High grade DCIS with small foci of IDC - similar experiences?

I am really sorry to read about your diagnosis. The last thing you want to hear is that you are a 'complex case'.

I was not a complex case but had both IDC and DCIS. The DCIS was only picked up after surgery, or at least that was the first time any mention was made about it to me. The size was evaluated as follows: "grade 2 IDC measuring 12mm and associated DCIS making the total area of disease 22mm".

I didn't have any issues with my lymph nodes on the ultrasound (didn't have an MRI) and all my sentinel nodes were clear after surgery (I had 3 removed).

Really good luck with your treatment, and make the right decision for you. Second opinions are always an option if you are struggling.

Hi tumblebee, thank you for your reply. It seems my biggest area is DCIS, so I was really wondering how that would work in terms of staging due to size. There is so much thrown our way in terms of technical terms and information, that I always seem to think of additional questions after I have met the consultant. I am going through second opinion, ergo the additional scan today. But there should not be any more tests for me after today. Just waiting for genetic test results. And then hopefully no more delays to take this unwelcome visitor out! 

How are you coping following your surgery/treatment? And may I please ask at what point in your journey were you assigned a special breast nurse? 

Thanks and big hugs! 

1. Hello NeedingHope,  As I was reading your post it brought me back to my own situation only thing is I was 72 when diagnosed.  Started out as a DCIS in right breast picked up as microcalcifications on screening mammogram.  No lumps felt in either breast.  Plan was a lumpectomy and radiation and hormone treatment as Estrogen and progesterone positive.  I was ready for it.  Just for precaution Surgeon ordered bilateral ultrasound and MRI.  US was negative but MRI showed another small area in right and 2 small spots on left breast.  This is when Surgeon called me a complex case and I felt like you, I sank inside.  MRI biopsy couldn’t be done so off to surgery for biopsy.  It was Stage 1 invasive cancer  (3mm tumor with 6mmDCIS).  So margins were all clear but now I was looking at another lumpectomy on right side and radiation to both breasts.  I felt like such a lost soul as I didn’t want all that radiation.  My surgeon was patient with me because I was thinking of  having nipple sparing mastectomy and then reconstruction.  It took me a visit to radiation oncologist and then thinking about everything before I finally was able to make s decision that seemed right for me.  Considered all the facts and finally was able to get my emotions to quiet down.  Was so hard do I know what you are going through right now.  
   They don’t need to check lymph nodes for DCIS and surgeon opted not to do sentinel lymph node biopsy on left as early stage BC but radiation oncologist did radiate my very low lymph nodes on left breast.  
   Had sleepless nights too but finally felt so much better once I had decided what to do for treatment.  
   I did make it through and had my first mammogram in August and saw surgeon too.  All is good and you will get through this hard time too.  Don’t be hard on yourself and just ask lots of questions.  Each of us need to do what is right for us.  It was s good thing cancer was caught early for me as I am a small breasted lady and maybe would not have had a choice if I had not had mammogram.
   
   Sorry I went on and on.  Take care
2. Barbara

Hi Barbara,

Thank you for sharing your story! It does have so many resemblances! I am now due to go back for MRI biopsy (if that can go ahead due to position/size of breast!). I have always been a strong believer that things happen for a reason, even if we do not get to understand them. Of course, I wouldn’t wish this on anybody. But it made me smile for a moment that “NeedingHope” was brought a bit of light by “HopefulBarbs”! So thank you! Hopefully in a year time, I can change my name to “GivingHope”! Right now it is tough and an emotional rollercoaster. And I still do not know what will come next. Today I was so cranky - but I consider it an improvement compared to a sobbing wreck. I was supposed to go to Florida on holiday in 2 weeks time and then start another round of IVF after some relax! Oh well, IVF is out of the picture (it was already coming to that, so easier to accept)… but I am so keen to keep my life as normal as possible… possibly for a loooong time! Wishful thinking, maybe sooner than expected, I could be on that plane to Florida! Need to remain positive and hopeful.

Big hugs

I am doing ok at the moment. I had my surgery (lumpectomy and sentinel lymph removal) in May, and my radiotherapy in August. Waiting for the different stages of the treatment seemed to take forever, but looking back it all happened really quickly. I'm just working through the mental aspects of my treatment now and getting used to my 'new normal'. I've healed really nicely though, and though I have scars they really do not bother me at all and seem to be fading more and more each week.

I was assigned my BC nurse when I got my diagnosis. 

I hope your 2nd opinion helped and really good luck with your treatment.

