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

Forum: Triple-Negative Breast Cancer —

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

Posted on: Sep 12, 2010 05:43AM - edited Feb 21, 2021 07:04AM 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 15 years and 08 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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Feb 18, 2021 03:02AM Kathseward wrote:

Swabbing in full PPE in 36 degree Celsius no fun! Vaccine program starts in 2 weeks with Pfizer vaccine. Big concerns about the cold chain and transport to rural and remote areas. Hope everyone doing well

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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Feb 18, 2021 10:39AM Rosiecat wrote:

Hi Kath,

I share your concern about Pfizer storage problems, especially in a hot country. Astrazenica is more widely used in the UK as it can be stored in normal fridge conditions. Having said that, both Michael and I have been given Pfizer vaccinations at a local health centre. Just have to hope that it was stored properly.

Keep up the good work.


Love,

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Feb 19, 2021 04:02AM Rosiecat wrote:

Hello Sylvia,

I do wish that Elzie would get back to us. She was extremely worried about her biopsy results and may be in a very depressed state. It really does help to share these very difficult and frightening issues with those who've experienced breast cancer themselves. Like you, I'm wondering how cocolala's breast reconstruction went. It's a very long operation so I'm hoping that her results will be all she wished for.

The French magazine with articles from around the globe confirmed what we already knew about this appalling Government. Our right wing press have conned people into believing that Brexit is a good thing and Johnson's toxic Cabinet are doing a sterling job of running the country. The many Tories who Johnson expelled from the Party are much missed. I'll never be a Conservative but I'd prefer to see the likes of Dominic Grieve as Prime Minister. I remember Ken Clarke's speech to Parliament after Johnson had thrown him out of the Party. He said that he no longer recognised the Conservative Party and it was now just the Brexit Party rebadged. He described Johnson as a 'knockabout' character who had a philosophy of crashing things through. He also said that this was the most right wing Government that the Conservatives had ever seen.

The Government's mismanagement of the pandemic has cost 120K lives so far. This is without the loss of lives resulting from essential surgeries being postponed. Not one word of apology for his failure to follow his scientific advisors and go into lockdown earlier and close airports. The disaster that is Brexit is rarely mentioned. I fear for our NHS, but who in the Tory party will speak out and stop the rot before it's too late?

Michael's visit to the dentist didn't go well. He needs a crown on an upper molar, this will cost £250 for an NHS crown or £600 for a private crown. Not all bad news this week as he was given his Pfizer vaccination yesterday. No side effects at all so far. There appears to be a vaccine shortage in parts of England. One of Norwich's main hubs is only able to vaccinate every other day and my daughter is disappointed that the vaccines in her area area still only arriving in dribs and drabs.

That's about all for now. Have a peaceful weekend both of you.

Love,

Gill xxx






Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Feb 19, 2021 10:34AM sylviaexmouthuk wrote:

Hello Kath,

Thank you for sending your photograph showing you in full PPE. It must be awful wearing that in such heat.

I do hope all goes well with the Pfizer vaccine programme when it starts in two weeks time. I do wonder how the Pfizer vaccine will be protected in such heat. I am assuming you have already been vaccinated.

I sometimes wonder about the differences in these vaccines and all the rivalry. Raymond and I had theAstra Zeneca at a local pharmacy and we did not have any choice. We now have to wait twelve weeks for the second dose because our Prime Minister decided not to follow the instructions on the label!

Vaccines now seem to be growing like mushrooms!

Keep in touch.

Love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Feb 19, 2021 10:51AM sylviaexmouthuk wrote:

Hello Gill,

As you say, we have no idea what has happened to Elzie and cocolala, but I do hope that, if they can, they will have the courtesy to reply.

I do agree that we have an appalling government. Like you, I would never support or vote for a Tory government. As you know, I would like to see a properly elected people's government, based on a real majority and within a federal republic. I cannot think of anyone in Boris's cabinet that is of any use. Boris is a gimmick person and has no depth.

I dread to think of what is going to happen in the coming months. I am so weary of it all.

