a nurse coming to see him in the morning and we see our doc in the afternoon..No it wasnt an 'age' thing as the consultant we know and is usually very good..is the same age as my partner ..but i think he was late for dinner or an evening out..either way it wasnt good..but we hear today from another source..that he is going to be seen as an emergency quickly..otherwise i will take him to A&E...if i had a child who was ill i would do that too! and cause a stink too!
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Hello Dulcie
Thank you for your post. This is just a quick reply but I shall do a more detailed one tomorrow when I am feeling more refreshed.I read again about the lymph nodes in your post and decided to Google and ask how many lymph nodes are there under the arm. I was surprised to learn that not all women have the same number of lymph nodes under the arm and that some may have as few as five and some as many as thirty. I also read that, in breast cancer treatment to find out what is happening with the lymph nodes, that ten should be enough. If you want more information look up the following reference that I found on Google. I clicked on one that sounded interesting and it happened to be breastcancer.org. The link is:
http://www.breastcancer.org/treatment/surgery/lymph_node_removal/number_removed.jsp
There is also information on there about the blue dye procedure and the sentinel lymph node dissection. Please have a look at this site.
I can see you and your OH are having a very difficult time. I shall post more tomorrow. Do not let your families get you down. Remember the saying "you can choose your friends but not your families". If they have not been through cancer themselves they do not have a clue what you and your OH are going through.
I shall post to you and Karen_Sheffield tomorrow. Try to get a good night's sleep.
Warm thoughts
Sylvia0 -
Hello Dulcie again
I have just found an excellent site that really explains everything very clearly about breast cancer surgery. It has everything that anyone could wish to know before having surgery. The link is:http://www.partnershipforbreastcare.org/pbc/problems/treatment/surgery.aspx
The following is a summary from this link.
The basic surgical procedures are summarized below:
1. Lumpectomy - removal of the breast lump (tumor) and some surrounding normal tissue. Sometimes underarm lymph nodes are removed during this procedure as well. Radiation is most often the treatment used after a lumpectomy.
2. Segmentectomy - Similar to the lumpectomy but this procedure removes a more extensive area of breast tissue.
3. Partial mastectomy - removal of the tumor and a section of normal surrounding tissue including skin and lining of the chest muscles under the lump. This too is most often followed by radiation and may or may not require underarm lymph node removal.
4. Simple mastectomy - removal of the entire breast. Chest wall lining or muscles are not removed with the breast. . Sometimes underarm lymph nodes are removed during this procedure as well. Radiation is most often the treatment used after a mastectomy.
5. Sentinel lymph node biopsy - Surgical procedure that determines whether cancer has spread to the lymph nodes by examining the sentinel lymph node.
6. Axilliary lymph node dissection - Surgical procedure that completely removes all lymph nodes under the arm on the side where breast cancer was found.
7. Modified radical mastectomy - removal of the breast, underarm lymph nodes, and the lining over the chest muscles. This is the most common mastectomy procedure.
8. Reconstruction (tram, tissue expander with implant, latissimus flap) - To read about the various breast reconstruction options.
By reading this link I have discovered that a person can have up to 50 lymph nodes under the arm.
I am feeling really sleepy now so I am off to bed, although my brain may not let me sleep!!!
Sylvia
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To add to what Sylvia has just written....there are 3 levels of axilliary nodes; when I had surgery, over 10 years ago, the most usual procedure was for 'full axilliary clearance' - but this in fact only involved levels 1 and 2.So the level 3 nodes were rarely,if ever,removed. I had 11 nodes removed, but I have heard of people with 20 or 30 at the same level.
At around that time, the new sentinal node biopsy was beginning to be used; it was mostly still being trialled in the UK. Nowadays, this is the most common procedure, though 'full' clearance is still indicated sometimes.
I have been reasonably careful with my 'bc' arm, though not obsessive, and have not had any problems.
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Hi Sam52 .. i was having the sentinel node dye...but he says no .now that he has examined me..i have never met the surgeon before Tuesday and this is emergency surgery..so i rather just have anything removed than ..more surgery later...
