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All TopicsForum: Triple-Negative Breast Cancer → Topic: Calling all triple negative breast cancer patients in the UK

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 Jun 20, 2018 06:16AM 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 13 years and 00 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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Jul 9, 2018 11:43AM SusieW5 wrote:

I've been in London since 1974, Flora. Oxford is a great city, though, I paid a visit a couple of years back, stayed overnight at the hotel near the station, walked my old stamping grounds and saw King Charles III at the Playhouse. I worked at what was then the New Theatre for a while before university, and at the Bodleian. It's a city on a very liveable scale and I did wonder idly about retiring there but I'm and out-and-out Londoner now.


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Jul 9, 2018 12:16PM SusieW5 wrote:

I have been trying to work out what the bad taste in my mouth most resembles and finally realised that it's the bitterest of olives. Now, I like olives, but not of industrial-grade bitterness and not in my glass of milk!

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Jul 9, 2018 01:27PM sylviaexmouthuk wrote:

Hello Susie,

I think you are right and that different hospitals may have different ideas about treatment. We are not doctors on here and we can only relate our own particular cancer journey and how we experienced everything. We can give tips that we used to deal with any problems arising on our journey. We have to have confidence in our medical teams and trust that the treatment they come up with is the best that they believe will get us through. I had great confidence in my oncologist, my breast cancer consultant surgeon and my breast cancer care nurse. I was very happy to have an all female team and a female GP for most of the time. All that suited me. I was happy to have my chemotherapy first and was not given a choice between a lumpectomy or a mastectomy, but I had already decided beforehand that I wanted a mastectomy. We can support Flora through all this as she supports her mother, but the decisions must be between them and their medical team.

I was very sorry to read that you had watched your husband die of cancer of the oesophagus in 2015 and I know that such a cancer is much worse than going through breast cancer. I was very close to one of my uncles (my mother's younger brother) and I watched him die of oesophageal cancer in 2010. He refused all treatment and I must admit that treatment sounded awful. He died in less than a year. I also watched my own brother die of cancer back in 1995 and that was heartbreaking. It had already metastasised when he was diagnosed and he was dead in a matter of weeks. We were all in shock.

I saw your other post about that bitter taste. It seems to be one of the effects of taxane drugs.

I did like your description of it. To me the taste I had seemed very metallic.

Keep looking forward with your chemotherapy.

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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Jul 9, 2018 01:54PM sylviaexmouthuk wrote:

Hello Flora,

I think you are right. Just try to bide your time until Wednesday and then make sure that you make full use of that interview and you get proper answers to any questions. Do not be hurried.

I would think you would get some more answers when your mother has an MRI scan at the weekend.

When you mention that your mother saw a locum are you actually talking about a locum at her GP surgery? If not, do you mean she saw some kind of registrar at the hospital? It does not sound as though that locum was at all helpful. As you say, doctors have to be gentle and understanding and give patient hope. Breast cancer is highly treatable and more and more patients are surviving it. Patients need to take one step at a time. We have to accept that some doctors may have a lot of medical knowledge but have poor people skills.

We are all very interested in nutrition on this thread and that interest goes back to the very beginning in 2010. We have had lots of discussions and seem to like the Mediterranean/Rainbow diet. Each individual has to make up their own mind about what they are going to eat. We can only say what we eat ourselves. I have been drinking green tea since the summer of 2005 and I really enjoy it. I buy different kinds but actually prefer green leaf tea and I always make a pot of it in the morning to have with my breakfast but I never drink it on an empty stomach, as it seems to have a strange effect on me. I do not eat any dairy products because of the growth hormones in them, but, again, everyone must do what they feel they want to do. I love nuts and seeds and they are full of good nutrients.

As for Iscador, it is something that is used in Germany to treat cancer. When I was first diagnosed I was somewhat reluctant about the orthodox treatment, so I asked my breast cancer consultant what else I could do. She referred me to a breast cancer consultant working at the Royal Bristol Homoeopathic Hospital. This consultant had already worked with my breast cancer consultant. She advised me to have the orthodox treatment but said she could help me at each stage of the treatment with homoeopathic medication. This was the way I went. I took oral Iscador from diagnosis in 2005 for five years. I took it orally because at the Royal Devon and Exeter Hospital where I was, I was advised not to have injected Iscador because of the risk of infection. Whether all this treatment helped or not I cannot say, but at Bristol my case was considered a success. I had no real problems during my whole cancer treatment, especially during six months of chemotherapy, except for fatigue. Again, we all have to decide what we are going to do and what we are not going to do. Some people are dead against all homoeopathic and alternative treatment but I tend to believe in integrative treatment, but that is just my opinion and I do not try to influence others.

