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Blister's avatar
Blister
Member
5 years ago

It’s Just DCIS, the words of the BCN leaving me feeling like a fraud

It’s like 3 in the morning and as usual the words the BCN has said to me more than once has left me feeling like I’m a fraud and I don’t have the right to say I had breast cancer.  Yes I know it could have been a lot worse, while going through this process my surgeon was pushing as long as the cancer had not got of the duct it was just DCIS, then the pathology came back and she told me that it was a 3cm with 3 areas of micro invasion, the results also show they’re double negative and high grade.  I needed to go back in for my surgery.  

I call my BCN as she told me to so she could go over the results again with me, it’s just DCIS don’t worry about the micro invasion it’s not like there’s a lot it’s just DCIS, so now I’m confused the surgeon is pushing for more tests, so MRI shows another 1.5cm area that was missed in the lumpectomy, sentinel node and other nodes are clear.  But my surgeon has decided she still wants to take the sentinel node, after discussion it is decided that I will have a SMX and SNB, everyone supports my decision, well almost.  Was told not to see a plastic surgeon just yet as I would more than likely still need radiation.

well good news results came back they got it all, she was finally happy with the margins.  We all got together and it’s decided no one wants to see you no further treatment no oncologist (she did tell me at first appt that cancer is over treated), drainage good, it can be removed see you in 6 months.  My husband asked me to speak to the BCN as he was concerned that they had changed there minds on radiation, so I called was, the answer if want to waste your money and go see someone you can it’s just DCIS, says the BCN

Since then if I’ve had an issue something wasn’t settling down, pain I would call, I had such bad pain under my scar area was struggling to wear the post surgery bra, so call my BCN it was just DCIS massage the area, you could come in and we can have a look at it if it doesn’t settle, but it’s normal.  

Anyway spoke to my GP was sent for X-ray then CT scan, turns out the pain is being caused from my ligaments the soft connective part of my ribs are calcifying on that side so it causes pain with pressure.

I don’t bother calling with concerns the few times I did was enough, as getting a response at times took days and a couple attempts to reach out.

 over 3 months later and I haven’t been and got fitted for a bra and prosthesis because of swelling that flares up on my side where the drain was swells still and gets very tender and having something on there is to much at times I feel like I have a golf ball size swelling in my armpit, but I keep on massaging.

Has anyone else had this experience, I was told I had breast cancer but I don’t say it  as I feel like a fraud for saying it as the words of my BCN keeps coming back at me “It’s just DCIS”.  
dcis

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  • iserbrown's avatar
    iserbrown
    Member
    5 years ago
    @Blister
    Talk to your GP and perhaps get the 5 visits to a Physio with the view for an assessment and treatment for lymphatic drainage massage.  It sounds like the after affects of surgery.   The BCN has moved on to other patients by the sounds of it!
    I suffer pain in the sternum near on 6 years later.  When it starts I head to Physio. 
    I presently use my 5 visits for an Exercise Physiologist through a cancer program.
    Hope this suggestion is of help!
    Take care 
  • AllyJay's avatar
    AllyJay
    Member
    5 years ago
    Hi there @Blister...I'm so sorry that you feel that the medical profession have more or less "flipped you off". From my understanding, there's no such thing as being "a little bit pregnant"...that is, only six weeks or so. If a woman loses that pregnancy, it's just as devastating as losing the baby at say seven months. You're either pregnant, or you're not...there is no grey area. Whatever the scientific distinction in the professional mind, a person's perception or their understanding of a situation, is their own reality. If a person told me I have Ductal Carcinoma In Situ..then I would read it thus  Ductal...in the duct...Carcinoma....latin for cancer...In..in...Situ...position. So, cancer within the duct. Cancer, not sort of cancer....cancer, (with micro invasion). Each person, both female and male, who develops ductal cell carcinoma (so the full monty), has it starting within the duct, then breaking free of the confines of the duct, and into the surrounding tissue and then on into the nodes and so forth. Medical people are very inclined to brush off conditions when in their view, it's almost insignificant as they have seen and treated patients in a far more advanced state. Is a person who has had one toe amputated any less of an "amputee" than a person who had the whole leg amputated? And it this person with one leg amputated less of an amputee than another person who lost both legs? Rubbish...each affected person has a right to their fear and concern about their own condition. Yes, you were fortunate in that your cancer was found and treated early, but the Grim Reaper did come knocking at your door. You have every right to feel that you have been heard and your concerns and worries regarding the completeness of their cure by your treating team fully explained and laid to rest. If you still feel that they have been, or still are, dismissive to the point of making you feel, as you have said, "a fraud", then if I were you, I'd seek a second opinion. You have to sleep with that breast, they don't. You have to live with the fear, they don't. As an addition to your post, you mention the other pain in your rib area. I too have had costochondritis, which is where the rib joins the sternum and there is inflammation or calcification. (The one generally causes the other). It is very painful and debilitating and causes pain with each breath...I understand and send you a hug. You are not a fraud, you are a woman with fear...I hear you.