Thank you and Sylvia once more x
Dulcie xxxx
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Hello Karen
As promised I am posting this as my first priority today. I am wondering what it is that gives you a chemical taste in the back of your throat. I thought it was just a saline solution that was used to flush out the line, but this could be wrong. It would not hurt to find out exactly what it is. I think we should know everything about what is being done to us.I agree with you about not having foreign objects in the body long term.
I think more steroids must be given now than when I was going through treatment. I took nothing before treatment and three at the most after. I had expressed my concern about steroids before my treatment because of all the side effects and I did write something on my consent form about this.
The process before chemotherapy is still about the same, except that the district nurse came to my home to take the blood test the day before my treatment. Nothing was made up until a patient arrived for their appointment. I can see the sense of being weighed because the dose of chemotherapy is made up according to your weight and height. I was asked my weight and height before treatment, but I do not remember if I was actually weighed or measured. I do remember that before the treatment I had to go for a consultation with two nurses who explained about the chemotherapy treatment and asked a lot of questions. I told them I was taking oral Iscador as prescribed by a consultant at the Royal Bristol Hospital. I took it all through treatment and for many years afterwards. It is a homoeopathic treatment for breast cancer and is an immune booster.
I think an electrocardiogram is important because if you have one before treatment and everything is normal, anything that shows up afterwards as abnormal must be attributed to the drugs. I suppose all hospitals have their different procedures.
I am glad that you have already got a wig and feel alright when you wear it. I really liked mine and did not mind wearing it at all. In fact friends thought I had not lost my hair! It was a Raquel Welch wig and not an NHS one, but it was paid for by the NHS. Apparently a patient is entitled to one wig. I got it at the wig department of House of Fraser in Exeter.
I should not worry about a loss of eyebrows and eyelashes. It may seem odd, but I barely noticed it. They disappeared while I was taking docetaxel (Taxotere). I just looked in the mirror one day and noticed they had gone. My eyebrows were covered by the fringe anyway. At the Royal Devon and Exeter hospital, where I went, they have a lovely house in the grounds, the FORCE cancer charity, where there was all kinds of support and you could learn how to pencil in eyebrows etc. I did not attend any of these but I know many did. I found that my hair grew back pretty quickly after I finished chemotherapy, but it took ages for my eyebrows and eyelashes to grow back, and even now they are not as they were before treatment.
It looks as though your dental problems must have been caused by your treatment. There seems to be no end to what chemotherapy can do to you. It is common sense that with your immune system not working properly no one can really know what is going to happen to them.
I was wondering whether you were not told about flu or pneumonia injections because you are going through treatment in the spring and summer. I started my chemotherapy in November and it finished at the end of April. If you have any problems with your throat, if I were you, I would see the doctor. I do hope you will soon feel up to continuing treatment. Chemotherapy is the longest and hardest part and you will feel such a sense of relief when it is all behind you.
I know we are all different but as far as I am concerned I always make up my own mind. I did everything during treatment that I thought would help me. I took vitamins and minerals and natural things such as ginger and lemon tea, brewed up chopped up ginger root, ginger biscuits and ginger capsules. I kept my mouth healthy with Biotene products and found that tinned pineapple in juice was very refreshing for a dry mouth.
I do not believe the medical profession should put a patient under pressure.
I shall be very interested to know about the growth factor that is used to stimulate white blood cells.
I think we all know that the medical profession is against vitamins and perhaps anything that is not medication or drugs. As I learnt from CANCERactive, statistics show that plenty of people have died from drugs and medication but no one from vitamin supplements! I should mention that I drank loads of green tea during treatment and have been drinking it now for seven years.
