Calling all triple negative breast cancer patients in the UK
Comments
-
Hello everyone,
I am just popping in with a few special hellos to the following people.
Linali, I hope you are having a good time with your family. I have been listening on the news to the poor woman whom you mentioned to me and her tragic death because she was not allowed an abortion.
BernieEllen, I hope your niece is making good progress in your loving care.
Maria_Malta, I hope all continues well with you post-treatment and that you are having good weather in Malta.
FernMF, the same goes for you. I hope you are well post-treatment.
Sam52, I hope to hear from you soon and would love to know what you think about strontium citrate, as well as vitamin D deficiency being perhaps implicated in both breast cancer and hyperparathyroidism.
To any others that I may have forgotten, I hope you are all well post-treatment. To those of you going through treatment, keep looking towards the end of the tunnel and for the newly-diagnosed do not be afraid, as you can deal with this and we are here to help you.
Hope you all have a good weekend.
Sylvia xxxx
0 -
Sylvia thank you for your reply! I'm sorry, but I can't write too much now as I'm in pain from docetaxol-vey sore thigh pain. I'm on an rx for it, but find it just takes a bit of the raw edge of. Going to try and nap now. Hope everyone is well and enjoying the week-end! Shari
0 -
Hello Sjesse12345
Thank you for your post. Your chemotherapy will soon be over now with just three to go. You have had a lot of Taxotere, but that is supposed to be excellent for TNBC, so keep looking forward.
It looks as though your medical team is looking after you and carefully planning everything in advance.
Make sure you get plenty of rest and look after yourself in-between treatments so that you are feeling as strong as possible on the day of chemotherapy. Make sure you drink plenty of water throughout your treatment and get as much rest as you feel you need.
Best wishes.
Sylvia xxxx
0 -
Hello Sam_UK
Thank you for your post. Hang on to your positive side, so that you can cope with anything relating to your cancer. Looking after yourself must be your first priority.
You must remember that you certainly do not have to apologise to anyone for having been diagnosed with cancer. This can happen to anyone. The women around me that have been through cancer were all very fit and healthy and that includes me. My breast cancer consultant, when she first met me, told me that I should not have cancer and that it certainly was not my fault if I had it. If other members of your family get diagnosed with cancer, it will not be anybody's fault. It is just the luck of the draw. Remember, one in three people are going to get cancer.
Do not let all the decisions about your relationship come from your husband. Have a good think and decide what you want to do with your life. I was reading in a magazine yesterday that it is the sixty plus group of women that is opting to split with their husbands and start a new life. They are fed up with living for other people and especially men and are loving their new lives. You must make sure that, if the worst comes to the worst, you are financially provided for.
I certainly do not like the sound of your GP and what he said about reading your notes was out of order and unprofessional.
Is the weight gain due to your taking steroids?
I do feel that you have not been treated properly by your medical team, judging by what you have written. You have to be your own best advocate and stand up for yourself.
With reference to your personal problems, why not get counselling from a cancer charity if you feel that you want to save your relationship. The two of you would have to go together and get all your feelings out in the open.
Please look after yourself, first and foremost.
Thinking of you.
Sylvia xxxx
0 -
Hello netty46,
Thank you for your post. I am not sure where you are with reference to breast cancer as I cannot find any details. Whatever stage you are at, I hope you are doing well.
I think, when reading the threads, it is best not to take them all too literally. Breast cancer is very individual and none of us knows what will happen. Read about other people's journeys but do not go thinking that what happens to others will happen to you. I think a lot of how we react to each treatment and how we progress has a lot to do with our state of health when we are diagnosed, how strong our immune system is and whether we have had other illnesses or have other chronic diseases. When people post we do not always get all of the details. We can use the threads for support and information but we have to make up our own minds about what we shall do as regards our own treatment and what we can do to help ourselves. For me I firmly believe in a healthy diet with no dairy products and no alcohol and no junk food, gentle exercise such as walking, keep away from sugar as much as possible, keep to your ideal weight, avoid stress and people who have a negative effect on you.
Ultimately none of us knows what will happen with our cancer journey and ultimately none of us knows, regardless of the cancer, what will happen on any given day. Living is risky and is the major cause of death!!!
Enjoy your Sunday.
Fond thoughts.
Sylvia xxxx
0 -
Hello slv58 (Shari),
Thank you for your post. I am so sorry to read that you are in pain from the docetaxel (Taxotere) and I do hope you will get some relief from what you are taking. You are right to sleep it off.
Remember we are all here for you and thinking of you.
Fond thoughts.
