We are 220,316 members in 81 forums discussing 155,748 topics.

Help with Abbreviations

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 May 21, 2019 07:08AM 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 11 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
Log in to post a reply

Page 425 of 451 (13,527 results)

Posts 12721 - 12750 (13,527 total)

Log in to post a reply

Jan 6, 2019 12:12PM - edited Jan 6, 2019 12:19PM by viewfinder

Yes, Sylvia, my sister begins her chemo late January and has her surgery next Tuesday early evening (Seattle Time). Radiation follows chemo.

She and I had a good talk yesterday, and she really is overwhelmed with work for her upcoming show. Not knowing how she will feel at the time of the show makes her hustle now. Fortunately, she has some good staff that will run the show if she can't or if she can do it only on a limited basis. Her show is in early March. I've helped her a couple of times in the past (yes, I flew to Seattle; though the show is actually held in Portland Oregon and we drive there.

I'm compiling a list of everything she might need during chemo. I've read dozens of articles and the more I read the more I add to the list. I may post it in a forum to get input from others to see is I have everything covered.

I'm doing fine; no side effects from Anastrozole that I know of, though I feel tired a lot but some of that can be attributed to age and the weather (we've had non-stop rain for the better part of three months; the sun shining only very ocassionally.

I'm not sure about Brexit and all the controversy surrounding it. I was in Finland around the time they decided to join the European Union and, later, adopt the Euro. Sweden refused to change their currency though the did join the EU. I've never understood why they wanted to join the EU because, to my way of thinking, they were giving up a good part of their sovereignty.

I don't really follow the EU that much so I don't know how it's working out for the other countries. But I think if the UK wants to leave the EU, they should be allowed to do so without undo interference from other EU members.

btw, I never realized people living in the UK are subjects, not citizens.

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
Log in to post a reply

Jan 7, 2019 08:05AM Rosiecat wrote:

Hello Sylvia,

I can well believe your aunt when she says that pie and mash can be a bit hit and miss. I've always had a deep suspicion of any shop bought or restaurant made pies. Puff pastry is a very effective camouflage for a multitude of sins. Your aunt obviously enjoyed jellied eels, but I doubt if I'll ever be tempted.

I eat very little meat, but do still eat fish. Even so, I think a vegetarian diet is healthier and I intend to return to it over the next few months. Michael is not so keen, but she who does the cooking calls the tune.........

I've been reading a lot about the vegan diet of late. It does seem that many people are now committed vegans and get all the nutrients they need. In the past, nutritionists and medics pushed meat as the best sources of protein and iron. Nuts are cheaper, healthier and cruelty free. Almonds are rich in iron, I also eat cashew nuts.

I don't like the behaviour of the more militant vegans either. The rise of the rent a mob mentality here and in the rest of Europe is disturbing - whatever their cause.

I take Atorvastatin, 40mg and Candesartan, 4mg. Despite a healthy diet, the bad cholesterol kept on rising. My blood pressure has been stable since taking Candesartan. However, I've needed to check it daily since chemotherapy began as it sometimes falls. When this happens I don't take Candesartan until the following day after another BP check. Our GP surgery is very careful with statins. I do know that some surgeries seem to hand them out far too freely and without justification.

I hadn't realised that breast cancer cells could mutate into other types. I've wondered about it though after reading some of the cancer stories on other threads. For example, more than one type in the same breast or in the other breast at the same time. I had just put it down to coincidence or sheer bad luck.

As for stick-on eyebrows, I wouldn't dare. Surely they must be obvious? I can spot false eyelashes easily enough and have never worn these either. I did buy some many years ago, but never took them out of the box - and this from someone who admits to being fairly frivolous at times. I guess I'm more conservative - (definitely small 'c' ) - than I thought. I shall look at this more closely after treatment is out of the way. Might be time for a change!

That's about everything for now.

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 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Jan 7, 2019 09:04AM maryna8 wrote:

Hi, viewfinder

As Sylvia says, we are free to post what we want here. What I usually choose to do is touch lightly on the areas of politics, mainly because things are so polarized in this country and I don't want to put off someone who might be coming here for support. That being said, the list of accomplishments by the President is quite something and also is something that will not be seen on the nightly news shows! And yes, it is unusual when a politician actually keeps his promises, nobody expects it. Also as Sylvia said, UK is having much the same sort of thing going on, many politicians posturing instead of doing anything useful. To think we have to pay these people salaries, sweet perks and then nice retirements!

