DCIS is BACKKKK Mets to my Bones.... is there an end in sight?

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Thistoshallpass
Thistoshallpass Member Posts: 22
edited June 2016 in Stage IV/Metastatic Breast Cancer ONLY

Quick recap.... quick as I can possibly make it.

7/2013 Dx routine mammo... always irregular and followed with Mammo and Sono during each test

8/2013 Wire guided Biopsy left breast

8/21/2013 BiL Mast

10/2013 Cancer seen behind nipple / biopsy nothing seen.... Dr Don't worry about it less than 2% chance 2nd opinion... are you stupid? (not really but that is what she was trying to get across) forget about biopsy path doesn't lie... recommend removing left nipple finally after a PET 6/2014 Throat showed up... did biopsy etc... nothing to be concerned with monitor every 3 months with scope and ENT .

12/2014 Nipple removed and revision to implant

2015 Suppose to be SURGERY free deal with nipple in 2016

6/2015 start of CC but I decide it wasn't that bad I will wait until 2016 to still correct these things

9/2015 left breast so infected it was leaking out of healed incision... emergency REMOVAL on 9/11/15 now we are waiting the 6 months to let it heal and start recon again. Meantime I had pain in sternum area but no one cared enough to check it out.... WHO CARES IT was ONLY DCIS no worries

12/2015 right breast infected did MRI and Biopsy on stuff on left side... "scar tissue" right one has now "gotta go"... start 6 month clock AGAIN to get recon

12/2016 following surgery sense of taste affected everything I ate was HORRIBLE including something like a HOT NOW Krispy Kreme donut ...10 wks of this hell and losing 15+ lbs that I couldn't afford to lose

4/2016 been on a PS search for reasons not going into other than wanted someone I could "trust" the pain in sternum getting more painful everyday we are now at the unbearable stage.... new PS sent me for 2 CT scans.... chest to see they are ok... June is getting closer and a CT on neck/throat to figure out the pain.

4/15/2015 CT report comes back nothing really

4/26/16 ONC hummm read report nothing there refers me to an Orthopedic DR

4/27/16 Ortho looked at actual CT saw something that didn't "look right" called radiologist while I sat there... came back and said you need bone scan and to get a hold of ONC I will call him now with urgency in his tone. I knew then something. CT wa re-read and revised

4/29/16 Bone scan Moffitt.... hung around to leave with Bone scan and took the Ct from 4/15 to a personal friend radiologist. CT alone knew it was bone cancer Bone scan just showed A LOT of places.... the next step they tell me is now you need a PET/CT scan

5/2/16 ONC called wanted to see me that day. PET was ordered and I found a place to do it on 5/4 late afternoon. Again waiting on copy of CT I knew Thur it is even back in more place than the Bone scan revealed... several more places. yeah time line has a lot of test done within a couple of days with results reported back.

5/10/16 saw original Dr for him to see what the less than 2% person looks like,,,, and to hear if he had some thoughts.... other than shock.... cause it is ONLY DCIS... then onto the ONC and hear his thoughts on the Biopsy that is scheduled for Thurs.... Original DR thought about doing the surgery biopsy WED using some of the methods they use in the Bone scan with the dye.. but Now finally we get to the BIOPSY Thurs to see what it is and how to treat..... the ER+? is needed to hope hormonal therapy will help.

I am sorry if this next part is going to sound neg,,,, but I just can not believe that if it could go wrong it almost all has done so..... but I KNOW that there is someone out there going through so much worse.so it is not pity... just frustration. I hate this more for those I love than even my self.... I will be ok. but I am all my 84yr old MOM with dementia has and I have the most amazing man that I love beyond words...He supports me, encourages me and gives me the tough love needed and at the same time with the tender love, I hate that he is on this ride still but I am so happy he is here for me. We have the best most simple life and most pure love. I sometimes worry that he is in a situation where he needs to consider his future and happiness ...I don't want to see him suffer .... I don't want him or anyone to watch me suffer so if the quality piece comes into play I will opt out of treatments. But who knows in a couple of months I can be doing the "happily ever after" part to this story.

God Bless you all.

The following is from another of my post from 12/2015..... just added it again to this update because I felt I needed to.