Sylvia xxxx
0 -
Hello Sam_UK
Thank you for your PM. I was very interested in everything you had to say. I do hope that things will start to go right for you, that you will find some happiness and have a life on your terms.
You cannot undo what has happened in the past with your breast cancer treatment, but you can be in control about what happens now and you must make sure you take control starting next week when you find out the results of your biopsies. Make sure your friend is with you and make sure you listen carefully, speak up if you do not understand any thing, and do not be afraid to ask as many questions as you want. Take notes if you need to as we can forget oral information quite easily or get it wrong. Do not be afraid to seek a second opinion if you feel it is necessary.
If you need a breast care nurse this time, make sure it is someone with whom you can get on. I had an excellent breast care nurse, not to mention an oncologist and breast cancer consultant surgeon. They were all ready to go that extra mile. I was glad to have an all female team as I would not have been happy with a male one and would probably have asked to be changed if I had ended up with males. My woman surgeon did such excellent neat surgery when she performed a mastectomy on my right breast. I had no pain or subsequent problems.
Please try to concentrate on living and do not think of death. There is life after breast cancer and there is certainly life after marriage breakdown.
Concentrate on your relationship with the brother who has kept in touch. Above all, keep close to that friend of yours who went to the hospital with you.
Try to look forward and make sure you get the best of whatever treatment you may need. We cannot undo the past but we can try to make our present happy and contented. As for the future, none of us knows what it will be. In reality, there is only the present day and we have to live it fully. I hope you are getting some sunshine as it makes us all feel better.
Thinking of you and sending warm thoughts.
Sylvia xxxx
0 -
Sylvie - your thoughtfulness and consideration for all of us on this thread is so amazing. You are such a source of comfort and knowledge and always seem to have the right words to say. Thank you so much for all the time and energy you devote to this site!
0 -
Good evening everyone
Sylvia, I have been thinking all weekend about your question concerning fish oils etc and I have to conclude that I just don't know. I have come across similar research a decade ago and I have followed many of the regimes but it made no difference to me. Fivd years ago a big one was turmeric however it was found that once it reached the stomach all benefits were wiped out. As for the research on fish oils; to me there is a contradiction; they say the southern European diet is superior yet Latino women are more likely to get TNBC. So as the saying goes, go figure.
I think. we should eat, drink and be merry, in moderation. Eating the best diet in the world will not do any good if an asteroid hits the Earth.
I am in a bit of a gloomy mood tonight as my bones ache from Neupogen injections.
Michael
0 -
Michael - sorry you are feeling blue today. Neupogen will do that for you!! I take tumeric but not in capsule form, I take the ground turmeric with black pepper and olive oil. I have heard that the capsules are not absorbed well at all, so I am trying it this way. I am at the stage where I am willing to do all it takes to prevent the cancer from coming back. It can be discouraging at times, but we must carry on and do our very best. I like you comment about "eating the best diet in the world will not do any good if an asteroid hits the Earth." So true. We do need to keep things in perspective.
I am taking fish oils in capsule form every day - mainly because they are anti-inflammatory and research has shown that chronic inflammation is not a good state for the body to be in.
0 -
Hello adagio,
Thank you for your kind words. We have made this together a very different thread and I am so proud of all of you that post. We do a lot of thinking together!!!
I do not really know if any of the supplements we are taking are doing us any good. There always seems to be something new on the market that is supposed to work miracles and they seem to go in and out of favour. I remember when I was in Canada that oat bran was the miracle cure for all ailments and then another time it was prunes! As for supplements they go in and out of favour. At the moment it seems to be that omega-3s are the wonder pill. I think we do have to eat healthily but even if we do there are obviously no guarantees that we are not going to get awful diseases. I really think that modern living is somehow destroying the natural mechanisms of our body and that our hormones and genes cannot cope. They have not changed since the cave men!
I hope you have a good week.
Best wishes.
Sylvia xxxx
0 -
Hello Michael,
Thank you for your post. I was sorry to hear that you are feeling a bit gloomy but I can understand that you are feeling low from the Neupogen injections. Aching bones must be awful. Perhaps a dose of sunshine will help. It is a nice spring day here in Exmouth, but I have to go to the dentist's.
I do agree with what you said about fish oils and turmeric. I am wondering what the experts will tell us next.