I was interested to know that your dad has advanced dementia. How is he getting on and how is he being treated?

It is true that the mention of cancer is frightening but there are many other diseases that are worse. I think that Alzheimer's disease or any kind of dementia must be awful.

Take care and make sure you and your brother look after yourselves as you support your mother through all of this.

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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Jul 10, 2018 05:59AM flgi wrote:

Dear Sylvia,

In haste as I'm about to go and visit the Maggie's Centre -which gives support to anyone going through cancer. I will report back on how I found it,as I hope others on this thread could benefit (if they have one of these centres near them- I think there are 7 or so round the country?)

Thank you so much for all your information on Iscador. I am definitely going to ring one of the Homeopathic hospitals you mention, and ask them a bit more about this.

My mother did not eat particularly healthily before-not many "bad things" but not enough good things if you see what I mean, but has now started drinking green tea, buying blueberries and sprinkling seeds on her Weetabix! She is also trying out the dairy alternatives. She has also added hummus and avocado to her lunchtime sandwich options.

I am feeling incredibly nervous about our appointment with the breast surgeon tomorrow- particularly because we have had so much conflicting information.

Anyway, it is so helpful having this forum to bounce ideas back and forth on.

I also wanted to send my love and best wishes to all those diagnosed with TNBC who are using or reading this forum (and of course to all those who aren't using it too!)

Flora

IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
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Jul 10, 2018 08:25AM maryna8 wrote:

Hi, Hanieh

It's good to hear from you! I see you have been studying hard for IELTS exams, and then took the test; I think you will have a very good result on this test. I wish you the best of luck, I can understand why you want to go to Canada. Do you have any relatives there?

I haven't posted in just a couple of days and there are a lot of posts to read just since then, I am not caught up yet either.

I'm glad your check-up was good, and glad they are watching the 3mm lump on other breast. Onward we go! Sometimes it seems to me we live from check-up to check-up, sometimes putting it out of your mind, and then being reminded when it's time to go back for another one.

I hope you are feeling well, it hasn't been that long since you finished treatment. Do you think this second go-round of treatment was easier to handle than the first?

Take care of yourself, dear Hanieh. Sounds like you are very busy, are you back to teaching as well?

Talk to you again soon, love, Mary


Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 10, 2018 08:57AM sylviaexmouthuk wrote:

Hello Flora,

I was interested to know that you were going to visit a Maggie's Centre near you. I do know about them because a few years ago two of my nieces did some kind of charity midnight walk for them in London and I sponsored them. I do not have experience of them as I do not know of one in Devon.

What we do have here in the grounds of the Royal Devon and Exeter Hospital, where I had my treatment, is a charity called FORCE. It is in a lovely house and not at all clinical. I went there quite early on in my diagnosis and found it very useful. All sorts of things are offered, from group counselling, one to one counselling, aromatherapy, or just to talk with someone and have a cup of tea. It is useful for patients and their carers. I still receive their newsletter. I made friends there with one of the nurses who had helped to set up FORCE. She took a liking to me and came to my chemotherapy and to see me in hospital. I was very lucky in that respect. My oncologist, Dr Annie Hong, is the patron of FORCE. Exeter Hospital has a good reputation and is allied to Exeter University and the Peninsula School of Medicine.

You mentioned that you are interested in Iscador (it comes from mistletoe). I am not sure what is happening with homoeopathic hospitals nowadays. There used to be just three, one in Bristol, one in London and one in Glasgow. I think they may have changed names now. I know that the consultant I saw in Bristol is no longer there and has gone into private practice. For the five years I took Iscador it was funded by the NHS and Bristol Hospital would send all my medication to me at my home address. I had regular appointments at that hospital, some at the hospital and some by phone. After five years the doctor thought I could be discharged. She did say that I was considered a successful case and asked to use my case anonymously in the lectures that she gave to medical students.

This thread of course is not an alternative one, but there are alternative threads on the bc forum and I do look at them from time to time. They seem very active.

As for London homoeopathic, I think it is called something else, but has homoeopathy in it. We do have another daughter on here posting on behalf of her mother and she is in London. She is called Sarah (LoveandLight) but we have not heard from her in a while. I hope she is still viewing and that her mum is doing alright as she goes through chemotherapy. Her mother was very reluctant to have the treatment as she was a great believer in homoeopathy. I know that they went to that hospital in London. I think it may be called the London Integrative Hospital.

It is good that your mum is changing to a more healthy diet. Try not to push her too much while she is going through treatment, which is very demanding.

On this thread we all believe in healthy eating and fruit and vegetables are very important. Is she drinking her green tea without milk? I was surprised to learn the other day that some people put milk in their green tea. I do not think this is a good idea. I do not touch milk and have not done so for a very long time, even before the cancer diagnosis. Apart from fruit and veg, I have nuts, seeds, beans and pulses. I usually alternate seeds throughout the week, to make sure I have a mixture of pumpkin seeds, sunflower seeds, linseeds, chia seeds, hemp seeds and sesame seeds. I usually grind them up and use them as a base for soy yoghurt and sprinkle some cinnamon on it. I buy Sojade organic soy plain unsweetened yoghurt at my natural food store or free from soy yoghurt, plain unsweetened enriched with calcium from my local Tesco store. Adding hummous and avocado to her sandwich options is a good thing. We are told that the mono-unsaturated fat from avocados is very healthy.

The most important thing, I believe is to steer clear of sugar, processed foods and junk food. I must say however this is what I believe but people will do as they like.

Please do not be nervous about about the appointment with the breast cancer surgeon tomorrow. Ask your questions with confidence and make sure you get an answer that you understand clearly with no difficult medical language. This is your mother's body and it is her right to have a clear understanding of everything.

I am sure everyone will appreciate your love and best wishes. Everyone at all stages of their treatment and post-treatment need all the support they can get.

Take care.

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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Jul 10, 2018 01:12PM adagio wrote:

Hello Sylvia, Maryna and everyone else.

I am doing OK - I do not think much about cancer these days because I am so, so busy with a house full of guests at various intervals throughout the summer months. However, it is good to read about people's experiences - I do not check in very often any more - simply because of time issues. But I do have to remind myself to take things a little slower and prevent myself from getting overtired. This is very difficult especially when feeding lots of people, and knowing that their ideas of food are so vastly different to mine!

I am at home all summer and then we are hoping for a break in September.

I hope everyone is managing to keep cool!

Dx 8/21/2012, IDC, 2cm, Stage II, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 9/25/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/20/2012 AC + T (Taxol) Radiation Therapy 3/25/2013 Breast
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Jul 11, 2018 03:51AM sylviaexmouthuk wrote:

Hello adagio,

It was nice to hear from you and I understand what a busy summer you are having.

I do hope you will stay with us as we do need people who have got through their treatment to help others going through the shock of diagnosis and going through the trauma of treatment.

Wishing you all the very best.

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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Jul 11, 2018 07:20AM maryna8 wrote:

Hi, Flora

I see that you are going through a new and unwanted experience, as you go through this cancer process with your mother. It's such a new world full of things that you never wanted to know, but you are in a good place here. As you already learned, Sylvia is a font of information, and shares all she knows. I welcome you too, and hope for good results for your mom.

There have been a lot of posts back and forth, from what I recall, you will accompany your mom to the Oncologist Wednesday, or yesterday. So there should have been some questions answered, I hope. I certainly hope your mom does not have metastatic cancer.

I hope also you can find help from the Homeopathic hospital or doc to help her through the chemo, it seemed to do Sylvia a lot of good to take the Iscador. I don't feel I have much wisdom to offer about chemo, it was hard on me and I just put my head down and got through it.

I also had mastectomy before chemo, I didn't know enough to question it then, now I see that most TNBC women have the chemo first. I don't think the MO I saw had seen many patients with TNBC, he anticipated (I suppose because of my age, 61) that I had ER+ (hormonal) BC, and seemed shocked when it wasn't.

Flora, my heart goes out to you and your mom. You can get through this however, I'm glad you have good doctors.

I will talk to you again soon, Mary


Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 11, 2018 07:39AM - edited Jul 11, 2018 07:42AM by maryna8

Hi Pam

I'm glad you brought up your evening with friends playing records! A couple of years ago my granddaughter wanted a turntable for Christmas. I didn't even know that turntables and records were back in style somewhat. My turntable and speakers are in one of my "storage" rooms, I put them away a few years back when technology came out with smaller ways of listening to music. But yes, it used to be so much fun, listening to records, then it was cassettes, then CDs. I can remember the last time I played a record on my turntable, it was "White Bird" by It's a Beautiful Day, I played it over and over. I love a rock band with a violin!

Your trip, and the pics you posted, sounds like it was just beyond words enjoyable! I'm so glad for you, and you definitely made me want to go there too. And have to repeat, the pics are amazing!

I have to go for now, but will talk to you again soon,

Love, Mary


Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 11, 2018 07:40AM maryna8 wrote:

White Bird, from 1969

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 11, 2018 07:59AM maryna8 wrote:

HI, Sylvia

I will be back later to respond to your latest post and other things. I need to get outside and do chores before the heat settles in again. Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 11, 2018 11:03AM maryna8 wrote:

HI, Sylvia

You have been busy giving Flora much-needed support, I hope she and her mother have had some questions answered by the docs by now.

I was reading one of your posts where you referenced a clinic called FORCE. It sounds wonderful, and there is nothing like that here where I am. Of course, I got my treatment in a much smaller city. I even had trouble finding group counseling, the Cancer Clinic where I treated had one meeting a week for people in similar situations to me. Later I found another one that met once a week but for some reason it just made me feel worse. That is how I found this one that you started, and it is always open and full of information and people who know exactly what I was/am going through. I think the FORCE clinic sounds wonderful and welcoming for someone who needs it. I am not familiar with a Maggie Center either, it must just be a thing in the UK, I would have been glad to see such a place.

I have heard on the radio that there are now a couple of homeopathic docs practicing in our local city. That is something new. There is also a doctor who advertises this: you pay her a fixed amount each year and she is always available to you, and your visits to her will last as long as necessary. She answers the phone herself, and for this fixed amount you can see her as often as you like in that year. She can order tests, drugs, and scans and you will still have insurance that will pay for that, she must be paid in cash. I have heard her on the radio and she sounds very intelligent, and very pleasant. I must say it would be refreshing to have a doc visit and have the doc actually listen to me instead of standing by the door with one hand on the doorknob.

I must go again, I am having lunch with a friend. We have a new restaurant in the nearby city, it is Vietnamese and we are curious.

Talk to you again soon, love Mary

PS The hebes are beautiful! I didn't know they came in so many colors! Thanks for the pics.

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 11, 2018 12:48PM SusieW5 wrote:

We have a Maggie's Centre at Charing Cross and I know many cancer patients find them a great source of support and comfort. It's in its own building in the hospital grounds, tucked away privately. You can just sit down there with a cup of coffee and a book, chat to people or not as you want, or attend a relaxation session, and there are groups for different types of cancer though I haven't been to the one for Primary Breast. Then there are drop-ins for young patients -- a pretty full programme five days a week.

They began with a (?Scottish) woman called Maggie who died of breast cancer a few years ago. While she as dying, she worked with the hospital and doctors to try to create a new -- less clinical -- sort of support for both patients and families. Those bereaved by cancer can also access support there.

For people who don't live near one, an online version is available.

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Jul 11, 2018 03:59PM lilyp6 wrote:

Hello Everyone,

Mary, Thanks so much for posting the link. Music can be so therapeutic. I actually forgot how to work a turntable, but I'm enjoying it again now. There was really something to having tangible items, like newspapers and records. Everything is more convenient now, but just a little less special.

Sylvia, I enjoyed reading about FORCE. What a wonderful thing to see about the emotional health of cancer patients. It sounds like it offers an in-person community.

We are not big football/soccer fans, but can be really interesting to watch the World Cup in another country. We were able to watch Colombia play Japan in 2014, while we were in Tokyo. It was a fantastic experience. And as you know, England defeated Colombia last week. I think it's fun, but then again, it's not a huge part of the culture here.

Susie, Maggie's Centre sounds like a wonderful resource too. It's so nice to see women here who are actually from the UK. Your chemo treatment will be behind you before you know it.

Pam

Dx 5/25/2016, IDC, Right, 4cm, Grade 3, ER-/PR-, HER2- Chemotherapy 6/6/2016 Carboplatin (Paraplatin), Taxol (paclitaxel) Chemotherapy 8/29/2016 AC Surgery 12/1/2016 Mastectomy: Left, Right Radiation Therapy 1/15/2017
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Jul 12, 2018 07:47AM flgi wrote:

Dear all-Sylvia, Susie, Mary, Pam and others,

Following your helpful support in the last few weeks, I thought I'd sum up our experience yesterday. We've certainly got some thinking to do - we've got some real dilemmas as a result of everything they said!

The good news for us was that my mother had been misled/misheard about the "metastatic" part of the triple negative diagnosis. There is no current indication that the cancer has metastasised. The tumour was 2cm (originally they said "over 3") and it has not spread to her lymph nodes. It also has one marker -progesterone-that is weakly positive-3-4 out of 8.

I say the above being aware that some people do hear at their appointments that the cancer has spread to lymph nodes or, more seriously, metastasised- I don't want to be seen to "crow" too much about the "relatively" good news but want to say to those people how difficult it must be to hear such things-things we were fully expecting to hear. Also, since I had been prepared for hearing it had metastasised and had read up on it, let me say once again that I do hear of people living for a long time with metastatic TNBC these days.

Anyway, the new thing that is difficult for us is that the surgeon doesn't want my mother to have chemotherapy because she is 73 and they are reluctant to give it to anyone over 70. I am worried about this because I know chemotherapy is all they can give TNBC (which her tumour is still very much classed as) and almost everyone I have come across on these forums has had it-and many seem to have done very well.

She said this decision was partly made because the tumour is not too big and has not spread to the lymph - but I see that all the younger people I've come across with this sort of tumour have had chemo. I have also seen that people with small tumours with no spread do experience recurrence, maybe not quite as much as people with more challenging tumours, but still quite a lot.

She has also raised the possibility of putting my mother on hormone tables because of the weakly positive progesterone marker, but has said the oncologists with whom she discussed this thought it probably wouldn't really be of much benefit and she would likely suffer side effects to little avail.

So, some questions answered, but more raised..

Does anyone know of anyone with TBNC over 70 who had chemo?

Did anyone else have a weakly positive progesterone score?

In other news, I visited Maggie's and, much as Susie described the one in Charing Cross, found it a lovely, gentle, relaxing place, in which it feels completely "normal" to have cancer! The Oxford one is a wooden-clad building up on stilts, so that the rooms look out onto the tree tops and you feel like you're sitting on the tree canopy. I will definitely be visiting again. I came out feeling much calmer about everything going on, and elevated by how nice everyone was to me!

Thanks as ever to all reading this and going through this. What a minefield it is!

We're off to Guy's Hospital tomorrow to get a second opinion from an oncologist there.

Flora x




IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
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Jul 12, 2018 09:49AM SusieW5 wrote:

I'm so happy that there is no sign of metastasis in your mother's cancer, Fiona.

I'm 63 and, looking round the chemo day unit every time I visit, I don't see many people who look over 70, but can't help feeling that chemo for 70+s must be common enough. Your oncologist may simple consider that the downside outweighs the advantages given that there was nothing in the lymph nodes. Presumably, they are offering radiotherapy, which, as I understand it, will prevent any such spread.

Your mum's case sounds very much like one where a second opinion will be invaluable.

I can't offer any insights other than what my own oncologist told me, which was that having chemo would add 10% to my 10-year-survival chance, but then there were a few cells in one of my lymph nodes. To me, this says that the difference is not huge but big enough for me reluctantly to agree to chemo and I'm glad I did as it hasn't been anything like as bad as my fevered imagination suggested.

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Jul 12, 2018 10:48AM sylviaexmouthuk wrote:

Hello Flora,

Thank you for your post and for letting us know how you and your mother got on yesterday.

I was so glad to know that you had a lot of good news and that you now have some facts.

It is good news that the tumour is relatively small and that there is no spread to the lymph nodes. You mentioned about the weakly positive progesterone. I can tell you that when I was diagnosed with the triple negative receptors that I was told my progesterone was 5% and I was told that this number was negligible. If that were me I would not want to take any anti-hormonal medication. These medications have nasty side effects, but of course only your mother can make that decision.

As for what the breast cancer surgeon said about chemotherapy and that he does not want your mother to have it because she is 73 and they are reluctant to give it to anyone over 70, it is difficult to know what to say. It is true that the older you are the weaker your immune system probably is and it may be more difficult to tolerate the side effects. It seems to me that when it comes to chemotherapy and indeed radiotherapy, should the oncologist not be involved with such a decision? Has there

been any mention of radiotherapy? There are lots of patients who just have surgery and radiotherapy.

I get the impression that, as time goes on, it could be that the consultants are trying to get patients through their cancer with the minimum treatment for the best results. If you can get a patient into no evidence of disease (NED) without months of chemotherapy, it must be all to the good.

Ultimately, I think it is your mother who should make the decision and it is about whether she feels strongly that she wants it or strongly that she does not. There are all sorts of side effects to chemotherapy drugs, including hair loss, peripheral neuropathy of the hands and feet, especially with taxane drugs and lymphoedema also from taxane drugs, but radiotherapy can also cause lymphoedema.

Let us hope that someone over 70 will post in to say they had chemotherapy but really it is best not to compare one patient with another.

I would think a lot of your mother's decision would be based on the state of her health at the moment and whether she has any serious chronic conditions that might be a negative thing for chemotherapy. Remember some, if not all, chemotherapy drugs affect the heart.

I was glad to know that you enjoyed your visit to the Maggie's centre. Places like these are so very useful for patients and carers during treatment. I enjoyed my visits to the FORCE charity and my husband, Raymond, enjoyed them too. He had an Indian head massage there, as well as reflexology. He found them relaxing.

I also had visits at home from Hospiscare nurses and I used to enjoy our chats together. Raymond used to go to the Hospiscare centre in Exmouth to meetings for the carers of patients. We also got invited to a meeting of patients and carers together and had a question and answer session. We are lucky to have these charities and must not forget MacMillian nurses and others.

