Just diagnosed with aggressive triple negative

[ktk]

Hi. I was diagnosed TN at Easter, following mammogram and ultrasound. I found the lump myself initially. Unlike most, it seems, I had surgery (TM) and am now having chemo (3xFEC, 3xT). Two cycles so far, then rads to come. It is all doable, a means to an end. Just keep positive and trust in your team. Kxx

[micje]

My story is very similar Iamstillme, triple negative grade 3 with 1 lymph node affected. The lump seems to be growing so fast I'm worried the chemo won't be able to shrink it! It literally feels like my right breast is one big tumour 😞 I've just had my first EC of 4, then T x 12. How do you feel?

[Iamstillme]

Hi Kaicorie,
I have also recently been diagnosed with triple negative grade 3 with node involvement but in my right breast. The original tumour was 3cm at the first ultrasound but they found that it almost doubled in size 2 weeks later when an mri showed that 1 6mm tumour 16mm away and a 6mm tumour in my lymph nodes. I start neoadjuvant chemo next Friday (EC x 3 & T x 5) but mastectomy is probable because I have small breasts. Node removal is certain. Also, double mastectomy is a possibility if the BRCA 1 or 2 gene is present but that is my call.
I completely understand how scared you feel but you are not alone. All the love and support will be here when you need it. I've found that the waiting is the worse bit as the fear of the unknown sends your brain into overload.
I felt emotionless until I got my treatment plan and I think the relief of finally getting it gave my brain time to rest and that's when my emotions got the better of me. It did me the world of good, I think, as I can now prepare myself for the battle I face with a clear head. Yes I'm still scared but I can now properly focus on getting through the first stage.
I have started to realise that I have to stop focusing on what I can't control and stick with the things I can.
Sorry for the long post but if it helps one person, it'll have been worth it ... I hope! xx

[Jujustu3]

Hello, ive recently been diagnosed with triple negative but so far hasnt spread to lymphs. Like everyone else i was/am devastated, thought my life was over. Realise every ones treatment is different. Mines every week for 12 weeks (chemo), then different chemo for 4 x 3 weekly cycle up to Xmas. Then surgery around Xmas (hopefully). Started chemo without any scans but got CT scan booked for 12th July. And a MUGA booked for next Weds. Petrified what those 2 are going to show up and will be worrying until someone tells me the results are ok (hopefully). I do know i cant do this alone though so will be on here alot reading other peoples experiences. We must stay positive and help each other through this horrid experience. Talking helps xx

[1852]

Hi jay sorry to hear about your wife ,I finished chemo in 2015 I have 6monthly appt alternating between oncologist and surgeon where I discuss any problems I have or I can ring the breast nurse team in between these appointments . My oh was very supportive while I was going through treatment only thing he didn't come with me when I was having my chemo it was my choice I didn't feel it necessary but I do realise some people want someone there he always picked me up though . Hope your wife as minimal SE ,s and you are both able to get out even for little walks .best wishes

[Jay15]

Thanks a ton. ..I want to be with her all her life not just this period. ..so thank you for your positive answer. ... god bless you and your family.

[Caroline99]

Hi jay15 and welcome.

Sorry to hear of your problems and wife's health problem.

I had fec-t and surgery to remove a 90mm lump and am awaiting radiotherapy.

I have been very well since the surgery, so there is life after chemo and surgery.

You will need to be very supportive when your wife is feeling poorly, but there is light at the end of the tunnel.

My husband had to do the shopping during the week after chemo as I was very sick and tired, but I ordered it to be delivered the following week and was able to do the shopping myself during the third week, but we are all different so you will have to see how it goes.

I can't give any diet recommendations. I did drink a lot of dilute orange cordial after the chemo. She will have to drink plenty so will have to find something that she likes.

Best Wishes.

[Jay15]

Hi Ann,

My wifes been diagnosed with TNBC in August- a 22mm lump. She had her Centenal Biopsy yesterday so the node results are to come next Tuesday (19th Sep). We have been advised with Chemo >> Rad >> Surgery.

Her way of dealing with things are different to mine. She likes to take things as they come and she is the brave one in the family. The posts here are so inspiring and gives me a lot of courage. Your statement " Life does return to normal and treatments are really good now" has given me a lot of hope + the fact that you back at work makes me feel positive.