I am not sure whether TNBC statistics include Italian women. When I have read about TNBC it mainly seems to be that the information is that Afro-Americans and American Hispanics seem to get TNBC more than white Americans, even though on the whole the Afro-Americans and American Hispanics have a lower rate of breast cancer than white Americans. Who knows?? Statistics can drive you mad!! Look what the politicians do with statistics to make themselves look good! Do we know what the statistics are like in Spain, Italy, southern France, Greece etc. It may all have to do with lack of sunshine and vitamin D. The emphasis now seems to be on vitamin D deficiency being one of the causes of breast cancer. We do need sunshine but we do not need hours of it and sun-block may be doing more harm than good. Ten minutes in the sun without sun-block is all we need.
I agree with you that we should stop worrying and get on with enjoying life. We never know what is going to happen to us on any given day.
I hope you will start to feel better soon and you know that on this thread we shall all support you as best we can. Remember that song Always Look on the Bright Side of Life. Keep smiling.
Fond thoughts.
Sylvia
0 -
Hello netty46,
Thank you for your PM. P53 is a gene. If you look up the following link you will find all the information that you need.
http://breast-cancer-research.com/content/4/2/70
I am assuming you are triple negative as far as receptors go, but it is difficult to respond in a meaningful way since there are no details about you. What kind of breast cancer do you have? Where are you with your treatment?
I am beginning to think that pathology reports are perhaps doing more harm than good since they are full of information that patients find hard to understand and are meaningful to the medical people treating you. You will cause yourself a lot of anxiety going through all these details. What you need to know is the kind of breast cancer you have, the receptors, stage and grade and what combination you will need to bring you to no evidence of disease and in remission. You should concentrate on this. Whatever the pathology report says, no one knows which way their cancer pathway will go. Live the day and do not worry about the future. You do not need stress.
I did not see my pathology report, but was told the prognosis was not good because I did not have hormonal positive receptors. I am still here and fine nearly eight years later.
I do remember being told that P53 was a gene that can somehow become silenced, allowing cancer cells to proliferate.
As for ki67, this is a cancer marker. You might like to look at the following link.
http://breastcancer.about.com/od/tumormarkers/f/ki67.htm
Again, knowing this ki67 might be another source of unnecessary anxiety. If it is high what can you do about it?
All these things, if they are worrying you, should be discussed with your oncologist and breast cancer consultant.
Please let us know what stage you are at with your breast cancer treatment. In the meantime, take care, eat well, get some gentle walks, get rest and above all avoid stress and worry and keep away from too much information. I do hope this will help.
Best wishes.
Sylvia xxxx
0 -
Hello Everyone,
This thread is very quiet, so I hope this means you are all getting through the week without too many problems. Do you think that TNBC has now come out of the dark ages and that we have all the information that we need and perhaps have too much information now that causes a lot of worry?
Thinkong of you all.
Sylvia.xxx
0 -
Hi Sylvia, for me, I need information in small amounts. It takes me awhile to process all this new scary stuff. When I get the courage, I read more. Thankfully there are some very inspirational women on here! I know that I'm starting to think long term more now, but what worries me is recurrence. I caught my lump in between mammograms at which point it was already 2.3 cm. I'm trying to focus my thoughts on the current as I still have one chemo to go
then surgery the second week of June.
Hoping everyone is enjoying the start of spring and fairing well with treatments, Shari0 -
Hello SLV58 (Shari),
Thank you for your post. You are wise to absorb information in just small amounts otherwise everything becomes a muddle and does more harm than good.
For you at the moment the most important is to get through your chemotherapy and to do all you can to keep short term side effects to the minimum with the minimum of extra medication.When you have finished that part of the journey you can concentrate on the next part.
Do not fill your mind up with worries about recurrence as that is something that may never happen to you.
You have nearly finished chemotherapy and will then need to concentrate on surgery.
Wishing you well.
Sylvia.xxx
0 -
Hi Sylvia
I was diagnosed in 2000 stage 1, IDC, TN, 1.6cm, grade 3, clear nodes had to go back in and get clear margins . I had 8 mths CMF and rads. No scans ever.
June 13th 2012 cancer comes back to the breast reconstructed breast. I had diep flap in 2005. No i never had a masectomy but I did have half a breast with no nipple after my lumpectomy. So I run to my surgeon and he immediately operates the next day even with a clear cat scan. There it was 3cm same kinda cancer. I was scanned and scanned and scanned. Pet, MRI, MRI breast, Cat Scan, Bone Scan then again during chemo. My docs said Complete Path Response and NED on December 12th.
My surgeon said she did not find tissue with cancer and my nodes were clear. She said she checked my ribs and went deep down to make sure. Because there had been a question of wether it was chestwall but I never had masectomy only lumpectomy. She said she did not see anything to indicate chestwall.