Not sure if my situation helps any one else in any way. I really am in shock that "simple" DCIS has continued on to this journey. I know I have dark days but I hide them the best I can behind the smile that I let others see. I don't want to be that person no one wants to be around when you are always depressed. I steer clear of those type of people so I don't want to be one. Yes it is a depressing but the saying is… you have a choice on your attitude…. Maybe not your situation but your attitude you can control. And I know that all of the things going on are in God's hands. So I have to trust He will take care of it.

Does that mean I still don't cry? Absolutely NOT, I cry ALOT.

Do I have days where I am losing my spirit, you Bet I do.

But I still TRY and control what I can which is my attitude. Not easy, never going to say otherwise. But I have the most amazing friends and family so many people that I LOVE and that I really appreciate.

To be continued……




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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited May 2016

    TTSP, You have been through unimaginable experiences, and I am sorry you had to endure it all. We each have our own stories, and yours is a painful one to read about. It sounds like you have finally found some doctors who will listen to you and who know how to prove forward. Hopefully you have the biopsy completed and the results reported soon so a treatment plan can be put into place.

    You must be feeling a wide range of emotions from shock to anger to sadness to fear to impatience and on and on. These are all normal feelings that everyone on the stage IV threads feels. I am glad to hear that you a strong support system in your friends and family.

    Once you have a treatment plan in place, things will start to settle down for you. There are many people on these boards who can help you through everything. If you have questions, just ask. If you need to complain, do it.

    Let us know when you have the biopsy results and treatment plan. In the meantime, let us know what you need. I will be thinking of you tomorrow when you have your biopsy, and I will keep you in my prayers.

    Lynne

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited May 2016

    ThisToo... I am so sorry for all you are going through. I hope your biopsy goes well tomorrow and you are able to put a treatment plan in place soon. Like Lynne said, we are here to offer support and answer any questions you might have. Or we can just listen if you need to talk.

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  • Thistoshallpass
    Thistoshallpass Member Posts: 22
    edited June 2016

    Ladies Thank you! It is confirmed it has returned in my bones.... about a dozen different spots... spine, pelvic (where they did the biopsy) , hips, ribs, sternum and a few other bones. Started the treatment on 6/1 3 IV drugs for the rest of my life and I have had 3 rounds of chemo and now I am losing my hair. I have a lot of hair to.... Going to get together with some friends and do the haircut Wednesday 6/29 2 months after I knew for sure it was back thanks to my friend that looked at the report & gave me the news in the privacy of their home. I keep it together.... probably more so because it was with them and I didn't want to make them feel uncomfortable.... come to think of it I need to make sure they know how much I appreciate what they did. I know I said Thanks but I was in shock and time started to slow down while I tried to process it all. As for the haircut it will be a clipper cut because I know you can't shave even your legs or underarms while on chemo because they don't want any cuts that can get infected. I am hoping with the support of those around me that it will be easier to keep my composure and help each of us with the "shock" of first time seeing me without hair.... get that part over without being anxious. I have not had a lot of side effects but the hair loss is HUGE it is the outward piece that you can't hide. I went back to the Ortho to THANK him for listening to me and looking at the report where the return had been missed. I strongly urge all of you to take matters in your own hands.... be your own voice and PUSH. Even though the doctor thinks it can't be anything because you "ONLY" had DCIS

    Struggling like I am sure most women do about the hair..... and thankfully I have always liked to wear hats but I liked my hair more. I know people don't know what to say and only mean well because they think they need to say something.... as in you look great in hats.... you can try on so many wigs & change your style. I always take it in the spirit it is given but sometimes just saying I'm sorry is enough. I think more people should be aware of that because even though they mean well.... it can hit you the wrong way because it can happen at an emotional moment.... and then you just suck it up and smile and nod or say Thanks. I don't want them to feel bad for something they said and was said out of love and support.

    I loss both breast to infections and while I have prosthetic breast and no one sees this horrible looking body they will see the hair is missing, even the best wig is still a wig,

    Best wishes to all of you ladies and I appreciate when I read about your courage. God Bless


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  • car2tenn
    car2tenn Member Posts: 515
    edited June 2016

    Thistooshallpass:

    Get thee to the websites for cold cap therapies...It was approved in December 15 by the FDA. It has been used in United Kingdom for 20 years. I used it and was able to save a lot of my hair. never went bald. It Works. It was not cheap but it was well worth it. CDS

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