Double mastectomy, no reconstruction, recurrence 8 years later

Mag8yearsurvivor

I found a chest wall mass on a Thursday evening in February.  By Friday afternoon, it had been mammogrammed (yes, it was big enough to fit into the machine), an ultrasound, and met with a breast cancer surgeon.  Of course, he thought surgery to be an option....when you are a hammer, the whole world looks like a nail!  My oncologist who has journeyed with me for 8 years, halted that on Monday and did scans.  Enter the insurance company who initially refused PET scan, and then again, had to preapprove Aromasin therapy. 

So it has been one month since cyclops appeared.  The oncologist suspected a bleed.  I have seen him annually since the original surgery and was in the 1% that would NEVER have a recurrence for the rest of my life.  Suspicion is now that the mass was held in place by a muscle or tissue and that I fell, or somehow broke, the restraint and out it popped.

My world is rocked, my COBRA is running out at the end of this year, my husband is disabled, and I have no children.  Mind/body connection and the upbeat attitude is hard to engage when I feel so alone and angry.

I can tell from the few postings I have read here that I am NOT alone.  I would love to hear from anyone who can share.

malleycat

Mag-  I want to start by saying that I am so incredibly sorry for what you're going thru- I think that's all of our worst nightmare, and my heart absolutely breaks for you!

I hope you don't mind my asking though, I'm confused by your tag.  It says that you had 3 cm of DCIS, but it was Stage II with mets and you had to have chemo.  From what I understand DCIS is Stage 0 cancer that hasn't spread, so was there other cancer present with the DCIS? Or were your lymph nodes positive maybe?  Again, please forgive the questions, I'm just trying to understand. 

I'm so sorry that you're feeling alone- I wish I could give you a big hug!  Remember that we're all here for you!!

Mag8yearsurvivor

My original cancer in 2005 was mixed cancers.  There was ductal, as well as invasive.  and just plain mixed carcinomas.  When I was completing my profile, it only gave me the choice of picking one.  So I guessed.  

I had six tumors, one of which was not detected on the MRI.  Three in each breast.  They did oncotyping on one of the tumors and based on that result decided to do chemo after the double mastectomy.  more prophylactic than anything else.  or so I thought.  I was staged at Stage 2 in 2005.

I am now 62 and after 8 years, had the recurrence which automatically jumps me to Stage IV.  Bone m as well as the chest wall mass.

Does this answer your question?

malleycat

Yes, it does.  And I cannot effectively express just how incredibly sorry I am- it's bringing tears to my eyes.  I don't know what else to say... 

lago

Mag8yearsurvivor Just popping in to give some insurance advice. Obamacare kicks in in 2014. So if your Cobra lasts through December then you will be good to go and get health insurance in 2014 because they can't refuse you for a precondition and they claim it will be affordable. Assistance will be available for low income. Enrollment will begin in October but coverage won't start till 1.1.2014.

If not I recommend contacting the American Cancer Society. Right now it looks like the  Federal plan might be suspended but there might be ways to by-pass that. A social worker at ACS or your treatment center might be able to help you. It appears Ohio doesn't have high risk pool insurance but even if they do I'm sure its $$$. I was on it in Illinois and it went up really high at the end of my treatment. Luckily my husband did land a job so I went on his.

I hope that helps. I hate that this is happening to you. ♥

Mag8yearsurvivor

Do you think that the private insurance market will have products to enroll in, regardless of whether there is a federal plan?  I am trying to apply for SSDI but I doubt that will be successful in time to transition from COBRA.

Mag8yearsurvivor

My doctor seems very very hopeful.  He is telling me that this is slow growing, estrogen dependent, and that I will be on treatment for the rest of my life....  but he didn't indicate that the life span was measurable.  

Then again, maybe he just didn't want a hysterical overweight woman on his hands.

Most of the other blogs I read seemed to have had a recurrence but they all had reconstruction.  I have not read of anyone with no reconstruction and then the recurrence.  But I am new to this site.

melmcbee

Mag, I just wanted to send you a big cyber hug. That is my fear is getting a chest wall mass that will be hid by my reconstruction.

Mag8yearsurvivor

Thank you for the cyberhug.  Gratefully accepted.  I never found any of the six tumors from the original BC.  My cyclops literally popped out and was impossible to miss.  I see that you had radiation which I did not.  Are you on Hormone Therapy?  I was on Arimidex for 5 years and it really kept everything at bay.  God bless you with health.

lago

Mag8yearsurvivor private insurances can't refuse you once Obamacare goes into place. You will have choices. Again I would contact the American Cancer Society (1.800.277.2345 24 hour free hotline) to see if they have any information for you. If they don't check again early fall. Seems enrollment time will be in October and you want to be ready and informed about what you need.