My radiation on oncologist was very very positive lady. She told me 12 yrs is a big plus and so is the complete response. She actually discussed me with one of the biggies at Duke University I was shocked she had time to speak of me. But she told me that there has been a study and a new subtype found of women who recur very late and have no sign of desease spreading. I have come across a few here and that is in fact the case.
I was very emotionally distressed. Nightmares every night for 11 mths. Im trying to take it easier now. When I was done with Rads I ran too the Carribean for a week.
Next week Im meeting with a doc from Oxford Univeristy in England . He gives the Amino Peptide shots here in the U.S. It boost your Tcells/Immune system etc. Lots of Pharm companies are racing to make something like it as I am sure you have read.
I will add it was a delight not knowing about TNBC years back. I was done and life so much easier. But now that this TNBC is out it makes it so much stressful and scarey. In 2000 I was treated with the girl with Breast Cancer now its this thing.
So thats my story!
0 -
"Do not fill your mind up with worries about reoccurrence as that is something that may never happen to you." Sylvia, I needed your good counsel to Shari this morning. I want to type this sentence in large print and put it somewhere I"ll see often.
I've been harboring many fears of recurrence since my recent post-op pathology report and meeting with my breast surgeon. I have been almost as anxious as I was when I was first diagnosed. I have to take into account that my breast surgeon is more of an alarmist than my oncologist. I moved up my appointment with my oncologist to review my post-op pathology report. I see him April 30.
My grown daughter suggested I type up a list of questions and send them to him this week in advance of the appointment so as to perhaps have a more productive appointment.
Yesterday I went through hundreds of past tnbc posts and in addition to my four major questions to send to him I added about ten more that came out of reading the information-packed entries. Last night I e-mailed his assistant with these questions, asking her to see to it that he gets my path report together with these question in ample time to respond in our April 30 appointment. That's the best and most I can do with regard to gathering info until I get feedback from him. When I get his feedback I will share what is useful here.
In the meantime I am working on exercising and changing my eating habits and have accomplished quite a bit of change in this regard. I, like many other tnbcs, consider the right food and the right amount of exercise as equivalent to the targeted therapies such as tamoxifen available to our hormone positive sisters. And there are no negative SEs to contend with using this approach.
I need to keep in mind the prayer "God give me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."
The days I am most at peace I substitute with going to the "Just Diagnosed" forum where I started in late October, and providing support to those who are struggling with their diagnosis for the first time.
Well, I'm off to wash the organic greens from the first farmer's market this year in my area and to do my morning exercises and household chores.
I hope that everyone here is not worrying unnecessarily and that they have a peaceful rest of the week.
Peggy0 -
Hello netty46
Thank you for your post and for giving all your information, as it makes it so much easier to know what to say.
It must have been a great shock for you when your cancer came back in 2012. It just shows all of us that we do not know what can happen to any of us, but we have to learn to live in the present, enjoy each day and not worry too much about the future. The positive side for you is that you had twelve clear years during which I hope you enjoyed a life and that you put breast cancer in some dark corner most of the time.
The good thing about this recurrence in the reconstructed breast is that you have been through treatment and come out of it successfully with a complete path response and no evidence of disease six months later. There is no reason why you should not continue along this successful path. Concentrate on the excellent path report and the NED.
I was very interested to know that your oncologist had said there had been a study and that a new subtype had been found of women who recur very late. I must admit I have never heard of this and am not quite sure what your oncologist meant. I would be interested to know how many women who have had a recurrence after a long time have been studied and tested and how they differ from other women with negative receptors or even positive ones. Where would the cut off point in terms of years be? As far as I know, a recurrence within a few years, let us say three, is early recurrence, so is everything after that late recurrence? It seems to me that lots of women could have a recurrence at any time with no sign of spread. If there is spread, would they not be told that they have metastatic breast cancer?
I can understand the emotional distress that you went through with your cancer coming back after twelve years. I imagine it would be similar to the emotional turmoil that we all go through when first diagnosed. Perhaps being diagnosed a second time might be worse, because we know what we have to go through and we may think that we cannot go through it again. However, we humans are very resourceful and we somehow find the strength to face whatever we have to face. Quite honestly, what other option do we have if we want to stay alive? I can imagine how you went off to the Caribbean for a week to put it all behind you.
I was very interested to know that you are meeting with a doctor from Oxford University, in England, next week. Is he a medical doctor or a research doctor? I have vaguely heard of amino peptide shots but do not know how current they are or anyone who has had them. How many do you have to have? Is this another big money-making scheme? Let us know more about it if you can.