Although I do have acupuncture regularly, I am not familiar with Acutonics, although I suppose tuning forks are used to give the same effect as the tiny needles, or perhaps they are used along with the needles. I do know that sometimes electrodes are applied to the needles once they are inserted, my doc tried that but I did not handle it well! Perhaps checking with her oncologist is the best thing to do.

I see your sis is having surgery tomorrow the 8th, I wish her the best of outcomes.

Talk to you 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)
Log in to post a reply

Jan 7, 2019 11:38AM maryna8 wrote:

HI, Sylvia

I want to thank you and Raymond for your enduring friendship and generous spirits, and for making this thread possible.

Sis-in-law and I will go to the city this afternoon and spend the night since we have a very early morning flight. I have been fighting a sinus issue/quasi-cold/not flu since last week, probably caught because of all the close contacts with people over the holidays, and also I often have trouble with the wild fluctuations in the weather. I did check with my doc last week, because of upcoming trip. He gave me one of his special shots, which is mostly steroid, with a touch of antibiotic. The steroid gives some energy and helps with congestion, I suppose I will go though I am not 100%. Doc thinks once I am in nice, warm, stable weather I will feel much better. In the meantime, I am packing and making quite a mess of it, but the nice thing is tonight I will be in a room and can throw unnecessary stuff in the car and leave it.

I still have no diagnosis on my other, ailing car, I am afraid it might be serious.

As to the remodeling of the 2 rooms, I don't have much patience with it all, I'm afraid. My contractor called last night asking questions I thought had been answered last week. At this point I just want it finished and the details are not seeming very important. Not my cup of tea!

So you live in a good-sized city and are quite close to a large one. That makes things convenient. I like living rurally but it does seem to require a lot of driving. Cars are important here! Very nice to be so close to a very good hospital.

As to HRT, I can't go back in time and undo it, but I do think I was left on them too long. I did question it every year, and was always reassured that they were so beneficial. I think hormones are powerful things and affect more than we know. My problem was that I had constant bleeding because of non-cancerous tumors on my uterus. Instead of doing a lengthy surgery to remove them, the surgeon removed the whole thing. In hindsight, it would probably have been better to do the surgery and leave the uterus, which also has a lot of reasons for being where it is.

Politics, yes. I am leaving for a sunny isle, so will probably pay no attention to it for a week or so. And probably won't miss much. I do find it amazing that so much has happened, as in viewfinder's list, that most know nothing about because the "news" is just repetitive junk for the most part.

I am off, and will check in while gone, wish me good health!

Talk to you soon, my friend, 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)
Log in to post a reply

Jan 7, 2019 11:46AM maryna8 wrote:

Hi, Susie and Gill

I have thought about the eyebrow tattoo too, mine are quite sparse since chemo. I have checked it out, the esthetician makes tiny cuts in the brow, and then dye is put on to sink into the skin. Sounds painful to me, I haven't got up the nerve yet. My sis-in-law has the tattooed eyeliner which looks very good. She puts on temporary eyelashes, or has them put on before a trip. The upshot is that when she wakes in the morning she looks great, I look like a plucked rabbit, because I am unadorned and have to add any embellishments later.

I don't think I could be without a little meat and fish. There are days when I don't eat any, and it's fine, but eventually I get a very hollow feeling that is only satisfied by very dense protein. Nuts just don't do it. I can eat lentils and split peas well, but the legumes are very hard for me. I like them and I can eat small amounts, but I really can't tolerate enough of them to satisfy my protein needs.

Gill, my hair started to come back while I was on Taxotere. Apparently it is easier on follicles than A/C.

I better get busy, talk 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)
Log in to post a reply

Jan 8, 2019 07:42AM sylviaexmouthuk wrote:

Hello Val,

Many thanks for your recent post. I can understand how busy you must be with your new baby granddaughter.

It seems as though so many people are dealing with the pain of arthritis in various parts of the body. Have you had the hip checked out to see if there is any osteoporosis? I vaguely remember reading some time ago about a connection with chemotherapy and later developing arthritis.

Take your time catching up on this thread, but it is worthwhile doing as the posts are always interesting and informative.

Thank you for sending your words of encouragement to those going through treatment. Those words are very important.

That is all for now. Take care and keep well.

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
Log in to post a reply

Jan 8, 2019 07:52AM sylviaexmouthuk wrote:

Hello Susie,

As for eyebrows, I do not really know what women get up to. Not that long ago, in a Superdrug store, I saw a section had been set up where a young woman was doing something to women's eyebrows that was called threading. I do not know if that is what Mary is describing.

