Emotional side of DCIS/mastectomy

Dymphna - so sorry you have to join our ranks and hoping daily it gets easier for you with the help of these wonderful ladies. Also is horrible you having to face this at the time you thought you would not have to face it, I can so relate on so many levels, hate when the odds are so great that it won't be you but then is you! Been there done that and hate it!



But as said, when you take the reins and start your plan of action it gets better.



For me, bc hasn't been the worse thing in my life, either time. Worse is the loss of my husband at 43, or now facing the loss of my dad who I just returned from visiting in hospice.



Still a challenge but worth fighting!



Big hugs



Catie

I had Savi radiatiation - if you have any questions, please dont hesitate to msg me - happy to talk to you.

Itll be a year since my surgery in about 10days - all I can say is it gets better and you will put it behind you..... its hard to see it now, but youll get thru this.  Im glad you have a caring husband!  There is a thread called THE CONNECTION OF CANCER AND TROUBLED/ADDICTED LOVED ONES that Im in - some really great women discussing stress/cancer.  Helps me to keep dedicated and grateful - letting go of things that contribute to stress that definitely have an effect on my well being.  Hang in there.......the worst is over - the not knowing......

dymphna, you've had a great deal of heartache, and stress to deal with.

I am so pleased that you've had a good result with the node, and that after getting clear margins you'll be able to go forward.

Please let us know how you are doing!

Hi dymphna,

There are many reasons why many of us opted for the Mx. I can only speak for me, and my reasons were more to do with dodging Radiotherapy. I also had an immediate reaction to the Dx of "Get it Off". I had also seen many women have to go back to get clear margins with lumpectomy, so I figured this was the right choice for me, and I haven't a single regret.

My husband is in a wheelchair, and because of where we live, I would have had to travel over three hours each way for treatment, or stay in the area where the Radiation was available, 5 days a week for 6 weeks. I had no desire to do that.

I can tell you that I was terrified, before my surgery. I knew I had DCIS, but there is always a chance that there could be something else lurking in there. I have a good understanding of DCIS now, mine was Intermediate and High grade, just over 1cm.

When I finally got my pathology after the Mx, my surgeon told me that I was effectively cured, that it was pure DCIS, and it was all removed with the breast. I managed to dodge the Tamox, and the Rads.

I know what you mean when you ask all those questions about the severity of the treatment for DCIS. No you're not lucky to have been Dx with DCIS, but what you're being told is quite right DCIS won't spread and having the biopsies is the only definitive way to know what is actually in there. It is what can come next, and no one knows which DCIS is going to eventually morph into something worse.

I am sure there will be others along to give you their perspective. Just know that you've done the right thing for you. We all have our own reasons for our decisions on surgery.

Take care, and I wish you all the best for the future!

Everyone is different.  I dont think there are right or wrong decisions.  You do what lets you sleep at night.  My sister is a nurse and she kept telling me to just cut them off.  For a lesion that was the size of 1/2 pea?  Hmmm.  My Rad Onc was my friends sister and one time I called her after my surgery and asked her what she would tell me to do if I were her sister - she told me off the record if it happened to her, shed have a double MX.  But that she realized in MY case that it would be drastic and not needed, but because of the work she does, that is what would make her chose to have a MX.  

I didnt want to lose my breast(s).  Im young and after talking to my BS, she assured me that LX was a good option for me as long as the margins were clear.  Im not taking any drugs because I had severe SEs from the one they put me on - so I see a naturopath, get regular screenings, changed my diet, exercise - and I sleep pretty good at night.  Its been a year since my dx - Im very grateful.  

Dymphna - I am writing this before reading what others have said, so if I am repeating, so sorry! I am one of those that lightening has struck twice but about 17 years apart. I chose lumpectomy the first time, did the chemo and rads and then went on with my life. I knew I had done all that I could and in between I was blessed with another wonderful 17 years in which I became a grandmother of not one, but eight beautiful granddaughters and one grandson. I was a single mother of 3 sons and 1 daughter when I was first diagnosed as my husband had died 4 years earlier at the age of 43.