I am sure it was much easier for you back in 2000 when I do not suppose TNBC was mentioned as such. It was not mentioned as such in 2005 here in England when I was diagnosed. I was merely told that I was ER- and PR-, that Tamoxifen was no good for me and the prognosis was not good. Sometime later I was told I was HER2- and that was a good thing according to the experts. It was my own research that made me ask my medical team about TNBC, and basal-like breast cancer, along with a lot of other questions. My consultant answered all my questions and was pleased to do so, but told me that, in general, her patients did not want to know anything and just wanted to get treatment.
it is true that all this new information brings a lot of stress and fear, but it still does not alter the fact that whatever type of breast cancer we have, whatever the receptor status, whatever the stage or grade, lymph node status etc., we are all women with breast cancer and have basically the same treatment offered of chemotherapy, surgery and radiotherapy, with the possibility of reconstruction. Those with hormonal receptors have the added help of Tamoxifen, aromatase inhibitors and/or a monoclonal antibody, such as Herceptin. Those are the facts we have to live with.
Thank you for telling your story so well.
Keep well. Thinking of you.
Sylvia xxxx
0 -
Hello PeggySull (Peggy),
Thank you for your post. I think we all need to keep that sentence about recurrence before us in large letters.
As I keep saying, worrying about things that could happen in the future does us no good. It just increases our stress levels and our cortisol levels and does us a lot of harm. A good saying is Always Look on the Bright Side of Life!
Let us know how you get on with your oncologist on April 30th.
It is quite a good idea to send any questions you have before you go for an appointment, so that the person concerned has time to look at them and answer them. I did that with my breast cancer consultant when I was first diagnosed and she actually wrote the answers against my questions and went through them. They were, back in 2005, basic questions but she seemed surprised and impressed at the same time and told me my questions were all very scientific and that usually patients did not want to know anything.
If you want, you could post all your questions that you have ready on this thread and then compare the answers you get here to those that you get from the hospital.
It is good that you are helping others on the Just Diagnosed forum.
It is obvious that you are trying to help yourself and that is all we can do. Our diet and exercise are very important. I also think relaxing and laughing is an excellent tonic.
Thinking of you and wishing you well.
Best wishes.
Sylvia xxxx
0 -
Hi Sylvia: My doctor heard about the subtype in Texas in December at the big conference they have there. I have met alot of women here and asked if thier recurrence as spread and it has not . They are out from the first alot of years.
In regards to the Amino Peptide. A pharmaceutical company just put one out for prostate cancer.(FDA approved) the men are on them already. These shots are made by a laboratory according to your cancer and tcells, cd4 count etc. . Once you meet with the doctor it takes the lab 6 weeks to get your shots after reviewing your cells. There are also alot of trials going on regarding Amino Acid peptide. I tryed to get into one but you had to have an infected lymph node.
Dont think its a money scheme. As he turned someone away that I know. She was on meds and she would not stop them for the time and therefore the shots will not work. There are 10 shots. You are tested in between if test show that its not working on your Tcells then they will be stopped. I have read alot of postings from patients that had thier shots stopped because of a viral infection, meds they were on, or the shots would not work on them. If it were a money scheme I doubt very much the doctor would stop injections or turn away patients.
The doctor is a immunologist. The point of the injections is too get your immune systeem /Tcells fighting any foreign bodies it might encounter. Its thier belief that a weak immune system allows these cells to develop into cancer as it has been said we all have cancer in us.
0 -
Hello everyone. Firstly can I just say how much I admire all of you, for sharing your own life experiences and for the objective advice contained herein. Life can be so hard at times that I truly believe talking with each other is one of the healthiest things we do!
As for me, the second tumour turned out to be a benign cyst. All those weeks/months of tortuous worry...all adding to stress.
Exactly ten days ago, my husband told me he was leaving me; I am not attractive anymore (yes I have lots of unnecessary scarring that's just hideous). Anyway today he announced that he's paid his deposit on a 2 bed roomed flat and is moving out next month! Twenty years gone, just like that. I think it was finding the second tumour that finished him with it all. So yes I am devastated but I spent my entire married life doing everything for him. I have completed his 'bucket list' and will have no money to begin my own (if I could remember what was on it)!
Anyway I truly believe that stress is a huge factor in this disease.
Before being diagnosed with TNBC I ate majoratively organic food. It didn't stop a 4.5cm cancer showing up in the course of a day!
A friend's mother told me that knowing so many women with such an aggressive disease, she identified the common denominator as being those who did so much for others and who held in their own emotions. I was 45 when diagnosed and her description is just who I was. She on the other hand, is well into her sixties and if she's not happy she has been known to throw a plate or three! She's gone through a whole dresser before and paints when the need to express herself arises.
I am not advocating ruining your dinner service, but here I am, having given the best 20 years of my life to a man who has it all. He's leaving without so much as a pause. I have out-lived my usefulness. I was a fool!
If nothing else, please keep a part of yourself happy and be true to your feelings. Don't bury them the way I did.
Thank you all for giving me my first chance to open up...finally. Being with you and thinking about you all, has helped me tremendously. I am so sincerely grateful.
In your darkest moments, know that someone is thinking of you. Never lose hope and try to be as positive as you can be. Helping each other is a source of great strength, especially when we need it the most.
Thinking of you and hoping your pain will lessen and that you carry hope with you.
Sam xxxx0 -
Sam,
You sound as if you are successfully working through your husband's decision to abandon ship. You are gaining insights into your own way of being in the marriage (all give not much get back ), putting others's need ahead of your own, keeping your emotions stuffed.
In my divorce initially I had a lot of insight into why my husband left me (I now think who cares why he left?!) but it took some time to see my own part in the marriage that hurt me(I truly believed at that time that I was unloveable). So, maybe because of your current cancer struggle, you are having an accelerated rate of insight about yourself that will stand you in good stead for the rest of your life.
I know that may be small comfort when you're feeling the wolf at your door financially and you're struggling so hard with our shared illness but I just want to say I admire you.
Peggy0 -
Hello Sam (from one 'sam' to another!)
Let me first say how delighted I was to read that your results showed a benign cyst! You must be so relieved.
I am so sorry you are facing yet another challenge through the behaviour of your husband. Trite though it sounds, you will be better off without him.The loss is very much his.
I do agree with you that stress can be majorly implicated in a cancer diagnosis; a contributory factor, not a direct cause.Like you, I have always put other people's well-being before my own, but it is very difficut to do otherwise sometimes.
You have articulated your postion and your feelings so well; you sound a very strong person (maybe now you have become so),and I am sure will find happiness - you surely deserve it.
Your words have really touched me.
There is strong support from all of us here.
sam x
0 -
Hello Sylvia
I am sorry yet again that I have taken so long to reply to you; I am still up and down to the Cotswolds to be with my father every weekend and am very exhausted with it all.I spend hours at a time on the phone to various nurses, doctors, social workers, occupational therapists etc.On Tuesday there will be a case conference at the hospital,to discuss my father's return home,to which I have been invited; they have been very understanding at work and allowed me to attend the meeting.
I will reply to your questions about medication for osteoporosis when I have more time; I am still very unsure about taking anything 'chemical'. The only reason I did consider Zometa is because there is research suggesting that it also helps to prevent bone mets.I think I will ask my bc onc friend in Sweden for his opinion and see if he has any evidence in favour of zolendronic acid (zometa) or strontium ranelate/ or citrate.
With love,
Sam x
0 -
Thank you Peggy, Sam52 and of course Sylvia and Peter,.....actually, this heartfelt gratitude goes out to everyone here;We're in this together!
A few things I feel I should have mentioned, but was remiss in doing so:
My oncologist told me that Taxanes (Docetaxel in my case) was the drug used in chemotherapy to help prevent the cancer from returning! I had a severe reaction and only had the one dose. Even now, I still have joint pain from taxotere.
Also, having been totally against radiotherapy throughout my treatment, I was told (after the cancers were removed) that if I didn't have radiotherapy then the chance of preventing recurrence was 25%, but with the IMRT (intensity modulated radiotherapy) the statistics grew to a whopping 75%...how could I refuse? Only I wasn't told the whole story. Like everything else, I had to find out the hard way.
Every time re-construction was discussed, I was repeatedly told how difficult it is to treat the irradiated side...Truly, I have grown into some sort of dragon every time that old chestnut (no pun intended) is wheeled out. I am scarred horrifically, but most importantly, unnecessarily. Not once did I awaken from surgery with the results that had been discussed. Please make sure that your 'informed' consent actually includes the information!
My first surgeon is an eminent one, specialising in onco-plastic surgery. I do have the utmost respect for him, but he genuinely forgets what he 'informs' me of what he is going to do. It was upon his recommendation that I see a plastic surgeon, that I have ended up having to travel to London. I am so badly scarred on both sides, I could see my husband wince if he so much as glanced at me.
Oh one thing more about the oncologist...my treatment was delayed while he took off on holiday. During my sessions (yes I had to drive myself the 64 mile round trip every week day for four weeks) the oncologist came through the department doors and without breaking his stride, he called my name out as one of the clinicians followed him. He hadn't told me that I was due to see him but I went into the room behind him. My head was racing...is there something wrong? Have they found something else? All sorts of catastrophysing thoughts were swimming around my head.
