Calling all triple negative breast cancer patients in the UK
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Hello Liv again.
It is 6:30 pm here and I have been busy on the thread for quite a while, so I shall be taking a break soon. I shall look out for sheerjoy on the thread and she is more than welcome to post. It is so much easier that having lots of threads and the main two are this one and Calling all TNS. I am sure everyone can get information, encouragement, comfort and support from these. Anyone is welcome to post here.
It has been a miserable day and everyone is moaning about the damp weather.
I hope you have a good night's sleep. You have incredible energy.
Love
Sylvia xxxx
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To all - I "used" to be fit - and with my christmas present from hubby, I am attempting to become fit . . . NEVER KNEW I HAD THESE [SORE] MUSCLES! (chuckle, chuckle, tee-hee)
The weather in West Virginia, you ask? We are in the "middle" of the state, and somewhat south and west of the weather patterns that hit Ohio and Pennsylvania to our north, and to the "mountains" in WV where snow is always present in winter. We have not rec'd much snow at all through this "season". We have had LOTS of rain over the past couple of days/weeks . . . and it is very cold . . so, I believe we COULD BE in England ! ! ! from Sylvia's description ! ! I love snow and beautiful white landscapes . . . I am not a skiier or skater or outdoor sports person - I just like to LOOK at it, by a fireplace, with a quilt, and a warm cup of food . . . .
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just a while back i was asking if my cancer spreads, mets, would it be a differenct type of cancer, just found this and i find it a bit confusing, definitely conflicting where it reads
diagnosed with breast cancer lets say stage 2 then it mets to bones, this reads your still a stage 2 with mets.
what do you think, any input appreciated.
xx
From The American Cancer Society website
"An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed - information about the current extent of the cancer is added to it.
For example, let's say a woman was first diagnosed with stage II breast cancer and the cancer went away with treatment. But then it came back with spread to bones. The cancer is still called a stage II breast cancer with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones, it's called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it's not called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it's first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current state of the disease.
This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer."
So, if I understand the above correctly, one does not progress through the stages like grades in a school. One does not become stage IV simply because one has developed metastatic disease. What you are staged when you are first diagnosed remains your stage for life. If you do develop distant metastasis, you don't "graduate" to stage IV, you remain at your original stage, with a qualifier added that says you, now, have metastatic disease.
Questions: Does this mean that a stage II breast cancer patient who remains NED for several years before developing metastatic disease has a better survival outcome than someone who was stage IV out-of-the-gate? Or are the statistics more favourable for a stage IV patient? How important is this distinction? How does it impact survival statistics, if at all?
"... good girls never made history ..."
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jenn, it doesnt really change anything, just sounds a littler more palatable..it all sucks the same,no matter what terminology they mark it with.
so by the sounds of it, your swaying more towards chemo first. funny you say that about breast removal. if anyone was more paranoid about the thought of having a mastectomy it would have been me but i think one reason i found the whole thing mentally and physically ok is that i had implants put in prior to diagnosis and can say the mastectomy was much easier and less painful.
and now being able to have such wonderful reconstructions, i have no fear of another mastectomy.
decisions decisions you poor thing ((hugs))
thoughts
xx
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How did you know your chemo had stopped working? It's amazing how you knew that, before the doctors. We all seem to know our own bodies so well! And tumor markers are very beneficial when someone is going through chemo, as they show the response to chemo therapies. I had my marker done after chemo, and then it was done 6 months later, on my annual visit - so in my case, we did it as a baseline after chemo, so my situation is slightly different.
What number are you now? It sounds like you are getting excellent care! How did you find out you had breast cancer?
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Hi Everyone!
There is a new app out called: Gympact.
You can get paid to work out. You pledge at least $5 for each session you say you will do for the week. Then if you don't go, you will get charged. Those who are charged, at the end of the week Gympact reconciles the charges and distributes the funds to all those who met their goals. From someone working out 3 times a week it looked like they made $16 for the month. I work out 7 days a week now, but am under pressue to reduce it to 6 days, due to me over-doing it on the 90 minute workouts. I will change it up some. I started with treadmill and my knees started hurting, so I switched to the EFX machine. On a really good day, I can get in 15 miles in 90 minutes. On a sweaty, average day I can get in 12 miles in 90 minutes. But I am thinking of reducing the EFX to 60 minutes, and other 30 minutes being completed on the treadmill on a high incline to build leg resistance.
At any rate, if you don't like working out (this is totally me), try Gympact. I haven't done it yet, as I don't have an i-phone yet. There is also an app that records your miles and donates money to charity based on your workout. I don't know what that is called, but so excited to see these helpful apps for all of us. I get scared when I don't work out, but know working out is essential. I just make sure to get in 10 hours a week. I missed today, so that means I have some ground to make up for it the rest of the week (darn it!!!).