I noticed in your post that you said you are taking statins and a medication for high blood pressure. I was wondering how long you have been on them and whether you have had any side effects. I know that the medical establishment seems to want anyone over 40/50 on both of these medications. They seem to change the numbers as well. I do wonder about this. Cholesterol is made in the liver and blood pressure varies all the time. Where are these numbers plucked from and who thought of good and bad cholesterol? It is a bit like Brexit. The Leave vote won the referendum and leading up to the vote it was leave or stay, but suddenly someone started up Hard Brexit, Soft Brexit etc. The last one I heard was Smooth Brexit!

I hope you are having a good week.

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
Log in to post a reply

Jan 8, 2019 08:08AM sylviaexmouthuk wrote:

Hello viewfinder,

I was interested in your latest post of January 6th.

I was wondering about the list you are compiling with reference to your sister's chemotherapy treatment at the end of January. What exactly are you putting on that list? It would be interesting to put it on this thread and the TNs. These two are the most long lasting threads and get a lot of views. I would be very interested in reading it because the only way we progress in all of this is through information. My own view on getting through chemotherapy is that you must make sure you keep well hydrated, take rest when you feel you need it and have gentle walks, keep strong and keep looking forward, even when you have upsets. Eat healthily, avoid raw foods and shellfish, because of the fear of infection, stay away from other people with colds etc., keep away from public transport and crowded places, keep away from GPs surgeries, full of sick people! These are a few of the things that I did.

What kind of articles have you been reading?

I think a good book that people could read as they go through treatment is one of the very latest, entitled The Complete Guide to Breast Cancer – How to Feel Empowered and Take Control by Professor Trisha Greenhalgh and Dr Liz O'Riordan, 2018 – expert doctors and breast cancer survivors.

I have just bought a book entitled Snowball in a Blizzard – The Tricky Problem of Uncertainty in Medicine by Stephen Hatch, first published 2016. "Like a conversation with a doctor you would trust with your life" - Ray Tallis.

Brexit continues and it is such a muddle.

That is all for 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
Log in to post a reply

Jan 8, 2019 08:18AM sylviaexmouthuk wrote:

Hello Gill,

I think with our nutrition it is important to enjoy our daily food and not to make it a chore. I did read once that we should not make major changes in our diet when we are going through cancer treatment, but I am not sure I agree. I just think you need to make the changes slowly. I think we all have different needs. I have not eaten meat or poultry for many, many years, but I do feel the need to eat some fish, but I only have frozen wild salmon fillets and North Atlantic frozen haddock fillets. I do have some frozen whole North Atlantic prawns for iodine, but the set of regular daily nutrition is fruit and vegetables, nuts and seeds, beans and pulses and soy yoghurt and soy drink (unsweetened).

It is best to let Michael do what he feels he wants to. Raymond and I are are lucky that we both want the same nutrition, especially as I am cooking it! We do have tempeh and sauerkraut, but these are an acquired taste.

That is about all for 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
Log in to post a reply

Jan 8, 2019 08:26AM sylviaexmouthuk wrote:

Hello Mary,

I hope that by the time you read this you are relaxing in some nice warm climate and that you can forget the repairs to your farmhouse and your ailing car.

Brexit drones on and yesterday and today Theresa May has been hosting drinks parties in Downing Street to try to buy off MPs who have said they are going to vote against her proposed Brexit deal. The vote will be by Parliament on January 15th and she is expected to lose. Never say never. I do think it is a bit much that taxpayers' money is being spent on drinks to buy votes.

That is all for today. Enjoy your break.

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
Log in to post a reply

Jan 8, 2019 09:26AM - edited Jan 8, 2019 10:04AM by viewfinder

Hi Sylvia,

Below is the list I sent to my sister. It's nicely formatted but I am not sure how it will look because the site formats poorly, if at all. If anyone wants a formatted copy that they can print out (word or pdf format), pm me with your email address and I will send it. My browser of choice is Chrome, but when I spoke about this problem with the mods, they said to use Firefox, so that's what I'm using for this post.

I've spent hours researching and putting the list together but I've never been through chemo so the list is not based on personal experience. For those who have been through chemo, please let me know if I've left anything out and if you have items that should be added to the list. I hope it is helpful.

******************************************************************

CHEMO TIPS

The following are some suggestions I gleaned from cancer articles and participants in the breastcancer.org forums. Check with your doctors about some of the meds taken orally, etc..

If your breast surgeon hasn't mentioned lymphedema, ask if you will eventually get some education about it.