The 'outcome' of that so-called 'appointment'? To inform me that a lady who was receiving exactly the same treatment, had died in the local hospital !!
It was only when I spotted a service station on the way home, that I didn't recognise that the sat nav showed that I was 59 miles off course. Lost.
So please believe me when I convey my heartfelt gratitude. All of you have inspired me, advised me, shared your honest opinions with me and allowed me to vent my spleen about what is happening to me.
I Agree that my husband does not deserve me and that is a seismic shift in my belief system! OK he's had everything he has ever wished for, but that stops NOW. I just need to find a way to keep sane when he moves out. I don't want to be a gibbering wreck.
Twenty years just don't disappear ...at least not for me.
Another thing you were absolutely spot on about; he didn't go to the doctor as promised.
No he doesn't consider that he needs counselling whatsoever. The arrogance of the man.
Despite promising that he would help to pay for the new furniture (we chose it together, a month ago) and also for landscaping that I am not fit to do and a new burglar alarm, he actually suggested that I use money in my savings account ( there to help pay some of a huge mortgage) for all of it. The interest I earn, currently covers the mortgage payments.
For the first time, I said "no" , calmly, but with a good dollop of determination.
I will be seeing a solicitor on Monday and my precious friend has re-arranged her work (again) so that she can take off a few hours to support me. My brain is fried so hopefully she will catch the bits I miss. Yes I am scared of being out on the street, but I know that you have enabled me to admit that, not only to you, but also to myself. I'm terrified!
You have all enabled me to open my eyes. I may not like what I see nor how I feel, but at least now I can begin to get the professional help that I need. It may not be earth shattering news but at least it's a start.
I know that I will be plagued with self doubt along the way. I guess it will take quite some time to grieve the loss of my marriage. But I have no time to waddle in self-pity and have never been one to tolerate negativity.
So bless each one of you for your amazing support.
I wish you happiness and laughter, but above all hope for the future and that you each can find the strength for the hours, days, months and years ahead.
May you all remember that you are in my thoughts. Whatever pain you carry, I am here for you too. Just one of so many.
You help me to get through one day at a time. I was so lost and in shock, but you made me realise that I am still in here somewhere and gave me a map of friendship to guide me. It may sound a little corny to some, but put that aside for a minute and just stop and think "How cool is that?".
Sam X0 -
Hello netty46,
Thank you for your post. Let us hope we hear more about this sub-type discussed at the conference in Texas last December. This still puzzles me. If you study women who have been diagnosed with whatever kind of breast cancer, and with whatever kind of receptor status, you will find them with different situations after the initial diagnosis, or so it seems to me. Some will still be clear of cancer, some may have a new primary, some will have a recurrence on the original site, some will have signs of cancer in other organs far from the breast, often in the lungs, liver, bones or brain, and these will be spread from the original breast cancer and will be metastatic and known as secondaries. If these cancers in the distant organs are new primary cancers, then they will be known as lung cancer, liver cancer, etc. If it is being said that a woman who has recurrence many years after the primary belongs to a new subset, I would like to know what there is in her breast cancer that differs from all the other women with breast cancer who are still in the clear after many years and how can anyone know that in the future those women will not suffer from a recurrence.
I have looked up amino peptides and found the following link, easy to follow and interesting. It is:
http://www.livestrong.com/article/546238-the-benefits-of-amino-acid-and-peptides/
I also found a website that lists the foods you should eat to get amino peptides in your diet. It does not seem that difficult. The link is:
http://www.livestrong.com/article/527224-how-to-increase-peptides-by-eating-food/
I can understand that some people will not qualify for these shots. Whenever a person is being treated with whatever kind of medication etc., a doctor will need to know their medical history anything that is likely to cause problems. Many medications do not mix and cause a lot of complications to patients. I have friends and relatives who have had terrible problems from taking statins and have been fine as soon as they stopped them. You cannot be too careful.
I do believe that your immune system has to fight continually the cancer cells that we all have within us. My consultant told me that a very healthy person like I was can develop cancer because their immune system has become lazy because it has not had to fight any illnesses over their life.
Fond thoughts.
Sylvia xxxx
0 -
Hello Sam_UK,
Thank you for your post. It is true life can be very hard at times and it consists of good and bad periods. It certainly helps to talk with others and get all that is worrying you out of your system.
