Calling all triple negative breast cancer patients in the UK

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Comments

  • adagio
    adagio Member Posts: 713

    I have had 6 radiation treatments and so far so good. The skin is not red yet, but it is getting itchy. Keeping my fingers crossed. At least the actual treatments do not hurt at all. 

    Have a great day ladies - if it is sunny, try to get out in it even for just a few minutes - I find it lifts my spirits!

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987

    That's interesting what the cover of Time Magazine says, when you found it online.  On the actual cover (we bought this copy) in the US it reads:  "A Cure For Cancer*" with an asterisk, and then below on the bottom right corner is a little summary.

  • lolalee
    lolalee Member Posts: 164

    Hi Sylvia and everyone,

    Hope you had a relaxing Easter and were not tempted by too many Easter eggs.

    Our plans to visit Cambodia were cancelled at the last minute as we had to attend a funeral in Queensland.  I returned to H.K. late yesterday and will be back at work tomorrow as today is a public holiday, nothing to do with Easter as that is not celebrated here.

    Hoping everyone is having tolerable and successful treatments.

    Thank you InspiredbyDolcle for the latest information and links, hoping your implants are behaving and healing.

    Adagio, hope your radiotherapy continues to give good results.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello InspiredbyDolce (Debra),

    Thank you for the link that you sent recently. The article about probiotics made interesting reading. I do eat fresh soy yoghurt enriched with calcium and probiotics regularly. Of course I have no tangible proof that they do me any good, but better safe than sorry. I definitely think that anyone on antibiotics should be taking them to replace the good bacteria that antibiotics apparently destroy. I have also read that you need probiotics especially as you get older and the natural bacteria in your body becomes weaker.

    These highlights from the Mayo Clinic Health Letter seem very useful.

    I was interested to read the other highlights especially about breast cancer and how researchers are finding new ways to prevent, diagnose and treat breast cancer. Of course we have to bear in mind that all this is dated June 2009. However, the things we have been discussing on this thread we find repeated here. The need to do about thirty minutes of exercise three or four days a week, to keep your weight under control and loose those extra pounds if you need to. It is especially important to loose weight after menopause. I think we have all got this message loud and clear on this thread. I think we all know about alcohol and the increased risk of developing breast cancer.

    I was interested to read that some cancer organisations are recommending MRI scans for high risk women and that they should be done annually. They do say however that they are not recommended for routine screening.

    I think this is a very useful article and there are more details on it about breast cancer treatment in general. I think the link that you gave us is well worth reading.

    I was interested to know that you are taking CoQ10. I have been reading about this and how there are two different types. One is ubiquinone and the other is ubiquinol. I have read that you need to take ubiquinol. I have checked this in our local shop and looked at the bottles labelled CoQ10 and seen that they also say ubiquinone but that ubiquinol is sold under that name. It is extremely expensive here. My understanding is that it is something in all the cells of our body but begins to diminish as we get older.

    What exactly do you mean by Raw Probiotics?

    Wishing you well.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello adagio,

    Thank you for your post and for letting us know how your radiotherapy is going. I was glad to know that so far so good.

    You are dead right, a bit of sunshine lifts the spirits.

    Best wishes.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Lolalee,

    Thank you for your post. It was good to hear from you. I was sorry that you did not make it to Cambodia because of a funeral.

    I hope you make the most of today before going back to work tomorrow. I shall always be interested to hear your life in Hong Kong.

    Thinking of you.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello everyone,

    I hope that you all had a good Easter weekend wherever you are in the world. The first quarter of the year is behind us and let us hope that as we go into spring the weather will be better for those of us who have been going through all this cold weather, and for those of you going into autumn, enjoy what autumn brings.

    Here in Exmouth we are having some sunny days but it is still very cold. The daffodils are in full bloom and the gardens are one mass of yellow. Everything else is a bit late. The children are on Easter Holiday and the season has started here.

    I hope all of you will continue to post and view and that you will continue to pop in to help and encourage those going through treatment and the newly diagnosed.

