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Topic: Calling all triple negative breast cancer patients in the UK

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Sep 12, 2010 08:43AM - edited Jan 20, 2020 04:16PM by sylviaexmouthuk

sylviaexmouthuk wrote:

With so many forums and threads on this site to go through for information, I thought it would be a good idea for all of us in the UK to form a forum specifically for us, and to give our details and experiences in a compact manner. Anyone else in the world is welcome to join in.

I was diagnosed with a very large tumour, triple negative, in 2005. I had pre-adjuvant chemotherapy, epirubicin, cyclophosphamide, and then docetaxel, followed by right breast mastectomy with removal of seven lymph nodes, only one affected, the sentinel node. I had three weeks of radiotherapy plus boosters. I had very few side effects from all of this treatment, except fatigue. I am still in the clear after 14 years and 07 months. I still live with fear of recurrence or spread, but I live a normal active life. If I can do it, so can you!

I would love to hear from anyone in the UK or anywhere else in the world. It would be useful to find out how many of us are affected with triple negatives and to share information, comfort and support.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 13, 2019 08:33AM helenlouise wrote:

Hi Sylvia

You mentioned radiation penetrating the back. I had radiation to the nodes in around the clavicle and ended up with what they called an “exit” burn on the upper part of my shoulder. Burns, thankfully minor, to front and back. So I can easily imagine complications to the lungs, heart, ribs and even spine! The technique used last year was very different to the procedure I underwent in 2013. This time round I used goggles so I could “see” that I had inhaled sufficiently to move my chest away from the heart. The googles provide a visual indicator (green zone) in which you need to hold your breath whilst the radiation is given. Once in the green zone the technicians would audibly confirm that you need to hold your breath whilst they treat you. The process is to maximize clearance from and reduce impact to the heart. The previous time they just zapped me! I have heard that radiation can be given to the breast with the women laying on stomach and the breast hanging down below the table. This is again a technique to reduce the chance of irradiating other parts of the body unnecessarily. The science is amazing. I often feel like I am in a SciFi movie when undergoing scans and some of the procedures and treatments.

Kind regards Helen x

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Aug 15, 2019 05:09AM sylviaexmouthuk wrote:

Hello Helen,

Thank you for your interesting post. I have been very busy this week so this is the first opportunity I have had to comment.

It is not good that the radiotherapy being used can penetrate from the breast area through to the back. The powers that be here are definitely too slow in implementing proton beam. Patients tend to find radiotherapy easier to deal with than chemotherapy but they should be made aware that the radiotherapy treatment is also lethal and has nasty side effects.

I do remember my oncologist telling me that a patient could get bad inflammation of the lungs as a result of radiotherapy. You are right that it is easy to imagine complications to the ribs and spine.

I was very interested in what you said about how different your radiotherapy treatment was the second time around to what you had in 2013. It is certainly very different to what I had in 2006. I am wondering whether anyone is getting this treatment involving wearing goggles etc. in the UK. I was just zapped back in 2006.

Thank you for all that information about new ways of doing things. It is very useful for all of us and I am surprised there have been no comments since you posted. Information is one of the most important aspects of these threads.

I do wonder how much damage may have been done to my otherwise healthy body because of the treatment, even though I feel fine. I was troubled when a strange mole appeared on the part of my right arm where I would have had radiation effects. My own doctor dismissed the mole but another one referred me to the hospital mole clinic. It turned out the mole was melanoma and I had to have two surgeries to get everything clear. I was relieved when I was told all was clear and guaranteed that there would be no further problems (famous last words). It took the deep wound eighteen months to heal. The person that told me that and of course I felt relieved, than added that many years after radiotherapy patients can develop sarcoma cancers in the bones. That was rather scary.

Wishing you all the very best.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 15, 2019 06:37AM Rosiecat wrote:

Hello Sylvia,

Agree, Helen's post was very interesting. We can learn a great deal from what other patients tell us about their own experience of treatment. I was particularly concerned about exit burns to the back caused by radiotherapy, also the possibility of organ damage. I asked my original surgeon about this as he had suggested a lumpectomy followed by radiation. I'd wanted to know what happened when the radiation zapped the the tumour site, where else does it go? The possibility of it exiting through the back seemed very logical to me, as did the risk of heart or lung damage, so I asked the question. He was evasive and said he didn't know what I meant! Informed consent means nothing to some medics. Nobody should be signing up for treatment without knowing all the facts and we cannot assume that doctors give us all the facts.