I do hope all goes well tomorrow when you go to Guy's Hospital for a second opinion. Remember that you and your mother are in charge of everything.

That is about all for today. Take everything calmly and one day at a time. Everything is so stressful in the beginning, but things do get better.

Fond thoughts.

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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Jul 12, 2018 11:16AM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your recent post.

I very much appreciated FORCE when I was going through treatment. It was somewhere to go that did not look at all like a hospital. I felt very strange in a hospital setting as I had never been ill. I do remember how awful I felt that first time I walked into that big ward where all the patients were having chemotherapy. I could not believe it had become part of my world.

I was interested to know that you are going to have a couple of homoeopathic doctors practising in your local city. What is your local city? I like to pinpoint you on the map when I watch the world weather forecast on TV5 in French, or France24 news (in English). Do you think you will pay a visit to the homoeopathic doctors?

I found the appointments I had with that homoeopathic doctor in Bristol very interesting and very useful. Sometimes the appointments were 45 minutes and I really felt the doctor got to know me. I have just discovered that she is no practising in a private clinic in Bristol. Strangely enough, it is the same clinic where I had one consultation with a private nutritionist for an hour. It was through her that I learned about the bitter apricot kernels.

I was glad to know you liked the hebes. They are very useful shrubs to have and do attract bees and butterflies.

I am still researching all about varicose veins as I realise the way have been treated in the past seems wrong. If you Google "minimally invasive endovenous treatment" you will find lots of information and this new treatment has been available for sometime, but probably only privately. It is one of those treatments where you can walk in and out of a clinic or surgery quite quickly. I can not understand why orthodox medicine cannot realise that varicose veins are not a disease in themselves. They are a symptom of an underlying problem of venous reflux, where valves in the vein are not functioning properly and blood is going down into the ankles and feet, causing inflammation, staining and eventually ulcers.

When I decide to get to the bottom of something, I am like a dog with a bone.

Thank you for posting the video and I shall try to listen later on. I seem to be forever chasing time.

I have not seen anything lately from Chris Woollams of Cancer Active, but I did have an email from Ty Bollinger but I have not had time to look at it.

I have spent hours this morning watering the grounds here. The rain will just not come. There is a lot going on with Brexit seemingly being betrayed, Donald Trump here for a short visit, not to mention more so-called Novichok poisoning. Despite all the boasting, England has not made it to the final of the World Cup, so it is NOT coming home after all!

That is about all for today, Mary. I do hope I have not forgotten anything, but if I have please let me know. Many of our group have not posted in a while. I am wondering about Kath and CocoonCat in Australia as I heard on the news that Melbourne was experiencing record cold weather.

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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Jul 13, 2018 05:46AM sylviaexmouthuk wrote:

Hello everyone,

Here are a few more photographs from the grounds here. The first shrubs are flowering deciduous ones, the name of which escapes me for the moment, but I think it is Spirea. The rose is a Peace rose just about to bloom. It is my favourite rose.

Wishing you all a good weekend and hoping to hear from those who have not posted in a while.

Best wishes.

Sylvia xxxx

More geraniums

Peace rose bud

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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Jul 13, 2018 10:36AM MoniThor wrote:

Hi Sylvia,

What beautiful grounds! I love all the pictures you posted of the flowers.

I have not been posting although I did catch up on reading through the thread this morning.I appreciate all the inspiring women here and how you respond so eloquently to each of us. I will read a post from someone newly diagnosed or recently in treatment asking questions and think “I wonder if....” or “maybe...” and then you will respond to them with many of the things I was thinking. But you word it so much better than I could! So, thank you!

I am now 3 weeks post final chemo,and still having many side effects that I thought (hoped) would be gone by now. Especially the neuropathy in my feet and hands. Besides the gabapentin, it seems not much can be done. I did meet with a physical therapist yesterday, who measured both arms for lymphedema comparison. She explained that I was currently at a “stage 0” (no lymphedema ‘yet’). She gave me stretches and exercises and things to watch for. I asked about radiation (which should start in the next couple weeks). She told me what I already knew. That radiation can cause lymphedema. But that I could develop it anyway. More likely in next 3 years, then chances diminish significantly after, but I still have about a 15% chance of developing lymphedema after 3 years. She is holding a class on lymphedema on July 26th that I will be attending. I am interested in learning more about the lymphatic system. I will let you know what I learn.

I’d better stop here. I have yet another appointment today. I seem to be busier now that I am done with treatment than I was during chemo!

Take care, everyone, and have a great weekend.

