TNBC

Hi Monalisa1869

I can't help with any experience, as I had a different type of cancer, but I noticed that your post hadn't had any replies yet. This is probably because this is such an active group that posts can fall off the first page before someone with the right experience has seen them. By replying to you it will 'bump' your post back to the top of the discussions list again.

It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi Monalisa,

I am glad your surgery has gone well. I have TNBC with a 2cm tummor and was told to do chemo first and then surgery. I have done 4 cycles so far. I was scared to go tbrough this as I had heard bad things about chemo. Well, it is not pleasant but not as bad as you think.  I have been a bit unwell for a few days after each treatment but then almost back to my normal activities. My tumor seems to have shrunk as I can't find it easily now. Must admit, I prefered to have surgery firts as it has been stressful waiting to see if chemo works but doctors told me it is better this way for me. Don't worry too much. You will find it easier than you had in your mind. Xx

I am pleased your lumpectomy went well and your nodes are clear. I was in the same situation as you are now back in 2015. My cancer was found early by a mammogram and it was only after the tumour was analysed that the TNBC was identified. This did mean that just like you,  chemo was recommended as well as radiotherapy.  Treatment has improved since 2015 and the drugs you will be given will probably be personalised to your situation. I can't promise it will be easy but it will pass. Here I am nearly six years on....still cancer clear.

During chemo you might find the monthly chemo thread which you'll find in the treatments section might be helpful. You will find others at a similar stage of treatment posting there. There is also another one when you move onto radiotherapy. 

If you just fancy a chat, have questions or need suggestions, feel angry or lonely, try the Awake thread in the Chat section. People post there day and night and even if noone is awake with you, someone will probably answer you early morning. The contributors on Awake are at all stages of treament and post treatment too and have a wealth of experience but they also like to laugh too. 

I hope the next stage in your treament goes well. You were right not to google. If you do .....use the NHS or Macmillan information lines for TNBC. They will explain to you sensibly the reason why you won't have further treatment after radiotherapy and why you need to keep a regular check on your own body but you don't need to be panicked by statistics. The sites that quote them do not take current practices into their calculations and this distorts results.

Take care. Love Karen

Hi raf44 thanks for your reply and reassurance. It’s the not knowing whAt happens next that’s the hard part - I’ve got an oncologist appt on Monday so I think things will start moving now. Xx

Hi lacomtekp - so glad to hear your doing well. I feel fine so it’s hard to think I had cancer - obviously the chemo hasn’t started yet so I’m not sure how much longer I’ll feel fine. Xx

Monalisa1869....It's good that you feel well after your op. I remember the same. As for what comes next......it's best to wait and  see how you react to the various drugs. After you see the oncologist you will have a better idea of the plan he is suggesting.Sometimes it's three weekly, sometimes weekly based on a variety of individual factors. Usually though the drugs will be a combination of EC....epirubicin cyclophosphamide and T....a form of taxotere of which there are several.

I'm sure your unit will give lots of precautions to help with side effects but make sure you have anti sickness pills, laxatives and imodium in the cupboard ....just in case. Some of the best advice I was given was to use a non alcohol mouthwash twice daily from day 1. I did this until radiotherapy was over. I never had a single ulcer. My clinic told me to use it before there were problems . It wasn't a difficult thing to do and if it stopped mouth problems.....The other advice I was given concerned nails. Unfortunately that product has been discontinued and you would need to ask about alternatives in a chemist but again I was told to use it before a problem began so I started the nail routine on the first day of chemo too. I never had a black nail or lost any so I think something may have worked.

 Finally if you are planning to lose your hair, buy some pretty turbans now. The day my head was shaved for comfort, I had a beautiful turban ready to pull on. That gave me time to look at the bald head as I was ready. Even strangers commented on the turbans. It gave me a bit of confidence when I was feeling low.

You will be able to discuss other things when they happen because they may not. Everyone is an individual.

I hope some of that helps. 

Love Karen