    For any Brits on the thread, I noticed the following information in my recent edition of Vita, the breast cancer magazine. It is issue 15 Spring 2013. This information is about a new website that has been launched where you can find and compare NHS cancer services across England. You can search for information by post code, hospital or cancer type. For each service there are detailed reports that explain the quality of the service provided by the hospital or cancer service. The link is:

    www.mycancertreatment.nhs.uk

    This magazine is free and is most interesting. It is full of letters from breast cancer patients and all kinds of articles. It is very easy to read. The link for Vita magazine is:

    www.vita.org.uk

    I regularly receive Vita, published by breast cancer care and feel it is a must read for all breast cancer patients. You might also like to read Amoena magazine, which is also free.

    Best wishes to the Irish group, the British group, our American and Canadian groups, including those in Germany, and not to forget the Australians and South Africans. It would be interesting to hear from New Zealanders and some Europeans.

    Wishing everyone all the very best and thanking you all for your efforts on this thread.

    Love.

    Sylvia xxxx

  • BernieEllen
    BernieEllen Member Posts: 2,285

    In a convent in Ireland, the 98-year-old Mother Superior lay dying.
    The Nuns gathered around her bed trying to make her last journey comfortable.
    They tried giving her warm milk to drink but she refused it.
    One of the Nuns took the glass back to the kitchen. Then, remembering a bottle of Irish Whiskey that had been received as a gift the previous Christmas, she opened it and poured a generous amount into the warm milk.
    Back at Mother Superior's bed, they held the glass to her lips. The frail Mother Superior drank a little, then a little more and before they knew it, she had finished the whole glass down to the last drop.
    As her eyes brightened, the Nuns thought it would be a good opportunity to have one last talk with their spiritual leader.
    "Mother....." the Nuns asked earnestly, "please give us some of your wisdom before you leave us."
    Mother Superior raised herself up in bed on one elbow, looked at them and said, "DON'T SELL THAT COW."

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987

    Well, my cat jumped up and I lost my entire long post that I just typed!  Ugh, trying this again.

    One of these days I hope to be able to keep up with all of you!

    Lolalee, the implants are behaving!  He said he made incisions, and that must have done the trick.  They seem to be really seated better.  I don't feel them raising up when my pec muscle is in use, such as when I'm using my arms to climb into the car.  Very interesting!

    Bernie, loved the joke, when the chicken and the cow showed up at the door.  Ha ha!

    Sylvia, I am returning the CoQ10.  Peb forwarded me some data about CoQ10 being implicated in an increased risk of bc.  I forwarded the article to another friend of mine who was taking CoQ10 for a year now.  She stopped it cold turkey upon reading it, as her mother passed away from bc. 

    I will also be returning the multivitamin. It has Vit A in the form of beta-carotene at 5,000 i.u.  There is evidence that high concentrations of synthetic Vit A as beta-carotene over a prolonged period of time might increase risk for bc.  They suggest no more than 2,500 i.u.

    Raw means it is derived from raw food sources, versus being genetically derived in a lab. 

    I asked my Onc today about the Garden of Life Raw Protein Powder I started using in my smoothies, and he thought it was perfectly fine.  He agreed about the need for a 4:1 carb to protein ratio to replenish after a hard workout.

    NEWSFLASH:  Bought the Vitamix Blender today.  I've been dreaming of it since last summer.  I finally had enough of fighting with the Oster each AM.  It had a hard time blending the kale.  The Vitamix blended it into silk tonight! Such a difference.  The book said I can make soups in it, and I saw the rep make an avocado, cabbage, kale ice cream that tasted so yummy!  He added a banana for sweetness and I don't remember what else.  I hope the recipe is in the book!

    Will write more soon.  It's been a very long day, and I haven't gone to bed yet.

    Adagio and Emma, hope you are both doing good today with your treatments and recovery.

    Saying lots of prayers tonight, all of you here are in my thoughts!

  • Mumtobe
    Mumtobe Member Posts: 82

    Hi everyone,

    Well....I did it! Today was day 25 of 25 rads. I am officially finished treatment. I hope and pray to God I never ever have to go through this again. So glad it's over. I am exhausted but alive and feeling well!

    Happy weekend to you all xxx

  • adagio
    adagio Member Posts: 713

    Mumtobe - congratulations!!! You have finished radiation - yeah!! And I hope and pray to God that you never ever have to go through it again either.  Now you can celebrate!!

  • lolalee
    lolalee Member Posts: 164

    Congratulations Mumtobe, must be a huge relief to finish with radiotherapy.  Happy to hear you are well although exhausted, hopefully that will pass soon.