What did you think of Keir Starmer's speech? I did not find it very uplifting. We need someone with more get up and go, but I cannot see anyone, except perhaps Angela Rayner. She could wipe the floor with Boris Johnson.

It has been a tiring day today. I am still helping my cousin and trying to motivate him. Raymond has not had a good day and was suffering from low blood pressure this morning and feeling very lethargic. We do not think the betablockers are doing him any good.

I carry on, multi-tasking and it is a good job I have a very versatile brain that is used to switching tasks.

As for crowns, I know that they are very expensive. I was glad to know, however, that Michael got his Pfizer vaccination and that all is well.

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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Feb 21, 2021 02:22AM cocolala wrote:

Dear all,

I'm so sorry I did not get back earlier. Thank you so much for your concern SillyHeart

I was hospitalized for a week, then go back for check up and dressing every few days. Overall, the surgery went well, but perhaps due to my body nature that heals slower, the tummy area did not heal as per the surgeon's expectation. I was told it's just superficial and not to worry, thus the need to do dressing daily at home and hospital visit at least once a week. My arm is very tight this time compare to previous lumpectomy, so have to do arm exercises daily. I also still can't stand up straight, guess it will take longer than others.

My report shows that ER PR negative but HER2 is now positive, and another FISH test that came out yesterday confirms this. No lymph nodes involvement, no lymphovascular invasion, and PET CT scan also shows all other area is clean. So now I'm not triple negative?! But HER2+ is very aggressive as well, and the treatment cost is very high. I know 2 ladies who relapsed within 6-12 months after completing treatments.

Previously my tumour was 2.5cm with only 4mm cancerous, but this time the whole 2cm tumour is cancerous, and it's Grade 3. Breast surgeon said most likely I will have to do chemotherapy, which I will get my oncologist' opinion tomorrow.

Dx 3/7/2019, DCIS, Left, 2cm, Stage 0, Grade 3, 0/0 nodes, ER-/PR-, HER2+ Radiation Therapy 5/6/2019 Breast Surgery 5/6/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 5/14/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 6/9/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 9/5/2019 Whole-breast: Breast
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Feb 21, 2021 04:15AM sylviaexmouthuk wrote:

Hello cocolala,

It was so nice to hear back from you and I do understand that you have been going through a lot.

Thank you for taking the time to give us the details of what has been happening to you.

It is good news that the surgery went well and I am sorry to read that the healing is going slowly. Just be patient and tell yourself that it will heal properly over time. At least, you have been told that wound is just superficial. Keep on with the daily dressing and your weekly hospital visits. Remember that surgery with reconstruction is a much longer surgery than straightforward breast cancer surgery, so recovery will take longer.

You mentioned that your are feels tight and that you are having to do arm exercises. Even with ordinary breast cancer surgery we are told to do exercises straight-away, at least that was my experience. I remember the day after my surgery, a mastectomy, a physiotherapist came to see me and showed me exercises to do. Do you think you have lymphoedema? This is quite common after surgery and requires gentle arm-lifting exercises to keep the lymph moving around the body.

I was interested to read that you are no longer triple negative but are now HER2+. I do know from my oncologist of nearly sixteen years ago now that cancer cells mutate. The good news is that there is medication to treat HER2+, the most common seems to be Herceptin. Do you have to pay for your medication? Be positive and tell yourself you will get through this. Keep in touch with us on the thread and we shall support you. Looking at your details, I saw that in 2019 in March you were HER2+ and then in May 2019 you had IDC and then you were HER2-. Now you are HER2+. Has anyone explained all this to you?

Let us know what happens about possible chemotherapy treatment.

Sending you love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Feb 21, 2021 04:21AM sylviaexmouthuk wrote:

Hello everyone.

I am just popping in to say that I hope you are all managing to have a good weekend despite the strange world of coronavirus that we are living in.

I wanted let you know that yesterday February 20th I marked 15 years and 8 months since diagnosis. If I can do this so can you.

Remember that when I was diagnosed, I was told that it was a poor prognosis because I did not have hormonal positive tumour status and so tamoxifen would not be of any use to me. The term triple negative was not mentioned at the time.

Best wishes to all.