I was most interested to know that you had seen the geneticist. I wanted to see one and actually had an interview with a specialist nurse about this. She told me that she would not refer me to a geneticist because had my breast cancer been caused genetically I would have had it at a much younger age. To see one privately would have cost £3,000. I think that everyone should be tested genetically. I was interested to know that your BRCA2 gene had come down through your maternal grandfather. It is truly interesting the way in which one sibling can pick up a faulty gene and another does not. I wonder what the difference is between BRCA1 gene and BRCA2 gene. I would love to know whether these genes are in my family background. My maternal grandmother died of breast cancer that had spread when she was about seventy and that was in 1955. Of course, I do not know what kind of breast cancer she had. Her two daughters, my mother and her sister, did not have any cancer. Of the four female cousins on that side of the family, so far I am the only one to have been diagnosed with breast cancer. I know very little about my father's side of the family or about my maternal grandfather's family. Your grandfather's sister certainly died at a very young age of metastatic breast cancer.
I think there must be a similarity between the BRCA1 and BRCA2 gene. As far as I remember, the American lady, bak94, has the BRCA1 gene and like you she has been through breast cancer for the second time and is going to have a hysterectomy sometime soon. I understand that ovarian cancer is quite difficult to treat, as often there are no symptoms until it is quite advanced. Let us know how you get on when all this is discussed. I understand your concern about your family. I think removal of the ovaries has been advised for you because it will get rid of a lot of oestrogen, which is the main cause of hormonal cancer. There are other parts of the body that still produce oestrogen.
I am glad for you that Sheffield is well supplied with hospitals. It is good that they are all teaching hospitals linked to Sheffield University. You are very lucky to have one of the only three specialist cancer hospitals in the country. You should be well looked after.
Please let us know if you get to know any new research into breast cancer in general and TNBC in particular. Keep strong, keep looking forward, get plenty of rest, keep well hydrated, try not to get stressed and relax any way you can.
Fondly
Sylvia x0 -
Hello Dulcie
Thank you for your post and for letting us know that your surgery is on Wednesday. We shall all be thinking of you. Just think that this time next week it will all be behind you. I can understand that you do not want to go through surgery twice. Just make sure that you see a physiotherapist while you are in hospital and that are shown how to exercise your arm. Good luck for Wednesday.I do not know what to say about family problems. You need all the support you can get at the moment and you do not need the stress of family members making life difficult for you. If they cannot be a positive helpful factor in your life, then probably the best thing to do is to keep them at bay. When I was going through treatment I also saw a homoeopathic consultant and appointments with her were quite long and very meaningful. We talked about family and she advised me to keep away from any of them having a negative effect on me. Keep close to you those that show they really care about you and are willing to help psychologically and practically, Do not let your families drag you down. If you cannot pour your heart out to them and explain what is going on inside of you, you can certainly do it on this thread. Do not let stress build up inside of you. You do not want your brain filling up with the stress hormone cortisol. Keep with people who make you laugh. It is the best tonic.
I do hope the nurse who is coming to see your OH this morning will be of great help to you and that the doctor you see in the afternoon will be of positive help as well. Let us hope that today, Friday, will be a positive day for both of you and that you can have a relaxing weekend.
I was glad to know that there was no ageism coming from your consultant. If he was late for dinner or an evening out, that was too bad. His patients must come first. If you do not get satisfaction go and "throw a wobbly" at A & E! We are paying dearly for all of these services.
Let us know how everything goes.
Best wishes
Sylvia0 -
Hello sam52
I hope all is well with you. Thank you for your post and for your information. Thank you for explaining the different levels of nodes. I do like the thread to be a learning experience and a learning curve. It is so interesting to learn new things every day. Like you, I am careful with my BC arm but not obsessive. I make sure I use it. I always remember to mention if I am at the doctors etc. that I have been told not to have injections or have my blood pressure taken in my right arm, where I had the right breast mastectomy.I hope you have a good weekend and do things that make you happy. I cannot believe the amount of rain we have had in June, nor the cool temperatures. The grounds here have been growing so fast you would think Jack of Beanstalk fame had been throwing his beans around!
Keep posting. You are an invaluable source of information and very special.
Love
Sylvia0 -
Hello everyone
I just wanted to wish you all a good weekend.To linali, I hope you are having an enjoyable time with your sister.