    Bernie do so enjoy your humorous contributions.

    InspiredbyDolce, know what you mean about the pec muscle flexing, hoping mine will settle after exchange.

    Off to the Jade Market this morning to see the beads and trinkets on offer.  Picked up jade buttons carved in floral design previously and they look stunning on a white blouse, also fabulous on decor cushions.  Really luxurious to have hand carved jade buttons for the price of plastic buttons....only in H.K.

    Hope everyone has a good weekend with warmer weather.

  • adagio
    adagio Member Posts: 713

    Hi Sylvia - I went to my GP today and got the results of my DEXA scan. It has been 4 years since I had one done and my lumbar spine has lost a bit more - 4 years ago it was at -3.1 and it is now at -3.7. Interesting enough I have gained in the hip area - can't remember the exact numbers for that one. Do these numbers mean anything to you? I knew he would bring up the bisphosphanates (sp??) - he offered either the monthly oral, once a year IV, or twice a year injections under the skin. I told him I would do my research and think about it. He is running a lot of blood tests to rule out more rare things - but of course he said nothing had to done immediately, that I can wait until my radiation is behind me and I feel recovered. He did mention that Vitamin D was the most important supplement for me to take - he recommended getting calcium from food only. 

    I have 8/20 radiation treatments behind me - 2 days off for the weekend. Skin is good so far!

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987

    Mumtobe - CONGRATS!  That is great news.  Pamper yourself this weekend.  :o)

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Bernie,

    Thank you once again for giving us all a good laugh. I hope everything is well with you.

    Keep in touch.

    Best wishes.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mumtobe (Carol),

    I just wanted to say how glad I am that you have now finished your radiotherapy. It has been a very long journey for you and I can appreciate how exhausted you must be. Try now to get on with your life as normally as possible and put breast cancer into a little corner. Enjoy each day to the full and be happy with your husband and baby Emma.

    Try to keep in touch and to help encourage others.

    Fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello InspiredbyDolce (Debra),

    I was interested in what you said about CoQ10. I think that for each vitamin and mineral supplement, or anything herbal etc. we shall find good and bad comments. It is all thoroughly confusing. I think perhaps the proliferation of supplements etc. is going the way of the drugs companies. I cannot believe what is on sale at my local natural food store. As far as I am concerned, I shall always give priority to healthy food over any kind of pills. I think one of the problems with the vitamins etc. is that they are too high dose when the body needs just small doses.

    I hope you enjoy experimenting with your Vitamix blender.

    Have a relaxing weekend.

    Fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello adagio,

    Thank you for your post. Try not to worry about the results of the DEXA scan. The scores for the spine are compared to what you would get in a young healthy adult. Why they use this I do not quite understand. As you age your bones do wear and they are not as strong and healthy as when you were a young adult. I have had three DEXA scans since 2009 and the scores are as follows.

    2009 -3.3

    2010 -3.3

    2013 -3.4

    I was told there was very little difference.

    The other scores were for the dual femur left, and the dual femur right, and they are all in the -2 area. There are no asterisk markings to signify a significant change from the baseline.

    On the paper T score of -3.4 is supposed to indicate you have osteoporosis.

    If I were you I would not worry too much, as these are only statistics and you get variations according to different machines and in the same machine on different occasions.

    I am to see my GP on Monday to discuss the results but whatever she says it will be one big NO to any kind of bisphosphonate, whatever the brand and whatever the method of delivery. My understanding is that bisphosphonates make your bones more brittle, as they stop new bone from forming.

    Because of the dangers of calcium supplements, we have to try to get most of our calcium from our food and, in my opinion, not from dairy products. I think the best supplements are Solgar Bone Support, which have everything in them that needs to be taken with the calcium (magnesium, vitamin D, vitamin K etc.). The supplements are made of just 250 mg of calcium so you do not overdo things. I take no more than 500 mg of calcium from these supplements, but I get 900 mg of calcium from two glasses of fresh unsweetened enriched soy milk and half a large pot of fresh plain enriched unsweetened soy yoghurt each day. I also eat raw almonds which are rich in calcium and magnesium.

    I think we all have to decide what we are going to do. I shall tell my GP that I shall treat my osteoporosis in my own way! Watch this space!!!

    I am glad all is going well with your radiation treatments. They will soon be over. Have a relaxing weekend and take care of yourself.

    When you cancer treatment is all behind you, you might want to have a blood test for an over active parathyroid gland, which causes osteoporosis and which I had, as did sam52. You might also want to get tested for an over active thyroid, as I think that also causes osteoporosis.

    Fond wishes.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello to EmmaL,

    I hope all is going well with your chemotherapy and that Taxotere is not taking too big a toll on you. You can get through this.

    Hello to lynnlex, also in the UK. I hope all is well with you.

    Hello sam52. I hope you managed to read my PM and just want to let you know that I am thinking of you.

    Hello Lolalee, I was glad to know that you are still having a good time in Hong Kong.

    Hello Michael, please pop in and let us know how you are.

    Hello linali, I hope you are still feeling upbeat.

    Hello Liv and Carolben, we all sincerely hope that you are both alright.

    To everyone posting and viewing, thank you for your efforts on the thread.

    Best wishes to you all.

    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello every one,

    I am just popping back in to say hello to our American friends. I did not have time to finish the previous post as I had  a lot of things to do.

    To Inspired by dolce (Debra) I wanted to say thank you for all the work you do on this thread.  To Fern MF  I hope life is treating you well.To PeggySull, are you going through radiotherapy or have you now finished treatment? To placid 44 How is your radiotherapy going? To Cynthie How is your radiotherapy going? I hope you are both coping well.

    To Sjesse in Edmonton, Canada. How are you feeling as you go through chemotherapy?

    Remember we are all here for you and like us you can get through this treatment.

    Best wishes,

    Sylvia.xxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello netty46,

    Thank you for your PM. I am posting on the thread because this is an interesting subject and it will be useful to see what posts come in and what information and experiences they might bring.

    I have just been looking up information about recurrence after a mastectomy or a lumpectomy. You might want to look at the following link.

    http://www.breastcancer.org/symptoms/types/recur_metast/locreg_treat

    There is a lot of information here and if I were you I would read through it all very carefully. It starts of with treatments for local and regional recurrence and is up to date as of September 2012.

    It goes on to recurrence in the breast and points out that you need careful imaging or pictures of areas inside the body to determine treatment.

    Read all this carefully, especially the bit about if the cancer has come back in the area of the original lumpectomy but there no signs of disease elsewhere, the outlook is probably quite good. Please read all the information carefully. What treatment is offered depends on what treatment you have already had.

    If your surgeon has had a good look it would seem to make sense to go with what he says.

    The information on this site says that if your initial treatment was lumpectomy and radiation therapy then the standard of care for a recurrence is a mastectomy. There is nothing to be afraid of in having a mastectomy. The article says that if you have a local recurrence a long time after diagnosis, and this is your case, you may be able to have another lumpectomy followed by radiotherapy.

    Read this article and see what you think.

    I am so sorry that your cancer has come back after all this time, but from what I have read, you can be treated.

    Wishing you all the best.

    Sylvia xxxx

  • netty46
    netty46 Member Posts: 68

    Thank you for the info.  I just want to know if you have not had a masectomy ever and cancer appeared back in breast( the same one)  then it is  a local recurrence?  I  had lumpectomy in 2000 and recosntruction surgery in 2005 a Diep Flap but surgeon did not remove the small breast I had which nipple had been removed from. He attached the Flap to it.  Now in June I get a recurrence in reconstructed breast . So I ask is this  a local recurrence because I never actually had a masectomy.  Chest wall recurrence is when the person has a masectomy and returns to same spot but thereis no breast tissue there.  Correct? My surgeon did say when she went  into my chest In December that she checked ribs and deep down to pectoralis and surrounding and she did not see where it could be a chestwall recurrence. None of surrounding nodes were infected and my Sentinel came back negative.  The tissue also came back negative.  At the beginning though the question was up in the air was mine a "chestwall recurrence"?  Anyone here with this situation?

  • adagio
    adagio Member Posts: 713

    I so agree with you Sylvia about supplements - I picked up a flyer the other day with all the specials on supplements and honestly - the way they are all described - they would have us believe that we need them all. I think we have to be prudent as to what supplements we take. We all want to feel better and sometimes the ads entice us into believing that we need particular supplements. I have never tasted soy milk or soy yogurt - does it go down easily? I eat organic cow's yogurt every day and use almond milk in my protein shakes. 

