Triple negative stage 2 BC

Hi Louise, sorry you've joined the most unpopular club. I was diagnosed on February 10th my mastectomy is 23rd this month after that i will know if i need chemo or radiotherapy. . Yes, I totally understand your head being all over the place, mine was and still is most days. I try really hard to keep upbeat and positive but it's difficult sometimes. I'm also trying to take any positives out of a negative situation. Hope all goes well for you xxxx

Do you mind me asking why you’ve gone for/been advised to have a mastectomy? If I need one I’ll go for a reconstruction as well, but they think at the moment (prior to MRI), I can probably have a lumpectomy.

I now qualify for the genetic testing I asked for twelve years ago, so if I have the faulty gene I’m going to think seriously about the repercussions of that.

It was to do with the margins around the tumour and its position, also there was another suspicious lump they saw on the mri underneath the breast and I couldn't go through another wait for a biopsy and results. Also it had spread to my lymph nodes, so I decided to have the Mastectomy, without reconstruction, as the hospital that could do that was so far plus I had read it was a longer operation.

I was debating about having reconstruction later from body fat/tissue but I can't go through all of that it's another long procedure with a recovery time of up to 12 weeks. If I was a younger woman I would probably feel differently. But I'm 66 this year and my husband is so supportive, we have been together since we were 18.

It’s such a blessing having a good husband isn’t it? I met mine at 17 and feel we’ve dealt with a lot in the last 20-odd years. We’re not far from Leeds so I think I’ll be luckier in terms of hospitals if it comes to it.

I hope you’re doing well. We had friends with young children round for dinner today and I feel a lot more grounded than I did, although I don’t think I’ll have the two year old climbing over me for a while if I’m going to have surgery/chemo/whatever else.

Hi

I have triple negative and have now finished chemo and surgery, I was surprised that you said you did not know if you needed chemo, TN can be aggressive but does not mean it is but generally it will always be treated with chemo, most of us have chemo, surgery, rads but a small amount of ladies have surgery first. My tumour was 21mm, went down to 18mm in chemo and on surgery there was only dead cells so the chemo had completely killed in the cancer. One thing I would advise is stay away from Googje, it has really old and bad advice on there.

Kerri

Yes Dr Google isn’t helpful. I was just going on what the consultant said but I’ve prepared myself for chemo. Were you completely wiped out for the whole period of treatment or did you have some good days? I’m more worried about boredom which sounds ridiculous. I’m used to being busy that’s the trouble.

Hi

I worked all through chemo, yes you are fatigued but chemo really is not that bad, the way I looked on it was chemo is our friend with TN. I did not get much sickness as made sure I took the anti sickness meds even if I did not feel sick,  I drank loads of ginger tea as well. Be prepared for the weight gain, I took 2 stone during treatment. I found it hard as I did not have the energy to clean my house bit my parents and husband were great. If you can get help from family or friends just take it.

If you need any advice do message me, always helps if someone is or has been through it.

Kerri

Hi Louise 21, sorry to hear of your diagnosis. Whilst I’m not triple negative I was triple positive. I’ve not heard of any triple negative cases not have chemo. I have gone through surgery, am going through chemo at the moment with radiotherapy, targeted treatment and hormone therapy to follow. Chemo is different for everyone and although it can be tough it is doable. Some people have more side effects than others and some don’t seem to have any problems at all. I’ve not gained any weight I’ve either lost some or remained the same. I’ve felt very tired at times so have taken those days off work and then when I have felt better I’ve gone in for a few hours. 
Wishing you all the best on your journey.

Hugs from cuffcake x x x x x

Thank for replying. I’m glad you said not everyone gains weight because I could do with losing a few stone now - hate to think what I’d look like with no hair and significant weight gain. 

I’m a primary school teacher and my breast care nurse said teaching during chemo wasn’t wise, so I’ll either be doing a lot of admin or knitting ‍♀️

 All the best for your recovery xxx

Picking up on the various comments about chemo, oncologists are guided by best practice set out on medical resources such as UptoDate. UptoDate recommends chemo for grade 3 TNBC tumours larger than 0.5cm. Increasingly immunotherapy is being added for those with suitable tumours. Key factors are grade (how aggressive it is), stage (whether it has spread), whether it has lympho/vascular invasion, and whether it has certain proteins (eg those targeted by immunotherapy).

I was diagnosed over a year ago. I thought I had an early stage TNBC at 18mm with no lymph node involvement. The surgery established that I had vascular invasion. I had chemo. Part way through chemo, I found out that I had a secondary deposit on my liver, it had travelled via my bloodstream before the primary surgery. 

I wasn’t overly keen on the idea of chemo but am grateful I had it. If for no other reason than it caused the hospitalisation that meant I had a CT scan and found the secondary! 

I kept a blog throughout. community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer