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, 2022 02:02PM by sylviaexmouthuk

Posted on: Sep 12, 2010 08:43AM - edited Jun 20, 2022 02:02PM 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 17 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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
Log in to post a reply

Page 1609 of 1,609 (16,089 results)

Log in to post a reply

Jun 30, 2022 05:58AM rosiecat wrote:

Hi Mary,

Always good to hear from you and all the interesting things you get up to. Don't envy you the house full of workmen and all that dust though. My last ordeal , via new windows, ended fairly quickly and the men told me that I'd miss them once they'd gone. I didn't. Having workmen around in England means making endless cups of tea and coffee and having in depth discussions about their wives or misbehaving teenagers. Younger men are worse - disappointing relationships feature heavily. Maybe I try too hard to be a good listener or perhaps they mistake me for an older lady with the wisdom of a lifetime to impart. Is it just me, or do men in general like to stand around gossiping far more than we do?

I'm impressed by the amount of aftercare you've received post cancer treatment. It must have given you a sense of security or at least a sense of being cared for and a quick response to any worrying symptoms. My hospital only does an annual checkup for two years and that's just a physical examination and a mammogram. I wanted an ultrasound on my mastectomy side, but these are no longer offered. Annual mammograms are only offered for 5 years and then it's a mammogram once every three years.

How is your shoulder doing now? You don't mention it so I'm guessing that it's reasonably okay.

Take care.

Love,

Gill xxx

.



Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
Log in to post a reply

Jun 30, 2022 06:49AM rosiecat wrote:

Hello Sylvia,

I'm back home after the most relaxing holiday I've had for many years. Only an hour's drive away, beautiful fairly quiet beaches and a stunning 15th or 16th century Hall with all the original features to stay in, plus four acres of beautiful gardens to wander around whenever I felt like it. Michael went for a run around the country lanes for an hour each morning while I had a leisurely bath with a view over the gardens. The ghost didn't bother us once!

We arrived home on Tuesday evening feeling restored and refreshed, however, I coughed for much of last night and woke up with a sore throat and headache. Michael isn't feeling a hundred percent either. We just have to hope that we don't have the latest variant of the never ending coronavirus that's sweeping across the whole of the UK.

The internet wasn't very consistent where we were staying, which meant that Parliamentary committees and debates weren't available. Just as well! I see that the Prime Minister is conspicuous by his absence as is usually the case during a crisis. We are the worst performing economy in the G7 apart from Russia and the trend is ever downwards. It also seems likely that a national strike is on the cards before long. How much longer before Tory backbenchers revolt or simply walk out of the House during Prime Minister's Questions? The economy and Ukraine have grabbed the headlines and pushed the NHS off the agenda, yet more doctors and nurses resigned this month than ever before. No extra (promised) training places were made available for doctors or dentists. Will people have to travel to Europe for dental care? My daughter and son-in-law still can't find a dentist, though they did find one to look after my grandchildren's teeth. What a horrible mess England has become.

I can feel the benefits of a good holiday disappearing far too quickly.

Wishing you and Raymond a peaceful and healthy week.

Love,

Gill xxx

Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
Log in to post a reply

Jun 30, 2022 08:10AM 22lumos wrote:

Thanks Sylvia and Gill,

I think one of the positive things that has happened was when a friend who has finished treatment and surgery about a year ago, suggested thinking about chemo positively. Yes, it's toxic and very hard on the body. But, it's having the desired effect on my cancer. Since that advice, and even though I've had some significant side effects, I've tried (despite feeling nervous about infusions) to think of the chemo as something I need to eradicate the cancer. I guess that's easier to say now that it's over, but I have tried to stay fairly positive about the chemicals and that has helped.

I'm getting over the anger and fear about my husband's COVID. It helps that we've isolated and worn masks, and especially since I have not had any symptoms. I think most people are HOPING that COVID is past, though if you read anything in the paper or online, it's rising again. My husband said that a large number of people who attended his high school reunion have come down with symptoms. I just roll my eyes at him now. He's not really the type to believe that COVID could actually be over. But he also had the desire to attend his reunion, no matter how misguided that may have been.