The good news for you is that the second tumour has turned out to be a benign cyst and I am so glad for you. There could not possibly be better news than this. I do not think it was right for your medical team to put you through all that stress. Surely they could have aspirated the tumour straight away and seen that it was a cyst. Many years ago I had a lump in my left breast, went to the GP, was referred to a consultant who aspirated it and saw that it was a cyst. He referred me for surgery to remove it, but it was quite small by then but he said it was best to be rid of it. It was done under local anaesthetic.
I can understand all the distress that you are going through with the break up of your long marriage, but I think you are well rid of this man and should celebrate that you are cancer free and that you can re-build your life and if you want to find a man who will love you for what you are and not for what you look like through illness that hit you through no fault of your own. Look forward with hope and not backwards with regret. Try to smile and say good riddance! You can do this. Try not to look on the past twenty years as wasted, as we can do nothing to change the past, but we can learn from it and make a new life. I am talking from personal experience as I have been through marriage breakup many years ago, had to start my life again from nothing and went through two years of terrible stress and unhappiness, but I got through it. I met someone else and started life anew. I am sure that on the thread there are many others who have had to remake their lives and have found happiness.
I do agree with you that stress is a huge factor in this disease, whatever the experts say. I think stress messes up the normal working of the hormones in our body and that the genes are affected by this and everything starts to malfunction. We have to try to rid ourselves of everything negative in our lives, especially negative people and laugh at life as best we can, as it is very short and is over before we know it.
I have read a lot about the kind of people that develop cancer and I also agree that it includes a lot of selfless people who are always helping others, do not know how to say no and always put themselves last. Perhaps the Greeks have the right idea when they smash up all those plates!
I am so glad that all of us on this thread have been able to help you. Keep posting and let us know how you get on.
Thinking of you.
Sylvia xxxx
0 -
Hello sam52,
Thank you for your post. You know that I am always glad to hear from you. I do understand that you are going through a difficult time with your father and how exhausting that must be in addition to your work. I do understand how exhausting all that time is on the phone with all the 'experts' as I did some of it with my mother. I shall be thinking of you on Tuesday when you will be at the hospital to discuss your father's return home and I know you will not let yourself be intimidated by these 'experts'.
I know a bit about all this because I helped one of the neighbours in my apartment complex with a similar situation. He had multiple sclerosis and was managing with a struggle until he had a fall. Raymond and I noticed that his lights did not come on after dark, and since we had an emergency key, we went to investigate. We found him almost comatose and got the paramedics and ambulance. After that he was in hospital for a long time and then went to a rehabilitation centre for a while. He was then brought home for a day with the occupational therapist etc. to see what could be done to allow him to return home. We were invited to attend with one of his daughters who lived a long way away. I thought the whole event was a bit of a farce. Anyway, he ended up coming back and had carers three times a day but they were not that useful. They were financed by the NHS and could only spend a maximum of thirty minutes each visit. This meant they could do very little. The carers were young women and they did not really have a clue! We and his cleaning lady really looked after him. He started to deteriorate and he died last May in our local hospital to which he had been admitted.
Concentrate on your father at present and we can sort out the osteoporosis problem later on. I can fully understand your reluctance to taking anything chemical. If you can, read the book Your Bones. It is an amazing book. I am taking the strontium, but only the natural one (citrate). I am not sure I am doing the right thing, but I know that bisphosphonates and strontium ranelate are lethal and are not for me. I am not sure how I am going to know whether the strontium citrate is working, but according to the book I mentioned, DEXA scans are not very reliable. There are urine tests and blood tests that are apparently more reliable. I may mention the strontium citrate to my oncologist when I see her, but I know she will only be in favour of 'brand' medication used by the medical establishment. I think strontium citrate is safer than the other options and is natural, whereas ranelate is artificial and is another big money maker. Ranelate does not exist in nature. It is another money spinner for the pharmaceutical companies.
It has been a very cold day here in Exmouth, with a nasty biting north wind. We did have a few milder days and I did some gardening, but I find I have to be careful about standing too long after the problems with my foot. Nature is coming into bloom despite the weather, but everything is very late this year.
I hope all is well with Tom.
Thinking of you often.
Love.
Sylvia xxxx
0 -
Hello again Sam_UK,
Yes, it is very frightening when a relationship breaks down, but there is life after it. Make sure you get a good solicitor who will defend your interests. Make sure you keep that good friend by your side to get you through this. You will be able to sort this out financially and find a way of keeping a roof over your head, even if you have to downsize. Whatever you do, be firm with your husband and be strong in his presence and determined to get what is best for you. You could join some social groups and get out and about. Even though you will grieve, you can try to hide it and let the message be that life goes on and that you will not sink because of him.
Wishing you all the best.
Sylvia xxxx
0
