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

Jan 22, 2021 03:33PM Moderators wrote:

Hi Hana, and welcome to Breastcancer.org.

We're so very sorry to hear of your diagnosis, but we're really glad you've found us. You're sure to find our Community an incredible source of advice, information, encouragement, and support -- we're all here for you!

Others from this thread will surely be by soon to offer help and welcome you. In the meantime, we thought you may find it helpful to do some research on our main Breastcancer.org site's page on Triple-Negative Breast Cancer, where you can learn about treatment options, hear podcasts that may be helpful, and get overall information about what you're dealing with. Knowledge is power!

We hope this helps and we look forward to seeing you around the boards. Please let us know if we can do anything at all to help!

--The Mods

Jan 23, 2021 05:22AM sylviaexmouthuk wrote:

Hello Hana84,

Thank you for your post. We shall do everything that we can to support you through all of this and just keep telling yourself that you will get through this journey.

You have a very small tumour and just one lymph node involvement, so remain optimistic for a very good outcome. Over 15 years ago I was diagnosed with a 6+ cms tumour which seemed to appear from nowhere. I also had one lymph node involved under the arm (the sentinel node). The first person I saw, the breast cancer surgeon, told me it was a poor prognosis and this was before I had had any kind of tests. I was told that my tumour receptors were not hormonal. Triple negative was not mentioned at that time. I was not told the stage, just that it was grade 3. Most triple negatives are grade 3 but not all.

Because my tumour was large I was given six months of chemotherapy to shrink the tumour as much as possible. The chemotherapy did shrink it but it did not disappear. The idea was to shrink it as much as possible to make surgery easier.

I had three months of epirubicin (Ellence) with cyclophosphomide (Cytoxan) known as EC, and then three months of docetaxel (Taxotere). I had these infusions every three weeks. Nowadays the infusions are often done every week and patients say they find this much easier. The oncologist used to measure the tumour on a regular basis.

Please do not feel afraid because of one lymph node involvement.

I see by your details that you are having the same chemotherapy treatment as I had, with the addition of carboplatin. The carboplatin is very popular now but it was not around when I was going through treatment.

Try to relax and go through your chemotherapy treatment and we shall help you all we can to get through it.

Are you having weekly infusions or three weekly?

Remember to drink plenty of water during this treatment and to eat as healthily as you can, as well as getting some fresh air and exercise.

I was told to avoid crowded places and public transport. As far as food was concerned I was told to avoid raw food and seafood. You will probably feel more tired than usual so get plenty of rest as you need it.

Let us know how you get on.

I started this thread back in September 2010, so there are many pages to it. You may like to read some of the previous postings to get a variety of experiences, as well as plenty of information.

With love and best wishes.

Sylvia xxxx

Jan 23, 2021 01:31PM Hana84 wrote:

Dear Gill, Silvia and Mary,

thank you all for your kind words of encouragement! I really needed to hear that. I had my first round of chemo on Wednesday this week. My plan is to have 4 rounds of Epirubicin + Cyclophosphamide every 2 weeks and then 12 rounds of Taxol + Carboplatin every week. Then the surgery should follow.

I was told by my oncologist that I would need axillary clearance unless there is a good tumor response with chemotherapy (which they do expect as the sTILs are ´high´). According to him in these cases (with a complete remission of the tumor on breast imaging following the chemo) they can limit axillary surgery to removing only the tumor but also the involved lymph node and 2 sentinel lymph nodes. If it turns out there are no remaining cancer cells in this lymph node, they can conserve the other lymph nodes which makes postoperative revalidation easier.

I know it is still early for any decision, but I am already thinking about mastectomy. I don´t know if it could have been a warning sign but during my periods it was only this breast that was painfull and very sensitive. I am also waiting for the BRCA gene test results which of course will play a big part of any future decision that will have to be made.

Jan 24, 2021 05:34AM peterandliz wrote:

Hello Hana,

Sorry to here you have a reason to be on this thread. My wife was 40 when she was diagnosed. Even though the cancer was in its early stages she decided to have a double mastectomy. After a lot of research Liz felt if she had both removed she would not worry about it coming back as much. Liz also had pain in that breast for a few years before being diagnosed with cancer. She also decided not to have reconstruction as we had read a lot of cases were it had not been a success. However this does depend on your personal situation.

Liz and I was dropped in at the deep end. We were called to the hospital to get her results and to be told she had cancer and it was triple negative. We were asked what treatment we wanted at that appointment as they were going to operate first. At the meeting we decided on a double mastectomy and reconstruction. Not knowing anything about cancer. A few days later we got the operation date through. I spent those few days looking into all the treatments and options. At the time 30% that had reconstruction at the same time had to be operated on again at a later date as the operation went wrong in some way.

