Calling all triple negative breast cancer patients in the UK
Comments
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Just stopping by to say hello to Sylvia and everyone! This is such an informative thread and much appreciated! I hope everyone is feeling good. I go back and forth! SOme days I feel good and then others I am very tired. Trying to even out my schedule so I can feel good most of the time!
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Hi Sylvia and everyone! I had my second last chemo yesterday and everything went well, although last time my thigh pain didn't kick in until 3 days later. I also had a vey much needed conversation with my MO regarding the fear I have been feeling over what I was starting to think was aggressive radiation treatment. I really like and trust her and wanted to see what she thought. One sentence was enough for me to feel much more at ease with the planned rads. She said, "Shari, the way your disease presented we need to hit it with the most aggressive chemo and radiation treatment to ensure you the best chance of no recurrence" I really didn't want to hear this as I think because I feel so good-I was in denial as to the seriousness of this, BUT I really needed to hear it. I have another apt. set up with RO to go over my questions and concerns and will now be thankful for my team getting out the full artillery for me! I will deal with whatever SE as they come up and if I get lymphedema I have decided that I'm not going to let it take away my enjoyment of golf-even if it means I can only drive 50 yards!
Sorry for long post, I just wanted to update as everyone has been so supportive-thank you! Shari0 -
Sylvia,
I'm very interested in when and what and how Iscador helped. Were you taking with chemo? How did you find out about it. Did you need a perscription?
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Sylvia,
I'm very interested in when and what and how Iscador helped. Were you taking with chemo? How did you find out about it. Did you need a perscription?
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Deciding on Radiation
My treatment plan at the beginning, after all the biopsies, was neoadjuvant chemo (DD, AC/T) followed by mastectomy.
There was never any discussion of radiation with this plan.
While my tumors shrank considerably from chemo and I have had the double mastectomy and immed direct to implant reconstruction, my BS is now (as of yesterday) asking me to see a radiation oncologist for a consult because although my tumors shrank considerably, I did not have a complete pathological response. i am going to talk to my MO about this. But I am truly distressed.
I tolerated my chemo very poorly and was nauseous throughout the 2 months of AC. They never could control it. I had bone pain and am still having significant neuropathy from the taxol. I actually had the double mastectomy because I couldn't imagine going through chemo again. The only thing that kept me going at times were these boards and the light at the end of the tunnel (finishing surgery and reconstruction).
Now I'm being presented with another tunnel (possible radiation) and I feel bereft. Had I thought rads were going to be part of the picture I would have delayed reconstruction.
I am 61, happily married with a six year old grandson. I love my family very much. My husband looks years older than he did at the beginning of this ordeal, however. I feel bad for him every time I see this change.
You would think I would do anything to save my life but after this treatment, I'm not at all sure I will undergo anything else except for discipline exercising, eating well, and getting carefully monitored.
My surgeon thinks that the RO will be very unlikely to recommend rads, but i'm guessing the opposite. I have followed doctors orders in spirit and to the letter. I am tired of being brave.
I hope to have the courage to go against medical advice at this point, if the advice is an arduous course of radiation.
I would very much like to hear from people who turned down at least part of their treatment while going along with other parts. How they chose, if they had regrets or not, anything relevant.
I am seeing a therapist, on antidepressants, etc. I don't believe this is the depression talking, but that strong part of myself that says enough is enough. If I can live a quality life, and take responsibility for any negative repercussions of my choice not to undergo any more treatment (I.e., mets and a reduced life expectancy) is this not reasonable?
I welcome any and all input.
Thanks,
Peggy0 -
Hello everyone, thank you again for such wonderful support!
I took a good friend with me to my appointment yesterday and she is an absolute rock. I don't think I would have gone, had she not been with me...was still feeling unimpressed by the somewhat glib attitude on Monday, where the plastic surgery took precedence over a new lump.
Well the surgeon thought that it was gristle from the scarring that I have, but still sent me for an ultra sound scan...the short version? I ended up having a core biopsy and won't know the results until next week.
I have been thinking about what has been said and have to agree that my husband has a lot of problems...have been thinking it's either depression or another woman. He has an odd reply about the latter, as all he says is " where would I find the time?". Will make an appointment so he can talk to a doctor and it's up to him if he goes to it or not. Then at least I will know that I have exhausted all avenues.
I don't know what his response will be, but could it get any worse?
Appreciate any thoughts you may have.