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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Feb 21, 2021 09:10AM Rosiecat wrote:

Hello cocolala,

I'm relieved to hear that your surgery is over. I would imagine that having fat and skin cut from the abdomen would be fairly painful, so you'll be relieved when it finally heals. It's very good news that there are no lymph nodes involved, no lymphovascular invasion and the rest of the area is clear. That's a good result. Helenlouise, a regular poster on the thread also found that her triple negative breast cancer had morphed into HER2+. It might be useful to look back at her posts. She has Herceptin and Perjeta meds. I don't know if the healthcare system in Malaysia pays for these therapies or if you have to claim via insurance. I hope there won't be a problem. There are many women who do very well on Herceptin. I don't think you should consider that the two ladies who relapsed to be any sort of indicator of what your future holds.

Let us know what your oncologist advises. You'll probably feel much more positive once your treatment is underway. I hope that you have someone to offer you support, I'd usually recommend taking a friend or partner with you to hospital appointments but that's probably not allowed during the pandemic. It's a difficult time for you I know, but try to look forward. Please come back to us whenever you feel like it.

With my very best wishes,

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Feb 22, 2021 03:10AM Rosiecat wrote:

Hello Sylvia,

I was sorry to hear that Raymond is suffering from low blood pressure. My own experience with beta blockers was extreme lethargy, but I know that they can also cause low blood pressure leading to visual problem, dizziness and fainting. I took them to break the cycle of migraines I was having and they worked extremely well. Will Raymond need to take them long term? I expect you'll have done your research into beta blockers and know that it would be unwise for him to suddenly stop taking them.

Congratulations on your 15 years and 8 months post diagnosis. I'm 2 years and 6 months this Wednesday. Still very early days for me.

I agree with you that we need a stronger opposition leader. I'm afraid that we need someone who will stand up to Johnson and that isn't Keir Starmer. We also need a new Speaker who has the strength of character to actually stop the weekly 'Boris Johnson Show' that Prime Minister's Questions has become. His treatment of Ian Blackford is outrageous, yet the Speaker merely chides Johnson like nanny reproaching a small child in the nursery. I have to wonder if Johnson actually wants the Union to split.

I'm pleased that cocolala got back to us. She could do with some good news from her oncologist. I've read plenty of uplifting posts regarding Herceptin so I'm hoping that she'll look at some more reassuring statistics. The two women cocolala knows who relapsed within 6 -12 months of Herceptin therapy may have had other issues or they may simply have been unlucky. I was more concerned about her being able get access to treatment, but Malaysia seems to have an excellent and very accessible health care system in place.

We had a very sunny and warm weekend here and went for a long walk around the village. Of course, the rest of the village had the same idea. Walking seems to have become very popular during lockdown and it's the one chance we have to see other people in safety, even if we can't get too close.

I hope your GP can offer some advice regarding Raymond's beta blockers.

Keep well.

Love,

Gill xxx


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Feb 23, 2021 07:13AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post.

The low blood pressure was mainly in the morning, even though Raymond had taken our GP's advice and took the beta-blocker in the evening before going to bed.

Beta-blockers are used in coronary heart disease for lowering blood pressure, but it seems to be assumed that everyone with CHD has high blood pressure! Raymond has always had normal blood pressure. There are different categories of beta-blockers, cardiac selective and non-cardiac selective. Raymond was on cardiac selective, bisoprolol, and it has caused him problems all through his hospital stay. We both kept saying that he did not need his blood pressure lowering! Beta-blockers also cause Reynaud's phenomenon, cold white hands and feet.

This morning Raymond had a phone consultation with the GP and she has taken him off the beta-blocker. He now has just one soluble low dose aspirin to take. He is happy about this. He was only on the minimum dose of 1.25mg.