In those few days we had time to talk and we decided to not have the reconstruction. We phoned the hospital and changed this. Liz received a new operation date 3 weeks earlier as it was a quicker and easier operation. Liz does not regret for one minute having both breasts removed but it all depends on your own situation and what you want going ahead in the future. We were always told she could have reconstruction if she wanted at a later date as well.

This was nearly 10 years ago now and would not do anything different if she had all the choices over again. I would suggest read all you can there is a lot of info out there. I read this thread from the very first page as I wanted to see what happened to people with cancer over a few years, what they went through etc. Liz and I are also on some Facebook pages were people are going through the same thing at the same time. This way you can talk to people and go though this with them together.

Regards

Peter

Jan 25, 2021 08:22AM Rosiecat wrote:

Hello Sylvia,

The thread has become quite active once more. The experience of Mary, Peter and Liz and yourself will have helped Hana84 to get back to feeling more positive again.

I have just read an article concerning a woman who was diagnosed with blood cancer in 2017 at Kent and Canterbury Hospital. After going through chemotherapy she was told by her doctors that it wasn't working so they upped the dose. Seeking a second opinion at Guy's Hospital, she was informed that she didn't have cancer at all, but a completely different condition. The doctor at Guys asked if she'd had bone marrow tests or scans of her spleen - she'd had neither. She's lost her job as a carer, her bones became painful, her hair thinned, she lost a lot of weight and of course the list goes on. As you'll recall, I sought a second opinion from Guy's. Although we're dealing with breast cancer here, the message is the same. If anyone has any doubts about their diagnosis, their treatment or the competence of their medical team, seek a second opinion from a doctor at a different hospital who has a proven track record of treating breast cancer.

My cousin who was diagnosed with breast cancer before Christmas finally received her pathology report, over a month after her lumpectomy. She requires no further treatment, just a mammogram and an appointment with her breast surgeon every year for the next five years. Good news, but it's really far too long to wait for results.

I haven't read Chris Woollams' newsletter as I just haven't had the time. I also find that he has a tendency to repeat himself. However, the article on chemotherapy would be worth a look. I still watch Covid bulletins from Dr John Campbell. He explains everything very clearly and uses verified scientific data rather than the dubious 'information' used by Johnson and co. Dr Johnson emphasised the benefits of vitamin D to the immune system months before the Government decided it might be worth a try. The vitamin D supplied free on the NHS is about one tenth of the daily requirement, so almost useless.

Very sunny here. No snow although it was forecast for Norfolk.

Keep safe and well.

love,

Gill xxx

Jan 25, 2021 10:30AM Rosiecat wrote:

Hi Mary,

Good luck with your cataract operation today. I can remember when people just had to live with cataracts and grow older fearing blindness. Thank heavens that's no longer the case. Michael's annual glaucoma check up has been cancelled again. My daughter's check up in a different part of England went ahead as normal.

I can understand why you have reservations about having the Covid jab. In your shoes I'd want to be in hospital with an EpiPen at the ready just in case. I too had a bad reaction to a tetanus injection, not anaphylaxis, but a strong pain at the side of my neck followed by passing out and vomiting. I wouldn't have another. No other vaccination has caused problems.

According to Government statistics vaccinations are going very well here. However, there are many NHS workers not yet vaccinated when they should have been at the top of the list. Those in group 4 (my group) are being told to expect their jab by mid February. We shall see. Sufficient vaccine supply and staff trained to administer vaccinations are problematic so only one jab is being offered. The second will be given at least three months after the first, not ideal.

I'm reading more and more about the need for vaccination passports. I doubt if a clear Covid test will be enough for travel companies. My son is a very keen traveller and has several holidays and at least one cruise every year. Unfortunately he's been needlephobic for many years and hasn't been able to overcome his fear. I don't know how he's going to be able to get over this hurdle.

It must be a huge relief to be so many years away from your cancer diagnosis, I'm still a long way from that. I looked at some recent research into metaplastic cancer over the weekend. The statistics are still fairly grim and one recent paper had the words 'dismal prognosis' printed in the first few lines. So, back I went to the dark place in my mind reserved specially for cancer. Since then every twinge, ache and pain has been meaningful. Maybe Winter weather and lockdown are getting to me and maybe I ought to stop reading/listening to the news - and research papers.

Let us know how your cataract operation goes.

Take care.

Love,

Gill xxx

Jan 27, 2021 06:26AM Rosiecat wrote:

Hello Peter,

Just to let you know that Boots sell Emla cream. Totally numbs the area, excellent for those who don't like needles.

Sorry to hear that Liz is having a difficult time. Hope she has good results from her recent blood test.

Gill X

Jan 27, 2021 10:04AM Rosiecat wrote:

Hello Peter,

I quite understand your fear of injections. My son is needlephobic and nothing can persuade him to have any kind of injection or blood test. I dread going to the dentist too, don't mind the painful injections as much as the drilling. Once had root canal work - never again.