I'm in the surgery mode right now. I've got to contact my surgeon and radiation doctor and let them know that I'm leaning heavily toward lumpectomy. The surgeon wanted to schedule 3 weeks after my last infusion, which happens to be the week of my birthday. Not that I was planning a party or anything. But the more I think about it, the more I don't really mind doing it that week. I just want to keep moving forward.

I hope Kelsey's mother is doing okay. She hasn't posted in a while. I hope all is okay with her and with all of you.

Love, Sue

Round 1: Keytruda, Taxol, Carboplatin Round 2: (every 3 weeks) Keytruda, Cytoxan, Doxorubicin Chemotherapy 2/2/2022 Other Chemotherapy 2/2/2022 Other Dx IDC, Right, 3cm, Grade 3, ER-/PR-, HER2- Surgery
Log in to post a reply

Jul 2, 2022 04:38AM berniek wrote:

Hi Sue, Mary, Sylvia and all!

Mary, I wanted to thank you for your message the other day, about you being 9 years or so clear, that’s amazing! I meant to respond but I’ve started a new job and been so busy!


My mother is doing amazing thank you Sue! She went to the pub last night with her friends and sat outside to avoid infection but I was so glad that she got out, she had her chemo yesterday and now only has 3 rounds left! I’m so excited, I cannot wait for the day that I hear she is clear! It will be the best day ever. So she has 3 weeks til the chemo is over, then has to wait 6 weeks for surgery then radiotherapy after, we don’t know how long she has to have that fo


She does worry me sometimes, she was very anxious this morning because she told me she watched a show called 24 hours in A&E and a boy on there was saying his mum had breast cancer and she had chemo and all treatment and was clear for a while but it came back a while after and she passed away, I told her to ignore that because many people like you guys here stay clear!


So guys, My mum wanted to ask if it is best to opt for a double mastectomy with implants if they will do it, they have offered a lumpectomy so far as the lump is so small but she is wondering is it safer to get the double mastectomy to prevent it coming back? Will they do it even though she does not have the bracket gene? We are going to ask at her next oncology appointment.


I initially made this account for my mum to use which is why my username is under Bernie as her name is Bernadette but she isn’t that great on the internet haha so I read all your guys post to her and stuff ❤️

Log in to post a reply

Jul 2, 2022 06:23AM rosiecat wrote:

Hi berniek,

Glad that your mum's doing so well. Please tell her to be careful when out and about as the latest omicron variant is so infectious, much more so than the previous version. In fact I'm going to test myself this morning as I either have a normal cold or covid....again. your mum wouldn't want her treatment to be delayed.

I chose to have a mastectomy because I had the metaplastic version of triple negative cancer which is notoriously chemotherapy resistant. Triple negative tumours generally respond extremely well to chemotherapy. I wanted the whole breast gone as I have a fairly small bust with a 2.4 cm tumour and I was concerned about cancer free margins being too small - even with a mastectomy my margin was only 4mm. I wasn't offered a double mastectomy as I have no genetic markers or family history of breast cancer. I opted to manage without reconstruction as I was concerned that if the tumour returned I probably wouldn't be able to see or feel it, however, in another year I will be almost 5 years out and am considering an implant. The prosthesis offered by the hospital is good enough, but my bra rides up on the mastectomy side and I'm very conscious of this.

As for the little boy whose mother had a recurrence and died, well yes it can happen, but your mum needs to remember that no two cases are the same. The boy's mother may have only had treatment at a very late stage, she may have had the brca gene, she may have had a much more aggressive form of breast cancer, her health may have been poor even before she developed breast cancer, she may have had advanced breast cancer with nodes affected before her treatment began......and so on. Your mum will be worried and I'm afraid that she will probably have worries about recurrence for the rest of her life, I think most of us here have this fear at the back of our minds, but it does become less present and we're mostly able to get on with our lives. It's very early days for your mum and Sue, life will get better.