Ask oncologist about: Peripheral neuropathy

Ask about Claritin (which many take because it helps with pain during chemo)

Tylenol (painkiller) or Ibuprofen (ask your oncologist which is preferred)

Bring to Chemo treatment

Bring water and snacks including a small sandwich to chemo treatment; a blanket; laptop, phone or book. Don't drink too much water before treatment so you don't have to go to the bathroom too many times.

People recommend wearing slippers around the house, not going barefoot

Oral hygiene

  • Biotene mouthwash - helps prevent/treat sore mouth
  • Extra toothbrushes (extra soft bristle)

Miscellaneous items

  • Two thermometers (since tracking temp matters) - digital thermometers may be easiest.
  • Lip balm
  • Medical gloves (for those who help)
  • Kleenex
  • Squirt bottle to keep by the toilet (perineal irrigation bottle, eg Medline Cleansing Bottle available on Amazon)
  • Flushable moist wipes
  • Purell-type hand-sanitizer - non-scented
  • Clorox Disinfecting Wipes (for bathroom)
  • Sunscreen (SPF 15+)

Moisturizers - use on hands and feet every day

  • Unscented such as Aquaphor
  • Or Eucerin Healing Repair

Nausea - patients advise preventing nausea rather than trying to treat it once it happens

  • Anti-nausea meds - pill that dissolves in mouth (under tongue)n- Get RX from doctor
  • Avoid anti-sickness bands
  • Keep small bucket or small plastic bags handy

Dehydration

  • Drink lots of liquids, especially water
  • Popsicles, sorbet and Italian ices
  • Ayr Nasal GEL
  • ACT dry mouth (or similar) lozenges such as Oracoat Xylimelts (these and other things can be ordered on Amazon if you can't get them locally)
  • Some people ice hands and feet if needed

Constipation - these cancer meds can do a job on your stomach. I can't emphasise enough to get this stuff!!

  • Eating fiber days before chemo can help prevent/lessen constipation. If the doctor says okay, take Miralax or equivalent day before
  • Fleet mineral oil enema
  • Glycerine suppositories; hemorrhoid suppositories
  • Colace, Miralax or Senekot-S
  • Foods: activia yogurt, walnuts, pecans, almonds, dried apricots, prunes, prune juice

Recommended for diarrhea

  • Imodium

For Caregivers

  • Give contact numbers of doctors/oncologists (daytime/nightime) to caregiver(s). Make sure you fill out and sign an appropriate document authorizing caregivers to speak to your doctors.
  • Keep place as germ free as possible, especially bathroom
  • Note to caregivers: Rather than asking what symptoms a person is experiencing, check if there's anything you can do to help.

Breast cancer freebies: https://breastcancerfreebies.com/

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
Log in to post a reply

Jan 8, 2019 09:29AM - edited Jan 8, 2019 09:51AM by viewfinder

The Chemo tips actually formatted pretty well, not perfect but at least it formats in Firefox. I'll have to use Firefox if I want to format in this forum. It even looks okay when I check the post in Google Chrome.

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
Log in to post a reply

Jan 8, 2019 10:11AM - edited Jan 9, 2019 08:34AM by viewfinder

Excellent additional tips, Sylvia. I will update the list after I see if other people add additional tips. As you can see, my emphasis was on things to get and a few questions to discuss with doctors. But I think some points on general care during chemo would be beneflicial.

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
Log in to post a reply

Jan 8, 2019 10:29AM SusieW5 wrote:

Hello, Sylvia

I have been on statins and BP meds for simply ages -- I'd be surprised if it's less than 15 years. I've never had any problems with them though I have friends who've tried statins and given them up, claiming al sorts of side effects. Occasionally additional claims are made for the miracle qualities of statins, which I guess we have to take with a pinch of salt.

I think that threading is a way of plucking eyebrows, which is the opposite of what I want. Winking

Susie xx

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
Log in to post a reply

Jan 9, 2019 05:55AM flgi wrote:

Argghh, I just wrote a really long post to you all and managed to delete it! Forgive me for summarising!

Happy New Year to one and all!

I wanted to get involved in some of the interesting discussions that have been filling the pages of this thread recently.

On vegan-ism. Surely many aspects of this "new" trend towards meat/dairy-free eating are to be applauded - but everyone comes with their own worries about certain illnesses, often based on what has been prevalent in their family, and, in that respect, I'm not convinced that going dairy-free would be best for me. My grandmother died young of bowel cancer, and this has always been the cancer than my dad's side of the family has been most concerned about. Research suggests that dairy has a protective effect against colorectal cancer(and in fact pre-menopausal breast cancer) although it is not clear if this is due to something specific in the milk or the high amount of calcium. I was directed towards the following link by an epidemiologist friend.

https://www.wcrf.org/dietandcancer/exposures/meat-...which I found interesting in what it says about meat and dairy. If the men in my family had a strong history of prostate cancer, I might think differently about milk.