My question is what happens now that you are done with your treatment? Have the doctors confirmed that they have taken care of the cancer completely? Also are there any superfoods that you would recommed at time of Chemo to boost her immunity and regain strength? 

Sorry if my questions are personal and silly but I really love my wife.

[Kaicorie]

Can I also add I joined the closed group on face book it's called triple negative warriors it's been a godsend for me everyone is supportive and in the same boat xx

[Kaicorie]

Hi everyone, I think all trusts work different, I had mammogram, ultrasound and biopsy on 3rd of May, started my chemo in 15thJuly having 4xAC 4xTaxol every 2 weeks because of lymph involvement, will have surgery later. No mention of Mri or pet scan, having clips in on the 10th of July. Having my 2nd chemo today and it's not as bad as I expected, it was the waiting that was the worst, as soon as I started my plan I felt much better. Stay strong everyone we can and we will fight this cruel disease 😘😘

[Jean51]

Hi Mishy,
One of the first things my Dr said was that my treatment plan is tailored for my cancer. She explained that for some people will have op then chemo others the other way round.
My initial appointment I had ultra sound, mammogram and then whilst there said I needed a ct scan, as the mammagram wasn't clear enough.
So maybe they've got all their info from your Mammagram.
I later had breast MRI scan. My oncologist said this was quite grainy image. So it maybe they have all the info they need.
Remember your having bloods takien all the time checking liver functions and stuff. So this will flag up any problems. Which then would lead on to scans.
If this is playing on your mind. Give your breast nurse a ring. I've rang them about stuff that I'm worried about and they've answered my questions.
I went for my clip put into my tumour on Monday and it was the same dr who did my biopsy. She remembered me. (Not sure why!) we were chatting and she told me that she new it was TN before she did biopsy because it looked like a TN tumour. Apparently they are round with a hole in the middle. Mine looks like a mini Doughnut! Has anyone else's TN tumour looks like this. She also said it is really solid. So much so she struggled to get clip in and bent her needle. I think this is why it's not gone to lymph nodes as it's such a hard mass.
Lou x

[Glamkaz]

Hi.....I was also diagnosed with triple negative breast cancer and was devastated.  Just saw my life flash before my eyes.  I had a sentinel node biopsy and had spread to 1 node which was removed.  I had a bone scan, breast MRI and CT of chest, abdomen and pelvic area, all of which were clear - much to my relief.  i had my first chemo cycle last Thursday and am starting to feel ok now...... Really wasn't as bad as I expected.  Just so happy treatment has started.   Most important for me is not to look too far ahead.  I have 6 chemo cycles 3 weeks apart then surgery then radiotherapy.  Need to remain positive.....

[Mishy18]

Sorry I meant lou!!! Starting week of 10th July x already had my op x

[Mishy18]

Hi Jean yeah your bang on with the TN bit only chemo works so it's a must to help prevent a recurring I too have accepted it has to be done and thinking about we are very lucky really to be given all the treatment x after watching the program last night about cancer I feel so lucky the drugs I need are available to me on NHS some are not so fortunate including children which is so sad, we all have our off days I've had a few lately think it's cos my routine has been totally changed x and yeah definitely different trusts do things differently following letter from app I realised my MDT have planned my treatment just for me hence no scans so I think it's important we don't read into other peoples threads and panic if we don't have same treatment regime xxx

[Jean51]

Hi Everyone,
I'm age 42 and recently diognosed with a 3cm TN breast cancer. I've had a senternal node biopsy which came back negative. I've had same emotions as everyone else on here. But since no lymph nodes I've really being positive. My dr kind of described it that if it was hormone bc it would be op and tablets but because hormone tablets don't work on TN only chemo available. This has made me see things much clearer. I'm having chemo first then op. I'm actually glad I'm having chemo now. At least I know I've done everything and had every chance to prevent secondary. I have my first chemo on Friday. I'm going to try cold cap but if it's to much for me I'm not stressing about I'll just stop.
I've got my head around everything now and feel ok. In fact at my pre assessment I had a stress test and gave myself a 4 out of 10. My main stress being kids, hubby and elderly family. As to what it's doing to them. I thought for was good concidering I would of given myself a 10 a few weeks ago. I've found keeping a diary helps. When I have dark thoughts and good! I write it down. Which has really helped.
Anyone else starting chemo soon?? Lou xx

[ann-m]

Do check with your team, Mishy, but maybe they have the info needed for your treatment plan. With MRIs for example, it's not routine for everyone, only those with a lobular bc diagnosis or maybe dense breasts.
ann x

[1852]

Hi mishy18 I didn't have any scans I was diagnosed in 2014 . had mastectomy first then chemo I had mastectomy because in my trust if you have two lumps in breast which I had mastectomy is always recommended like you say all trusts work differently .