I do hope Liz doesn't have a bone marrow problem. She's really been through quite enough.

Gill x

Jan 27, 2021 12:18PM sylviaexmouthuk wrote:

Hello Peter,

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

I can fully understand the effect of a cancer diagnosis and a cancer journey with all its after effects on couples, especially young ones. It is a very stressful and traumatic time.

I do hope all will go well with your Covid vaccine tomorrow. I have a younger brother who had a great fear of needles. He told me recently that it came from when he had immunisations as a baby. Somehow his wife has cured him of it but I do not know how.

Raymond and I have not had our vaccinations yet, but we have just received our letters from the NHS inviting us to have one. Apparently we have to go online to do this or phone 119. We have not done this as we intend to go quietly to our local pharmacy, hopefully next week. We do not have a car so do not want to go to one of the mass gatherings.

I was so sorry to read about everything that has been happening to Liz. I do hope that everything will work out for her. How long will they keep on blood thinning tablets? I hear of so many people being on either anti-platelets such as clopidogrel or a new class of anticoagulants that are not as problematic as warfarin and one of them is apixaban (brand name Eliquis) which is its generic name. These ones do not need all the blood tests that warfarin needs.

Please give my best wishes to Liz.

Take care and let us know how Liz gets on and how you get on with your vaccine.

Best wishes.

Sylvia

Jan 28, 2021 01:02PM peterandliz wrote:

Hello All,

Just a quick update the vaccination went well, very organized. They were vaccinating in 6 separate rooms so a constant stream of people going through. I was greeted at the door, Sanitised my hands, walked through were they asked for my name to cross me off their list I then joined a queue of 6 people. Within 2 minutes I had been called into the next available room, Name, address and age confirmed. The injection was very quick and painless. Everyone had to stay in the large room for 15 minutes after the injection just to make sure we were ok and did not have any allergic reactions.

Liz is on Rivaroxaban which is a new blood thinning drug but has given her some gout. she is keeping off red meat and cheese which helps.

Regards

Peter

Jan 29, 2021 07:53AM Rosiecat wrote:

Hello Peter,

Well done! You must be greatly relieved to have got the vaccination over with. Not too long to wait before you'll have some protection from Covid. Hope Liz will be offered her injection soon. I'm having mine on Thursday morning at the local GP surgery.

Best wishes,

Gill

Jan 29, 2021 08:53AM sylviaexmouthuk wrote:

Hello Peter,

Thank you for reporting back on your vaccination experience. I was glad to read that all went well.

Thank you for giving the name of that new blood thinning drug that Liz is taking. I was interested to know because one of my cousins has recently been put on a blood thinning drug of the same group. A few days ago I downloaded a leaflet from the NHS on this group of drugs, known as NOAC (non vitamin k oral anticoagulants). There are four different ones but they all seem to be for the same thing. My cousin has been very ill in hospital. He has had diabetes for a very long time and not taken care of himself. In addition, he was diagnosed with atrial fibrillation (racing heart beat) and given the anticoagulant Apixaban, which is, like the others, prescribed for additional risk factors such as diabetes mellitus and hypertension.

It is not raining here in Exmouth at the moment but it will not be long before it is. It was really windy this morning.

Life is pretty routine with us and we are looking forward to Spring and Summer and wondering when we shall be free of Covid-19.

Take care, both of you.

Best wishes.

Sylvia

Jan 30, 2021 08:42AM helenlouise wrote:

hello Gill and all,

My understanding is the fraction means how well your heart is pumping. Herceptin has the potential to impact how well your heart can pump. My MO said my ejection fraction is still better than his even though mine is slightly less than the previous test result. So I am happy to go with that although if my EF continues to decrease I think I need to consider is the treatment worth a heart issue?

Xx

Jan 31, 2021 09:12AM cocolala wrote:

Hi all,

I have talked to my oncologist and he told me that even if lymph nodes are clear, he still need to see the surgery findings before he decide whether or not to have further treatments. If he thinks that I do need to have chemotherapy, it would be 4 doses (3 weeks apart) + another 4 doses (1 dose split to 3 times weekly). I guess this is what the other oncologist is doing.

I have also went for second opinion with another surgeon who can perform both mastectomy and breast reconstruction. He suggested lymph nodes clearance instead of sentinel lymph nodes removal due to the fact that I'm local recurrence. I am comfortable with this surgeon especially he is patient and not rushing, thus I have confirmed with him for the surgery on 2 Feb. I will be admitted tomorrow morning for PET scan. Hopefully all turns out well.

Feb 1, 2021 07:18AM helenlouise wrote:

Yes good luck Cocolala and please do let us know how you go.

Best regards.