Strangely, the report does not have too much to say on jellied eels! (I have eel occasionally when down in Aldeburgh - I rather like it actually!)

My understanding (which may well be erroneous) is that dairy milk is the most bioavailable form of calcium (i.e. the most easily absorbed in the body), and so it is good for people with osteoporosis. Again, this is something that runs in my mother's side of the family and I am thus concerned about for myself.

It is indeed hard to unpick all the convoluted strands that make up dietary advice! I guess the worst thing we can do is become too stressed about it all - and , surely, eating more fruit/veg/legumes/nuts/seeds must only be a good thing. I must try harder on this front!


Anyone considering eyebrow tattoos, you might want to google Micro scalp pigmentation for eyebrows. It is a sort of "medical" tattoo: but much less painful and invasive than normal tattoos.

MSP is mostly used for scalps,and I have had it done to camouflage the parts where my hair is thinning (I've always had very fine hair, but it has got noticeably thinner since having my children). It basically gives the impression of "hair just starting to grow in the hair follicles" and has helped to lessen the contrast between my hair and pale scalp, thus making it look thicker overall. I think it would work very well for sparse eyebrows, and may recommend it to my mother if hers do to grow back well.


My mother continues to do well on the paclitaxol-she is just much more tired than normal and gets a bit of bone ache from time to time. She has just completed her 6th infusion.

I've been suffering with a rather embedded sinus infection for about 6 weeks now, so haven't been able to help my mum as much. That said, she hasn't really needed much help. Any advice on sinuses? Antibiotics haven't worked and am now reverting to "at-home" remedies: resting more, steaming and drinking as much as possible.

Gill- good luck with your next round of chemo, which starts on 10th I think (but don't worry too much if it delayed. Over the course of my mother's chemo, there have been a number of delays,and the oncologists have always said it does not really affect the efficacy of the drugs).

Anyway, thank you as ever to all the nice people who keep this thread going. I will pop in from time to time..In the meantime, I hope you can all keep your heads down amid this Brexit craziness and enjoy the first snowdrops and aconites that are starting to appear..

love

Flora x


IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
Log in to post a reply

Jan 9, 2019 07:40AM SusieW5 wrote:

Hello, Flora,

Glad to hear that your mother is doing well. Was the sixth her last cycle? Six cycles does seem to be the norm for BC. I heard a woman in the Chemo Unit one day say that it was her 27th cycle! Don;t know what type of cancer she had. I advise people that if they're going to get cancer then they definitely go for breast.

Happy new year.

Susie xx

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
Log in to post a reply

Jan 9, 2019 11:36AM sylviaexmouthuk wrote:

Hello Flora,

I was glad to read that your mum is doing alright on paclitaxel (Taxol).

As for vegan diets, I think people should be left to decide what they want to do. What we do not want is vegans out on the streets or on people's farms waging warfare on those who do not agree with them.

We have enough information about how important fruit and vegetables are, along with nuts, seeds, pulses and beans, as well as whole grains. We are also told that oily fish is good for us. In the West it seems that in general diets are too high in meat, poultry, dairy and especially processed foods with little nutrition in them and not much fibre. It is up to each individual to decide what they are going to eat. I do not eat any meat, poultry, dairy foods or junk processed foods, and the only animal foods I have are some wild fish and prawns. On this thread over the many years we have discussed nutrition, the Rainbow/Mediterranean diet and really have decided that a little bit of everything in moderation is probably alright.

When it comes to research we have to be careful about who is financing it and we have to remember that the meat and dairy industries are mighty powerful.

I have not eaten any dairy products for a very, very long time. I do remember a conversation I had with my breast cancer consultant surgeon/endocrinologist back in 2005/6 and she told me that she thought dairy products were one of the probable causes, risk factors in breast cancer. She said it was all to do with hormones and growth factors (IGF) in cows. It makes sense because milk is made for calves, not humans.

It is also a well known fact that there is no osteoporosis in countries where dairy is not consumed and that when people come to the West and start on dairy products they tend to have breast cancer and osteoporosis.

I have read in the past that the calcium in the milk etc. from cows is not absorbable by humans.