[Mishy18]

Hi I'm TN too but reading through the threads I have noticed different trusts must do things so different I have not had any pet scans mri or cat just my original mam ultrasound and biopsy at beginning I'm now post op 5 weeks with 1 me static node tumor as well as invasive ductal tumor removed WLE and 5 nodes out waiting to start chemo, seems we all have had different treatment pathways x I can't understand why I I never had a scan of any kind I would like to have had them x

[Cruzita]

Hi, I understand what you are going through. I felt a lump mid April and I am still waiting to start chemo. The waiting is nerve-wracking, but there are so many tests that are necessary before starting treatment. But we need to have faith and stay positive. Wish you the best take care.

[Cruzita]

Thanks for your comment. Trying to stay positive. I'm scheduled to have my port in by July 3rd. Still not sure when chemo will start. Will see my oncologist Monday maybe she will tell me then.

[Cruzita]

Thanks for your comment . I feel better now. Waiting for MRI, CT and pet scan results. Will see my oncologist Monday. I am afraid of the results. But still hoping it hasn't spread.

[Rosie65]

I am also tnbc, had a 3cm lump but no obvious lymph node involvement. I was also told tnbc is always classed as Grade 3, because the cancer cells are so very different from the normal cells. Three EC chemo sessions have reduced the lump to 1.5 cm so far.

The early days are really difficult,your mind works overtime and you imagine all sorts of things. It does get easier and once you have a treatment plan and realise what can be done you'll feel much calmer.

[katie11]

Sorry I did mean grade 3 not stage. I had chemo yesterday and have chemo brain so please forgive me x my tnbc is stage 1 grade 3 x

[AnnDaw]

Hi kaicorie hope your chemo goes well today and side effects are mild. Xx

[AnnDaw]

Hi Cruzita I had tnbc 50mm lump and 3 of 5 nodes sampled were positive so had mastectomy followed by fec-t chemo and then node clearance on right side + 15 rads. The reason for me telling you this is because I was told I was stage 2b. I don't know if you have confused stage with grade as all tnbc with node involvement is grade 3. They normally tell you the stage later in treatment. Hope this helps to settle you a little bit. This is a very emotional time for you but you'll feel better as treatment goes on. I had a year off work and went back last September. My job is quite physical and now I feel really well. I made good changes to diet and take some supplements that I believe in. Life does return to normal and treatments are really good now. Try not to worry too much and take things one step at a time. Xx

[Kaicorie]

Hi Cruzita, I feel for you I really do, I felt exactly the same felt pain everywhere. The waiting is the worst, i calmed down a lot as time has gone on and I start my 1st chemo today. Sending big hugs xxx

[katie11]

Hi cruzita. This is the worst time waiting but you will calm down once you have more information and a treatent plan. Tnbc is usually always classed as stage 3 because it's aggressive so don't worry too much.

I too wenth through all your emotions and was convinced it had spread. I had a new sympton or pain every day but it hadn't. A lot of it is stress and anxiety and it can show in the body in a number of ways you don't even think of.

Try to stay positive , keep in touch and let us know how your doing x

[katie11]

Keep going gizzy you are almost there x

[Cruzita]

Yes, i just spoke with my team of doctors yesterday and the told me I have triple negative breast cancer with lymph involvement. They think it's stage 3 but won't know for sure until I have an MRI, PET scan and ct scan. I'm very scared. I've had panic attacks and keep having tingling and warmth sensations in my crotch and abdominal area and my stomach feels in knots. I also started having diarrhea. I feel as if my cancer is all over my body. Does anyone feel this way?

[GIZZY]

Hi im new to this too
Diagnosed oct 2016 tnbc - not spread to lymph nodes.
Have had 6 chemo - 3 fect and 3 doxitacsal 2 ops to remove tumour - 1st attempt did not take enough of a margin 2nd attempt i was given the all clear and 1st lymph node removed.
I am on day 15 of 20 radio therapy.
Has been a tough 9 months but can now see light at the end of the tunnel 😆

[1852]

Hi to all new people I don't often post I am 3yrs on from my mastectomy and chemo I had two lumps in my breast both tnbc it is very scarey but my advice is not to google , trust your medical team , listen to your body and rest when you can take tablets as adviced try and get out even if it only a short walk , accept help when it is offered it is an hard emotional journey but it is doable I had days when I thought I cant get through but I did ,I have seen two more grandchildren born since I was diagnosed ! Take care and virtual hugs t all X DEN

[katie11]

Hi Kaicorie, I to am triple negative. I've had my surgery and will have my 2nd cycle of chemo on Wednesday. Please don't Google about tnbc it is all quite negative. I completely understand about you being scared. I went through anxiety and couldn't eat but you will get through this. I was diagnosed in Feb and it use to be the first thought every day all day. Don't get me wrong I'm still struggling but you learn to deal with it. Once you know what treatment you are having and it starts you will feel more positive and feel like you have some controld over what is happening. Stay strong xx

[AnnieA]

Hey again. My GP wanted me to go back and see him after 10 days as I'm only 31 so everyone thought it was nothing. Even when I had my ultrasound they said it looked like nothing, until the results came in. Thank god my husband made the GP me because I may have not gone back after 10 days. Keep in touch with us and let us know how you are getting on xx

[Kaicorie]

Hi yes your right it's the waiting that's the worst. I went to my doctors 3 months ago with a lump under my arm and she told me it was nothing and not to worry, I went back and on the 3rd time she referred me. Mammogram found lump in my breast, since then things have been moving quite fast. Hoping it won't be to long before I see the oncologist. It's amazed me how helpful and strong everyone on this forum are, as much as I have very supportive family and friends it's nice to speak to people that are going through the same. Thank you so much everyone. Annie A hope you carry on coping well with your chemo xx

[AnnieA]

Hi there I am 7 weeks post TNBC diagnosis. I too am having chemo first which started for me this week. Now on day 5. My oncologist told me that this type of cancer responds well to chemo hence why it's usually given first. I am on 3 cycles of EC and then 3 TAX. I am coping fairly well at the moment with the odd side effects. This limbo time your in is the worst. Once your team have a treatment plan in place for you things become a bit clearer. We are all here for you should you need a natter xx

[Mai7]

H Kaicorie, sorry to hear of your recent diagnosis and welcome to our friendly club which we'd all rather not be in. I'm 48 and was diagnosed with grade 2 locally advanced invasive ER+/her2- at the end of March.  As the tumour is 50mm with diffuse margins and also 4 local nodes testing positive, chemo was not optional it was essential.  I just had my second chemo, 2 of 8 and will have an mx at the end. Whilst it's a lot to get your head around early on, once you're into the treatment it gets easier to deal with. I've coped well with the chemo, with minimal side effects. Your medical team are amazing so try and focus on you and getting healthy for treatment and find ways to distract your mind a bit. I've learned to get into relaxed mode by doing things like craft, reading, herbal teas, aromatherapy etc. Coming on this forum has been great for feeling less mentally isolate too. Take care. X

[Kaicorie]

Hi thank you both for your response, I feel a bit more positive today after reading posts on this forum. I've also checked out the face book forum. Thanks again for your help 

[ann-m]

Hi Kaicorie,

Sorry to hear you're going through this, it is such a scary time, but there are others here with a similar diagnosis to you.

As well as fb as lilneenz says, if you want to, do have a look at the other threads here, including the 'newly diagnosed' thread & the 'going through treatment' board where you will find the chemo & monthly chemo threads where you can join others at the stage you're at. 

There is also the helpline above, if you need to talk things through. 

hugs

ann x

[lilneenz]

Hi there
How are you today - this thread seems to be very quiet - I am not triple neg but have aggressive grade 3 her2 - I am a member of s Facebook group and many of the ladies ars triple negative and going through chemo first that may be able to advise you / I'll message you details xxx

[Kaicorie]

Hi everyone, I'm new to this but here goes. Last week I was diagnosed with primary breast cancer but had to wait for further tests. Today I have been told I have aggressive triple negative grade 3 in left breast and lymph nodes, I have been advised to have chemo 1st then surgery to remove lymph nodes and lump in breast. Feeling very scared. Anyone else been through this ?