2 years after my cancer journey I met and married a wonderful man who not only took me but my children and eventually grand children into his heart and his wallet! Treating all of my children as they were his own and walking my daughter down the aisle. Yes, going each time to the MO and mammos was a challenge, (freak out just the week of the mammo- b/c I never expected the first dx) but basically lived a very nice life with lots of positive things happening to me. The farther I got out from the original dx, the less I thought about it daily until it was almost only around the time I had to go for check ups that I gave it any thought. I did everything and anything thing my MO told me to do. I had faith in his expertise and trusted my medical team. Eventually I stopped going to the MO - after over 12 years - and thought I was home free. 5 years later I was dx again, other breast, new cancer, DCIS, high grade, non receptive and less than 1mm invasive which makes it stage 1 or IDC just because of that 1mm. I was at a different stage in life, had been there done that with rads and chemo and now it made sense to do the bmx with natural breast recon. Then it did not. I would not have changed a thing about what I did then or what I did now. It just made sense to me now to do something more drastic to reduce my chance of having the DCIS get out of hand or in the other breast. YOU have to do what YOU need to do, based on research, experience, lifestyle and what you will be comfortable with. And, hoping you do! Hugs
(BTW - all the edits and deletes are because I must have been too wordy (go figure? LOL) and parts didn't make the submitting - so sorry about that - this final post is basically it in a nutshell)





Catie



BTW I have autocorrect and do you have any idea how many times my fingers have almost signed off as "Jugs" Catie?????? Appropriate - NOT!

Part 3 - so sorry to do this, must be a limit on thoughts/words!!!! LOL

The other parts do not make sense without this addition or would just delete them all!

Dymphna : Part 2 - somehow it didn't make the translation, so edited to put the original here:

>I was diagnosed for the second time almost the same time my dad was dx with his 5th melanoma (and no I am not BRCA +) for bc in the other breast. Not a recurrence but a new DCIS. High grade, with <1mm of invasive - which makes it stage 1. Mammon have gotten so good now that they pick up microcalcifications and that is what happened to me. A thickening of my breast the year before and the calcifications on the mammo that lead to the stereotactic biopsy and dx in 2012. My choice for bmx was almost easy. If I had another lumpectomy I would have to have rads again. I had them on the right side of my chest, and did not want them on the left. Simple - I'd been there and had done that. I chose bmx with immediate natural breast SGAP recon after a snb showed no nodes involved.

Not to say any of my story would be your story but to tell you that each of us does things that work for us. If I read about someone else who chose implants that wouldn't make me feel bad that I didn't, nor would it make me feel better than them. For me I felt my decision was the best one just for me!

I don't regret having the lumpectomy years ago. It was right for me at the time. I would do it all over exactly like I did - even though I have been 'struck by lightening with bc' twice. The tag lines at the bottom only serve to show you what our journey has been and to sort of paint a picture of what our journey brought us to.

I wish you the best in your journey - knowing that your decision will be the best decision you can make knowing all you know about what makes YOU the YOU you are!!!!

>Hugs

Caie

I'm apologizing in advance because I am not sure where to post this.



I was diagnosed again with breast again on 6/19/13 with DCIS. I had SNB on June 21,2013 and it was negative...much to my relief. I am now seeing the plastic surgeon on July 9th for consultation and will be scheduled to have a bilateral mastectomy with immediate reconstruction.



Initially I had just had breast MRI one week prior to all this and an ultrasound, mammogram as well as ultrasound needle core biopsy was ordered. Needless to say I was petrified. When the results came back on the 19th I was a mess. I had already scheduled an appointment with my breast surgeon about having a mastectomy and the results that she gave me in the office only confirmed my decision to go ahead with this surgery.



I have been so tired of waiting for the other shoe to drop...and it did. I want to experience the freedom from worrying all the time about breast cancer. Of course I realize that it is not 100 percent, but the anxiety from all the scans, mammograms, tumor, follow up doctor appointments leaves me feeling anxious all the time. Mentally I'm tired, but feel like I'm in a good place now because I am going to do this. I have the full support from my wonderful husband and of course my breast surgeon.



I just needed to vent and also if you ladies have any opinions or suggestions I do welcome them. Thank you in advance.

Sorry to hear this.  Be thankful you have some great medical care and loving support from family.  Keep us posted and take care of yourself.....

Oh Catie, thank you so much for understanding. It means more than you know. I trust my breast surgeon completely, and she referred me to the plastic surgeon that works alongside her. I have an appointment with him on July 9th and hopefully this surgery will be scheduled soon. I want immediate reconstruction and my breast doctor is aware of this.

I have been online for hours with searching and researching various options available to me. I am 58 years old, but very youthful mentally, and I wish I would have done this the first time. I wanted too, but my sweet mother talked me out of it...she felt that it would make you "less of a woman". But like my husband says to me that he didn't marry my breasts, he married me. He is such a sweetie pie!