Have a great week everyone!
- Need exercise inspiration: Try the "Let's Post our Daily Exercise" forum
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jenn you had such a good path report with a low chance of 2% recurrence and obviously they would have thought they got it all.
so only the new tests will show if its mets or a new primary, which are you thinking/hoping it is?
yep dont worry about mastectomy, its a walk in the park compared to chemo. not recommended but i was driving the next day and amazed at not having any pain at all. they didnt even give me antibiotics and had panadol forte for pain which i didnt need.
the only restriction, annoying thing is you cant lift your arm above your head but if you get straight into the exercises you become quite flexible within a week.
thoughts,
xx
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hi debra -inspiredbyD -how i found out is - had just got back from overseas and had implants put in. massaging them every day, felt a tiny lump above my nipple and thought it was the fold of the implant buckled..didnt go away, went to Dr's put on antibiotics end of january. two weeks later still there becoming hot and itchy, back to dr's more antibiotics, three weeks later really itchy hot and sensitive. dr sent me for ultrasound, results huge haemoglobin, back to same dr said doesnt know whats happening and sent me for fna..they wouldnt do it as breast was too swollen and said that i would have to go under to have biopsy. changed drs and this dr put me on even stronger antibiotics and sent me to a top breast cancer specialist. had to wait 2 weeks for an appointment. he had look and diagnosed once again stronger antibiotics and wanted me to have punch fna but it couldnt be done straight away had to get an appointment the next week. back to my local new dr. she was amazed that he said i had to wait so long for fna so there and then she sent me to emergency in our major public hospital. its now over 3 months of antibiotics.
breast doctors, 6 of them came along and had a look and said its a major infection and that i would have to go home with yep more antibiotics and come back with an appointment to be admitted which could be another 3 months on the waiting list.
i cracked it there and then, said i was not leaving unless i had a biopsy and refused to leave. that night the breast surgeon came to see me, (had been admitted) he had a look and again was told an infection and ordered a ultrasound. next morning breast surgeon had results, large haemoglobin and had decided to put me under and go in and if necessary will take out the implant. a few hours later that day, breast surgeon returns and says 'had another look at your ultrasound and tells me he is a bit worried what he saw and was sending me down for a punch biopsy and mammogram" HOORAY at last!!
that same afternoon a few friends were visiting as were my parents. he boldly comes in and declares.
"bad news" you dont have an infection you have a very aggressive breast cancer called IBC and its triple negative.. shock horror confused disbelief. had the implant removed the next day and started chemo 4 weeks later. here in australia they have no idea about IBC...those breast implants more than likely have saved my life up till now. it was never picked up on mammogram.
and how did i know the chemo had stopped working.. started as 2 cm lump. by the time i started chemo it was a large 6cm. responded well to chemo at first, redness nearly all gone, not itchy or hot, the mass felt a lot smaller and the node above my collar bone had shrunk.
after the 4th chemo my breast started to itch and was inflamed again. mentioned this to nitwit oncologist and she looks at me with "wtf" are you talking about. got to 5th treatment , still itchy and burning, had some nodules appear around the nipple, all classic symptoms of ibc. reaching the 6th treatment was lying on my side and the mass of cancer was so large it was hurting as it was stabbing/pressing into my other non cancerous breast.
after chemo finished had been booked in for mastectomy 5 weeks later, on the fourth week i went into the hospital without an appointment and demanded they take my breast off now, that day. got along well with the breast surgeon and he agreed that it was definitely growing at such a rapid speed he would take it off the next day. he did and i got a new onc wich i love and he immediately put me on more chemo. he took off a whopping 10cm tumor.
new onc had a look at my scans bloods and recent path from mastectomy and stated "yep it definitely stopped responding to chemo after the 4th dose"
my previous nitwit lady onc would not do marker tests, only at the beginning when first diagnosed they were elevated at 400., then 3 months in they had dropped to 220. currently they are 75.
now i put any marker tests that i feel may help.. but ran into a bit of trouble. i buggered up, put cea and a couple of new ones on form last time and when i got to do bloods, the blood detective looks at me and says" what is this and points to one that i had written down" in shame i start sliding into my chair and say because i know i have been caught out.'oh dont worry about that one"
he says ' ill ring your onc' noooooooooooo dont worry i say ive had it done it should be crossed off, luckily for me his offsider realises that ive put it on there & saves me and tells him just cross it off' he then proceeds to tell me that it was a marker for prostrate cancer - guilty!!!!
disgustingly it took nearly 4 months to be diagnosed.
how about you debra where are you at now? any chemo/hormone meds? notice you had a double mast just recent. how were the expanders? what size were you before and what size are you now?what type of implants did you get, saline or silicone, tear drop or round? are you happy with the outcome? would love to hear all.
xx
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my sisters i strongly urge anyone not to be their puppet. be aggressive if you need to be.
dont settle for not sure, not confident, not enough treatment - whatever you think you deserve, get it.
when in doubt yell scream demand that your needs or concerns are addressed and if your not happy, either get another opinion or move on and get another specialist that you trust and believe in.
if they knew all the answers there would be a lot more of us cancer victims around.
i believe we are mostly guinea pigs, thats fine but if its not working change it!!
hopefully we have some light in the tunnel with research sooner than later.
luv you all, thats one thing good about cancer the bond we have -
keep talking to each other with anything that you feel or need, silence is deadly!~
~~~~~~getting off my butt and going for power walk...mwahhhhh
xx
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Good morning to everyone. I have been trying to catch up with all the posts.
My brother is very ill in hospital in england. He has numerous health issues and is recovering from his third heart attack and pneumonia. He is in Harefield Hospital, the main heart hospital, and receiving excellent care.
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bernie thats no good, thoughts and good wishes for him and you and great to hear getting excellent treatment.
take care.
x
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have a look at this...just the voice makes me smile!
'its a great day for me to whoop somebodies ass'
video>> www.facebook.com/photo.php?v=2...
xx
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I must report "success" with making a camisole from a slip as described and instructed at http://mastectomysolutions.com/. I am going to make the microbead foobs as well - haven't gotten to that. I constructed the camisole tuesday evening, and wore it all day with my "heavy" foobs yesterday - no problems whatsoever with discomfort in the normal areas created by elastic in other undergarments purchased. I have the cami on today as well.
I am very encouraged that there is a comfortable option. I will say, though, when trying it on on tuesday evening, I put in only one foob, and looked at my side-profile from left and right side (one without foob, one with) and because I was an "A" cup before surgery, and purchased (expensive) small foobs, the difference is NOT that great . . . logically, I should NOT be noticed . . .
I said all that to say - I am still struggling with the decision of going flat all the time . . . I am resting in the decision every day being much like what clothes I care to wear that day - flat or not - just depends on the mood.
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Hello Bernie.
I was so sorry to read that your brother is very ill in hospital in England and I do hope he will be alright. I know that you are a very caring person and that you will be worrying so much about all this. I do not know Harefield Hospital, but I think that he will be receiving good care if he is in a specialist hospital. Do you have any other brothers and sisters? I hope you do, because it is easier to deal with serious illness in a family when you can all get together.
Please take care of yourself and let us know how your brother progresses.
Fond thoughts.
Sylvia xxxx
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Hello FernMF, Liv, & Debra.
I have been reading your posts and was glad to see that the three of you are having a good old talk. That is definitely what the thread should be about.
I read with great interest the article you posted about stages and breast cancer. I can see what the American Cancer Society is getting at, but I cannot see how it helps the patient. I think there may be a lot of confusion on the threads here, because I have definitely read posts where the patients have been at say stage III and then have metastases and say they are stage IV and so they are going to switch to the stage IV threads to be with others like them. I was stage III when diagnosed, so I assumed that if I had spread I would be stage IV, but now having read the article, I would be stage III with metastases. All I know is that if you have metastases whether it is at diagnosis or after years of being in the clear, you can be treated but not cured. I find that a bit confusing as well, because I do not consider myself to be cured of cancer. All I say is that I was told I had no visible signs of cancer after treatment, and at my check ups I am told everything is fine. As yet, as far as I can see, there is no cure for cancer. Is that not what the “big conversation” is all about, a cure or cures for cancer?
I do not think it is of any use to worry ourselves about statistics. I remember a conversation with a friend of mine, a retired nurse, about DCIS and she said that DCIS was not considered as cancer and was not included in breast cancer statistics. In fact, a friend of hers was diagnosed with DCIS and had to push for surgery to get rid of it. Apparently some say that DCIS is a pre-cancerous state that may never develop into full blown cancer. It is all very confusing.
It is also confusing about TNBC, because TNBC is about receptor status. For example, you can have invasive ductal carcinoma (the most common breast cancer) and can be TN as far as receptors are concerned, or triple positive as far as receptors are concerned (ER+ PR+ HER2+), or most commonly ER+ PR+ HER2-, which I think is called luminal.
Please do not drive yourself mad with all these factors. If you are diagnosed with breast cancer, do not be afraid, sort out your treatment, cope as best you can and after treatment live as normally as you can.
That is it. I have finished preaching. I shall go and put the kettle on to make some tea (green of course). In the UK putting the kettle on is the national remedy for alleviating all problems!!
Liv, I hope your friend, sheerjoy, comes and joins us.
One last word to FernMF. Why not try lightweight prostheses. I wear one for my missing right breast and most of the time I forget it is there. People would not know that I am wearing one. I buy normal bras and flaps from Amoena that I sew into the right cup.
All for now. Fond thoughts.
Sylvia xxxx
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Thanks Sylvia: I have about $350 worth of Amoena products, besides the $400+ FOOBS . . . all that elastic has been intolerable for THIS WIMP! The cami I made is the ONLY thing that hasn't been uncomfortable by noon (wearing at work). The sales lady at the ONLY store in the whole state says my FOOBS are lightweight . . . that's why I'm going to try microbeads, which are $50 each through the "store" or catalog - I hesitate to continue THROWING money at these solutions until I find the right one.
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Hello FernMF.
I think the way I wrote my post may have misled you. I wear the same bras as I wore before my mastectomy and I buy them at Marks and Spencer. They are very light and have a lot of cotton in them. I do not buy my bras at Amoena or anything else with them, except the special cotton flaps that I then sew into my Marks and Spencer ordinary bras. The prosthesis that I wear is provided by my hospital and so is paid for out of the National Health System, to which we all contribute. It is made by Amoena.
What exactly do you mean by FOOBS? Is it another name for a prosthesis? What exactly are microbeads?
I hope this clarifies what I meant to say.
One more day to go before the weekend. I hope you have a good one.
Best wishes.
Sylvia xxxx
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The store owner that provides prosthetics asked if I was ever comfortable in regular bras. And the honest answer is NO. I do not want uncomfortable anything. FOOBS are fake boobies. That word is on a message board called flat rant. Micro beads are completely weightless poly beads - they are "stuffing" for theFOOBS.
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Hi - introducing myself to you sisters in the UK...
my story is not very staightforward. i have er pr negative at first place but my her2 is marked as 2 which is not very clear whether it is negative or positive. so i also have a fish test then confirm the triple negative situation.
it sounds discouraging but this is after bad news one after another after another... so i try not to grinding on it.
anyway, my chemo started on this wednesday. finially my diagonois can draw a conclusion and i dont have to suffer from waiting and worrying... for a while at least.
now i can concentrate on dealing with the treatment. so far the side effect has not hit me hard yet. as far as i know FEC-T is quite 'standard' in the uk and hopefully it works for me as well!
GOOD LUCK to all of us!
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welcome emmal - on the other thread i mentioned you have similar stats to me except yours is the right breast. same nodes7/24 trip neg large tumor, how big is yours?
the worst time is being told and then waiting for treatment, once your into it you just go with flow, have no choice so in that way it does become easier.
glad to hear you havent many side effects from chemo. some of us get really high from steroid meds, i did and then would crash.
this a welcoming place to share, shout, cry, vent, laugh, joke & get advice and hopefully you too will get as much as i have from this thread.
best wishes
xx
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EmmaL: welcome from U.S.A. I'm hoping that you are settling in to "week 1" after chemo, and figuring out how to manage SE's during the first week . . . it is a learning experience, and given the correct tools (which your oncologist should be giving and/or suggesting), you will survive. Depend on Sylvia and others on this board to steer you right with any SE's you have. We have experienced, collectively, "every symptom" out there, so chances are if you need assistance with any particular one, you will receive MANY different options for dealing with SEs. I found this board to be immensely helpful and uplifting during my chemo last summer/fall.
My wish is that you and others freshly embarking on this arduous journey may arrive at the place I find myself. (This doesn't mean I am necessarily a strong person . . . quite the opposite . . . ) I have "done all that I can do" medically, and am attempting to alter my lifestyle in healthy realistic ways. AND, having "done all", I am trusting my creator - "it's out of my hands" so to speak. I desire to be around this earth a long while yet . . . "He's" in control of that now, not me. I find rest and peace in that. [sorry if I have offended anyone who is not of this same faith persuasion]
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Hello EmmaL.
I want to offer you a very warm welcome to this thread. Although no one wants to be here, when we are we help one another and take a great interest in everyone. As a fellow Brit, who initially started this thread back in September 2010, to bring triple negative out of the dark, I would like to give you an extra special welcome.
Please do not worry about the receptor status with which you have been diagnosed and do not take too much notice of all the doom and gloom that is published on the internet. You can get through this and we shall help you all we can.
I hope you will soon know whether you are HER2 negative or HER2 positive. I think the fish test will be able to tell you. If you are HER2- then you will be triple negative and if you are HER2+ you should have the drug Herceptin with your chemotherapy as part of your treatment.
I was looking at your details and I saw that some of them were very similar to mine. I had a tumour that was 6+ cms and it was Grade 3. I was not told the stage but worked out that it must have been Stage III.
I had chemotherapy before my surgery (known as pre-adjuvant chemo) and had six months of it. I had a regime similar to yours. For the first three months I had epirubicin (Ellence) with cyclophosphomide (Cytoxan) every three weeks and then I had docetaxel (Taxotere) for the next three months. I did not have fluorouracil, but I know that it is common to have it with epirubicin and cyclophosphomide.
I think that whatever the receptor status, whether it be hormonal positive or hormonal negative, the chemotherapy drugs are much the same, with the addition of Herceptin for HER2+ and Tamoxifen and/or Arimidex or Aromasin after all the standard treatment has finished for hormonal positive receptors.
Sometimes patients have paclitaxel (Taxol) instead of docetaxel (Taxotere), so you might want to ask what the T stands for in your regime, if you do not already know. Both drugs belong to the taxane family of drugs and are said to be very effective for triple negative receptors.
Are you having chemotherapy every three weeks, two weeks or every week? Having chemotherapy more often is proving to have fewer side effects than having it every three weeks according to those posting on the thread.
The kind of breast cancer with which you have been diagnosed, invasive ductal carcinoma (IDC) is the most common of the various breast cancers and is the one with which I was diagnosed.
Like you, I also had a mastectomy of the right breast with axillary removal. Only one of my nodes was affected, the sentinel node, but seven were removed.
I saw that you had seventeen nodes positive, but I have read that often this makes no difference to the prognosis.
Chemotherapy is often the most challenging of cancer treatments and this is often because it lasts so long, and side effects may build up, but not necessarily. We are all individual and our chemotherapy experiences can be very different. I did not find it too difficult except for fatigue, but I listened very carefully to what I was told.
You should have been told that you will have hair loss and that you have to be very careful not to pick up germs and infection, as your immune system will be suppressed. You should have been told to have a flu injection and a pneumonia injection if you have not had them. You should also have been told before beginning your chemotherapy to have a dental check up and get any dental work out of the way as you will not be able to have dental treatment during your chemotherapy.
You should also have been told to avoid crowds, public transport, supermarkets etc. and anyone suffering from anything that they may pass onto you.
I found that by drinking plenty of fluids throughout chemotherapy but especially just after a treatment, can help a lot, along with getting plenty of extra rest and looking forward all the time.
As far as food goes, I was advised to stay away from all raw foods and seafood for fear of infection. I found that with food I preferred very small meals, but I eat healthily and my weight remained constant. I did not lose or gain weight. I had no nausea or sickness and took only the steroids that were given with che and for a couple of days afterwards and was in no way affected by them. I know that some women suffer badly from the steroids, but I do not know how often they took them.
Some women have sore mouths but there are special toothpastes and mouthwashes to help this. The brand is Biotene.
That is a lot for you to take in but you will soon get into a routine. Please do not hesitate to ask if you have any questions.
You should be having a blood test about the day before each chemotherapy so that the results are there with your team when you arrive. They are looking for what is going on with your red blood cells and your white blood cells. If these are not as they desire you may not be able to have the next chemotherapy treatment. Again, I had no problems with this but some women do. For low white blood cell counts they now give injections of a drug known as filgrastim (Neupogen or Neulasta). I kept my red blood cells normal by taking iron tablets and eating dried prunes, figs and raisins. Before taking anything always talk with your oncologist.
To encourage you I have to let you know that I was diagnosed in June 2005 when triple negative was not mentioned here in the UK. I was merely told that I was ER-, PR just 5%, which they considered to be negative. It was only later that they told me I was HER2- and that this was a good thing. This was at a time when women who were HER2+ were having to fight and go to court to get the drug Herceptin. Now it is available to all.
Keep in touch with with us and let us know how you get on, as we have other people going through chemotherapy.
It is now seven and a half years since I was diagnosed and I feel fine. Remember, you can do this. Do not drive yourself mad trying to find out what caused your cancer. There will not be one cause and none of us will ever know for sure why we developed breast cancer. There are multiple risks, but as I was told, a risk factor does not necessarily mean it caused the cancer.
I was wondering how old you are and whether you are at one of the best hospitals in Manchester.
Good luck.
Sylvia xx
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Hello FernMF.
Thank you for your explanation. I do like it when I learn something new during the day. I may have a look at flat rant when I have more time. I try to concentrate on this thread as I find it can become very confusing surfing too many threads!
Thank you for all your sensible words to EmmaL. We can all help her on her journey.
Thinking of you.
Sylvia xxxx
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Hello everyone.
Another week has come to an end and I hope all has been well for you.
