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

Blister

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”.  

AllyJay

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.

Blister

Dear @AllyJay thank you 

iserbrown

@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 

Blister

@iserbrown the BCN told me I only had Sentinel Node Biopsy and I won’t get lymphedema, will speak to my GP

Blister

@iserbrown also meant to say thank you for the advice

Afraser

You may not get lymphoedema with only a sentinel node removed but you could have a seroma (fluid accumulation). Massage can certainly help it dissipate but if it persists/ gets larger, it may need assistance. Lymphatic massage can help or aspiration (removing the fluid by needle). Best wishes. 

TonyaM

Hi @Blister,
I’m with Afraser,it might be a seroma that needs syringing off.Your breast surgeon would be the one to see. 

Cancer is cancer- Gee your bc nurse sounds flippant. Perhaps she was just trying to reassure you that you had the ‘lesser of a worry’type of bc. BUT that’s not so reassuring when you had to lose a breast because of it! You certainly shouldn’t feel like a fraud- you are in the trenches with all of us who have lost a breast and don’t allow that bc nurse to minimize your experience or ongoing issues.Perhaps see your GP or surgeon and later down the track(when you feel less vulnerable) you could write this nurse a heartfelt letter? As a registered nurse of 40yrs+, I never minimized any complaint because if you do,that person may be reluctant to tell you about a real serious problem.
Big hug xx

brightspace

Sorry your BCN is using old school terminology ! 
DCIS is never to be underestimated
Lots of new info out there
Yes it is a cancer
Generally most patients told its stage O
But it can progress 
Always speak to oncologist
For some unlucky ones ...like me it can progress 
All the best
 bright the in hope

FLClover

It’s definitely cancer, and you’re not by any means a fraud. You’ve had surgery, that’s that. I think she’s trying to make you feel better, so you don’t stress so much since it is cancer, but at the earliest stage. When someone tells you you have bc, you of course start to stress and panic. I’m thinking she’s just joking you will avoid all that as it’s unnecessary. That doesn’t change the fact that it is cancer, and you had surgery and have to now deal with the consequences of it. So you’re definitely entitled to feeling worried and scared, and to check up on yourself. 

Good luck with the painful area, I hope it settles ♥️

Blister

@AllyJay @iserbrown @Afraser @TonyaM @brightspace @FLClover  Thanks everyone, I’ve just been tired, the swelling and the pain gets me down.  I know I don’t really have a right to, but I truly thought I would be better and getting back to normal especially as I was lucky not to have treatment.  I think I just became a little confused and upset that I was told to contact her if I had any issues or questions, to only be brushed aside.

I’m going to see my GP if things don’t settle down by the end of the week it has gone on long enough and the not sleeping because of it I think is contributing to my mental health.

thanks again for everyone’s kind words and support.

FLClover

@Blister omg sorry, I meant ‘hoping’, not ‘joking’!! This autocorrect is a joke 🙄. 

I think you need to find yourself a new BCN. This one doesn’t sound so helpful, and seems to be downplaying all your concerns and issues. You’ve had pain for too long now. As the ladies said, it sounds like a seroma. You shouldn’t have to suffer and be sleepless because of it. Pls contact your GP asap so it can be checked properly and taken care of. Pain hinders the body from healing, and also impacts mental health. Cancer or not, you shouldn’t have to tolerate it ♥️

Blossom1961

She sounds like a cow. Bypass her and go to the BCNA helpline. Some people need to change their profession. EVERY cancer is challenging and NEVER let anyone demean you for the awful toll it takes.

BlackWidow

Hello @Blister, the ladies above have said it all - that c-word in the middle also says it all, you were just more fortunate than others in that it was caught early and the blighter had not escaped.  You are still having some sort of treatment not given lightly.  I had extensive high grade DCIS and my GP said "it is not cancer, it won't kill you" and to reassure me that chemo would not be required.  DCIS is like any other, it can reappear, we are never totally free and clear.  Lymphedema is a rotter, it comes for a visit, often the body's way of complaining about being fiddled with.  Please visit your GP as soon as possible, don't wait.  As for the BCN, like in all vocations some people are not made for the jobs they have - put her out of your mind as thinking about it will just upset you.  All the best.  

Blister

@averi thank you for the information, but I’m not struggling with the diagnosis, I’m struggling with the after care.  Maybe my expectations were to high, I truly thought once the drain came out and I healed that things would be so much better, I would go buy new bras and get on with my life.  

I couldn’t understand why I was getting the severe pain in my ribs, swelling going up and down.  I just wanted get on with it

I might get my family to read it might cover some things I may not have explained properly 

Afraser

I can sympathise - I had a remarkably persistent seroma and could not wear a proper prosthesis for - well, a long time. Impossible to fit as my breast area was going up and down like a whoopee cushion. I sloshed when I bent over! All the more reason to get it seen to, if that’s what’s causing the discomfort. With hindsight, I should have been more insistent. As it turned out, it was probably never going to go away by itself, although the vast majority do. I didn’t use lymphoedema massage until very late and that made a really big difference. Best wishes for a quick resolution.