Hello BW123, 

It's such a difficult decision to have to make and I hope that you will hear the insights soon of members of our community who have had to make this major decision. I hope that you will hear from their personal experiences and what they themselves decided but it's important you try and find what is best for you weighing all the pros and cons and don't hesitate to talk openly to your oncologist about your fears, your worries and to ask them every single question that pops into your head so that you can make an informed decision. 

Don't hesitate also to get in touch with our cancer nurses on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm and it might help to talk things through with them too. 

Best of luck making this tough decision and do come back and let us know what you have been advised and what you decided to do in the end. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi BW123,

A very warm welcome to our forum.

As our moderator, Lucie has said, this is always a difficult decision and, one that only you can make. It is impossible to decide, if you don't know all of the facts. You will find that it is best to write down all of your questions and to bring them with you to your next consultation. If you involve someone else in doing this, they may well come up with some questions that you haven't even thought of. I have had 2 bouts of breast cancer. These were both stage 1, Pure Mucinous Breast Cancer. Fortunately, my lymph nodes were clear. The second bout appeared just under a year after my initial lumpectomy. I then had a double mastectomy.

I had lost my mum to secondary breast cancer and was terrified of recurrence. I had been informed that this was a less aggressive form of cancer, so I was surprised to have another cancer in the same breast, less than a year from my initial surgery. I had less discomfort with the double mastectomy than I did with my lumpectomy. I did have a build up of fluid after the mastectomies, but these were aspirated a few times and I got great relief, as soon as this was done. I know that we all heal at different rates, but it only took a couple of weeks more for me to heal after my mastectomies. I didn't experience the discomfort that I had going over speed bumps, which continued for several months following my lumpectomy. 

I have never regretted my decision to opt for the double mastectomy, even though I was not a suitable candidate for reconstruction, due to previous surgery. I manage fairly well with an assortment of prostheses for different activities. This made my recovery less traumatic than it might have been, if I could have had it.

 I am glad to hear that you are coming to the end of your chemo and can assure you that the surgery is not nearly as tough. Were I in your shoes, I would certainly give serious thought to having a mastectomy, as triple negative is a more aggressive form of cancer and you are at a more advanced stage of the disease than I was. However, this has to be your decision and yours alone, as you are the person who has to live with the outcome. Don't be afraid to ask any questions that you think of - there's no such thing as a silly question!

I sincerely hope that you reach the right decision for you and I am always here if you have any further questions.

Kind regards,

Jolamine xx

Hi BW123

It is a hard decision to make, I havent been through it myself, but my mum had a lumpectomy first, but they didnt get clear margins with it, she then decided to have a mastectomy.  As Jolamine says, she actually had less pain following the surgery for the mastectomy than the lumpectomy ( although she also, did not have reconstruction).

Good luck with the rest of your treatment.

Best wishes

Annie

Hi Jolamine and annie123,

Thank you so much for sharing your experience, I will definitely start my list of questions for my appointment next week.  I am leaning towards a mastectomy but would have reconstruction.  The fact that it will hopefully remove the need for radiotherapy is a huge bonus for me too.  I also heard that you don’t need to have mammograms either.  

I just need to know that I’ve done everything I can to prevent recurrence as I know triple negative has quite a high chance of coming back and I think I’d forever worry after a lumpectomy.  

Thanks again, B x

Hi BW123,

Given the type of breast cancer you have, along with the staging, I think that I would feel the same.

Please keep in touch and let us know what you decide to do.

Kind regards,

Jolamine xx

Thank you - I have an appointment next Friday so I will let you know what we decide x

I shall be thinking of you on Friday and hope that you reach the right decision for you.

Kind regards,

Jolamine xx

Hi Jolamine 

I thought I’d pop back and let you know that I will be having a single mastectomy towards the end of November. Thank you for your advice x

Hi BW123,

Thank you for the update. I am glad to hear that you have reached a decision and I hope that you feel happy with this now. Given the chance of recurrence with this type of cancer, I am sure that you would feel happier to have done all you can to try to prevent this from happening - if only we had a crystal ball to see into the future!

Have you finished your chemo yet? Have you got a date for your surgery yet? I sincerely hope that it all goes well and that you won't need radiotherapy.

Kind regards,

Jolamine xx

Hi Jolamine,

Yes, I am happy with the decision and like you say, I want to know I’ve done all I can to prevent recurrence. I finished my chemo mid October and believe mastectomy will be before the end of November as it has to be within 6 weeks but no dates yet. 

Hoping to have a normal-ish Christmas