I have to decide if I should start chemo

Hi ERose 

Yes, I had to make the same decision.

I had TNBC which was caught early and I only needed a lumpectomy. However, one of the sentinel lymph nodes removed was found to have micro deposits of cancer in it.

An appointment was made for me to see an oncologist who said there was a small benefit (can't remember the figure) in me having chemo and he was happy to approve it if I wanted to go ahead. I decided that I wanted to have every opportunity of preventing the cancer from coming back so agreed to have chemotherapy.

Yes, it did take another 6 months out of my life but I felt it was worth doing to try and prevent recurrence. Fortunately, I didn't struggle with side effects on chemotherapy so I was still able to get out and about, albeit I avoided crowded places and coming into contact with anyone who was ill.

You say that you don't understand how the cancer can come back if all your breast tissue has been taken away but, as I understand it, breast cancer can come back in any of your organs, eg liver, lungs, etc, as it can spread through the blood not just the lymphatic system.

Ultimately it's your decision and you just have to go with what feels right for you.

((hugs))

Hi ERose 

I am sorry you are in this situation and facing such a difficult decision. It’s so hard when there is no way of knowing your own future.

I had a slightly larger grade 3 TNBC tumour, at 18mm, with no lymph node involvement, and was strongly recommended to have chemo. I wasn’t keen as I could see from things like Predict Breast that the benefit wasn’t great. I had 24 weeks of treatment- 4 cycles of EC and 12 weeks of Paclitaxel. It wasn’t pleasant but it was very doable. In the end, I went for it because I didn’t think I would find it easy to live with myself if I refused and then had a recurrence. As it turned out, having chemo did save my life, but not in the way I expected. I was already metastatic but didn’t know - the cancer had spread to my liver through the blood stream before I had surgery. I found that out by chance about half way through the chemo when I became ill with diverticulitis and had a CT scan. What then did save my life was moving onto immunotherapy which did what the chemo couldn’t, and put me in remission.

Which brings me to the thought that whilst it’s better to prevent something in the first place, there are a lot more treatments for TNBC these days, including metastatic TNBC, including some specifically for the BRCA gene. 

Hi

so sorry you’re going through this. 5 years ago I had similar. I firstly went for removal of the local area. Test showed despite taking a wide area around the cancer that there were still problem cells.  I then had second surgery and mastectomy. Luckily didn’t show any problems in lymph nodes.

I was supposed to have chemo and was made aware of the relatively low % improvement of it not coming back. Covid struck and I only had one cycle of chemo because it was too dangerous to continue.  5 years on it has returned  just above the reconstruction and I’ve had more surgery and have had my first chemo. 
TNBC is really unpredictable and doesn’t have the same treatment options to protect you.  Personally I would take everything the offer you ️ 

I’ll be on chemo for 18 weeks followed by radiotherapy.  

in the grand scheme of things it’s 6 months ish to potentially save your life.  So far I’m not as sick as I was last time and you might be lucky too.  The only thing I’ve done differently is to make sure I was well hydrated before and after chemo. Fingers crossed drinking plenty of water (2 and a bit litres) is what has helped flush meds through my liver. 

I really hope you’ll be ok. Take care. Eve xx 

Thank you for asking the question. I am in a similar position - in that I need to make a decision whether tho have chemo for triple negative. I feel that I would do anything to prevent cancer coming back and I think I would regret it if I didn't take what was offered. The answers to your question have made me even more sure.

Hi ERose I'm 34 and was diagnosed with TNBC in December and underwent a double mastectomy last month. I have been told today that whilst the results have come back clear, it is recommended I have chemo to increase my chances by 5%. I am still waiting for my oncology appointment but I wondered if you are happy to share the decision you took in the end? If you opted for chemo, what does the treatment plan look like?

Hope you are doing ok xx 

Hi It was made clear to me that a double mastectomy and then chemotherapy was the best way forward.  My TNBC was Grade 3 stage 1 and my lymph nodes were clear.  However chemo as well seen as giving me the best outcome.  Should any cancer bits be floating around in my body then this would help clear them up.

I hope this helps

Hi MV1,

So sorry you are having to make the same decision  

I decided to go ahead with the chemo. It was a really hard decision but once I had decided to go ahead my whole team said they would have done the same. Very frustrating they don’t say it as clearly before you decide but I guess they try to not influence you too much with their own feelings. I have been put on an 8 cycle plan every 2 weeks - 4 EC followed by 4 paclitaxel. I’ve only had one EC so far and as horrible as the first few days were directly after (nausea and fatigue) it is definitely manageable. I decided that even though the risk is really small of reoccurrence one doctor said as a worst case scenario if it came back it could be as little as 2 years prognosis. For me that sealed it as 4 months of chemo vs my whole life felt worth it. I hope this helps xx

Thank you ERose That's really helpful to know.I need to speak to my oncologist to understand more details of the the treatment plan but the more I have sat and thought about it today and read through various posts, the more I believe chemo to be the right step. I can completey understand how the comment made by that one doctor would seal the deal. 

I hope you don't mind me asking but how did you find the recovery from the double mastectomy. I am 3 weeks post surgery and still feeling very uncomfortable.

I hope your chemo goes well and quickly for you xx

Hopefully your oncologist can help with understanding how long the plan will be etc. for me the cold cap was the worst part but after 10mins you go numb and it’s tolerable. 

My recovery was really tough first few weeks but it does get better. I was always told week 8 you feel totally different and they were right a lot of my wound low level aches just went. I will be honest and my stomach DIEP scar reopened once the sutures melted. It’s very frustrating as now I am on chemo it will take a long time to heal fully but it will get there slowly and isn’t painful. From a mastectomy point of view I found gentle massage really helpful to get my skin used to being touched again and to reduce some of the swelling. It took me a while to get the confidence to look at my scars but now I’m more fascinated by how my body can heal from something so major. 

I hope you get a bit more comfortable soon!!