To BernieEllen, I hope your brother is improving and hope you will keep on the thread to encourage those newly diagnosed and going through treatment.
To linali, I would love to hear form you and know that all is well and to have any new information you may have from your cancer centre.
Mumtobe, I hope you continue to have minimal side effects from your weekly chemotherapy treatment. Let us know how you are doing to encourage others who are starting chemotherapy.
Michael, I hope all is well and that work is going well and that you are taking good care of yourself as you prepare for February 4th and your appointment with the haematologist.
To FernMF, thank you for your great contribution to the thread these past few weeks.
Liv, you are a real live wire on the thread and are putting in a great contribution. I hope you are doing alright on the Navelbine.
Kymn, I have missed you on the threads and wonder if all is OK.
JennUK, I hope all went well on Thursday when I think you had a PET scan. I hope all will go well tomorrow with your CT scan. Try to enjoy your weekend with your little boy and then be ready on Monday to get your treatment plan.
Carolben, thank you for your great contribution this past week and I hope we have been able to help you.
InspiredbyDolce, thank you for your always very informed posts. You contribute greatly to the thread.
Triplenegativebutpositive7 (Andrea), I think I am right in thinking that you were starting chemotherapy today on the regime ACT. Let us know how you get on. It would be useful to know what the side effects of the individual drugs are, if you are being told.
carlads (Carla), I hope all is going well with the chemotherapy that you started on January 7th.
Placid44, I was wondering how you are bearing up during your remaining weeks of chemotherapy with Taxol (paclitaxel). How much rest will you have after finishing chemotherapy before having a bilateral mastectomy in February?
Wishing everybody viewing and posting on the thread the very best. I hope everyone is being helped in some way.
Thinking of you all and sending you all healing and comforting thoughts.
Have a good weekend.
Sylvia xx
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Hello sam52.
Just popping in to say that I hope all is going well with you and that you had a nice weekend with your father. I hope you are not going this weekend as I think it is very snowed up in Gloucestershire. I saw film of Stroud on the news today. There is a lot of snow in Devon but nothing in Exmouth so far.
I have been trying to get check ups on several things these past two weeks to start the year off on a good footing. I saw the dentist and spoke to him about dental x-rays, as I read about them again recently in the magaazine What Doctors Don't Tell You. He agreed that radiation is dangerous but the exposure is minimal with the bite wing x-rays. It still bothers me that people are getting brain cancers from this exposure. He did say there was no risk to the thyroid, because he covers you with a protective pad.
I saw the GP and had a talk about hyperparathyroidism. She said that if you have normal calcium levels you will not have elevated parathyroid hormone. I do not think I agree with her.
I am still waiting for a date about a DEXA scan.
I went to the optometrist. I was glad to know I have no problems with my eyes.
What are you reading these days?
Love.
Sylvia xxx
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(not sure about the MUSTS bit)
Ive personally known full blown organic vegetarians, non drinkers that were here and gone within 6 months of diagnosis and on the flip side have seen people that do absolutely nothing by the book and are still around after 10 years.
- suppose it is common sense to try eat healthy and exercise - i actually do 90% of the time.
my motto is a little of everything in moderation!
i still have coffee & research is now saying that coffee is healthy for us, the last decade it was an outter,
still have red wine when if i want one, lean meat, sweets - rarely but if i wanted i would.
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edited: source:
Breast Cancer Prevention Musts
A healthful diet, regular physical exercise, appropriate sun exposure or oral supplements to optimize your vitamin D levels, and an effective means of managing your emotional health are the cornerstones of just about any cancer prevention program, including breast cancer.
Regular physical activity has been shown to decrease the likelihood of developing breast cancer, as well as decreasing your chances of dying from it by 50 percent, once diagnosed.
It is also important to watch out for excessive iron levels. Elevated iron is actually quite common once women stop menstruating. The extra iron works as a powerful oxidant, increasing free radicals in your body and thereby increasing your risk of cancer.
The best way to monitor your iron is to have your ferritin level drawn. Ferritin is the iron transport protein and should not be above 80. If yours is elevated, you can reduce it simply by donating your blood.
The following lifestyle strategies will help you to further lower your breast cancer risk:
- Optimize your vitamin D. Vitamin D influences virtually every cell in your body and is one of nature's most potent cancer fighters. This is one of the most important steps you can take to protect yourself from cancer.
Vitamin D is actually able to enter cancer cells and trigger apoptosis (cell death). When JoEllen Welsh, a researcher with the State University of New York at Albany, injected a potent form of vitamin D into human breast cancer cells, half of them shriveled up and died within days! The vitamin D worked as well at killing cancer cells as the toxic breast cancer drug Tamoxifen, without any of the detrimental side effects and at a tiny fraction of the cost.
