Recent DCIS diagnosis, lumpectomy v mastectomy, feeling unheard am I being overly dramatic?

Hi,I was recently diagnosed, as many here, with 0 stage DCIS, and I have now had my MRI, visit with my oncologist, my surgeon and even a radiologist in the event I choose a lumpectomy. I am so lucky as my husband is a primary care physician so I have someone who can help explain percentages, procedures, etc and help navigate…making less scary. This is my problem.

In. My mind, when I was diagnosed there was no question…I wanted a mastectomy. I wanted it out and done. I’m 64. I am not concerned with having my “native breast” I have a husband who will not love me less…etc. until 2002 I had never seen the inside of a hospital not for tonsils, appendix-nothing. But since…I have had 10 major surgeries of which 3 did not have great outcomes. I have hereditary severe disk disease and arthritis that started at the age of 36.  I’ve had a cervical fusion, lower lumbar fusion, bilateral thumb joints removed, shoulder rotator cuff surgery, total hysterectomy  and bi later hip replacements. My left hip of my hip replacements was done with a defective part, after not healing there was a revision.  That surgery resulted in an infection that put me on a PIK line and IV antibiotics for 6 weeks and blood check/draw everyday (not unlike the radiation schedule I will likely be on after a lumpectomy.  My point here is my surgeon really really stressed the lumpectomy to the point that she did not even offer a mastectomy. I asked about it and she said ‘Yes, sure you can do that, it’s a big surgery…there is no guarantee that the outcome would be any better or different.but it’s  an option” Then went into detail about how the survival rate is almost no different, if there is reoccurrence she can always go back and do a mastectomy then……you see I almost have PTSD. I have spent some much time over the past 18 years in hospitals, healing following up etc. what seems like a “simple return and do a mastectomy then” is what I just can’t don’t want to do. I don’t want to go to radiation every day for 4-6 weeks like I had to go to infectious diseases. I just want it gone. None of the doctors I’ve seen understand what I am saying they think I think its about survival and that I think  a matectomy is a guarantee I wont ever have to do anything else. That isn’t it. I think a mastectomy MIGHT be the answer to what PROBABLY COULD be  the best solution for now so that MMAYBE I won’t have to do more surgery later. Does this make any sense to anyone? So like the headline says….Am I being a drama queen ? Or are they not hearing me? Thanks for listening! Smackie

Hi @smackie   - I don’t think your being at all “Dramatic”, given everything you’ve already been through. Genuinely sounds like you are just wishing to “pre-empt” any possible further future breast surgery, “should” it be necessary after a lumpectomy. I’m not at all knowledgeable on DCIS though. And have to admit, have never heard of a Stage 0, but presume it’s that much lower a risk? 

I doubt the surgeons are often faced with such a request, their tendency being that of “preserve”, so likely a tough one for them. But that isn’t taking into account your previous history though, as you are, with the amount of operations you’ve already had, plus other health problems.

This is very different to you, but my neighbour was diagnosed with BC in one breast and asked for a Bi-lateral mastectomy, as she had the familial BC gene. She had to fight very hard for it, but found another surgeon who was prepared to carry it out.

What a difficult decision for you. There may be a good chance, with it being Stage 0, that you have the lumpectomy and don’t have any further problems, though. Have you thought to seek a second opinion from a different surgeon.

If it  truly is your wish to have an immediate mastectomy, I hope you are granted it.

I’m interested to know/hear how you go on, and wish you well with it all, Delly xXx

Hi there,

I totally empathise with your thoughts. I hope you can get reassurance as to what is best to do, and when. Have you got surgery scheduled? Would you benefit from 2nd opinion regarding options?

I’m due surgery tomorrow for DCIS 8cm, going to have lumpectomy as I’m fairly large breasted. I had similar in the other breast 8 years ago and lumpectomy and re excision plus radiotherapy and no sign of any recurrence. I too discussed mastectomy, my surgeon did say perhaps you’ve had enough and want to go down that road. I’m waiting genetic testing and if I’m positive probably will opt for mastectomy.

I was 52 with the first breast cancer, and the radiotherapy was straightforward and I went to work every day. I’m a bit more apprehensive now, maybe like you being in and out of hospitals takes its toll. I’ve read that some people only have 5 radiotherapy sessions, so maybe things have improved? 

I don’t know how I can help, but I’m here.