To BernieEllen, I noticed that you have been very quiet lately and then I read that you had been away. If you have been on holiday, I hope you enjoyed it. I hope you enjoyed the visit from your in-laws. Is your husband away with his work at the moment? I hope you are well.
To Lint_Roller_Derby (Betty) and Karen3, I hope all is well with you and that you have a good weekend.
That is all for now.
Best wishes
Sylvia0 -
Hello everyone
Another weekend has gone and it has been very quiet for posts but active for views.I have just received my latest copy of Vita and would recommend it to all breast cancer patients. It is a free subscription and is a UK magazine. This issue has a very interesting article about a woman who was diagnosed with breast cancer at age 53 and has had it come back thirty years later at age 83. This means we must always be vigilant and take nothing for granted. We have to look after ourselves. We should view the thirty years with optimism, as it means thirty years of life and counting.
There is also a very interesting article about chronic pain after cancer treatment. I know that lots of women on the threads mention aches and pains quite a lot. I would think this article would be of interest.
The other two magazines that I receive on a regular basis are Amoena and Icon magazine. These are both UK magazines. Amoena is free subscription and Icon is by donation or free if you can pick it up at your hospital. You can also read some of it online.
I send special thoughts to Dulcie who will be having surgery on Wednesday.
Best wishes
Sylvia0 -
Hi Sylvia,
My sister has left and it is very quiet this morning. Leigh came home last night but dont think I'll see him before 1. We had a good week and visited the beach at Fanore where we have sprinkled some of Mum and Dad's ashes. Mum was scottish and so loved it here in the west of Ireland and she was a free spirit and I love to think of her flying in the wind, next stop America.
I was very interested in the magazine especially in the article on pain. Tomorrow at the centre we are putting together a questionaire to put on the website re pain. It seems to be a problem that is common but not addressed in a pro-active way. Infact its never mentioned as a side effect by your medic team, therefore putting the fear of God into you when you experience it on a regular basis! The article isn't on line yet but will try again later.
My radiotherapy consultant has put me on a regime to try to help the rads reaction. He told me that he only comes across it once in every 5 years. Typical, I would have to be special in a bad way!
Regime is 400mg ibuprofen 3 times a day
1 Losec a day
1500 vitamin C a day
1200 vitamin E a day
I will see him again in 6 weeks. He was very understanding and told me that I shouldnt have put up with it for so long.
Still not sure about the Lyrica, I am feeling dopey but it could because I have been busy with sis's visit. Also pain hasnt gone, it's worse if anything, but I have done an awful lot of driving.
A wierd experience to be back in the radiotherapy waiting room. I had forgotten what a calm and caring place it is, with everyone so kind and helpful. I realise what a shock it was to leave that cocoon after treatment finished and cope with the "outside world "!
I have a counselling session this evening and tomorrow stress management maintenance session after our arts and craft afternoon.
I had a call from the guy in social welfare re invalidity but he cannot help me. So frustrating that it is impossible to get any advice. Hopefully if I get myself sorted I can compile a list of tips and advice for anyone else in the situation of being unable to return to your job.
I would like to add my healing thoughts to yours for Dulcie.
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Hello linali,
Thank you for your post. I suppose it will seem quiet after your sister's visit. It is always hard getting back to a routine after having visitors.It sounds as though you had a nice visit together. It was lovely that you were able to scatter your parents ashes in a place that you know they would have liked. Your mother sounds like a very interesting woman.
I was glad to know that you are interested in the Vita magazine. I have looked in the magazine and it says that you can write, tweet or e-mail. Their website is www.vita.org.uk. Their tweet is @Vita_mag. E-mail is vita@breastcancercare.org.uk or write Vita Magazine, Breast Cancer Care, 5-13 Great Suffolk Street, London, SE1 0NS. I should point out that Vita Magazine has merged with their sister publication Breast Cancer Care News. I think you would get a lot out of reading this.