If you have cancer, your vitamin D level should be between 70 and 100 ng/ml. Vitamin D works synergistically with every cancer treatment I'm aware of, with no adverse effects.
I invite you to watch my one-hour free lecture on vitamin D to find out what your optimal vitamin D levels should be and how to optimize them.
- Get plenty of natural vitamin A. There is evidence that vitamin A also plays a roll in preventing breast cancer. It's best to obtain it from vitamin A rich foods, rather than a supplement. Your best sources are organic egg yolks, raw butter, raw whole milk, and beef or chicken liver.
However, beware of supplementing as there's some evidence that vitamin A can negate the benefits of vitamin D. Since appropriate vitamin D levels are crucial for your health in general, not to mention cancer prevention, this means that it's essential to have the proper ratio of vitamin D to vitamin A in your body.
Ideally, you'll want to provide all the vitamin A and vitamin D substrate your body needs in such a way that your body can regulate both systems naturally. This is best done by eating colorful vegetables (for vitamin A) and by exposing your skin to sun every day (for vitamin D).
- Avoid charring your meats. Charcoal or flame broiled meat is linked with increased breast cancer risk. Acrylamide—a carcinogen created when starchy foods are baked, roasted or fried—has been found to increase breast cancer risk as well.
- Avoid unfermented soy products. Unfermented soy is high in plant estrogens, or phytoestrogens, also known as isoflavones. In some studies, soy appears to work in concert with human estrogen to increase breast cell proliferation, which increases the chances for mutations and cancerous cells.
- Improve Your Insulin Receptor Sensitivity. The best way to do this is with exercise and a diet comprised of foods appropriate for your nutritional type.
- Maintain a healthy body weight. This will come naturally when you begin eating right for your nutritional type and exercising. It's important to lose excess body fat because fat produces estrogen.
- Drink a quart of organic green vegetable juice daily. Please review my juicing instructions for more detailed information
- Get plenty of high quality animal-based omega-3 fats, such as krill oil. Omega-3 deficiency is a common underlying factor for cancer.
- Curcumin. This is the active ingredient in turmeric and in high concentrations can be very useful in the treatment of breast cancer. Concern must be addressed with the solubility though as it is not well absorbed. However it does show great therapeutic potential in preventing breast cancer metastasis.
- Avoid drinking alcohol, or at least limit your alcoholic drinks to one per day.
- Breastfeed exclusively for up to six months. Research shows this will reduce your breast cancer risk.
0 - Optimize your vitamin D. Vitamin D influences virtually every cell in your body and is one of nature's most potent cancer fighters. This is one of the most important steps you can take to protect yourself from cancer.
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Hello EmmaL
I forgot to say that before I started chemotherapy I had an appointment at the chemotherapy ward with the nurses and they just asked me a lot of general questions about my health, took my blood pressure and explained a little about chemotherapy.
I also had an electrocardiogram before and after chemotherapy and my heart was normal on both occasions.
Have you had any scans? I had a CT scan and a bone nucleide scan on diagnosis and at the end of treatment.
I did not have a port during chemotherapy and did not have any problems with veins, but a lot of women do when they have a cannula for their IV treatment. Have you been offered a port? There are various ones.
Enjoy your weekend with your little boy.
Best wishes.
Sylvia xx
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Hi all, happy weekend!
Jenn thinking of you, good luck with your onc on Monday! Sometimes all the positive talk just doesn't do it. I had a wonderful GP at the Onc Clinic and one visit I was really down, in the middle of chemo, and I'm saying how I know I'll come out of this whole thing stronger and wiser and I have lots to be grateful for etc etc, and she said "All that's bullshit - you've lost a breast, lost your body image, lost confidence in your body, lots the health of your body, lost confidence in your mortality, you're going through chemo - what's to be grateful?!" It was the best thing I could have heard and just made me laugh.
Fern, I've not heard the terminology FOOBS, love it - have been too unorganised as to what I want to do regarding my boob and not boob, and do the bare minimum, but am small breasted, so even a snug yoga bra that flattens my remaining boob sort of works too. I have heard of Micro Chips and have seen the instructions for making a FOOB with them - would they work in a swimsuit?
Liv, my remaining breast looks so sad at times, or is that me putting my feelings onto it. Sad, little lonely thing. Sometimes I look at my flat side and think it really looks spunky and neat. Other times the flat side is my tough, hard, unforgiving side, and my breast side is my soft side. I kind of need a bit of both the tough and the soft. Sometimes I'd like to have the other one off too, for symmetry, but the thought of another surgery is too much at the moment - I felt mutilated after my mx - didn't know what to expect, such a long scar! Although it is a really good scar -even and flat.