Thank you for your congratulations. I must admit that the diagnosis day now seems like a lifetime ago, but I shall never forget it. I did not know of bc.org in June of 2005 and I went through my treatment mainly by myself and just had visits from Hospiscare. It was quite by accident that I discovered bc.org in 2009 when I was looking for information about over-active parathyroid glands and breast cancer. As you know, my oncologist was concerned about high levels of calcium in my blood, which can be a sign of metastatic breast cancer. She, probably along with my breast cancer surgeon, who was also an endocrinologist, had the presence of mind to test for hyperparathyroidism and the test showed that is what I had. I came upon bc.org, met up with sam52, going through the same thing and in 2009 supported each other through surgery and cure. Sam52 had had hormonal breast cancer and knew a lot about parathyroid and the connection to breast cancer. I was told my hyperparathyroidism preceded the breast cancer and so it is possible that it caused my breast cancer. Sam52 started a thread on here about all this. She suddenly disappeared off the forum and we lost touch.

I have been fine all the year since diagnosis, but never take anything for granted. I have been glad at the end of treatment, that I did not have to go on long term medication. I have made healthy eating my medication.

I do have the long term effect of neuropathy in the feet, and know that there is no cure. It does not bother me that much. I just take good care of my feet.

I have had a couple of episodes of lymphoedema, but nothing really serious. I know my right arm is slightly larger than my left but it is not noticeable and I just live with it. I think that everyone who gets diagnosed with breast cancer should ask about all these things and know in advance that they can happen. You do not want them to come as a surprise. Remember that knowledge is power.

It is a good idea to join a forum such as this one on diagnosis. You do not need to go through your breast cancer treatment alone. You are individual and will not necessarily have the same experiences and side effects as someone else.

I was pleased to see that cocolala had got back to us. She will be fine with the treatment for Herceptin and deal with any side effects. Like you, I do hope that in Malaysia she will get some help with her treatment.

I did not really know what to make of the briefing yesterday and am not convinced that June 21st will be the liberation day that the great performer has promised!

I do hope we shall get some more clement days as we leave winter and go into Spring.

I do hope that the emphasis will be taken off coronavirus and that cancer patients will get a better deal. I feel that coronavirus is in the air and we shall have to learn to live with it. I do wish we had a better newspaper press and media in general that would be more sober in what it says and show more responsibility.

Thank you Gill, for your dedication to the thread.

Love and best wishes.

Sylvia xxxx

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

Hello Sylvia and Gill,

My oncologist suggested 4 cycles of AC, 4 cycles of Taxol, 17 Herceptin and 15 radiotherapy. He also suggest for chemo por. I know this is common but I'm scared of the idea of installing something in my body, especially when I know that doctor usually not suggest taking it out unless past the 5 years mark. My husband dislike the idea too, but I know my veins are small and it could be a problem for me to have IV injection for 29 times in a year.

I'm using insurance to pay for my treatments. As I'm currently seeking treatment from private hospital, the cost are higher compare to government hospital. I'm not sure how much cheaper is government hospital, some said for Herceptin the drug cost is the same as private hospital but you save on the doctor and procedure fees. Not sure about chemotherapy and radiotherapy though. My insurance can only cover half for private hospital treatments, so I've made an appointment with another private hospital which offer welfare fund this Friday. I will need to see their oncologist, apply for the welfare fund, go through interview and then will know whether entitled or not, and how much subsidy will be given. I hope I can get this, otherwise I will have to find ways to be referred to government hospital.

My Tram Flap tummy wound is getting better, and I'm glad my arm mobility is also improving.

My next appointment with oncologist is on 8/3, which he has arrange for blood test, preparing for chemo. I'm thinking of getting a quotation from him, so that I know how much I need to top up from my insurance. He told me there is a package for Herceptin but not sure what is the latest package available (I know last year they have buy 3 free 1), otherwise I can opt for generic version. If possible, I prefer the original Herceptin than the generic version.

Is changing oncologist because of treatment fee wise?

By the way, my surgeon said DCIS is mostly Her2 positive, but when I had lumpectomy, they didnt test the DCIS lump again, just the cancerous part.

Dx 3/7/2019, DCIS, Left, 2cm, Stage 0, Grade 3, 0/0 nodes, ER-/PR-, HER2+ Radiation Therapy 5/6/2019 Breast Surgery 5/6/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 5/14/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 6/9/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 9/5/2019 Whole-breast: Breast

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