There is mention about Strawberry Tea Season, where people are organising get togethers to raise money for Breast Cancer Care. You could organise one for your centre.
There are so many interesting articles in this magazine, such as art therapy, and as I said, management of chronic pain under the title The Pain Barrier and this is broken up into Pain after surgery, especially long-term pain, often associated with nerve damage during surgery to the axilla (under-arm) when the nerves supplying the skin have been damaged or stretched.
Research seems to suggest that people who have had multiple lymph nodes removed experience more pain than those who have just had a sentinel lymph node biopsy.
The other section about pain is that related to aromatase inhibitors (Als). It is well known that Als cause joint pain. It is thought the pain is caused by the strong effect that Als have on the remaining oestrogen after the menopause. Pain is common in the wrists, hands, knees, hips, lower back and shoulders. Apparently Tamoxifen has fewer joint related side effects.
These are just two types of long-term pain after treatment. At Vita online other aspects of chronic pain are discussed. These include cording, urogenital pain and post-mastectomy pain syndrome.
There is so much else in this magazine, such as a section entitled Ask a breast cancer expert. One question is a patient asking whether she really needs both chemotherapy and radiotherapy for primary breast cancer. This question and answer section is on pages 18 and 19.
I look forward to hearing from you about the questionnaire you are putting on your website about pain. Are we able to have a link to your website?
Can you remind me what your reaction was with the radiotherapy treatment. Did you suffer from burns, pain or some kind of rash? I am no doctor, but I am always very wary about taking medication. What is the regime, that your radiotherapy consultant has put you on, supposed to do? Losec is a brand name for omeprazole that is an anti-ulcer medication. As for the Lyrica, has that been prescribed by the same consultant or a different one? It is only my opinion, but I have seen so many people end up with all different drugs that have different side effects.
I agree with you that the period after your last session of standard treatment is quite difficult. You have been kept so busy for such a long time as you go through surgery, chemotherapy and radiotherapy, and then suddenly you are out of that routine and on your own. You are relieved to have finished, but at the same time frightened about being on your own. This is what I found and I know that my husband for it strange as well. We both felt we had no lifeline. Slowly you do adjust. Even now I have anxiety about the fact that nothing is done by the medical team to keep an eye on whether secondary cancers are forming. You get checked out by a physical check up and mammograms, but there seems to be no check ups to see what is going on inside your body. It is a no win situation as far as I am concerned, because I would not like to have regular check ups with CAT scans etc., because of the damage that these scans can do. Our medical teams rely on us to point out anything we feel is abnormal and needs to be checked out.
I do hope everything goes well with your counselling session this evening and your stress management session tomorrow after your arts and craft afternoon.
Keep us posted on any tips you may pick up.
Wishing you all the best.
Sylvia0 -
Hello Dulcie,
I just wanted to let you know that I am thinking of you this evening as you will probably be feeling nervous. Try to get some sleep. This time tomorrow the surgery will be behind you.
I do hope you had good news about your OH.
Best Wishes,
Sylvia.
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Hello linali,
I hope you had a fulfilling time at your centre yesterday and that you have now managed to read parts of Vita magazine.
Best Wishes,
Sylvia.
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Hello Karen_Sheffield,
I am just popping in to say that I hope there has been some improvement in how you are feeling.
I do not suppose the weather is helping. We badly need some rain.
Thinking of you,
Sylvia.
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Hi Sylvia,
The Lyrica was prescribed by a pain specialist who will also do a procedure on my shoulder...a nerve block I think. Still have to discuss it with him.
The other regime was from the radiotherapy consultant who got it from a prof at toronto uni. I have a rash and very red inflammation and pain in the breast and under it. He didnt say exactly what it is.
I am going to check out the online magazine again tomorrow as I am quite tired. I had a reiki session at the centre and then later we had stress management relaxation exercises which we did lying on the floor. Unfortunately I found them very uncomfortable and had to take painkillers after, but I will know what I can do in the future. I didnt get around to my art today as I spent too much time chatting!