EmmaL, welcome to a loving, kind place. Good luck with your chemo. Sylvia gave you much good info, I read up on all the info on this site and got so much help. Starting with chemo was so scary for me - my thought of chemo was laying on the bathroom floor, puking and pulling out lumps of hair! It was the scariest thing to come home and just wait to see what happened! My best beloved sister was here with me, which helped so much. I didn't have many side effects from the first chemo, it was progressive. I was so happy my sister was with me when my hair started to fall out - exactly as they said it would, 2 weeks after my 1st chemo. I didn't throw up once although I was horribly nauseous for the first 5 days, there are so many good drugs available now to manage the side effects of chemo. At the onc clinic there was always a nurse available on the phone to talk to about funny stuff happening to my body, and she could advise me when I needed to get to hospital or not to worry or to take x, y or z. I hope you have a good support system and people you can lean on for a while.
Sylvia when you say you are 5 years etc in the clear - when do you measure that from? From the end of treatment or from your first "all clear" checkup? Wednesday and my first checkup is near now, am trying to go with the philosophy of not thinking about it as much as I can! Ha ha. What will be, already is, and I'll know what it is on Wednesday. I've heard that hair goes back to how it was originally after a few years - I'm fine with that too - it wasn't nice loosing my hair, and it's a sign of returning health to me, watching it grow - it's all crazy and does just what it wants, but it's hair!! Mine came back pretty much the same colour - silver grey mostly! Thanks for the reassurance regarding the IBS - it seems like chemo picked up on all my body's weak points and accentuated them. I have a flare up of mouth ulcers again now, not bad, and I do have a range of mouth washes and creams to use, which does fix it. My nails took a knock too and are still very brittle and the nail beds have receeded. But that's all small, if annoying stuff, I know I'm getting stronger, and yes, it's not the time frame I want or expected - this is all taking a long, long time, but at one stage just walking 100 yards on the beach was a huge feat! Now I work full day, play ball with my dog, either have a swim or do yoga at least 3 x a week. And yes, there are days when I don't do more than just get through work, feed my dogs, feed myself, shower and get to bed, and I'm allowing myself those days. I think I err on the side of doing too much rather than too little, and tend to push myself quite hard. I'm learning that it's not only ok, it's necessary to have lots of time out, to rest, to do inconsequential things, and not feel guilty. That hasn't come naturally, by body tends to just yell - enough! and I have to listen!
After a great day on Sunday and Monday I had a horrible migraine on Tuesday, which really knocked me, and that's just insult to injury - I've had migraines since I was a kid (Grandad, Mom and my son also got them), and extreme physical shock or stress does seem to trigger them, as well as hormones and regular stress. I guess my hormones could also be a bit strange because I've started getting hot flushes AGAIN - they were practically over before the BC, dammit!
Anyway I've been feeling pretty whacked and am happy it's Friday and I'm not working tomorrow! Gives me time to go swimming and have a smoothie with a friend. Then there is a 20 over cricket match to watch in the afternoon - my all time favourite! South Africa vs New Zealand. Just love watching cricket and rugby. Liv, I've got to tell you that the Aussies are our arch rivals in cricket - and rugby too!
Hope you all have a good weekend and may good health return and may good cheer see us through, except when we need to rant and rave and cry!
Love to you all
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Hello Liv.
Thank you for your post and that most interesting article. Can you tell us the source of it, as we have to be careful to quote the source.
I agree with what you say, but still think that when all is said and done it is the luck of the draw for most cases.
We can do everything to help ourselves and that is mainly through a healthy diet and keeping active physically and mentally.
Remember that not all vegetarians have a healthy diet and can be consuming unhealthy foods, especially lacto-vegetarians. It is only my opinion but I do not think dairy products are healthy.
You were asking what we had had for dinner. We usually have some fish or a soy vegetarian product, with a variety of vegetables of all different colours and a carbohydrate, such as Basmati brown rice (low glycemic) to which I add turmeric powder as it is cooking. I vary this with whole grain couscous or quinoa. Quinoa is high protein and is supposed to be very healthy.
Best wishes.
Sylvia xxxx
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Hello Carolben.
Thank you for your most interesting post, which I shall answer during the weekend, as I have had a long day and feel weary.
I just wanted to say that I was diagnosed on June 20th 2005 and I count from that day, so it is now seven years, six months and twenty-eight days. I shall be able say seven years and seven months on Sunday January 20th. I think you must have got five years from the introduction on this thread, which I started on September 12th 2010. I think it was my consultant who told me to count from the day of diagnosis.
I know that others may count differently. The most important is that we are all surviving.
Talk to you soon. Fond wishes.
Sylvia xxxx
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