Monica

Dx 12/21/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2- Surgery 1/5/2018 Lumpectomy; Lymph node removal Surgery 1/5/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 2/5/2018 AC + T (Taxol) Radiation Therapy Whole-breast
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Jul 14, 2018 08:16AM maryna8 wrote:

HI, Sylvia

The bushes do look like spirea, I have 3 of them and your pics reminded me I need to water them this morning. Our hot, dry weather continues with a chance of a little rain today. The peace lily is beautiful, one of my favorites too. I had one but it died, I have trouble with hybrid teas, I only have one beautiful yellow shrub rose, and it has been under constant attack by Japanese beetles. I also love the ease of geraniums, they are beautiful and very hardy in the summer heat, and bugs don't seem to like them.

Talk more later, love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 14, 2018 09:12AM sylviaexmouthuk wrote:

Hello Monica,

Thank you for your post. I was glad to know you enjoyed the photographs of the flowers.

It is good to know that you have caught up on reading the posts. I am glad to know that you find them useful.

Never be hesitant about posting and saying what you think, even if you feel that someone has already answered questions posed. All views are helpful and contribute to make the thread what it is. Two heads are always better than one.

It does take a very long time to recover from chemotherapy treatment and with your being just three weeks from your final chemotherapy you will be bound to be suffering from side effects. Your body has been flooded with very toxic drugs.

With reference to the peripheral neuropathy in the feet and hands, I fear that it will take a very long time for that to become tolerable and the information I have is that there is no cure. The nerves have been damaged. I am over thirteen years since diagnosis and a year less since I finished chemotherapy and I still have peripheral neuropathy in the feet. Mine does not bother me too much and it is a feeling of numbness and stiffness rather than pain. My oncologist, two podiatrists and my GP have all said there is no cure. From time to time I have my podiatrist test the feeling in my feet by prodding them with a needle while I keep my eyes closed. I feel absolutely nothing. The soles of my feet always feel as though they are very dry when, in fact they are well moisturised. I have not had this neuropathy in the hands.

I do hope if anyone has heard differently about neuropathy that they will post in and let us know. We need to keep the thread up to date and any new information needs to go into it.

I am very interested in all aspects of lymphoedema and feel that the best person to see is a lymphoedema specialist and for information a patient can do no better than read the most up to date book on it by a man who has devoted his career to it. The book is Let's Talk Lymphoedema – The essential guide to everything you need to know by Professor Peter Mortimer and Gemma Levine.

A lymphoedema specialist does much more than measure the arm and compare it to the good one. They do measure it but in very many places along the arm but they do a percentage of the arm affected. They also feel the arm to check the weight because it can become heavy because of the imbalance of fluid. They also weigh you because lymphoedema can make you put on weight because again of the imbalance of fluid due to a damaged lymph system. They show you the exercises to do to try to keep the lymph flowing and also how to do manual lymph massage.

All three breast cancer treatments can cause lymphoedema, be it surgery, chemotherapy or radiotherapy and it can come on at any time. Taxanes are the ones that I have been told cause lymphoedema. Incidentally taxanes are also the ones that cause neuropathy.

I must admit that the lymphoedema specialists have never mentioned stages to me and have never said that chances diminish after a certain number of years. I cannot really explain clearly what happened to me last year. all I can say is that my arm became swollen a few days after I had a flu injection in the other arm, the first injection in twelve years. I had a little lymphoedema just after I finished my treatment in 2006, but it did not amount to anything.

You probably know that you should not have any injections or have blood pressure taken in the affected arm.

The specialist also look at the affected arm because the skin has a certain look that it takes on because of the lymphoedema. They also look at it to make sure there is no infection because with lymphoedema you can get cellulitis which needs treatment with antibiotics.

Finally, I have read that lymphoedema can make your blood pressure go up.

You can see from all this that lymphoedema is no picnic and seems to be quite common and to have been dismissed for quite some time. GPs here, apparently, know very little about it.

I do hope we can all learn a lot more about lymphoedema when you have your class on July 26th.

I did post a diagram of the lymph system some time ago this year but I shall try to post another one. The lymph system is the cleansing system of the body and it is quite difficult when this cleansing system is impaired.

I do hope all will go well with you and that radiotherapy will start soon and then your treatment will be finished.

Have a good weekend.

Fond thoughts.

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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Jul 14, 2018 09:15AM sylviaexmouthuk wrote:

Hello Mary,

I was so glad to read that you liked the shrubs. They are indeed spireas. I planted some of them in my garden in Canada. I also had Bridal-wreath spireas there.

The thread has gone quiet again with quite a few of our group not posting. There is still no news of Marias.

Have a good weekend.

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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Jul 15, 2018 08:19AM maryna8 wrote:

Flora

I am glad you are having a second opinion, it seems to me that giving or not giving treatment to a patient would be determined on an individual basis. I posted the following link which refers to this subject.

https://www.oncnursingnews.com/publications/oncolo...