Had a busy frustrating morning, most of it spent looking for my phone . I searched everywhere and got stuck under the recliner with a torch. I even rang the centre to see if I had left it at the centre after my counselling session last night. Luna ,my cute cat had been out all night and was sleeping on the sofa and I didnt have the heart to wake her, but after 3 hrs I decided to check the sofa again and she moved. There was the phone, she had been sleeping on it the whole time.
I am going back on thursday to help compile the pain questionnaire .
I wish the weather would change. We would like to go to Galway to see the volvo ships festival, theres music and crafts on the dock side.
I'm hoping that the reiki will give me a good nights sleep.
Night God bless
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Hello linali
Thank you for your post. I shall answer it later on.
Thinking of you.
Sylvia
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Hello Lint_Roller_Derby (Betty), bak94, christina241 and mcrimmon324 (Heather)
I just wanted to say a special Hello and wish you all a happy July 4th. I hope you have an enjoyable day today.
Best wishes
Sylvia
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Hello linali
I was interested to know about the rash, very red inflammation and pain in the breast. I would not have thought that you should have this two years after diagnosis. I do hope all of this can be brought under control and quickly. If I were you, I would ask your radiotherapy consultant to spell out exactly what is causing your symptoms, is there a name for them, and how is he going to clear them all up. Here in England I think this kind of thing would be dealt with by the oncologist. I deal only with my oncologist and breast cancer consultant surgeon. These two work together. It was my oncologist who decided on my chemotherapy regime and also on my radiotherapy treatment and organised all of this. For my radiotherapy I saw only the technicians who settled me under the beam and worked the machine.It sounds as though you had a very busy time at the centre and did quite a lot of physical exercise, so I am not surprised that you are feeling tired. Remember not to overdo things and work at your own pace. It is a pity you missed your art course, as that must be very relaxing.
I had to laugh at your incident with the phone. I like the name of your cat.
I hope you had a more relaxing afternoon today and that you will enjoy compiling the pain questionnaire on Thursday.
The weather has been very disappointing so far this year. I think here in England we are all fed up with the rain. I hope you manage to get to Galway soon.
That is about all for now.
Best wishes
Sylvia0 -
Hello Dulcie
I hope that your surgery is now behind you and that you are resting peacefully.Warm wishes.
Sylvia0 -
Hello sam52
I hope all is fine with you and that you are having a good week. I think you have only another two weeks before the long summer holiday. Have you made any special plans?I found an article this week about vitamin K pills and how they may strengthen brittle bones. Vitamin K is now being put forward as a new way to tackle osteoporosis. I thought it was already an important element in the treatment of osteoporosis. It is certainly in the Solgar Bone Support calcium supplements that I take.
Apparently about 150 women are taking part in a trial where they will receive a form of the vitamin. It is thought that vitamin K is important for healthy bones because it triggers the release of enzymes that are essential for bone formation.
This vitamin occurs in a number of forms. The main dietary form of this vitamin is vitamin K1, which is found in green leafy vegetables. The other form, MK, is produced by bacteria in the body. It is one form of vitamin MK, known as MK4, that helps preserve bone density and strength.
The trial will be an eighteen month one and will take place at Guy's and St Thomas' Hospital NHS Foundation Trust. In this trial patients with low vitamin K levels will be given vitamin K1 or MK4, in addition to the medication they are already taking. They will then be examined every three months and monitored for changes in bone density in the lower spine, hip and forearm.
I was wondering what you think about all this. All the emphasis for treatment of osteoporosis has been on getting plenty of calcium in your diet and taking vitamin supplements. It is only relatively recently that the experts have started telling us that calcium supplements cause heart problems and advising us not to take them. In the diet all the emphasis has been on eating lots of dairy products, even though the information is that humans cannot absorb this calcium. With the supplements most of them are calcium carbonate, which we are not supposed to be able to absorb!!
Has the emphasis on calcium and lack of it in the development of osteoporosis been wrong? This is what I am wondering. Should the emphasis have been on vitamin K?