I was interested in Helen's experience of radiotherapy with goggles and a visual green zone. Susie didn't mention this during her time in treatment, so I'm guessing that this is probably not available here. I do think that anyone about to undergo radiotherapy should ask about this. Proton beam therapy would be the gold standard.

It looks as though a thunder storm is brewing here. It's very quiet and dark outside and both cats are asleep indoors for once.

Love to you and Raymond,

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 15, 2019 07:38AM helenlouise wrote:

Hi Sylvia and Gill,

Thank you for your replies. I agree we can learn from each other’s experience. So sharing is important.

I am surprised and sorry to hear about your melanoma Sylvia. Both my father and brother died from melanoma and my cousin has also had treatment for melanoma. Apparently there is a gene that links breast and melanoma but I tested negative for it. I bet my husband I would test positive for one of the genes as I have a family history (both sides) rife with cancer (melanoma, breast, non Hodgkins, sarcoma, kidney and lung). Anyway I had to pay up as the panel of 5 genes they tested me for all negative. The genetic counselor said there is definitely something going on but they just don’t know what (yet)!

Each time I have another round of scans I wonder how much I am increasing my risk of another primary cancer but I do want to know where I am at, so what does one do? I have decided that if / when the next round of scans come back clear I need to return to work, move forward and try to forget about cancer. The wound on my chest makes it hard but I need to accept it could take many more months for it to heal. At least I no longer have the vacuum dressing.

Thank you for your discussion.

Hoping you are both well xx

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Aug 15, 2019 11:42AM SusieW5 wrote:

Hello, all

No I didn't have any goggles! What I did have was a sort of papier maché shell on the breast which was specifically to help prevent any damage to heart or lungs by holding the breast clear of the torso.

Susie

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/13/2018 Lumpectomy Chemotherapy 4/19/2018 Radiation Therapy Whole-breast: Breast
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Aug 16, 2019 05:49AM Rosiecat wrote:

Hi Susie,

I hadn't heard of the papier mache shell either.

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 16, 2019 06:15AM Rosiecat wrote:

Hi Helen,

Sorry to hear that your family on both sides have had much more than their fair share of a variety of cancers. It sounds like much more than bad luck. I met a patient a few years ago. He was in his late forties and dying of pancreatic cancer. This was his third cancer, the first, lymphoma when he was 18, the second when he was 30, I can't remember the type, and finally pancreatic cancer. Various specialists had told him there was absolutely no connection between the three cancers. We used to have conversations about it and both felt it was more than sheer bad luck. Of course, it could have been just that. Nobody in his family had ever been diagnosed with cancer as far as he knew.

I do hope that you're able to get back to work, I remember how much you enjoyed it. I'll keep my fingers crossed that your next round of scans come back clear. I absolutely agree that it's good to have something other than cancer to think about.

Keep on keeping on!

Gill x


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 18, 2019 07:24AM helenlouise wrote:

yes Gill, I will keep, you and the group informed. I definitely believe that luck has something to do with how life progresses. Especially when I know many do everything they can to prevent getting cancer and they still do.

Xx

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Aug 18, 2019 09:00AM - edited Aug 18, 2019 04:30PM by maryna8

HI, Sylvia

I think you are right to make notes on Woollams' posts and have decided it's almost always back to the Rainbow diet, and taking care of oneself. The information does come fast and furious, I just received my new copy of WDDTY and so far have gotten through the editor's post on the first page! I was gifted with the Wall Street Journal, and was dismayed to find that it comes every day! I have done some fast skimming but still the new one is here before I ever make much headway. And then there's all that paper.