    Cynthia - I too am curious to know how your radiation is progressing in Germany.

    netty - sorry I can't help you with your questions - they sound complex - hope you can find some answers soon.

    Sylvia - thanks for the encouragement on the DEXA scan results - I have pretty much put it on the back burner for now because I want to focus my emotional strength and energy on getting through the radiation treatments. 

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello netty46 and adagio,

    Thank you for your interesting posts. I shall be answering later on today when I have got through a list of chores.

    Enjoy your Sunday.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello netty46,

    Thank you for your post. I still feel that if it were me I would go with what my breast cancer surgeon has said. From what you have said it looks as though she has had a thorough check on the area in question and has come to the conclusion that as far as she is concerned it is not a chest wall recurrence.

    You said that other doctors have said differently. Do you mean your oncologist? I am asking this because in the UK the oncologist and the breast cancer surgeon usually work as a team when deciding what treatment to give.

    From what you have said, you must have had originally quite a small lumpectomy if your surgeon was able to do a reconstruction which included the remaining part of the breast. I am assuming that you have been told it is definitely a recurrence in the reconstructed breast and not a new primary in the reconstructed breast.

    It is difficult to work out exactly what you are trying to say or prove. If you are trying to say that in your case it is not a chest wall recurrence because this occurs only if you have had a mastectomy, then it would appear that you agree with your breast cancer surgeon when she says that it is not a chest wall recurrence. If you and your breast cancer surgeon agree, does it not make sense to go ahead with what treatment she is proposing?

    If there is a difference of opinion about chest wall or not with your breast cancer surgeon and other doctors, then if it were me I would get a second opinion from another breast cancer surgeon.

    Have you been told what treatment you can have if it is a chest wall recurrence?

    Have you been told what treatment you can have if it is not a chest wall recurrence?

    What is the difference?

    As you have not given any details of previous treatment, when you were first diagnosed in 2000, it is difficult to know your options, but your medical team will know.

    We all know that with breast cancer, triple negative, the options are a mixture of chemotherapy, radiotherapy and surgery. Are you triple negative, that is are you oestrogen negative, progesterone negative and HER2 negative?

    If you are positive in any of these receptors, then there are hormonal treatments after the standard chemotherapy, radiotherapy and surgery.

    What kind of breast cancer were you diagnosed with? Invasive ductal carcinoma is the most common.

    Were you BRCA1 or BRCA2 positive?

    I hope this will help and that you will soon begin to get treatment to get rid of the new tumour.

    In my own case, I did have a mastectomy of the right breast and I had no option because I had a large tumour. Even if I had had a choice, I would still have opted for a mastectomy because I would have felt more reassured, but that is my own personal choice. My oncologist told me that if I had a recurrence it would happen along the line of my mastectomy scar and the first indication would be a rash along that line. So far, after nearly eight years, I am alright.

    Fond wishes and please let us know how you get on.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello adagio,

    Thank you for your post. I was glad to know that you agree with me about the supplements. We have to remember they are big business, just like the drug companies. I cannot believe the price of some of these.

    You asked about soy milk and soy yoghurt. I find them very pleasant to take and are not sickly like milk products. For a long time I used to have long life soy milk, because fresh was not available. I have been taking the fresh soy milk and yoghurt for over a year now and really like them. I always buy the unsweetened soy milk and the unsweetened plain yoghurt. The calcium in them is said to be more easily absorbed than the calcium in dairy products. Remember, this calcium is meant for calves not for humans and I steer clear of all dairy products because of their possible association with breast cancer.

    I suppose organic dairy products might be alright but I would think they would still have growth hormones in them because they are natural to the cow. I would not have them. I think that the enormous amount of dairy being consumed in western countries is making people big. I cannot believe the difference in a lot of younger people to when I was growing up.

    As for the DEXA scan results, you are quite right to put it on the back burner for now and concentrate on getting through your radiotherapy.

    I was wondering whether you have ever been on steroids long term, because steroids are well known for causing osteoporosis. I have a female cousin with steroid induced osteoporosis and a male friend.

    I do hope that you will have a good week.