Still a bit shaken by the core biopsy...no needle aspiration just straight to the 3 core samples.
Hope you are all feeling better and have an enjoyable weekend. You are in my thoughts.
Sam0 -
Hi Sam,
Possible good news about the lump. That has to be a relief if the surgeon is correct? I am glad you took a friend with you and it made it so much easier. If she is your friend maybe you can talk through your problems with her about your husband?
If your husband decides to go to the doctors then there may be hope for your marriage but I really cannot see him going from what you have told us if he has been like this for years. Atleast you will know 100% were you stand if he does not go. It sounds to me he is happy to have someone that does everything for him at home like an unpaid worker while he is out working? Does he enjoy him work?
Many women think they have no choice but to stay in a loveless marriage but there really is a better life out there which you deserve after everything you have been through. We only get one life and you have to make the most of it.
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Hi Peggy,
I'm Peter and my wife Liz decided at the start to have the same surgery as you. After reading up we found out that up to 30% of people that had implants and radiation therapy afterwards had to have them removed as the Radiation affects them? The 30% seems high. Liz decided not to have the reconstruction as she wanted the radiotherapy.
You can decide exactly what treatment you have as we did with the chemotherapy. Liz is very sensitive to any drugs and we knew Liz would struggle with 6, 100% doses so we reduced them, something the nurses had never heard of happening before. We do not regret it for one minute. As Liz said I know my body better after 40 years than any doctor. Liz did struggle with chemo compared to a lot of others that went through it at the same time.
You do have to live with any decision you make but your close family has to live with it as well. It is something you and your husband have to be happy with.
On the positive side Radiation therapy is so much easier than chemo.
I personally think everyones path is set as far as cancer is concerned. If your body is weak were cancer is concerned I beleive it will get you. I have read were some people really should not survive more than a few months but are still here years later with all traces of the cancer gone, but then others that has a very early stage of cancer, has all the treatments but it comes back and takes them within a couple of years. It really is a horrible disease that no one completly understands.
Do not worry about your husband that is the last thing he would want you to do. It is horrible to watch your partner go through cancer but I am sure he would say compared to what you are going through it is not as bad.
Liz went and saw a hypnotherapist to get her through surgery and the chemo and I can tell you it made a very big difference to her. We are both very logical people, we do not beleive in religion, crystal healing or anything else that cannot be explained and we were not sure if hypnotherapy would help but it made a big difference.
Peter
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Hi Sylvia,
I am more than happy to post and tell people of our experience of cancer. Liz and I always have opinions whether they are right or wrong is another thing but everyone is different.
Once I have taken Taylor to school I have nothing to do. Liz does not get up until around 9am as she still has trouble sleeping and suffer hip joint pain sometimes.
I find it helps to talk about it and is a therapy in itself. All our friends are surprised that we have a very light hearted attitude to cancer but you have to try and laugh at it as you cannot change it what ever happens in the future.
We love Devon and I have holidayed there for the last 40 years since the age of 8. We prefer North Devon but also love the steam train at Goodrington, Paignton. About 13 years ago we used to drive down from Norfolk and set up at the markets through the week at Paignton, Dawlish, Brixham and onto Cornwall for the Thursday market. We did this for the 6 weeks through the school summer holidays.
Regards
Peter
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Hello Peter and Liz, thank you for your response to my post.
I found my husband his current job which involved us moving to Hampshire from Manchester. He loves his job and I know from what he has told me so many times in the past, that affairs are rife.
The core biopsy concerns me as they didn't bother with a fine needle aspiration just straight to 3 core samples. When I returned home from London (becoming increasingly expensive) I told my husband about the biopsy and he just disappeared upstairs...so I went to bed. Five minutes ago I got this text from him from work:
''Hi, it is very difficult at the minute with waiting for tests and what I have said to you. But I do need to tell you what I am intending to do re moving out and looking to find time when you are ready to talk more. Not sure if you had plans to see your friend or anything. I am sorry that you feel this is such a rush. But delaying this is going to be much more unbearable. Please let me know what you think''
I'm in shock all over again. He knows that I was told if the cancer came back then it would be terminal and it was only Tuesday that he told me he ''will have to start looking for a place'' which was a complete bolt out of the blue.