I was also interested in reading about the fluorouracil, and how to prevent damaging oneself by having a test before taking it in cancer treatment. It does not seem to be a drug that is used much here in the US, if you look at the histories of the women who post on this forum. Over the years I have noticed that it seems to be frequently used by the posters from the UK. It does give one pause to realize how long this drug has been used, Adriamycin has been used since the 60s also, and in 1967 it was found to cause cardiac problems. Cytoxan was declared safe to use in the US in 1959, with a long list of side effects. And yet here we are, 50 years later, being given the same drugs. Taxotere is a newer arrival, starting use in 1998. I think a lot of people that I know have the idea that Breast Cancer is an "easy" cancer to treat, when you learn about the drugs we are given it makes you realize the truth, there are no easy cancers. Although now with the immunotherapy drugs, there may be better news in the future. Although I know they also have side effects, it does seem that people taking them function a bit better through their treatment. This is purely anecdotal, I am no expert.

I'm glad you like the rosehip tea, I like the tart flavor too.

Yes, I posted the photograph, but it looks so washed out, nothing like the real thing. It must be the camera on my old phone, perhaps. It loses something in the sending.

Good for you for your civic activism! It is impressive that you can get things done as you do. It is not easy for individuals to stir up the government machinery, whether small or large.

I tried to look at "New Scientist" but am blocked from viewing it, I suppose it wants a subscription.

I am off for now, talk to you again soon, '

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 19, 2019 09:00AM maryna8 wrote:

Hi, Gill

In response to question asked in your last post to me: there is no real expense in watering anything at my farm, I have a deep well and can do as I please. That being said, the only things I water are vegetable garden (if I have one), and a few flower beds. Everything else is on its' own!

I don't know yet if I will have more shoulder surgery, I will see the doctor next week. It would not be the same as before, since my rotator tendon is still repaired, the only thing needed is to remove the offending piece of broken screw that is floating in my shoulder. It is supposed to be absorbable, but the surgeon has told me she doesn't know how long that will take to happen. I think I would prefer to get it out of there, and be allowed to proceed with therapy and get better. I am so tired of messing around with this.

I am amazed at what you said is going on in churches over there, crazy golf and rides in church naves? Is this to pump up attendance? It sounds desperate to me, but seems to be going on everywhere. Here a neighboring rectory is being let out for a Bed and Breakfast, since no priest lives there. One of my stepdaughters and her husband are ardent churchgoers because the church they attend has lots of programs for their children's interests. But, these events don't happen inside the church but in the adjacent Church Center. The Catholic churches in my county are being written off by the powers-that-be, we are told there are not enough priests to manage them all, and we are told it would be just as easy for us to drive over to the next town where the church is still open (for now.) People here are very protective of their parishes' churches, and for good reason in my opinion. These are solid, some quite large and impressive limestone churches and were all or partly built by the parishioners themselves back in the 1800s. Now we are supposed to just say "oh well, no matter" and write them off? People are quite angry and I think the Church is doing themselves more harm than good. So far our Church (recently demoted to Chapel), is still open but the future is not looking too bright.

We have been fighting this for well over a year now, in this most recent dust-up. I really realized what was thought of us when I happened to read in a publication that it was thought we humble country parishioners had a "parish island mentality." There was(is) a woman whose job it was to go around the counties and convince us we were wrong, and small-minded to think in this way. We are slowly losing our grip, but not without a fight, I am afraid at the end of it there will be fewer churchgoers, not more. Sometimes I think the Vatican could sell some art if they are so desperate for money, but I suppose that is irreverent, however no worse than a carnival ride in the nave! I will stop for now, I could go on and on.

I will keep you informed on shoulder, and your daughter is right, the shoulder is our most complicated joint, I have learned. So far I still have one, just needs another touch-up! I hope.

Talk soon, love

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 19, 2019 12:23PM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your post. I will respond tomorrow as it has been another hectic day for me today.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 21, 2019 05:51AM sylviaexmouthuk wrote:

Hello Mary,

I have at last found a bit of time to post.

I agree that we are getting a lot of information and that it takes a lot of time to read it all. Another Chris Woollams email has arrived, but I have not had time to look at it. The next WDDTY is not in my local shop yet. I like to read the New Scientist magazine but it also takes some reading. I have kept the article The hidden cause of disease which was the Features Cover story of the last edition. I want to give a copy of this to my dentist/hygienist, as it is all about bacterial infection in the mouth being the cause of most of our chronic illnesses, especially Alzheimer's.

