After a long wait for biopsy results on a suspicious area I’ve now found out they are benign micro calcifications which needs to be removed along with the malignant lobular cancer. This can either be by lumpectomy+ radiotherapy, or by mastectomy. (Had these micro calcifications been a 2nd malignancy I would have had to have a mastectomy). I asked my clinical team which option they would recommend and was told that they make no recommendations and that the decision is entirely mine. I had hoped for some guidance but other than being told that the outcome is the same whichever treatment I have, it’s all up to me to decide.
I’m hoping to meet my surgeon on Friday so would be grateful for any questions that you wish you’d asked your surgeon in a similar situation.
he recurrence rate is the same the recurrence rate is the same for limpactomy as well as mastectomy. Why have two different size breasts. Why have a big surgery with less pain? If you need a masectamy later, you will deal with it. I hope better treatment are the horizon. Good luck
its so hard when the choice lands with you - you just want someone to tell you exactly what to do!
My surgeon only did mastectomies as an absolute last resort. My cancer was large - 11cm - she did a therapeutic mammoplasty. I went on to have radiotherapy. She said , exactly as you have been told, that the outcome is exactly the same. My gut reaction at the very beginning was ‘just take it off’, but I trusted my surgeon 100%, so was happy to go with what she thought.
Dear @joy3, I’m sure you already have a good list of questions ready but these are my suggestions:
Lumpectomy
How long is the operation? Where will the incision be and how long? If lymph nodes being taken will that be by a different incision or the same one? How much breast tissue will need to be removed? What will my breast look like afterwards? Will I lose the nipple? If I keep it will I retain sensation? Can you show me some photos of your work? Will I need a drain? If yes, how long will it be in for? If clear margins are not obtained will I be offered another lumpectomy or will I then need mastectomy? If this happens how long after the first operation will the second one be?
Radiotherapy
How long after surgery will radiotherapy commence? Where do I go for that? How many sessions would I need? What are the risks/side effects of radiotherapy?
Mastectomy
How long is the operation? Where will the incision be and how long? If lymph nodes being taken will that be by a different incision or the same one? Can you show me some photos of mastectomies you have done? Will I need a drain? If yes how long will it be in for? What are my options for post surgery reconstruction if I want this?
You may also like to call the BCN helpline to chat things through with one of the nurses. Another option would be to call BCN Someone Like Me and ask if you could be matched with two volunteers - one who opted for lumpectomy with radiotherapy and one who opted for mastectomy.
Hopefully your chat with the surgeon tomorrow will give you more information to help you decide. You will know when you have made the right decision for you when you feel peace in your heart.
I wish you all the very best for your forthcoming treatment. Love Tulip xxx
Hi, this is not a decision I had to make as I had no option but to have a mastectomy. But I have just noticed a video on YouTube by Dr Liz O’Riordan on choosing between the two that may be helpful? Good luck with your treatment whatever you decide x
If it’s any help I had a lumpectomy and radiotherapy with first diagnosis and then a mastectomy with the second diagnosis.
It’s mostly down to personal choice. With the lumpectomy and radiotherapy you obviously have a less invasive surgery, a quicker recovery but more hospital appointments for the radiotherapy. This can cause fatigue, skin issues (different for everyone) and internal scarring that may or may not be a problem in the future.
With the mastectomy it’s a more invasive and longer surgery. Some people have a drain in after. Some develop seroma’s or haematoma’s and this can cause complications. The recovery is a bit longer but once you are recovered that’s it.
It’s weighing up the pros and cons and how it would affect you personally really.
Happy to answer any questions you might have if I can but otherwise hope that helps.
Hello, just wanted to share that I had a lumpectomy and then a mastectomy. That’s more, not less surgery, risk etc. They try to conserve the breast. My main question would be how likely do they think it is that you will ultimately need a mastectomy? I found it unfathomable that, in a short time and in a pretty scared state, I was the one having to make these decisions without an indication of what the surgeon thinks is best. Get all the information you can and don’t leave until you have all the answers and fully understand your options. Your BC nurse should be able to guide you through. Mine is brilliant. Good luck x
I agree it’s bizarre that you have to make the decision without any guidance from the surgeon. They spend hours doing tests and discussing you at the MDT meetings then say that the outcome of both types of surgery is the same so it’s up to you.
Thanks for your question suggestion. It’s definitely one I’ll add to my list.
Thanks for your reply. I’ve spent ages writing down my perceived pros and cons for each option and it’s a draw!
So I think it’ll have to be a heart over head decision.
I agree that it would be nice for someone else to just tell me what to do. Still, I have to live with the post op body so understand that it’s ultimately my choice. I’ve done lots of pros and cons and they are even Stevens on both options. So, my heart will have to have the casting vote
I had a similar diagnosis, but was told that the benign calcifications were likely to become a problem in the future. The drilling for samples took place three times though, in a short time, which was very unpleasant and I asked a couple of staff members, if you were in my situation - what would you do?
As a result, I decided to have a DIEP Mastectomy, as I really hoped for a one and done. I’m 6 months past surgery, 5 months past radiotherapy.
Radiotherapy, I think, went quickly and smoothly. I have various healing pains / twinges, but feel significantly better this last month, including more energy.
I think it depends how comfortable you are with having a second surgery + likelihood. I also have family members with higher needs, and was not sure how everything would stay on track if I had a second surgery in the next couple of years.
Thanks for sharing your story. Our situations do sound very similar. Your recovery sounds like it’s going well x
Having now met with the surgeon we’ve come up with a plan to start with a lumpectomy. She admits that it’ll be hard to tell what to remove as the lobular cancer and calcifications are much harder to see than a ductal tumour and she’ll be going mainly on the advice of the radiologist. If the post op pathology shows anything in the margins then I’ll have to have a mastectomy.
Even though I’m potentially signing up for 2 surgeries I’ve decided that’s best for me. I did a long list of pros and cons for lumpectomy or mastectomy and they came out equal. In the end the balance was tipped by the simple fact that I was more sad about a mastectomy than a lumpectomy.
I think that doing it this way will mean that, if I do have to have a mastectomy it will be in the knowledge that it really is the only option.
Having gone through the decision making process I now understand why it has to be my decision - I’m the one who has to live with the recovery and moving forward so only I can make the decision at the end of the day.