I am sorry to lay this on you guys but since they made a mess of me and I'm scarred on both sides right the way under each arm, almost reaching my back and have the inframammary crease now across my right breast (where the tumour was), I do look horrific. It was supposed to be a lumpectomy with a bilateral reduction only the surgeon didn't make me even. He said that he couldn't ''in all good conscience cut away healthy tissue'' so left me lop-sided. Trying to make me symmetrical has involved a lot of surgeries, not to mention being resuscitated in October because they missed the post op haemmoraghe.
I'm terrified. If it's terminal I hope it's quick. Twenty years of my life are being erased. What kind of person must I be that my husband would practically run from me when I need him most? He told me not long ago that I was a wonderful person with a heart of gold...and I was shocked then...but this...I am lost.
I am sorry to mention such negative things that cancer has brought to what is left of my life. I don't wish to bring anyone down so perhaps I don't belong on this forum when I should be showing encouragement to others and helping them.
I'm trembling. I'm so scared. Thank you all for listening to me and for your kindness when you did not have to extend such warmth to me. It means a lot to me.
I wish you all the very best of everything and a long, bright future.
Sam x
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I found the article on omega3s most interesting - I feel it is one more thing that we can do independently of doctors and know that it won't harm us in anyway - this is so encouraging.
PeggySull - I had a lumpectomy and at times wished I'd had MX to avoid the extra treatments like radiation - but as it turned out I most likely would have needed the radiation regardless because my tumour was close to the chest wall. Radiation is more gentle than chemo - however, it is not without its own problems. I want to do all I can do to prevent the cancer from returning - if it comes back, I am not sure that I will do any further treatments. This is a very tough journey that we are embarked upon. You will know what the right thing to do is when the time comes. Just wait until you see the RO - it will all be explained to you. Thoughts are with you during this difficult time of decision making.
I completed radiation #18 today - only two treatments left. No blisters yet - just a red breast and it is itchy at times. I am using calendula cream which is very soothing. My final 4 treatments are "boosts" which are directed at the incision site - it is a much shallower form of radiaiton which is supposed to zap any rogue cells on the tumour bed. Praying that it will do just that!!!
Hope you all have a wonderful weekend.
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Hi Peggy,
Here is a good website that Liz looked at http://www.breastfree.org/ She said she found it useful.
Peter
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Hi Ladies, haven't checked in for some time but thought I'd give a quick update. I had my 7th chemo last Wednesday (5th Taxotere). The day before that I saw my Onc and she was pleased with how the breast looked and felt, she believes the Taxotere is still doing it's work so she agreed we'll be doing 2 extra, so now I have 3 more to go still (original plan was 4x FEC then 4x Taxotere which then changed to 2x FEc then 6x Taxotere) so now will be 8x Taxotere. As long as it's still doing what it's supposed to I have no problems with that. Have the appointment to meet with the BS on May 28th, 2 weeks before my last chemo so I will get the plan for surgery then. Met with my Radiologist last week too, do not like her (mannerisms, personality etc), however, she is the best there is at this facility so I will suck it up, if I have to deal with her to get the best care then that's what I have to do. Anyhow, as expected it is taking a bit longer after each Taxotere to "bounce back" so I am just now finally catching up with things. Hope you are all doing well. Have a great weekend.
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Hi Sam,
I have been trying to think what to write all day and then got sidetracked playing table tennis of all things this evening.
What ever your husband decide to do there will be nothing you can do to change it. I would suggest you sit down and talk with him however hard that is going to be as you need to get everything sorted as far as he and the house is concerned before your results come back next week.
When you get your results back next week what ever the news you will know were you stand with your husband as you do not want to be dealing with him if you have to deal with cancer again.
If you have somewhere to go or someone you can stay with for a few days that should do you good. Its easy for me to say be strong and do these things but I know it will not be easy.
I cannot think of any more to write at the moment but wanted to reply today so you know someone is thinking of you.
Peter
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Thanks Adagio and Peter for the thoughtful responses to my dilemma. I am in awe of how many people put such thought into others problems on these boards.
I am going to push the breast surgeon to call the RO and pave the way for an appointment earlier than I can get as a mere patient. Brachytherapy (sp?) might still be possible since I am only 2 weeks post surgery and that has to be done within a certain period post surgery.
I am trying to channel my anger at the ineptitude of my treatment team into resolve that I will get what I need and if the insurance does not cover it, my son in law is an attorney and some early paperwork from the breast surgeon could lead to a malpractice suit just to cover the costs of undoing their ineptitude.
