Further to my earlier post

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bexybexy
bexybexy Member Posts: 151
edited June 2014 in DCIS (Ductal Carcinoma In Situ)
I had DCIS last year and underwent a mastectomy on my right breast and DIEP reconstruction. All going ok. Am due to see my mastectomy surgeon tonight just as a routine check-up and also so we can start arranging monitering of my left breast. His plan is for me to go either yearly or six monthly for an ultrasound, as due to my age 35 he says that is more advisable than mammo.

He is a great man but very blase I know he doesn't mean to be he just has a very relaxed manner which sometimes stresses me out lol! He keeps saying with regards to the reconstructed breast "that's fine now no need to worry about that" by I know that crazy as it may sound to others there is still a realistic chance of recurrence there. I know the odds are not high but there are still odds. So I am going to say to him that I want both breasts monitored but am just worried he will say there is no need. Even my mum seemed incredulous when I mentioned about monitoring this breast and just looked at it and said "but you've had a mastectomy!"

Advice needed please as I feel it is not appropriate to just "forget" about this breast it is still a breast in my mind and stray cells could still have escaped and gone to the chest wall so am I alone in thinking it still needs caution? Thankyou!

Further to this saw the surgeon today. Came out feeling more confused than ever it's his jovial manner it is really starting to grate now! He felt the recon breast and said lumps and bumps are to be expected after surgery. Then he said "oh we will definately keep an eye on it though" in an almost serious manner (for him). I thought well is it a problem or not?? My mum then said what I was worried about -about the recurrence and he really pooh-poohed it and said "that won't happen and it was non invasive" almost in a what on earth are you stressing about tone. He said ultrasounds would be no good for me as they only concentrate on a small area and mammograms are better as they give the whole picture and if I am wanting to check for anything that is the way to go. However I am only 35 and he said that wouldn't be an issue as I am sort of on the baseline. Thing is he then said it would be every year for 5 years and then every 2-3 years but I would prefer it every year. Him (and my mum) acted like I was being paranoid and they both said about the unnecessary radiation. I don't know if they are hearing this I have already had cancer lol!!

I just don't want to be one of those few unlucky people who fall in that 2% category of recurrence!!! I hate having these little lumps on my new breast - lumps were what caused all this anxiety in the first place! It is harder for me with the recon breast as not sure what lump is what my new breast feels alien to me so yet it is probably scar tissue etc but just scares me how I would decipher any new lumps and whether a mammogram is going to be effective or will it bring up unnecessary scares? would really love some feedback from a few people if possible particuarly Beesie cos feel sick with worry now and wondering if I am going mad!!

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  • J9W
    J9W Member Posts: 395
    edited April 2012

    B,  I completely understand your concerns because I too have them.  I had my mastectomy for DCIS in September 2009, right side also and agree that it's a weird feeling. Well, last June I happened to notice a lump on my foob and had an appointment with my ONC a week later so had him check it out. He said it was nothing unusual.  Well, to me it was new so I was still worried. A few months later I saw my BS and she too said my new lumps on my foob were nothing. I have a whole lot more of them now - some are good size and some are tiny - I was told that it's scar tissue coming on.  Regardless, it's still a freaky feeling both physically and emotionally. And, I agree with you in wondering how I can decipher what's a problem lump as opposed to a scar tissue lump (especially since they all feel differently).

    Are you going mad, you ask? Of course! I am too. It's crazy to have all these people tell us 'it's nothing' but it was a lump (or calcification -which is smaller than a lump) that led me to have my breast cut off.  Geez, no wonder we feel like we are going crazy.

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  • bexybexy
    bexybexy Member Posts: 151
    edited April 2012

    Thankyou for responding and I am actually so glad I am not alone! Although I am sorry that you are going through the same emotional turmoil as me it really is a horrible feeling! I know if I found a lump on my other breast people wouldn't treat me as if I was mad and take me seriously but a lump is still a lump and to me it has such negative feelings associated with it! People talk a lot on these boards about DCIS being just diagnosed etc and then throughout surgery but I struggle to find topics on people living with reconstruction worries like this. I would love to just think "oh well I have had a mastectomy there is no chance of it coming back" and my surgeon seemed incredulous that I would think that and made a point of saying that is very unlikely particularly as yours was non-invasive. However I have read people on these boards having recurrence.

    One thing that does concern me is he said I would have mammograms for both breasts. I can understand not having ultrasound as they want to see the whole picture when scanning my breasts as an ultrasound doesn't do that. However I am 35 and have always thought a mammo would be no good for someone my age and that it may bring up lots of false alarms. Also didn't think a reconstructed breast could be subjected to mammogram. Does anyone have any clarification on this?

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