    It would be useful if you added radiotherapy to your details at the bottom.

    It would be useful if others did the same so as to keep their treatment details up to date. It makes it easier to follow what is happening with individual people.

    I am always very happy to hear from you.

    Best wishes.

    Sylvia xxxx

  • Cynthie
    Cynthie Member Posts: 21

    Hi all!  Today was rads session 11/28.  So far things are going pretty well---one day at a time.  A bit of pinkness on my chest and the Bad Girl feels hot and stabby sometimes.  Every morning I walk up the hill to the hospital (about a kilometer)---what a blessing to be so close. In a little thermal tote I'm carrying my "gown" (a small light tablecloth---they don't provide anything to wear or lie on and a big towel would be too heavy to lug back and forth), a tube of skin creme, an ice pack and a gel pack.  The radiation waiting room is usually full, but for some reason, the minute I sit down and pick up a magazine they call me into one of the little changing rooms, ahead of everyone else which I don't understand but accept gratefully.  (They use facial recognition software---cool but a bit creepy too...)  When they call my name I march out on the other side into the rads area, my "gown" wrapped around my shoulders.  Now it gets funny.  After positioning me using projected green (laser?) gridlines, they spend a minute or two redrawing those all-important-protect-at-any-cost registration lines all over the BG.  Not demure, discreet, dainty little lines.  Noooo, ten freaking inches long in bright blue, nonwaterproof marker!  And woe betide the hapless patient who tries to touch them up herself (after secretly washing and moisturizing haha)!  So, then the familiar routine.  I get four zaps from three different angles---two long and two short.  The 11,6 Gray of boosts are integrated into the daily fractionations, so I get a total of 2,2 Gy---1,8 whole-breast and 0,4 boost.  Slam, bam, thank you Ma'am...  Back in the changing Kabine, I dab a wee bit of the moisturizer on my chest and skin graft---so deliciously clandestine and antiestablishment!  Then I pop the cold gel pack in my bra and head home.  I have decided to wash her every morning and to frequently use cremes and aloe vera, so I won't be able to report on the benefits of using only POWDER.  It just doesn't make sense to me, although on German forums many state that they sailed through rads just fine with nary a drop of water besmirching their floured bosoms.  So who knows?  Some lucky gals have no problems no matter what they do and then for some it's the other way round.  Whoa, this has become an essay---sorry!

  • adagio
    adagio Member Posts: 713

    Cynthia - how good to hear from you! It seems like all is going well for you so far! You are almost half way through - so am I correct in calculating that you are getting a total of 61+ Gray - that seems like a high dosage. What kind of cream are you using? I find it hard to believe that you have to bring your covering and that they don't provide for you. No pampering at your radiation unit!! Oh well - we all get through it. Hang in there!

  • Cynthie
    Cynthie Member Posts: 21

    So Adagio, you are good at multiplying!  Laughing  Yes, 61+ Gray---and it seemsvery high to me too.  The basic "whole-breast" is 50 Gy, which is standard, I suppose (although rapidly becoming outmoded).  But then an 11,6 Gy boost??  Yeah, it was triple-negative, but teeny-weeny and low-grade, low-proliferation (Ki-67 5%) with big wide surgical margins.  I'd be interested if there have ever been any studies of similar tumors in breast tissue of women who chose mastectomies for whatever reason.  (That is partly how they calculate the benefit of radiation for us lumpectomy gals.)  Honestly, I've been thinking about pushing to have it shortened by a few days---the risk of bad SEs seems to jump a lot after 50 Gy from the research I've looked at.  And for how much a percentage improvement in recurrence?  Infinitesimal? 

    Pampering?  What?  Some of you are PAMPERED???  <sigh>   

  • chatterbox2012
    chatterbox2012 Member Posts: 270

    Hi Sylvia 

    I have been following the threads just haven't got around to posting.

    I was in London last week and the weather was appalling. My stepson who has endured the whole winter there says that it has drained the life out of him. It is cold here in Ireland but at least sunny.

    I noticed the questions about gene testing a couple of weeks ago and meant to post. When Janette was interviewed in Belfast they seemed to use a scoring system and she seemed about to not get enough points when I remembered a great aunt of hers that we discovered from her death certificate had died of Breast cancer. That ensured screening for her.

    Hope all are doing grand.

    Michael 


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