It is up to us to make our own decisions and live by them. I would not take the calcium carbonate that is what seems to be prescribed on the NHS. Calcium tablets need to be made up of various other things, such as vitamin K, vitamin D and magnesium, or these need to be taken with the calcium. I happen to think there is a link between prostate cancer and breast cancer. They are both hormonal.

As I have said many times, each of us has to do what we think is good for us but not preach it to others.

After chemotherapy I think that you have to give the body time to recover and this can take time. Eating a healthy diet will help your hair and nails to grow back, and I would think that trying to avoid negative stress would also help.

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
Log in to post a reply

Jan 9, 2019 01:33PM flgi wrote:

Hello Sylvia and Susie,

Susie- my mum has had 6 out of 12 planned Paclotaxol infusions. The original plan was to make it up to 9 and then take a view from there.

Glad your hair (and life generally) is starting to get back to normal.

Sylvia, I hope I didn’t come across as being preachy about diet. I am in no position to preach, as I am the first to admit that I am thoroughly confused re dietary advice. I visited three different dieticians on my mother’s behalf and found they disagreed more than they agreed!

That said, I just wanted to suggest that we all approach the subject of diet with our individual preconceptions and health concerns.

When bowel cancer was my main concern, I used to look into nutritional advice about that( dairy seems to come out well here even if meat doesn’t).

Now triple negative breast cancer is of concern, I look into that, but since there seems to be little specific advice, I focus on upping my mum’s fruit and veg intake - this being something I can usefully do for her. I cook a lot of veg stews and curries-something which has been pleasurable and educational for me( who was previously a bit of a meat and 2 veg type cook!)

The point I was making about approaching dietary advice with one’s own particular health concerns was driven home very clearly to me during a conversation with my mobile hairdresser!

He’s a smoker( about ten a day) and I asked him why he still smoked when he seems so health-conscious in so many other ways( is teetotal and seems to exist off raw broccoli!) He replied” I don’t want to get Parkinson’s”. I was amazed at his answer, but he went on t say that smokers are half as likely to get Parkinson’s as non-smokers. We looked this up and indeed this is the case!

Of course, in my opinion (and I’m sure many others) this does not trump the many known risks as regards cancer/heart/lung disease, but it does show that things are never black and white. My hairdresser’s preoccupation, through his family history, is Parkinson’s, so that is what he chooses to focus on whenever following dietary/smoking advice( though I suspect addiction plays its part too!)

All very interesting anyway... what will we discover next?

Hope everyone’s well

Flora x

IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
Log in to post a reply

Jan 9, 2019 05:47PM viewfinder wrote:

My sister's surgery went very well yesterday. The surgeon is pleased. She gets her pathology report in four days. I had my six month mammogram since my surgery. It came out just fine. I go back in six months to have both breasts scanned.

I'm very thankful! Thanks everyone for your concern!

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
Log in to post a reply

Jan 10, 2019 06:00AM sylviaexmouthuk wrote:

Hello viewfinder and Flora,

I am just popping in to say I am glad your sister's surgery went well and I am glad that you, viewfinder, had a clear mammogram.

Flora, this is just a quick line to say that I did not think you were preachy. I always find your posts interesting. I really was thinking of militant vegans who are getting out of order. I am all in favour of a non-animal food diet but I would like to know what foods vegans are eating. Even though it may be plant based I would like to know whether they are drinking alcohol, fizzy drinks, processed foods, junk foods, sugar-filled foods and so on. Do they wear leather shoes and clothing?

Recently I have noticed that in the natural food sector more and more processed foods are coming out. Lentils are good for you, but lentil crisps??

I shall write more later and want to ask whether you have read about FAKE foods and, no, this is not a joke?!

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
Log in to post a reply

Jan 10, 2019 08:35PM viewfinder wrote:

I just got off the phone with my sister. Her pathology report indicates a THIRD SRUGERY is needed. They also gave her the option of a mastectomy. I'm so upset!!!

Any recommendations?

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
Log in to post a reply

Jan 11, 2019 04:52AM sylviaexmouthuk wrote:

Hello viewfinder,

I was very sorry to read that your sister's pathology report indicates a third surgery is necessary. I know from some women here that, certainly in the UK, it seems to be that after two lumpectomies, if it is still considered that there are not clear margins, then a mastectomy is carried out.

Try not to be upset as your sister will be alright. If that were me I would opt for a mastectomy rather than another surgery for a lumpectomy. I was not offered a choice but I had made up my mind that I wanted a mastectomy for peace of mind, knowing that the disease breast had been removed. Please remember this is my personal opinion. It will be up to your sister to decide what she wants to do.

