Forum Discussion

Meurig's avatar
Meurig
Member
1 month ago

Take 3

Today, I found that my second surgery, a lumpectomy revision had revealed further IDC and multiple DCIS , none of which showed up in scans, or were too small to show. I initially was checked 2 years ago with nipple changes, but mammogram and ultrasound were clear. This time there was a definate lump, but still no clear view on mammogram or ultrasound. Biopsy proved cancer present and my April Fool's Day gift was my diagnosis. I had my first lumpectomy at the end of April and lost my nipple, areola and a kiwi fruit sized bit of me. Pathology showed 7 tumours and a plethora of precancerous DCIS.  Revision 4 weeks later has revealed further tumours and DCIS and, since these didn't show up until pathology was reported, I was unaware, until today, that I must again have surgery. I have decided, when weighing options up, that mastectomy will remove any further " lurkers".

I am back onto the roller coaster of waiting for admission date and dealing with my head and an impending infection. 

How will I learn to trust screening in future? I had always been regularly to Breastscreen even after I passed upper age limit. I suppose I might live long enough for newer diagnostics, 80 next year....and now I need my routine colonoscopy due to family bowel cancer.

Just a wee bit morbid and muddled.xx

8 Replies

  • Mine was almost missed as dense breast with lots of lumps and bumps make it difficult to be sure. I had a biopsy for safe measure to what looked like a regular benign lump but ended up being malignant so I am thankful that the medical team took the safe road and ordered the biopsy.

    I had been told that it was best to remove the left breast with the Big C in it and I wasn’t sure if any c in the right side as waiting on pathology. I know I didn’t want to keep doing this over and over again so a double mastectomy was a no brainer for me. I know it’s not 100% but i felt more confident having a double mastectomy rather than leaving breast tissue and having multiple scans and biopsies for the rest of my life. 

  • Update, home fromhospital Wednesday after simple mastectomy on Monday.  Apart from my usual incredibly high BP (212/90? and being asked if I wanted every effort to rescucitate me, if things went pear shaped just as I sat waiting  for epidural anaesthetic prior to surgery (answer..**bleep** yes Im not finished yet), everthing went well. I was very confronted when I saw "bombsite" when I was changing at home and had a it of a melt down.,Next day I juggled my drain bags and had a lovely envigorating shower then put on my nice soft Berlei post op bra. I was more comortable, a bit warmer and less at risk of a single black eye !! Drains are behaving and may be removed on day 7. I don't  do painkillers, except for Paracetomol or Lyrica for my Fibromyalgia andonly have mild discomfort at drain tube site. Post Op review in 2 weeks and hopefully a treatment plan if required. I am so thankful for my treatment team at LRH Traralgon, who have been ultimately supportive of my journey. looking forward to healing (getting my prosthesis and new bras when ready) and returning to my mad hobbies including ridng my   Arab mare. We are joint ages of 79 + 24, so equally geriatric but feisty. Learning my new geography...no more sweaty cleavages..Bonus. 

  • Bugger! I am SO sorry to hear you need further surgery Meurig​  xx     Having a mastectomy this time really does make sense - as that puppy isn't doing you any favours!

    With your initial surgery removing the nipple & areola, I am surprised it wasn't Lobular - as it is particularly difficult to identify on Mammogram!   Mine was also missed by Breastscreen NSW (they even reviewed their scan after I'd told them they missed it and they STILL missed it again!)  I also wonder how many years previously that they'd ALSO missed it!   grrr. (My GP found it just months after the missed mammogram!)

    You will not go back to Breastscreen. I live regionally & now go 100k for my yearly mammogram/ultrasound with a specialist BC ultrasound lady (I will be sorry when she retires!) as I have little trust in the locals now, as they missed it too - but at least they suggested a biopsy 'just in case' ....  which identified it!

    Mine was ILC & it was directly under the nipple.  My surgeon was able to lift the nipple & remove the lesions underneath & reattach the nipple, after moving some breast tissue fat around to 'fill the hole'.

    Have you decided whether to have reconstruction or not?  A straight up mastectomy is (I understand) easier to recover from that both a lumpectomy and reconstruction.  You could also ask for an 'aesthetic' (TIDY) closure ... maybe join both the Reconstruction Group AND the 'Flat Chat' group .... I am sure they have before & after pics & could help you in your decision making xx

    oh dear - don't we all love colonoscopies?  NOT!!  All the best with that one too xx

    take care

    • Meurig's avatar
      Meurig
      Member

      thankyou for your supportive reply. Only my biopsy and the post op pathology showed IDC and DCIS. Scans, mammogram, ultrasound and even contrast MRI didn't  show the little suckers, No guarantee there weren't more,  so mastectomy " with no frills" planned. At neary 80 I dont give a cracker for aesthetics' just hope I'm not too lop sded when I'm back riding my horse.:)

      • arpie's avatar
        arpie
        Member

        Well done Meurig​

        That is TERRIFIC that you are still riding your horse xx. I always tell members to live their life to the fullest, doing things they love doing!!

        I'm 73 now & have just returned from a kayak fishing trip to the Montebello Islands .... 13hr boat trip offshore from Exmouth, WA!!  I was the 2nd oldest on board & was sweetly called 'Super Nan' - as they were surprised I kept up with them & I also landed lots of fish & got busted off too and had other exciting adventures too!! Hehe I've put my name down for next year too, so long as I am up to it!! 

        Hmmm .... with you (almost) having had 3 surgeries - are they absolutely SURE that you DON'T have BC in the other breast?  Given the number of tumours you had & that you had both types in the one breast .... maybe ask them about a preventative double mastectomy (if you are up to it)?  Then, it is only the one surgery (to prevent the need of another 'possible one' further down the line - specially given the lack ability to identify the original ones! )

        Then - you wouldn't be lopsided either ..... 😉

        By going 'no frills' (which is what I would do too!) definitely ask for an "Aesthetic Flat Closure" (similar to a female losing her breast to a gender change.)

        You have a lot to think about .... but make the decision that WORKS FOR YOU xx