Back again.

Sparkspbuc

Three years ago I was diagnosed with DCIS. I had the lumpectomy with the radiation treatments. Everything came back good. Everything was going good,until I felt a new lump. I went for my mammogram, told the technician about the lump and the pain. A week later my PCP calls me early in the morning to deliver the news that my cancer has returned. I don't understand this because it was noninvasive. Statistics of a reoccurrence in this case are less than 20%. Yet, here I am. Again. At this point I don't know if it is still DCIS or if it is IDC. I suspect the latter because it has grown out from its original size and there is skin dimpling. I didn't even know that skin dimpling was a cause for worry, I thought it was from the lumpectomy. Looking at it now I realize that it is no where near the lumpectomy site, so I don't know what I was thinking. Bottom line, I don't trust the doctors I have been sent to, but my insurance won't cover the other place unless I go to Chicago for treatment. And, I admit, I am scared. Maybe more this time because I know more about what to expect. Is there anyone out there who has had a similar experience?

chrissyb

Hi Sparks and welcome. I didn't have the same experience as you but I just wanted to let you know that someone has read your post.

I understand your fear and your distrust of the doctors you are seeing........unfortunately BC has no rhyme or reason for doing what it does all we can do is respond with the treatment that is recommended at the time. The treatment you received before was not lacking nor was it wrong...........it was what was thought to be the best for you at the time.

I was told that I was fine also after a radical mastectomy and stage 2 but according to my doc I am defying the odds (what ever they are) and here I am stage IV.

All we can do is trust the doctors to know a bit more than we do and accept that BC does exactly what it wants........

Love n hugs. Chrissy

Sparkspbuc

Chrissy,

Thank you for your response, it is nice to know someone read it. I am sorry to hear what you are going through. Those are definitely not odds we want to beat. If you don't mind, I am going to add you to my prayer list because I believe that it helps to have others pray for us. I know the doctors did everything they were supposed to do, I just don't like this doctor I have now. I am looking for another one.

You are a prime example that BC is going to do what it wants to do no made the odds. Please, keep me updated on what you are going through and what is going on with you. I want to know. I want to listen. Don't worry about scaring me, because I am not scared any more. Well, at least not most of the time.

Pattie S.

LAstar

I had two lumpectomies with my DCIS. The second was done after an MRI that showed the DCIS was much more extensive than the mammogram showed. In the second lumpectomy, the BS took a much larger area and one of the "clear" margins from the first lumpectomy had more DCIS behind it. It seems that there can be "skips" in the DCIS in the ducts. It is not necessarily continuous through the ducts. I had BMX but there is still some probability of recurrence for me. I guess it only takes one missed cell.

My heart goes out to you for having to go through this again. I am sending wishes for the best prognosis and simple effective treatment. I hope you find a doctor that you like and trust. It is a very important part of your treatment. Please keep us posted! {{{big hugs}}}

chrissyb

Hi Pattie and thank you for your concern.......I do appreciate it........and thank you for adding me to your prayer list......a person can never have enough prayers said for them.

Please don't worry about me as I'm doing very well.....the mets are in my bones and Femara is keeping them right where they are so I am stable and have been for three years. I accepted a long time ago that my BC is what it is and whatever happens, happens. I will do what I need to do as far as treatment is concerned and in the mean time I live well and participate in my families lives.

I have two daughters and I also had one son who died 14 years ago........I have four grandsons and my youngest daughter got married a week ago and is now on her honeymoon in Borneo.

Pattie, you didn't say how far away from Chicago you are or if it would be a big inconvenience to travel for possible treatment etc. Fear can be controlled to a certain degree but I think what gets rid of it all together is acceptance.

Please stay in touch.

Love n hugs. Chrissy

Sparkspbuc

Chrissy, I live near Phoenix, AZ so it would be quite a distance but I will do what I have to beat this. Congrats on your daughters wedding, I love weddings and am one of those romantics that believe in true love. I can't tell you how reassuring it is to hear your story and how you are dealing. It has a calming effect. I have only one son, who is married and has given me a beautiful granddaughter. I love children which lead me to become a special education teacher. Working with my kids has helped me cope.

LAstar, thank you for sharing your story. My original occurrence was DCIS. My surgeon talked to me about the possibility of seeding from the biopsy which was why she wanted to perform my surgery as soon as possible even though it ruined my holiday plans. When I discussed this, or attempted to, my new surgeon cut me off and said it was impossible for this to happen. This was one of main reasons I am looking for a different doctor. Number one because he cut me off, number two because I felt my original doctor was trustworthy, therefore by contradicting her, he was not.

What lead you to decide on a mastectomy?

chrissyb

Sparks a Mx was recommended for me as I had multifocal disease and there was told that there would be very little breast left if I should have lumpectomies so I went with the mastectomy.

Phoenix sure is a long way from Chicago.........Is there not a large facility in Phoenix that you could go to? It is important to be comfortable with your treating doc as he/she is your lifeline at this particular point.

Congrats on your granddaughter!.......grands are simply the best!......lol......and make life definitely worth fighting for.

Love n hugs. Chrissy

Moderators

Hi Sparkspbuc, and welcome to Breastcancer.org. We hate that you have to go through this again, but we're glad you found us!

In addition to other members's opinions and experiences here, you can find reliable information about DCIS and chances of recurrence in our main site that may help you understand this second diagnosis.

We're thinking of you, please keep us posted.

The Mods

LAstar

Sparkspbuc, the second lumpectomy also had involved margins and my BS said that he felt that a third would not be successful after seeing the MRI. Actually, I went back and got copies of all of his records and he felt that MX would be necessary after seeing the MRI. It was very dispersed from armpit to nipple, so I had no other choice. It was devastating at the time but I am feeling strong and back to normal again.

Have you had a biopsy? How did your docs know it is cancer?

Sparkspbuc

LAstar, I can imagine it would be devastating at first. Because of the radiation treatments that I had in my first battle, I am concerned that I will have to do the same.

2timer

Did you ever find out what kind of cancer you have Sparkspbuc? Any treatment plan yet? I had a similar thing happen to me: was treated for a very small DCIS with tamoxifen and radiation and now 6 years later I'm stage II. I hope this isn't the case for you. Let us know how things are going.

llangford

I am the exact same situation. DCIS at 38 yrs and clear for 8 years. Same treatment as you. Clear for 8 years and here we are again. This time it's stage 2 invasive and I have undergone a double mastectomy on oct 30 and I'm going for my 2 round of chemo Friday. It totally blew me out of the water.