I do not know in this trial whether the patients will be on bisphosphonates as their other medication. I would assume they would be on vitamin D. as you know I think bisphosphonates do more harm than good.
I think that all of us who have gone through standard breast cancer treatment run the risk of osteoporosis. I know that both of us, having had an over-active parathyroid gland in the past, now cured we hope, causing calcium to seep out of the bones into the blood, had an additional risk. As I have said before, I think mine was more likely caused by the cancer treatment, because that is when I seemed to have a problem.
You know that I value your opinion.
I hope you are well and not getting too depressed by the unusual summer weather!
Love
Sylvia0 -
Hello Sylvia Sam52 and all on here ..
I had my full mx plus all lymph nodes on Wednesday morning..although the surgery appears to have gone well and i wasn't afraid in the end (not sure why that was) i was up and moving very quickly..i was put on oxygen till late evening..the standard of my care was very poor considering i was the only patient! Within an hour of coming back into my bed..a nurse was taking my gown off and putting a bra on me..then within the hour ..this was then removed? I had four nurses that didnt give a jot about me! I was fed and thats about it ..and the nurses were quite 'bullish' towards me...
I am sorry this is so negative..i truly am...i was supposed to stay on this ward until Friday..then when it closed ..moved to another hospital until Monday...i had everything in place for this..including my dog in kennels until Tuesday...I was suddenly told i was going home on Friday..and the Mcmillan nurse came and 'told' me i was 'seen' going for a shower on Thursday morning by the nurses..so i was fit to go home!!! I was in fact going to have a 'wet wipe' wash and use the loo! i was wearing hosiery and had my drain in! So hardly in the position for a shower with a 'new' wound...
At no time was i given any 'exercises' to do! I could go on and on...
I am beginning to wonder if its all to do with a 'large complaint' going on about a doctor..as this poor service seems to be following me wherever i go...i had a 'nurse clinician' whom i have only met once and 'seemed' quite pleasant..only to turn on me last week ....i cannot go into it on here..sorry...
I wonder what you think about it..I am from the 'old school' where nurses where polite and vice versu...once upon a time...
Dulcie xxxx
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Hello Dulcie
I have just read your post and I was shocked by what you have told us all on the thread. I cannot believe the way you have been treated. I hear so many awful stories about the way patients are being treated in our NHS hospitals, that I do wonder what is going on now.I was glad to know that the surgery appears to have gone well and I do hope that all will heal nicely and quickly. I was glad to know that you were up and moving very quickly as I think that is a good sign and how it should be. I remember having my surgery early in the morning like you but remaining in recovery for a long time, as a bed was sought for me, but I had made a special request for a room on my own. I was on oxygen as well. The next morning a nurse came in and gave me a body wash in bed and very soon I had a visit from a physiotherapist, who showed me how to do exercises on my own. I was on bed rest for just the day following surgery and was then up and about to go to the toilets etc.
I was very sorry to hear that your standard of care was poor and I feel that if I were you I would report it. The NHS costs us all dearly and I get so angry when anyone says that it is free. It is far from free to us the tax payers, it is just free at the source of treatment, meaning we do not hand over money when we are treated, but we have sure handed over a lot of money beforehand!
I cannot understand why within an hour of being in your bed a nurse was putting a bra on you and then taking it off within the hour. You would have had a dressing on it from tour surgery and drains coming from the surgery site, so I wonder why a nurse would try to put a bra on. I remember that I had a dressing on for the whole five days that I was in hospital and this was changed regularly and the drains checked and emptied. It was only when the drains were clear that I was told I could go home and that morning the senior nurse came to see me to help me put on a bra and to put a softie in where I had had my breast removed. She gave me a supply of these softies and I wore them for a very long time before I felt ready to have a prosthesis. When I was ready for the prosthesis I went to see the cancer nurse who was looking after me through treatment to be carefully fitted out. Throughout my treatment everyone was kind, sympathetic and professional. I could not fault them.