I too thought I was over this, but it's funny how I came to my decision to have bilateral mastectomies. I had gone for my usual breast MRI and felt it was different this time. They would normally ask me if I wanted a copy of the CD just for my own personal records, but this time they didn't. Prior to all this I had made a phone call to my breast surgeon and told her I wanted to have the mastectomies and she was in agreement with my decision. I only called to let the office know that I was having the MRI and to look out for the results.

I came into her office to discuss the mastectomy, but she made a poop-poop face at me and I made one back. Then that is when she dropped the bomb and told me I had DCIS, but it was early stage. I just couldn't believe it. This past Friday I had a SNB which was negative...thank God. Needless to say this has been a whirlwind. I have cried, but now I am in fighting mode.

I will post what is going on, and once again thank you for your encouraging words! They mean so much

Having DCIS is tougher than people realise, and it messes with your emotions so much. Yes we are lucky to escape awful chemo, but somehow something doesn't match up.

Having chemo/ radiation almost justifys having a mastectomy...one equals the other.

At times I have struggled to accept my mastectomy and recon, logically you know exactly why you need it and how necessary it is, but in reality it is hard to accept and digest.

Not having one day of sickness or ill health, yet we have major surgery to remove our breasts. Such sudden unexpected and hugely emotional surgery, no time to process properly or get counselling.

I went to a support group to try find a connection and support in my emotional struggle. I sat next to a woman with stage 4 cancer who won't survive. I couldn't get out quick enough. I didnt feel justified being there. What on earth did I have to complain about!! However, I am totally justified in my struggle.

There almost needs to be a support group for DCIS ladies only, where you can grieve your loss, and genuinely be allowed to feel equal in the struggle. Our loss is very genuine, chemo or no chemo, having a mastectomy is a massive deal.

The reality is, there is a different experience and emotional response when it comes DCIS, and those with invasive cancer needing chemo.

I keep reminding myself, my DCIS was stage 3 and wide spread, left untreated, at 43 I would need chemo and might die.

DCIS is a tough gig, people don't get it. Because we look so well and healthy, people think we don't need support and reassurance. We're the lucky ones.

I still have to remind my hubby that I need reassurance and emotional support. All my friends think my journey is a closed book, fully recovered and emotionally healed after 12 weeks. To them having my implants in meant I was all good!



Hang in there, big hug. We get it.

Well said. People don't get it.

Yes, well said.  What many of us are going through!  What folks don't realize is that DCIS when aggressive (grade 3 and all those other fancy words) can evolve into invasive.  Do they want us to wait until it's invasive to do something about it????   I hate that all these articles have come out stating that DCIS isn't really cancer.  Really-- what part of carcinoma isn't cancer??  where do they really have studies that show if left untouched, nothing will happen. What percentage of women is that exactly.  Why would a women want to the live the fear of "what if".  Same difference of what Anglie Jolie did --- she might or might not have gotten breast cancer and had a double mastectomy!  now wants her ovaries removed, but wait, let me have one more kid first!   how do you think those that HAVE to have their ovaries removed and would like just one kid???

Sorry to go on a rant here, but I so agree that there should be a support group for early caught cancers.  AND, i wish there was one for unilateral mastectomy!  most women now have bi lateral but the uni has it's own issues, --- like trying to get the symmetry and trying to find clothes and bras that fit right.  Or facing yet another surgery to exhange the implant and have the native breast lifted again. 

Thanks for letting me vent. It's been one of those days....

Overall ... just happy that the cancer or yet to be invasive cancer is out of me and I am alive and well!

Cheers...judy

Hi, butterfleyez -- where are you having your flap surgery done?  There are some folks with flap reconstruction in the reconstruction forum.  There are threads for the different kinds of flap procedures and for different surgeons also.  It is quite a process but it's doable too.  Our bodies are strong.  I had my BMX and hip-flap reconstructive surgeries in June and Oct of last year, and I am feeling strong and almost back to full strength.  I hope your treatment path will be smooth and quick!

Arm strength took a while and I had signs of early lymphedema from the snb. Ask your surgeons what they think about marking the sentinel nodes during BMX but only taking them later if an invasive component is found in the pathology report. With pure DCIS, there should be no node involvement. Taking the sentinel node(s) disrupts the lymphatic system and lymphedema can be a lifelong possibility. Some women never have any trouble, but I did with only 2 modes removed. It's worth talking about. I have such respect for the lymphatic system now!



That said, my reconstruction looks really nice!