As for the chemotherapy drugs I think they are all as bad as one another. Fluorouracil, doxorubicin, epirubicin and cyclophosphomide are all known as first generation drugs and have been around a long time. The taxanes are the second generation, but, if anything, they seem to be more toxic than the first ones. They cause neuropathy, lymphoedema and heart disease. Not exactly an improvement. As for immunotherapy, the word sounds good but they also seem to be toxic. Two of my friends had them and died from them.

We are heading into a bank holiday weekend and Exmouth is just full of people. I shall be glad when the schools go back and we get back to normal. I would also like the politicians to give themselves a good shake and Brexit behind us one way or the other.

That is about all for now.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 24, 2019 05:51AM Kathseward wrote:

hey everyone

Hope u are having a great weekend? Madly try to complete a pharmacology assignment and help daughter our with hers(environmental health) . Doing me good and helping me concentrate on something else besides my impending yearly mammogram. One end of scar indented and the other puffy and breast seems smaller. Been like it for over a year and likely radiotherapy changes but still I freak! Off to Dubbo Bathurst and Orange next week for work to chase up some airline contacts of a TB case which will keep me busy.

Stay well everyone

Much love

Kath

Dx 7/6/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 7/7/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2016 AC + T (Taxol) Radiation Therapy 1/30/2017 Whole-breast: Breast, Chest wall
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Aug 24, 2019 09:23AM maryna8 wrote:

Hi, Kath

Sounds like you are living life to the full, and on the run keeping busy. I think the time is zooming by too fast, autumn is approaching and where did summer go?

Don't worry too much, seems you are doing well and outrunning any bad stuff!! Good luck with mammogram.

Talk again later, love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 25, 2019 08:37AM sylviaexmouthuk wrote:

Hello Kath,

Many thanks for popping in to say hello.

I was glad to know that you are keeping busy with all those studies and helping your daughter. Anything that keeps your mind off breast cancer is good therapy.

Please let us know the results of your impending mammogram.

Keep telling yourself that you are going to be fine.

Your work sounds really interesting and it is so important.

The thread is very quiet at the moment but i hope it will pick up when the schools go back next week and our friends here get back to a more normal routine.

Sending you love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 25, 2019 10:00AM maryna8 wrote:

Hi Sylvia

I've had a very busy weekend and have just been at my table sorting through mail, I have so much to read it's crazy. I threw a lot of stuff away, and have a small pile left, including the WDDTY.

I have another busy week coming up, it includes a trip to the orthopedic doc to see what she has to say about my shoulder. I am trying to figure out what I am going to say, and hope she listens. I feel as if I am in such a vague muddle about the whole thing, and would like to have a clear vision for how things will go. Is that even possible, I wonder?

Fall is approaching fast, we are having lovely cooler weather.

Have to go now and get ready for church, it's Sunday and today has come very fast too! The weeks zoom by.

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 25, 2019 01:58PM sylviaexmouthuk wrote:

Hello Mary,

It was really nice to hear from you as the thread has been really non-active this past week. I sometimes think that all the information relating to breast cancer and TNBC in particular is readily available and that, in this respect, the thread is superfluous. It is, however, I think, still useful for support, comfort and encouragement. I am still shocked when I glance through the other threads in the Triple Negative forum and discover the number of patients being diagnosed with TNBC. It really is like an epidemic.

I do hope you get some satisfaction from your orthopaedic doctor as these appointments need to be meaningful and you need to come away satisfied. I can understand that you would like to have a clear vision of how things will go.

In a way I shall be glad to get back to a more normal life here in Exmouth. There are far too many people coming here and it is almost like an invasion. It is not the quiet little seaside town that we came too nearly 18 years ago. I think the seafront and the town centre have been spoiled and have really been turned into eat and drink centres!! I am looking forward to autumn.

I have been reading my way through the latest email from Chris Woollams of Cancer Active, dated August 19th.

I was very interested in article 1, entitled This Drug can cure illnesses.

It seems that this drug is exercise and that it acts as a potent drug in the body, increasing oxygenation of the tissues, producing anti- inflammatory and stress and depression-reducing hormones called endorphins. Exercise also alters the gut microbiome to produce a wider diversity and more anti-inflammatory short-chain fatty acids, which boosts immune response. Research shows exercise increases survival and it does not have to be heavy exercise but just light regular walking is enough.

I have gone through lots of articles on the Cancer Active site, having started from the first heading on the basic email.

I have found the following articles with their major headings.

1. Exercise increases cancer survival.

2, Why exercise is good for us.

3, Are you fit enough to beat cancer?

I would think it would be useful for everyone on the thread to read it and make a pledge to do some walking at least every day.

I shall not go on to the second article on the basic email until another time, so that we do not get information overload. The articles do emphasise that exercise is very beneficial all through treatment and then regularly afterwards, to try to keep breast cancer at bay.

I do keep active but I tend to let too many things take precedence over what I should be doing for my own benefit. I am going to try to stop this happening, especially with my duties as a volunteer Director. I have to try to learn to say 'no'.

It has been hot here today but I hope that will be the end of it and that the end of this Bank Holiday weekend will bring some more peace and quiet.

Would you believe that Raymond and I have been trying to listen on Radio 4 to a ten episode adaptation of In Search of Lost Time by Marcel Proust. Some episodes are two hours and others are one. It does take a lot of concentration. So far there have been five parts, brilliantly read by the superb actor Derek Jacobi, but there are still five more to go. It is being done over Saturday, Sunday and Monday of the Bank Holiday weekend.

That is all for now.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 26, 2019 08:53AM helenlouise wrote:

Hi all,

Having received clear scans (bone and CT) I have decided to go back to work on 09/09 regardless of my aching back. Oncologist has me on lyrica and a reduced dose of targin, and I must say my pain levels are much better. I have been working in my garden which is great (my being in it - it’s not yet a great garden) and I soooo look forward to spring. I will wean off the opiate and stay on the lyrica for now. My oncologist advised I need to get use to my body (after the insult of chemo and more radiation). Next oncologist appointment in three months. Still seeing nurses and surgeon re chest wound whicchas opened up some since the negative pressure dressing has come off but it is clean, just not healing. The community nurse did say it may not heal and the oncologist did mention skin graft again. I am not happy to go there just yet. Maybe never. I just want to go back to work for some time and see how things go. So japan is on the back burner and I am ok with that. Seeing our garden flourish in spring will be a blessing.

You in the UK will be looking to autumn. I hope the summer has not been too fierce. And the politics comes to some resolution soon. I feel fortunate to have friends on the the other side of earth.

I will keep you posted on how my return to work goes.

Hoping you are all doing well. XX

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Aug 27, 2019 06:27AM Rosiecat wrote:

Hi Mary,

I do hope you have some better news about your shoulder soon. Pleased to hear that you won't have to go back to square one.

It was one year since my diagnosis last Saturday. Time's gone by so quickly and it all seems a bit unreal now. My cancer is well known for its recurrence within three years of surgery, so that's almost one year out.

It seems as though the Catholic Church is having real difficulties in your neck of the woods. I suppose lack of funding and priest shortages are behind the 'parish island mentality' jibe. The faithful are blamed for fighting closures when the real problem is at a much higher level. The abuse scandals and cover-ups can't have helped with priest recruitment either.

The helter-skelter has now left the Anglican Cathedral and just before it was dismantled the Bishop of nearby King's Lynn gave a sermon from halfway down. When he finally slid to the ground he shouted 'God is a tourist attraction'. You had to be there.......

I know this is primarily a TNBC thread, but I have very little to report. I do read Chris Wallams' newsletters, but am sometimes irritated by the sweeping statements. Having said that, I wish I'd read his comments on the known dangers of Paxlitaxel before embarking on treatment. Despite a great deal of research, I realise now how green I was prior to treatment, I also know that oncologists keep far too much information to themselves.

I'm off now to catch up on some housework and gardening.

Love,

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 27, 2019 06:51AM Rosiecat wrote:

Hi Helen,

Congratulations on your clear scans. Sorry to hear that your wound is still refusing to heal and may never do so.

It always seems strange to me that so many people miss the little things in life that make all the struggles along the way seem worthwhile, like watching the garden flourish and knowing that we contributed to that. I shall think of your Spring garden as we approach Autumn, knowing that I'll soon be outside doing all the pruning and leaf sweeping at the end of another year. It's about this time that someone will mention Christmas, which is just annoying at any time before December.

You ask about our political situation. It just gets worse day by day, I think the whole world must be laughing at us by now. Oh well, I'm off to do something happy, gardening. I've put the housework on hold.