Hi NeedingHope
Sorry you find yourself here, not nice to be diagnosed obviously - especially when due to be on holiday and your IVF treatment, but I am glad you have found this forum
Hopefully, I can provide you with some of that hope that you're needing!

I didn't have small foci IDC.  I did have a 15mm grade 2 IDC ER/PR+, HER2- (same as you), but I had 2 x separate areas of high grade DCIS totalling 54mm ER/PR and HER2 all negative.  I had automatically assumed that my DCIS had become my IDC, but this obviously wasn't the case as it was different.  I wasn't really told much at the time of diagnosis tbh (and only found out the different type of DCIS, by paying for my medical records a year after diagnosis as I was curious) - I was just told by the surgeon I saw that "it looks as though we can do a WLE/lumpectomy as you're big enough, so we should be able to save your breast".  I hadn't even contemplated losing my breast!  I was extremely naive at that time I think - so it came as a bit of a shock when she said that.

I had 80mm removed and have a dent in my breast in that area, but it doesn't even notice when I am in a swimming costume or a bra. My  sentinel lymph nodes were removed during surgery, tested and no spread.  I didn't have an MRI.

I had 15 sessions of radiotherapy and tablets for ER+ at aged 51 and just post menopause I had Anastrozole.  I wonder if you will be given tamoxifen due to the fact that you are clearly younger.

I have now finished my 5 years of tablets (August this year) and am now back to having a mammogram every 3 years, so hopefully that will give you the hope you are looking for  ).  Things have progressed more with treatments improving just in the 5 years since I was diagnosed, so that's good news for you too!

With regards pushing for a mastectomy, I would say - trust your team.  They will deal with so, so many ladies with breast cancer and they have seen it all before and they WILL know (via team meetings to discuss your case in particular) what is the best course of action for you.  Don't push for something out of fear at this stage, because I know I was convinced that I wasn't going to last long!! I think we all have this fear when we hear the word cancer - but as time went on I found so many people I know that had had breast and other types of cancer previously and I wouldn't have had a clue had I not been diagnosed.  They are all happily getting on with their lives (as am I now). The first clear mammogram was a major shift in confidence for me.

Hope this helps a little.

Best wishes, Lesley 

Thank you Lesley, you have really given me some much needed hope! I am so grateful to have found this forum and so many supportive ladies! You are right, I need to trust I am in safe hands and follow their suggestion and avoid making any decisions just out of fear! That’s great advice. I think I really needed to hear that. The doctors are really not leaving anything to chance. It is just a constant worry as at every turn, they seem to find something new. So who knows, after surgery the so called small foci could be way more than that. Anyway, I am coming to terms with the fact that I have no control over this (I am a control freak by nature) and need to take a day at a time. Yes, I will defo be on tamoxifen after surgery for 5 or 10 years. Chemo is not excluded. I understand it is unlikely, but it will only be confirmed after pathology report post surgery. Ah, if only I could move fast forward! 

Big hugs. Xx

Thank you Tumblebee and glad to hear you are doing ok at the moment. Please do reach out to me if you ever need to rant or vent or simply talk about adjusting to your new normal at any time.

Second opinion was really helpful and I have decided to go ahead with this new consultant/hospital. Only downside I have not been assigned a BC nurse yet, and my previous one at the other clinic was a real star.    

Hello tumblebee,  Good that you are done with surgery and radiation.  Are you now on hormone treatment?  
Regarding the scars,  you can use scar gels and they really help to fade and smooth them out.  Have been using them once I got the ok after radiation and scars look nice.  Hubby had fractured clavicle repair and then screws and pins removed so he is doing it too.  
You are now in another phase of breast cancer and it takes getting used to it.  Seems you are alone now as no appointments etc but we are all here for you.  Some get to where you are quicker as may need less treatment,  all depends.  
Take care of yourself.

Barbara

Oh Leslie you are a champion.  The part about trusting your surgeon really resonated with me. My surgeon had wanted to do lumpectomies on both breasts but I would not do it.  I knew that I had DCIS in right one but since they couldn’t do MRI biopsy on left I had to have surgical biopsy on left.  Told surgeon I wanted to know what I had in left breast first before making decision.  I was a wreck and only had biopsy done and it was stage 1 (3mm tumor with 6mm DCIS).  Clear margins so that was good .  Make a long story short.  Could have had both surgeries done at once snd got on with radiation and wish I had done that but my emotions were running wild.  Glad surgeon was patient with me because I had talked about bilateral mastectomies as I would not need both breasts radiated. But feeling good now and very thankful for wonderful caring surgeons and all the team. 
Barbara