Good luck to you and your mum, tell your mum that she's doing well and not compare her situation with that of others. The media tend to like the sad stories about breast cancer - remember that the vast majority of breast cancer patients don't have a recurrence and don't die of breast cancer, but these women never make the news.

Love,

Gill xxx

Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
Log in to post a reply

Jul 2, 2022 06:38AM rosiecat wrote:

Hi Sue,

Yes, men like their reunions! He's a great support to you, so I'm sure you've forgiven him.

You really sound excited about getting the surgery out of the way, It's such a relief. The decision between lumpectomy and mastectomy isn't an easy one, but you've explored the pros and cons very carefully and I think you'll make the right decision for you. If I'd have had plain triple negative I'd have opted for lumpectomy, with metaplastic I felt that mastectomy would be better. Of course, I'll never know if I made the right choice. I do know that I'm very fed up with wearing a prosthesis when I go out - don't bother when at home.

Keep looking forward. You've weathered the worst of the storm.

Love,

Gill xxx

Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
Log in to post a reply

Jul 2, 2022 01:01PM sylviaexmouthuk wrote:

Hello Gill,

I was glad to read that you had a relaxing holiday, but sorry to read that you and Michael are now not feeling very well. I do hope it is just a cold.

I saw only a bit of PMQs and found it pretty disgusting. It showed Raab standing in as deputy PM winking at Angela Rayner standing in for Keir Starmer. I thought it was shameful and that he should have been sent out. The country is in complete chaos and the Parliament channel is not worth watching. I think you would really appreciate the book that I have just finished reading. It is entitled The Social Distance Between Us – How Remote Politics Wrecked Britain by Darren McGarvey. The last chapter shows all that needs to be done to change this country for the better and start to bring an end to the class system and inequality.

We need to get rid of Boris Johnson before he starts WW3 to save his own skin. He should be made to resign.

By the way, the author I mentioned is also the Orwell Prize-Winning Author of the book Poverty Safari, which I am going to try to obtain.

That is all for now. Take care.

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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
Log in to post a reply

Jul 2, 2022 01:03PM sylviaexmouthuk wrote:

Hello Sue and Kelsey,

I think Gill has said it all and I have nothing to add.

Keep looking ahead and remain positive.

We are all different so none of us knows what the future will bring. Live each day fully.

Do not take any risks.

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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
Log in to post a reply

13 hours ago 22lumos wrote:

Hello Everyone,

Not great news--I have COVID. I came down with symptoms on Friday. My fever escalated and so my oncologist sent me to the hospital. The ER doc got special permission to give me a new drug. They consulted with my onc and agreed to infuse it. Then then sent me home. Three days later and I feel much better than I did on Friday. I'm actually up and able to function a little bit. Feeling COVID and Chemo side effects at that same time isn't good. But I feel a little better each day.

I've been so careful during the last 6 months. I haven't gone out or seen many people face to face. I wear a mask whenever I leave my house. My husband made a bad decision, feeling like the rest of this country, that the virus is done now. Our numbers are still up and down, so I don't know why people think that.

I'm getting excited for surgery and radiation to be done--I'm guessing surgery will be the end of this month because my birthday happens to fall on the 3 week time period after chemo. The surgeon didn't want me to be in surgery on my birthday. Radiation will follow a few weeks after surgery.

I'm leaning toward the lumpectomy because the chemo has done its job and has shrunk the tumor and I have no genetic markers for breast cancer. I'm not a fan of hospitals or surgery and was not looking forward to the multiple revisits to surgery for mastectomy and reconstruction. I also read that recurrence can happen in chest tissue after mastectomy. Has anyone else heard that??

Stay well everyone! Love, Sue

Round 1: Keytruda, Taxol, Carboplatin Round 2: (every 3 weeks) Keytruda, Cytoxan, Doxorubicin Chemotherapy 2/2/2022 Other Chemotherapy 2/2/2022 Other Dx IDC, Right, 3cm, Grade 3, ER-/PR-, HER2- Surgery

Page 1609 of 1,609 (16,089 results)

Scroll to top button