I'm relaxing this weekend, once I am able to sleep again. I will get my ducks in a row to do battle next week with this incredibly stupid situation. I have my doubts now that my surgeon and oncologist ever talked about my case even though they see each other every Monday on some tumor board. I found out today that my post-surgical pathology report has not been sent to my oncologist.
I know I'm ranting at 3 am unable to sleep. Thanks whoever is out there taking time to read this.
Peggy
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Good morning all,
Its a lovely sunny day here in Norfolk, UK. A bit cold and will only get up to 12C but sunny. Time to get off of this computer chair and get outside. There is grass to cut and a motorhome sunroof to seal as it has a small waterleak.
Well maybe once the Formula 1 qualifying has finished!
Its surprising how much more Liz and I appreciate a nice day and the garden compared to 2 years ago before cancer. Its actually a large lawn as I do not like gardening but I did manage to set some primroses in the ditch we have running down the side of the lawn.
Our son will have a friend round today so thats a day spent in his bedroom playing the Xbox, and Liz will probably go into town 2 miles from us to look round the ever increasing number of charity shops which she loves to do.
Our high street of about 25 shops mainly consist of take aways, cafe's and charity shops.
Hope everyone has a good day were ever you are and if you are going through treatments remember it does get better I know how depressed Liz was feeling last year after finishing chemo and starting radiotherapy with no hair and looking half dead.
Peter
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Thank you so much for thinking of me Peter, it really does help!
Hope you enjoy the beautiful day and know how much you are appreciated.
Sam0 -
Hello bak94,
It was so nice to hear from you and I do hope you will stay with the thread as much as you can. You can be such an encouragement to the newly-diagnosed and those going through treatment. You can motivate them to get through treatment and you can still learn more with all the new information and experiences that come in on this thread. I remember so clearly how you were first diagnosed and remained in the clear for eight years and then you had to start that second journey and got through all of that. I do view some of the other threads so I have been able to watch your ups and downs. I do hope all is not too bad at the moment and that you are living life as normally as you can. I do remember reading that you have had periods of not feeling so good.
I am so glad to know that you find the thread informative.
Fond thoughts.
Sylvia xxxx
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Hello slv58 (Shari),
Thank you for your post and for letting us know how you are getting on with your chemotherapy treatment. I was glad to know that things are going well. Are you taking anything for your thigh pain?
It is good that you had a conversation with your MO about the fear you have been experiencing about radiotherapy treatment. It is wise to get everything sorted out and your fears and concerns expressed. I feel there is nothing worse that sitting silent and just accepting what the experts dish out. I hope you have read the Informed Consent BRAIN that I shall keep posting to remind everyone to be their own advocate and to keep control of their treatment. You are the one with the cancer and you are the one in charge of your body. I am glad that you now feel much better about radiotherapy than you did before.
I think you will find radiotherapy much easier to deal with than chemotherapy. Chemotherapy is very long, the day of treatment is long, and it is long waiting for the next treatment and dealing with any side effects that you may personally have. Radiotherapy tends to go more quickly as it tends to be every day for five days, a weekend break and then five more days etc. The preparation for the radiotherapy and the actual radiotherapy is not that long. I had three weeks of radiotherapy with boosters at the same time and got through it pretty easily. You need to take care of your skin but you should be advised about everything before you begin. I had a pre-radiotherapy interview and then I had another appointment where I was placed on a prototype of the radiotherapy machine and the site for treatment mapped out on my body. Sometime later I started the actual treatment. Do not be afraid. You can get through this. Radiotherapy is often the end treatment of a person's cancer journey and is done to mop up any stray cancer cells and hopefully avoid any recurrence.
The attitude you are taking about keeping your life as normal as possible is a good one. I may be wrong but I thought the risk of lymphoedema usually comes from surgery, especially when there is removal of lymph nodes. Lymphoedema can be treated. At my hospital in Exeter there is a separate lymphoedema clinic.
Ask all the questions you like about what to do and what not to do. Those of us that have been through radiotherapy are here to help you and give you tips based on our own experiences.
For the moment concentrate on getting through your Taxotere (docetaxel) treatment and let us know if you have any side effects that bother you.
When I was going through treatment I found it useful to deal with one part of it at a time.
Thinking of you.