I cannot believe the way the nurses treated you. You must not let this go as nurses like this should not remain in the profession. If I were you I would go to PALS and report all this and I would also report the attitude of the nurses to the ward sister and make a complaint about the hospital. If patients do not complain then no one knows that they have not been properly treated.
You do not have to apologise for being negative. Having breast cancer and going through all this treatment is a very emotional and traumatic experience for women and they need a lot of support and tender loving care. In your situation I would be hopping mad and shouting it from the roof tops. I think it was bad enough that you were having to change hospitals for the weekend. It is unacceptable that wards are closed at the weekend anyway.
I think there is a policy in a lot of hospitals at the moment to get people out of the hospital as quickly as possible. It must be all to do with targets and saving money. This is no way to run a health service. I have been hearing horror stories from one of my cousins about what has happened to her partner in a hospital in Essex. He is a young man of 42 who last October was admitted for a back operation. He walked into that hospital but has not been able to walk since and has been in and out of that hospital. He and my cousin have been treated in the most atrocious way and have put in numerous complaints. The partner is now stuck in that hospital and is waiting to be transferred to a specialist hospital in London, but is not considered a priority and is waiting to be taken there as an outpatient!!!! he is stuck in a geriatric ward where people are disturbing him all night, urinating in the ward etc. The other night he fell asleep in his wheelchair away from the ward and it took a long time for any staff to notice that he was missing from the ward! He does not get washed, unless my cousin washes him, the food is awful and he is in pain and utterly depressed. This is our NHS which we are constantly told is the envy of the world. Alice in Wonderland come to mind!
Surely, it was not up to any nurses to tell you you were fit to go home. I thought that had to come from your consultant. I remember that my consultant came to see me on the Saturday morning after my surgery on the Wednesday. She is an extraordinary woman who goes that extra mile. How anyone could have thought you would be going for a shower is beyond me. Since when did nurses take on the role of spies? I think they were not performing their duties. After my surgery for a couple of days the nurses escorted me to the toilet.
Am I to understand that you have not been given any exercises to do? Unless things have changed, you should have been and it is very important to do these in order to try to avoid lymphoedema.
If there is a complaint ongoing about a doctor, this should have no adverse effects on the patients. What exactly is a nurse clinician? Why would you be treated by someone relatively unknown to you? If you want to PM me about all this, please do. Try to put as much information as you can on the thread so that everyone knows what is acceptable in their treatment and what is not. I do understand the problems associated with some information and the repercussions of publicising it. Look at what is happening to Julian Assange. We, in the UK, have a right to expect the highest quality treatment in our health service and it is obvious that lots of patients are not getting it.
I, like you, expect civilised behaviour from nurses and doctors. Above all, we cannot have nurses thinking they are doctors and we cannot have doctors thinking they are too superior to talk to patients. I think the present government is ruining everything with the emphasis on cuts. I know from one of my friends who is a senior nurse at one of the London hospitals, that work is an absolute nightmare at the moment. There is plenty of room for cuts elsewhere but you do not try to solve our debt problems by hitting the most vulnerable and ruining our health service and our education service. I think we could start saving money by abolishing the House of Lords, cutting the House of Commons by at least half, doing away with their expenses and second homes, doing away with all their jet-setting, stop waging wars and sending money abroad. What a disgrace to learn that a million children in this country are starving and have the bloated stomachs as proof. I have no time for religion but I do believe that charity begins at home.
At least, Dulcie, you are at home now, or I think you are. Just look after yourself and fight your corner. I came home on a Monday at lunch time, having had surgery on the Wednesday before, and I saw my consultant surgeon before I left, as well as the senior breast cancer nurse, and an appointment was made for me to see my consultant for a check up on the Friday.
Thinking of you and angry at the way you have been treated.
Fond thoughts
Sylvia XXXX0 -
Hello Dulcie,
I forgot to say that in the hospital where my cousin's partner is stuck in the geriatric ward, there is a whole ward standing empty because of the cuts. What a way to run a health service!
Best Wishes, Sylvia.
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