Hope you enjoy going back to work.

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 27, 2019 10:13AM santabarbarian wrote:

Re exercise, I read an article that explained that exercise involving large muscles can generate so much pressure in blood vessels that the cancer cells (which have membranes that are less robust than healthy cells) can literally be crushed by the pressure of being pumped through the working muscle.

It has upped my motivation to exercise! I think, "time to crush cancer cells!"

pCR after neoadjuvant chemo w/ integrative practices Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Aug 27, 2019 12:24PM sylviaexmouthuk wrote:

Hello Helen,

I was glad to know that you have received clear scans for both bone and CT.

It is probably a good idea to go back to work as it will keep you busy. With your pain levels much better I do hope you will be able to cope with your work. What exactly do you do?

It seems that all of us on the thread seem to benefit from working in our gardens. I have always found it very good therapy.

I do hope the chest wound will recover very soon as it is taking a long time. Have your doctors and nurses given you any explanation as to why this wound is taking so long to heal? Have they tried iodine pads? It is a great healer. I have seen these pads being used recently to heal a large open wound at a doctor's surgery. I have used them on both myself and Raymond. I do hope you do not have to go to skin grafts.

I do hope you will be able to take your ttrip to Japan in the not too distant future.

It appears that here in the UK autumn is early. I have been to our local garden centre recently and saw that all the autumn bulbs are in stock, as well as pansies, cyclamen and chrysanthemums. It does not seem that long ago that we were busy planting summer flowers.

The politics here blunders on and gets more and more insane. I think Boris Johnson has nothing of the Statesman and cares only about himself. As for Donald Trump, I think he is becoming quite dangerous and making very dangerous statements and threats. I do wonder where the world is going.

Keep looking on the bright side and keep in touch. It is so interesting having posts from you and Kath in Australia.

Love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 27, 2019 12:27PM sylviaexmouthuk wrote:

Hello santabarbarian,

it was nice to hear from you as I often read your interesting posts on TNs.

Thank you for this interesting post. I think "time to cruch cancer cells" is great motivation.

Keep up the good work.

Best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 27, 2019 12:47PM sylviaexmouthuk wrote:

Hello Gill,

It was nice to see you posting. You can write about anything you like on here. It is good therapy to focus on things other than breast cancer or cancer in general. We must not let it possess us.

I do like Chris Woollams, his emails and all the information he has on Cancer Active. There is a lot of complicated science in some of his articles but you can always get the main facts. I have been following him since my diagnosis in 2005 when I picked up a copy of his magazine, entitled icon. Reading his information put me on a very good pathway. He has always been way ahead of his time.

There is so much information in his emails that I take my time reading them and reading the other articles that stem from them.

I think we all know that orthodox breast cancer treatment is toxic but somehow we go through the treatment and we survive. I went through this treatment but I did so much else on my own and somehow having been given a poor prognosis because I was not hormonal, I have now passed 14 years since diagnosis.

I have just finished reading article 1 of the latest email, and all the other articles connected to it. I am now reading article 2 entitled Yet again a key factor in Alzheimer's and dementia.

There were two follow ons to this entitled What lies behind Alzheimer's and dementia, How to limit your risk, and read one article entitled Gut bacteria plays key role in Alzheimer's and dementia and Alzheimer's and dementia risk reduced by exercise. It is all very interesting. I picked up on the following "It is possible that there are many 'causes' of cognitive decline. However, exercise is known to combat both frailty and cognitive decline".

There is so much more in these articles than I can post on here.

I do hope that all is well with you and yours.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 27, 2019 06:50PM adagio wrote:

Hi everyone,

Healthwise - all is well - and like many others on this thread, I too am enjoying my garden a lot. Last year I made a small perennial garden and it has been so much fun watching the plants grow - some better than others and I lost a couple over the winter - which is not so bad since it has given me opportunity to plant even more. My vegetables are growing wonderfully well - mostly leafy greens like kale, collards, swiss chard, arugala, and mesclun greens, parsley, cilantro - and of course, a huge harvest of garlic in July. Oh yes, and tomatoes! Like I often say to my friends :"if I am what I eat, I should be a leafy green".

I trust each of you will enjoy the remaining weeks of summer - ours has been a long, hot and dry summer - still lots of gardening time left before the fall weather comes in October.