Sylvia xxxx
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Hello 3wishes,
Thank you for your post. You asked me about Iscador. When I was first diagnosed in June 2005 I was reluctant to have the standard medical treatment offered, which was chemotherapy before surgery, mastectomy and then radiotherapy. I was told that I had invasive ductal carcinoma and that the tumour was large, 6+ cms. At that time TNBC was not mentioned as such. I was just told that I was negative for oestrogen and negative for progesterone, so that the prognosis was not good, as Tamoxifen was good only for hormonal breast cancer. It was only later that I was told that I was HER2- and that that was a good thing. I said I wanted to think about things and asked about what alternatives there were. My breast cancer surgeon told me that she did have patients that were not having treatment and that she did refer some of her patients to a consultant who had worked with cancer patients but was now a consultant at the Royal Homoeopathic Hospital in Bristol UK. She arranged an appointment for me. In Bristol I was told they could help me with treatment but that I needed to have the orthodox treatment offered as well. I stayed with that consultant throughout my orthodox treatment and took oral Iscador throughout that treatment and beyond. Iscador can also be administered through injection, but I was advised not to have this because of the chemotherapy etc. I continued on the Iscador for sometime after treatment, with short rests in between. I have no proof whether it helped, but all I can say is that I got through all my treatment fairly easily and took different homoeopathic treatments for every stage of my treatment as prescribed by the consultant in Bristol, whom I saw regularly. I enjoyed my appointments with her, some of which were quite long and I thought she really got to know me. That consultant also lectured on breast cancer and homoeopathy and used my successful case in her lectures, with my permission.
Iscador is an immune booster and is used in Germany in the treatment of cancer. I researched it after I was prescribed it. I was able to obtain it on the NHS here in the UK. A few years ago certain Primary Care Trusts decided to stop funding homoeopathic medicine so I did not return to it but I would have liked to.
I do know that you can probably get this prescribed by alternative doctors. Before I consented to orthodox treatment I also went for a consultation with an alternative private doctor and I know that she prescribes Iscador.
I do hope this helps, but I would not do anything without letting your medical team know. Then it is up to you to decide. I would have taken the Iscador and other medications even if the orthodox doctors did not like it. I do what I think is best for me.
I noticed that you have no information about your particular cancer except that it had negative receptors. Was it IDC or DCIS? What treatment have you had and how are you coping?
Please let me know if I can help in any other way and how you get on.
Best wishes.
Sylvia xxxx
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Hello PeggySull,
I was sorry to read that you are feeling so distressed and you have done the right thing coming here to express your feelings.
I cannot understand why there was no mention of radiotherapy treatment when you were given your initial treatment plan. From what I have read over the years chemotherapy, surgery and radiotherapy are quite standard treatment, especially with triple negative receptors, for which there is no treatment after the standard one. Radiotherapy is usually done to mop up any stray cells and try to prevent recurrence.
It would be useful if any of you out there with triple negative receptors and a tumour of about 2cms had chemotherapy, whether before or after surgery, did not have radiotherapy would post and let us all know.
The women that I know had breast cancer with positive receptors, had lumpectomies and radiotherapy, but no chemotherapy. After radiotherapy they went on Tamoxifen and/or Aromatase inhibitors such as Arimidex. These women told me that they would have had to have mastectomies if there were still no clear margins after two surgeries for lumpectomies.
If I were you I would ask why you were not offered radiotherapy. It would have made sense to have had radiotherapy before getting into reconstruction.
Those who have been following this thread know my own opinions on this matter, as we have discussed mastectomies versus lumpectomies and reconstruction earlier on. We went through every part of the cancer journey very methodically much earlier on on this thread. I did not have any option but even if I had had I would have chosen a mastectomy, because for me personally it offered greater peace of mind. There was no way I wanted to get into reconstruction either, because I felt that it was better not to do this in case the cancer came back. It is only my opinion but I did not like the idea of extra surgery to form a replacement breast. I also feel that if you are going for reconstruction surgery it is perhaps better to have it later when your body has had time to recover from all the cancer treatment. I wish to emphasise that this is a personal opinion.
If I were you, Peggy, I would feel very annoyed that radiotherapy is now being discussed after reconstruction.
I would assume there must be women out there who do have radiotherapy after reconstruction. If there are any of you reading this and have done this, please post. I do know that some women have reconstruction at the same time as surgery and perhaps they then have radiotherapy. I know my consultant told me that breast cancer surgery was a straightforward operation and that my mastectomy surgery would be about forty minutes, but that reconstruction made it a much longer operation.