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 16, 2018 04:20AM flgi wrote:

Hello to everyone- in particular Sylvia, Mary, Susie and Monica, who have all recently posted on this thread.

Thank you once again for everyone's helpful comments, links and feedback. I found the article on the elderly and chemotherapy interesting, Mary.

I thought I'd update you on where we are with my mother's diagnosis.

Following our appointment with the Oxford surgeon(who was pretty much recommending no treatment), we got a second opinion from Dr Mark Harries, a consultant oncologist at Guy's in London.

We came out with a rather different picture.

His view was that, although my mother's cancer was small and had not spread to the lymph nodes, TNBC is an aggressive cancer (as we all know) and it is really best to throw everything one can at it at the stage to reduce the risk of it returning and spreading -since it becomes more "tricky" then. (Nevertheless he did say that, for Stage 4 TNBC, there have been some promising findings recently- using immunotherapy and some kind of drug that turns off a molecular switch).

His view was that, since she is a generally fit and healthy 73 year old, he would definitely advise chemo. He said that, if it was his own mother at 73, he would recommend it.

He also implied that he felt Oxford were being rather "leisurely" in their treatment of my mother -the next appointment with the oncologist isn't for 3 weeks-and he thought that, if she was going to have chemo, the sooner the better.

So we've now make a private appointment with one of the Oxford oncologists to try to speed things up. We're seeing her tomorrow.

Dr Harries also said he would advise taking biophosphanate (spelling?), a drug relating to the bones, which has recently been shown to lower the risk of breast cancer returning in all breast cancers by 1-2%. He said it is well tolerated, and, taken together with chemo, would reduce the chances of recurrence by almost 10%. Is anyone else on this? If not, it might be worth asking about it?

So we are now assuming that chemo will happen and tying to steel ourselves for that.

More following our private appointment with the Oxford oncologist tomorrow...

We have all enjoyed a weekend "off" thinking about cancer following the emotional rollercoaster last week! The wonderful sporting events on TV were a good distraction, and the weather continues to be amazing here.

If anyone reading this lives in London, I would really recommend Dr Harries - who managed to strike just the right balance between being "clinical" and "human".

Hope you're all well and that those going through chemo are able to find small things to look forward to get them through the days.

Flora

IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
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Jul 16, 2018 08:21AM - edited Jul 16, 2018 08:25AM by Kathseward

hi everyone

Great to see every everyone doing well. We remain in a very cold winter which is a bit depressing so I'm try to keep as busy as possible! Really enjoyed Pink in Adelaide last week and spent lots of quality time with my grandsons. My daughter is also expecting again at the end of January which is exciting

I passed my two year mark on July 8 th and my oncologist doesn't want to see me until January. My second mammogram is coming up in September and is a terrifying thought. My mind still goes to those dark places so I'm try to keep as busy as possible. Uni starts again next week so I'm looking forward to that.

I've enclosed a clever pic my daughter took of Mundi Mundi plain just outside Broken Hill which featured in the second Mad Max movie. Have a great week everyone

Much love

Kat


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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Jul 16, 2018 08:23AM Kathseward wrote:

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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Jul 16, 2018 12:09PM MoniThor wrote:

Hi Flora,

It sounds like you had a very informative meeting with Dr. Harries. And he seems like a gem. Giving you facts and his professional opinion in a warm and gentle way.

And his advice was very similar to what my oncologist said. Although I am a bit younger than your mother (60 years old), my dx is similar. Small tumor. No lymph node involvement. I had a lumpectomy in January and had a very aggressive chemo treatment that lasted 5 months. Although it was rough, with some side effects, I tolerated chemo fairly well and my blood tests were always good. The best advice I received was to drink lots of water (stay hydrated), excercise when possible (take walks) And get plenty of rest.

Also, having friends and family support was invaluable. I never went to a doctor appointment or infusion appointment by myself and had most meals prepared for me. All of my energy was focused on recovery. Your mother is very fortunate to have you and your brother for support.

I was interested to learn Dr. Harries recommended biophosphanate for your mother. I had never heard of that drug so I did a little research. I read a couple of case studies that involved women that were er+ and posts on this site from women who were taking an oral form of the drug. The small amount of research I did was interesting and I will have to read more.

I will be thinking about you and your mother today as you have your appointment with the Oxford oncologist. Let us know how it goes.

Monica

Dx 12/21/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2- Surgery 1/5/2018 Lumpectomy; Lymph node removal Surgery 1/5/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 2/5/2018 AC + T (Taxol) Radiation Therapy Whole-breast

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