Mag8yearsurvivor

I went for my first zometa treatment on Tuesday and grabbed a copy of my pathology report.  I have updated my profile.  was lobular not ductal.  no wonder you were confused!

HLB

Hi, I was dx'd stage 2 in oct 2004. Had bmx with expanders then silicone. Mets to spine 8 years later (july 2012) and was put on letrozole and montly xgeva. Its working well and tm went from 116 to 33 in 6 months on that tx. I refused tamox the first time. Cancer was er+/pr+ her2- grade 2, 2/11 ln. There are lots of treatments. Yes, for the rest of your life, but you are not going anywhere soon! Come to the st 4 forum when you're ready. The ladies are awesome and really help, esp those first weeks when its such a blow. It does get better.

Mag8yearsurvivor

Not to sound stupid, but is this a chat room, or the Stage IV forum.  I just jump in and post a reply to something?

Hortense

I think she meant the Stage IV forum, not the chat room. And, I also immediately thought of Obamacare when I read your first post. Iago is absolutely right.

Also, have you applied for SSDI yet? If not, do it as soon as you can. I am helping my cousin through it, while it does take time I think being diagnosed as Stage IV will give you priority. I have read through a thread on here about getting SSDI and think I recall some women getting it surprisingly quickly, one with Stage III.

Best wishes to you.

HLB

Yes I meant the stage 4 thread. If you go to the main discussion board and scroll down you can find it. You will get a lot more replies and good info there.

Annie62

Hi Mags,

I'm a no reconstruction girl who had a recurrence. So sorry you had a recurrence and I hope you get on a successful treatment plan soon.

I just recently went on Cobra and I think I remember reading that you are eligible for an extension (from 18 months to 29 months) in some circumstances and I'm pretty sure a Stage IV dx qualifies you. So you may want to contact your COBRA rep and find out so you can get the doctor to fill out any required paperwork.

Best,

Annie

Cathi1

Hi there

I'm from South Africa and new to this site. I had a double mastectomy in December 2005 (two tumors in right breast) but removed both. Have NOT had reconstruction and quite comfortable about not having it either! Have ER+/HER2+ BC and I had 6 months of chemo and Herceptin from Jan-June 2006 and a further 6 months of Herceptin (year treatment). I was given the all clear and then in December 2012 I felt a lump on my chest just above my scar. Went for a sonar, recommended I see surgeon, he checked it out, suggested a biopsy based on my history (to give me peace of mind). I had it removed from my chest wall in January. A week later it came back as a milignant lump embedded in my chest wall. No-one was worried pre-removal - ho hum!! Then went and ran all the scans with my Onc. and I have two 1cm mets on my liver - still BC er+/her2+. I'm currently on weekly Taxol with Herceptin every third week. I am going for #10 of 28 weeks. I have absolutely NO doubt that I will be positively groovy after this. I have fully gotten into my weekly routine of how to cope with the SE. Chemo day - lots of fun in ward - feel fabulous. Wide awake Friday all the way through to about 5pm Saturday. Start the decline....ha ha become boneless chicken for  Sunday and Monday, take myself off to work (I work in Advertising) on a Tuesday if I feel like it or work from home. Wednesday - leap out of bed and shake off the dust. Thursday - firing on all cylinders (back to me) and then we start again on Fridays. All good.... there are lights at the end of the tunnel for us folks. Happy day to all xxx

PS: Forgot to mention- my Herceptin is a year treatment every third week and after the chemo treatment I will do five weeks of radiation on my chest wall site.

Mag8yearsurvivor

Cathi1,

You and I could be identical twins up to the point of the February 2013 chest wall mass.

Now our treatment has deviated.  Probably the protocols of each country's health care system.

Good luck to us both!

I have retired (NOT because of Stage IV) and applied for SSDI to get the COBRA extension of 11 months.  That will help, but I am still a long way from Medicare.  Oh well, sufficient unto the day are the problems thereof.  I will cross that bridge when I come to it.  (the full quote...seldom used)

Enjoy the sunshine!

Mag8yearsurvivor

Cathi I,

My post of two seconds ago was directed to you.  Oops.

Mary Ann