Try not to worry too much, as I am sure this can all be resolved. I am sure that these cancer journeys do take a toll on our husbands. It must be very frightening for them and many cannot cope and leave.
I do agree with you that the best thing for all of us is to eat well, exercise, get checked, especially when we have concerns, and then just get on with our lives as normally as we can and enjoy our days with our family.
Thinking of you, Peggy, and wishing you well and peace of mind.
Best wishes.
Sylvia xxxx
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Hello Sam UK,
I do so hope that the surgeon is right and that the new tumour is gristle from scarring.
Try to keep busy while you wait for the results of the core biopsy. At least they are being thorough.
I think if I were you I would be having serious thoughts about whether I wanted to stay with a man who had put me through so much, even if I made allowances for the difficult journey that cancer is for our loved ones. I would not let him think that I was at his mercy, that he was indispensable, and that he was calling all the shots.
Why not join a support group or a social group?
Thinking of you and wishing you well.
Sylvia.xxx
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Hello Peter,
Thank you for your post and for all the support you are giving to others. All we can do is relate our own experiences of our cancer journey, spread information, give tips and above all give comfort, support, encouragement and motivation.
I do like your optimistic attitude and I think it is a good one to have. Worry does not get us anywhere. Laughter is a good tonic. We cannot change what happens to us. We just have to live the day. Talking things out or writing them out is good therapy and is certainly better than keeping everything bottled up.
I was very interested to know that you and Liz love Devon and that you have been spending holidays here for forty years. You must have seen quite a few changes. You are right about North Devon. It has some beautiful scenery. I lived and taught French at the Community College in Bideford for a year. There is beautiful scenery around Torrington and I used to enjoy travelling from Bideford to Exeter to meet up with my brother and his wife. Exmouth is a popular place, but not very progressive. It is opposite Dawlish. My husband, Raymond, and I have been here for just over eleven years. We chose it as a retirement place, mainly because one of my younger brothers lives here and we had been coming here for some time. My brother has been here since 1971 and worked as a Senior Lecturer in French at Exeter University, so we know parts of Devon quite well. Another drive we enjoy is the scenic route from Exeter to Tiverton. We also enjoy the scenic drive from Exmouth to Exeter and then on to Crediton, across largely empty countryside to either Bideford or Barnstaple. Any drive through Dartmoor or Exmoor is also very interesting. I must admit we do not go much to Paignton or Torquay as the roads are very busy. I get the impression that a lot of people are moving to Exmouth, both from the South, the Midlands or the North. We are withing walking distance of the seafront.
Hope you are having a nice day. It is a bit cool here today.
Best wishes.
Sylvia
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Hello Sam_UK
I just wanted to say that you must not think that if you have a recurrence it is terminal. There is treatment for recurrent breast cancer, whether it is local, regional or distant. People can live for many, many years with recurrent breast cancer, so please look on the bright side. Wait for your biopsy results and then using the informed consent BRAIN if there is a tumour, find out what your options are. Deal with all this, keep your good friend by your side and help yourself back to stable health.
I am posting a link that will help you get more information about recurrence:
http://www.mayoclinic.com/health/recurrent-breast-cancer/DS01078
As for the problem with your husband, be strong and stand up to him. Do not let him think he has the upper hand. There are plenty of other fish in the sea.
I was interested to know that you live in Hampshire. My husband and I lived in Hampshire for a while before going to Canada, where we stayed seventeen years. Going from Manchester to Hampshire must have been quite a change. Are your roots in Manchester?
Keep looking forward.
Sylvia xxxx
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Hello Sylvia
Thank you for thinking of me and my situation. The radiographer did point out that there is definitely fluid within the pea-sized lump, hence the core biopsy. I am generally a very positive person which I believe can make an enormous difference to anyone's recovery. The personal side of things has been the one thing that has caught me completely off guard and my world as I knew it has changed dramatically. I wouldn't know how to hold a grudge to save myself. I have apologised countless times for having cancer because I do feel a burden of guilt as those around me worry about themselves and their loved ones and it has been my doing albeit out of my control. I am trying to stay positive but then suddenly the reality of it all will just take my breath away. I will support whatever decision he feels is necessary despite the damage to my/our standard of living. I will not nag or whine, but agree that he should do as he feels he must. I have asked him to talk to a GP after making an appointment without asking him first; thankfully he has agreed to go. I can only hope that he receives better treatment than I have had.