A mastectomy surgery is quite straightforward. My breast cancer consultant surgeon told me it took about 45 minutes and was not considered major surgery, unlike a hysterectomy or hip surgery. It is all outside the body. I was in hospital for five days until the drains that they put in cleared. I had no pain and the scar is barely noticeable after a while.

There is the possibility of having reconstruction surgery afterwards if your sister so desires. Some women have that done at the time of the mastectomy, but that makes the surgery so much longer. I did not want to have that, but if I had gone down that route I would have had it done later on when I had finished all my breast cancer treatment.

I do hope this helps. Try not to worry.

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
Log in to post a reply

Jan 11, 2019 06:30AM - edited Jan 11, 2019 06:31AM by viewfinder

Thanks again Sylvia,

In the Surgery - Before, During, and After Forum, I started a thread called Third surgery recommended!!! What to do?

Jenkins00 responded "I had a BMX and the two more revisions after."

I didn't think you'd need additional surgery after a mastectomy.

We haven't gotten that far in the discussion. She mentioned getting a second opinion however it seems to me that the pathology report would correctly indicate that a third surgery necessary. I do know she's unhappy with her "coordinator."

I know she hasn't even gotten that far to think about reconstruction surgery. I've read something about it and it's probably not something I would consider, especially at my age (74). I understand that sometimes you have to go back for additional surgery after reconstruction. My sister is five years younger than I.

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
Log in to post a reply

Jan 11, 2019 01:19PM sylviaexmouthuk wrote:

Hello viewfinder,

I have just read your last post and also the thread that you started in another forum.

I do wonder whether you will find an answer there. Everyone is different. I think it is very important that your sister does not feel overwhelmed and that she thinks about it all calmly and makes her decision.

It seems to me reasonable that she is being offered a third lumpectomy because the team must have found more cancerous matter and it is best to get rid of it.

In the book I keep by me for reference, the Complete Guide to Breast Cancer, which I have mentioned many times, there are chapters on all parts of the breast cancer journey and written by two women who have bee through it all. This is what it says:

"If you have invasive cancer (IDC) you will have either a lumpectomy or a mastectomy, as well as lymph node surgery."

In this book it also talks about margins.

"To make sure there are no cancer cells left behind, your surgeon will remove a rim of normal breast tissue, called a 'margin'. When your cancer is analysed, the pathologist checks to make sure that the margin under the microscope is a minimum distance of 1.2 mm between the cancer and the free edge – a 'clear margin'. If there are cancer cells closer than 1.2 mm from the free edge, you have a 'positive margin'."

This will need to be cleared.

As for pathology reports, I do wonder whether they are really helping patients. I certainly was not given one and I am glad about that. I have seen samples and some of the wording is for medical experts. It seems to me that they are another source of anxiety.

We do not need over-information filling up our brains when we are trying to get through our breast cancer journey.

My own personal opinion is that your sister would have more peace of mind by having a mastectomy.

I think you would find the book I mentioned a lot more useful than trying to take in all the various views coming out of some of the posts.

Thinking of you and telling you that you and your sister can get to the end of this.

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
Log in to post a reply

Jan 11, 2019 02:50PM Rosiecat wrote:

Hi Mary,

Apologies for my late response. I Needed to get on with some work before Paclitaxel infusion yesterday.

My eyebrows will certainly require some work on them in the future. I'm not much good at drawing them in. I don't like the idea of the pain of micro cutting and think I'll probably just go in for a simple light tattoo. I Iike the low upkeep idea of eyeliner tattoos like your sister. But will have to stay pale and interesting. So much for creating a new me after cancer!

Decided to ice both feet and one hand yesterday. I used frozen peas and those large ice packs you can buy for cool bags. Very uncomfortable to say the least. also painted my nails with very dark varnish which allegedly helps to prevent nail damage. We'll see.

My 'hair' is just a fluffy head really, but it's a relief to see that it will return one day. It seems that some patients remain bald or very patchy.

My first Zoledronic Acid infusion was give immediately after Paxlitaxel yesterday. I've never heard of this before. Also my three years of infusions have been cut to two. I'm wondering how many you had, if any. I'm not sure if it was used five years ago?

Oh well, back to the grindstone.

Take good care of yourself.

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 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Jan 11, 2019 03:36PM - edited Jan 11, 2019 03:43PM by viewfinder

Hi Sylvia,

Thanks for your through and compassionate response! What you say makes a lot of sense. This is something my sister has to decide; just want her to make an informed decision. I will share what you said when she asks for any additional advice.