Dx 8/21/2012, IDC, 2cm, Stage II, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 9/24/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/19/2012 AC + T (Taxol) Radiation Therapy 3/24/2013 Breast
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Aug 28, 2019 09:36AM - edited Aug 28, 2019 09:40AM by Rosiecat

Hello Sylvia,

I knew a great deal about the side effects of chemotherapy before embarking on my treatment, or so I thought. In fact, I hadn't realised that the injections we are somethimes offered in order to prevent to our white cells falling to a dangerously low level do not always work. I didn't know that Paxlitaxel doubled the chance of sepsis. The treatment for sepsis often involves a universal antibiotic as the source of infection is difficult to locate in many cases. I had sepsis and universal antibiotics on five occasions. Eventually the antobiotics killed the good bacteria in my gut and I developed C difficile. I know this is probably unusual, but it does occur occasionally and I would have liked to have known that. I realise that doctors don't have time to cover every eventuality, but I feel that some important information wasn't given to me. Informed choice it wasn't.

Off to the garden now.

Take care of yourselves.

Love,

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 29, 2019 03:59AM sylviaexmouthuk wrote:

Hello adagio and Gill,

Thank you for your posts. I shall try to reply to them later on today.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 29, 2019 05:42AM Rosiecat wrote:

Hi adagio,

I'm glad (and a little envious) that you manage to grow your own vegetables, so much healthier than supermarket or farm shop stuff that may have been on the shelf for days. Sadly, with a garden full of slugs, rabbits and deer, my vegetables, apart from runner beans and broad beans, rarely survive long enough for us to eat them. The apple and plum trees are laden with fruit as usual and I have a glut of green gages for jam making.

Take care,

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Aug 29, 2019 03:19PM sylviaexmouthuk wrote:

Hello adagio,

Thank you for popping in and letting us know that all is well. I was glad to know that you are getting a lot of enjoyment from your garden.

I was very interested in all the vegetables that you are growing, especially all those leafy green ones. Some of them I am not familiar with, such as mesclun greens and cilantro. I shall certainly look them up. Do you eat them raw or freshly cooked or do you make green smoothie out of them? Eating all those vegetables must keep you nice and healthy.

Since I live in an apartment complex with landscaped communal grounds we have mainly flowering evergreens for shape and then summer annuals and a few winter ones. I am in charge of these grounds and have transformed them in the nearly eighteen years that Raymond and I have been here. It has been a lot of work but it has always been very therapeutic.

If you are reading the posts regularly you will have seen that recently I was posting about the great importance of keeping active as a cancer preventive. This is something that is in our control, unlike some other things. The other really important thing is eating healthily and once again that is something that is in our control. We all know the importance of a mixed and varied diet, based on plenty of fruit and vegetables and keeping away from processed and junk food.

I do hope your husband continues to make progress.

Keep in touch as it is so enriching to hear from people from different parts of the world. We recently had posts from Kath and Helen in Australia.

That is all for now.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 29, 2019 03:33PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your post. You always have something interesting to say.

I think that medicine is not an exact science and that we never really know how treatment is going to react on us. It really is trial and error. I also think that with cancer treatment one size does not really fit ally and also that a lot of how we react depends on our general state of health when we begin treatment and what our bodies have been through beforehand.

You have certainly been through a lot but you have come through it. You are to be congratulated on that.

I get the impression that the newer chemotherapy drugs seem to have worse and worse side effects. The taxanes are pretty awful whether it be docetaxel or paclitaxel and they certainly can cause peripheral neuropathy and lymphoedema, not to mention heart disease. Epirubicin and doxorubicin are said to cause heart problems and they are an older generation of chemotherapy drugs. Very recently I was reading a post on one of the TNBC threads about how bad the side effects from carboplatin are.

I think if you can manage to avoid chemotherapy treatment then the cancer journey is that much easier. I have a friend here who had surgery so her cancer treatment did not seem such a big deal to her and she is about five years from diagnosis now.

I do agree that doctors should be completely open to patients and not hide anything. Patients have a right to be fully informed before they begin treatment.

It is good that so many of us on the thread get such enjoyment from gardening.

That is about all for today.

Love to you and yours.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast

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