The GP we registered with told me that he would rather read 'War and Peace' than read my notes. With the weight gain (not wishing to listen to the oncologist's opinion) I was told that the only way I would lose weight was ''to starve''. Needless to say I sought consultation with a female GP when this 4.5cm lump just appeared within the space of a day. I was told that it would all be a one stop clinic, but it was far from that, let me tell you. I had to work around my appointments because I had developed cancer rather inconveniently in the summer when the consultant surgeon was on holiday. By the time I saw him, the oncologist was on holiday and by the time I saw him, he wanted me to cancel our previously booked 4 week holiday but agreed that reducing it to 3 weeks would be fine. He left me with the advice, that being a TNBC, if it sprouted out of my chest then I was to take the first plane home, no question about it. As you may imagine it was the holiday from hell for me, but my husband was still able to spend 9 out of 11 days diving...leaving me on my own. The sun made my tumour much worse I have to say, making the skin have a very red spider-like spread around the tumour. I was later told that this was because of the 'basal-like' nature of the tumour.
My husband took a panic attack whilst diving which was a first. He was doing his qualification for rescue diving and just had a complete full on panic attack in the water. He had been diving for over twenty years before that happened, so I to be honest with myself and perhaps realise that he has been suffering depression or some sort of stress that has been messing with his head. I can only hope that he can get the help he needs. Yes I'm in shock, yes I'm devastated, but it's only now that he has opened up about the way he feels about all of this and that's a first.
I am culpable insomuch as I always did everything for him. As my friend pointed out only yesterday, I was more of a mother to him, letting him have everything to my own detriment. Cancer is certainly a great leveller...I do want to do the things I dreamed of before, I'd just forgotten what they were! There is mention here about stress being a factor in the possible causes of cancer...well I, like so many others here have had a huge dollop of that in my life. This is the first time that I have done anything about sharing it, as I find it extremely difficult to ask for help. I don't wish to bring others down with me, if something is wrong. I'm very concerned about that. It has been a real wake-up call to hear of so many other women having husbands who abandon them at such a time as this. I find that shocking but at the same time I think having the two men on board is a real boost, being able to hear their point of view and how they feel about things.
I am so grateful to be allowed a voice here; it is almost cathartic to be able to let bits out and yes, sad too to read of other people struggling to understand what is happening to them.
I think the idea of setting up this forum for TNBC was inspired Sylvia. You have enabled so many of us to share parts of our lives that may otherwise have gone unheard. I am not familiar with posting on a forum so please forgive any errors I may have made.
I do so hope that everyone has the best weekend possible and that the sunshine lightens your step a little. Whatever stage along the journey, I am thinking of you all and wish you a speedy recovery and peace of mind.
kindest regards,
Sam
PS. My radiotherapy was IMRT (couldn't locate an allowance to fill this in on my profile). Also had no choice but 'cryotherapy' to try to explain the surgery I had to seal the haemorraghe when I was resuscitated with plasma and units of blood.
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Hello adagio,
You are certainly right. We can all take omega-3s but they are very expensive here. I think we are better off eating oily fish if we can and linseeds. We do not really know what supplements are doing to us.
You are nearly at the end of your radiotherapy treatment. Are you going to celebrate when it is finished?
I have started taking the strontium citrate for my osteoporosis problem. I bought it on-line and the brand is Dr's Best Strontium Bonemaker. You have to take it away from when you are taking calcium supplements, so I am taking it in the evening about 8 pm. It says to take two supplements daily = 680 mg for the treatment of osteoporosis and 340 mg for the prevention. I hope all will be OK and that I shall have no side effects. There are not supposed to be any. I do not know how I shall know whether they are working in the immediate future. I have not made up my mind whether to tell my GP or medical team. They are all so gung-ho for branded medication, despite all their lethal side effects.
I am still reading the book Your Bones and am very impressed with it. There is so much information in it, in addition to how to prevent and treat osteoporosis.
I have learned for example that metformin inhibits the absorption of vitamin B12. I wonder how many people with diabetes or those taking it with breast cancer know this?
I have also learned how important B vitamins are for bone health, especially B6, B12, Folate and Riboflavin.
I came across the mention of the word homocysteine that I have read in other books and that I mentioned to my former GP before he retired and got blank looks! This time I have read that high levels of homocysteine in the body harms the bones, thus promoting osteoporosis and that it also promotes cardiovascular disease. Apparently homocysteine levels increase after menopause and that you need adequate amounts of the B vitamins to control homocysteine levels.