You're right that we do not need over-information filling up our brains when we are trying to get through our breast cancer journey. I guess I've been filling up my brain for two of us...two sisters diagnosed with breast cancer within three months of each other.

When my sister was first diagnosed, she told me that she had the same type of cancer as I do, so I've been shell-shocked with all that has transpired. Never knew there were so many varieties of breast cancer.

It's time to let go, and let God.

A few weeks ago, I sent her "Navigating Breast Cancer: Guide for the Newly Diagnosed" 2nd Edition by Lillie D. Shockney. I never looked at it since it was shipped directly from Amazon.

I wonder if "Complete Guide to Breast Cancer" would simply have duplicate content. I will do some research.

Sylvia, I'm amazed at the care and devotion you give to others who have breast cancer. You have no idea how much I appreciate all that you do for us.

Love back to you!

PS Is the book you recommend written by Trisha Greenhalgh and Liz O'Riordan?

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
Log in to post a reply

Jan 12, 2019 06:07AM sylviaexmouthuk wrote:

Hello viewfinder,

I shall reply to your post later.

Yes, they are the authors of that book.

The whole title is The Complete Guide to Breast Cancer - How to feel Empowered and Take Control, by Professor Trisha Greenhalgh and Dr Liz O'Riordan - expert doctors and breast cancer survivors. There are 24 chapters and covers everything in simple language. Chapter 1 is entitled Joining the Cancer Club, 2 Breast Cancer and Overview, 3 Learning more and goes on right through to chapter 23 Secondary (metastatic) breast cancer, 24 Moving forward. You will probably be particularly interested in chapter 9, Having an operation, 10 Chemotherapy, 12 Radiotherapy.

I bought mine from Amazon about September 2018 when it came out. I found some of the diagrams very useful and interesting.

I shall look up the book you mentioned and see what it is like and perhaps buy it.

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
Log in to post a reply

Jan 12, 2019 02:38PM viewfinder wrote:

My sister emailed me her schedule this morning:

- Chemo first (four treatments over 12 weeks)

- Surgery afterward (date unknown) (possible mastectomy??)

- Radiation after that (date unknown)

She has a big decision to make.

My daughter will be there for the first round of chemo, which I understand is often the worst. Others will be with her during all of her other treatments and surgery. She has very good friends, who are like family, that will be with her throughout this journey. Some are flying in from other states.

I hope the US government shutdown is resolved soon. I've read that it's really affecting airports as workers call in sick.

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
Log in to post a reply

Jan 13, 2019 06:41AM Rosiecat wrote:

Hello Sylvia,

Apologies or taking so long to respond to your last post.

I began making healthy changes to my diet as soon as I was diagnosed. Unfortunately, while I'm still trying to eat sensibly, I've found that my taste has changed during my treatments. I now eat what I can when I can. Not ideal and I Intend to press on with healthy dietary changes when I'm free of chemotherapy.

Thinking of Viewfinder's sister, I decided on a simple mastectomy as some research I indicated that women with smaller breasts, like me, were more likely to get better margins with mastectomy. My margins are 5mm. I think Viewfinder's said that her sister was quite well built though. It's certainly very disappointing for her. Like you, I found mastectomy quick and painless. No after effects once the seroma had been absorbed either. I was told that I had seven years to make a decision regarding reconstruction. I decided against it because the surgery is very lengthy. Also, I really wanted to check for smoothness regularly and some reconstructions, not all, are lumpy.

I did ask for my pathology reports following diagnosis and mastectomy. I was not fully informed after diagnosis and had no idea what metaplastic cancer was. It's not for everyone though. The problem in the UK these days is that Oncologists and their time is at a premium and explanations and answering questions are rather pushed to one side. I remember the shock of being told that I wouldn't be seeing an Oncologist at all and that no further treatment was to be offered. Knowing my pathology was essential in challenging this.

Hope all is well in Exmouth. Norfolk is very blustery today and much colder weather is on the way. The North Norfolk coast suffered from flooding last week as the sea poured over the walls, onto roads and into houses. Must be misery for those people who now have to get their houses dry and warm again.

Take care.

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 10/23/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Jan 13, 2019 07:11AM maryna8 wrote:

hi viewfinder

It's very important to have clean margins when removing BC, whatever it takes. As Sylvia said your sis can reconstruct breast if desired.

I was scheduled for lumpectomy but later testing showed the tumor shape was uneven, the surgeon said it had "fingers." Since my breast was small, would not have been much left of it anyway.

By that time I did not care, just wanted to be rid of it. Glad your sis has schedule, and can get started with things.

Later, 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)

Page 425 of 451 (13,527 results)