All of this makes me realise that the way osteoporosis is being treated by orthodox medicine is a bit simplistic. It not just a case of throwing calcium at it. At least orthodox medicine is now cottoning on to the vital role of vitamin D3 in the prevention and treatment of osteoporosis, as well as apparently in breast cancer.
In the book there is also mention of oral contraceptives and how they lower blood levels of vitamins B6 and B12, putting pre-menopausal women at increased risk of cardiovascular disease.
I was very concerned to read that apparently many commonly prescribed patent medicines cause osteoporosis. Some of those mentioned are ones to treat epilepsy, anxiety, insomnia, depression, schizophrenia, restless legs syndrome, type 2 diabetes, chronic pain, allergies, asthma and auto-immune diseases. Apparently you need to take vitamin D, calcium, magnesium etc. to counteract this. It looks as though you need a mixture of vitamins and minerals to prevent and treat osteoporosis. Vitamin D, calcium citrate, magnesium citrate, vitamin K, etc. all have to work synergistically. Apparently silicon is important too. A half cup of cooked spinach contains 5 mg of silicon.
We all now know that cancer treatment can affect our bones and that we end up with osteopenia or osteoporosis, therefore it seems to make sense to have a DEXA scan for bone density before we start treatment so that we know what the state of our bones is prior to treatment. we should then have one after treatment. Ho many of us are told that osteoporosis is a possible long term side effect of cancer treatment?
I also read about other methods of measuring bone loss that are probably more accurate than a DEXA scan. I certainly did not know this. There are two tests, a NTX (N-telopeptide test) – this is a urine test and measures the rate of bone loss. The CTX test (serum C-terminal telopeptide) may be even more accurate than the NTX. This is a blood test. These tests show the success or failure of therapy. There is nothing available to show the degree of everyday bone building.
I am going to have to find a way of knowing what the strontium citrate is doing.
To finish, you may be interested to know that there are 24 nutrients needed for bone metabolism. These include vitamin K2, B6, B12, folate, Vitamin D3, calcium (citrate is probably best), boron, magnesium, phosphorous, zinc, manganese, copper, silicon, molybdenum, selenium and strontium.
Treating and preventing osteoporosis seems to be quite a challenge.
I also think that everyone should have an ECG before and after cancer treatment to see what state their heart is in. I certainly had then before and after treatment.
I hope you are having a good weekend over there in Vancouver.
Thinking of you.
Sylvia xxxx
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Sylvia thanks for mentioning that about recurrence. Alot if people write morbid things about recurrence. They will say things like oh mines a primary, mine is small etc. Oh the best mine was receptor positive there are more meds for us.
Alot of women have left this site and can now see why. They say horrible things about recurrence. One lady named orange said once you get local recurrence it's inevitable you will soon metastasize . I mean really !
I have read alot here and size, receptor status, primary, does not mean a thing. After reading stage 4 stories . In fact primary is a new cancer which means on top of the old one you had now you have a new one to worry about. As far as receptor it's just about even when it comes to the stage 4.0 -
Hello Sam_UK,
Thank you for your post on the thread and for your PM. I have run out of time for today but I shall try to answer tomorrow. I just wanted to let you know that we shall all try to help you as much as we can.
Fondest thoughts.
Sylvia xxxx
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Hello Sjesse12345 over there in Edmonton,
Thank you for your post and for letting us know how your treatment is going. Taxotere (docetaxel) is said to be very effective against TNBC. I shall answer in more detail tomorrow, as I have run out of time for today. I have answered a lot of posts. Keep looking forward with your chemotherapy.
Thinking of you. Enjoy your weekend.
Sylvia xxxx
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Hello netty46,
Thank you for your post. I shall be answering in more detail tomorrow as I have run out of time and need to take a break. What you say is so true. No matter what type of cancer we have, or what the receptor status is, the stage or grade, none of us knows where our breast cancer will take us. In a way, I feel glad that I was IDC TNBC and do not have to go on nasty drugs like Tamoxifen and Aromatase inhibitors. I feel that without these drugs I am working on my own through my lifestyle to keep breast cancer at bay, although I realise there are no guarantees.
I shall post more later.
Have a good weekend and enjoy yourself.
Sylvia xxxx
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