In shock UPSC IIIC diagnosis (Incomplete Staging) Update

Rcdeman,  sorry i havent responded sooner.  Im so glad these wonderful ladies have been there for you and that you are feeling more hope.  I remember when I was going threw all the diagnosis stuff it was real hard.  I got so many mixed messegage. At one point it looked like really good news.  Its what one of my doctors said.  I was only going to have to do radiation.  No chemo.  It looked real good.  When I went to see the radiation doctor he didnt agree and said i needed chemo.  Boy that was hard to hear.  I felt like i was on a rollor coaster for sure.  I had told every one that radiation was the only treatment.  It was so hard to except that the diagnosis was worse than the other doctor thought.  I didnt want to do chemo at all.  It felt like my life would change forever.  My life has changed.  I ended up taking time off work. Im home by myself alot while my kids are at school.  I still struggle with all this stuff at times. but i will tell you this.  Im fighting.  Really fighting.  And to be honest as much as i still hate the chemo stuff, i am glad i am doing it because i know that this is going to give me my best chance at life.  I know now that chemo is the best thing for me.  I had decided at the time that if my cancer was to come back i would be sad i didnt do chemo. There was parts of MMT in my cancer (an aggresive cancer) that i finally saw on my pathology report.  I really do hope the best for your mom.  These ladies here on this forum have given me hope too. Im doing my second to last chemo this thursday.  Please be there for your mom.  My mom works full time and lives 15 minutes from me.  Although our relationship has struggled at times, I am so greatful for some of the really hard things  and sacrafices she has done for me.  I believe in the two of you. 

lots of love

Janae

Near the end of this month, I will have survived 6 years after having had stage IVb UPSC.  I didn't have any in my lymph nodes, but I had it in my uterus, both ovaries, my omentum (where there was a cake-like formation), and my small intestine.  I was considered stage IVb because it had gone out of my pelvis.  I had surgery and chemo with Taxol (Paclitaxel) and Carboplatin.  I had nothing else done to me besides that (no radiation of any kind, alternative treatments, no special foods or supplements).  When I was diagnosed, I resigned myself to dying.  My little brother, five years younger, who thought I was going to die, dropped dead himself (most likely of a heart attack) while I was going through chemo.  He hadn't been to a doctor in over 10 years and seemed healthy. Life takes many twists and turns and you never know what will happen.  My view was that if you expect the worst and the worst happens, you won't be surprised.  If you expect the worst and the best happens, you'll be happy.  My oncologist wouldn't tell me my chance of survival.  He said that if my cancer had a 90% survival rate, but if I ended up in the other 10%, the 90% survival rate wouldn't help me at all.  I later read that I had about a 9% chance that I'd still be here today with the stage I had (the highest possible stage).  But here I am.  Keep the faith.   

I was diagnosed with Invasive ductual carinoma ("IDC") one week after my 50th birthday last year, 2015.  I had a mastectomy of my left breast in early June and immediate reconstuction (Alloderm and Tissue Expander).  My reconstruction ended up being my "battle" with breast cancer as the cancer itself was down graded from Stage II to Stage I after surgery.  It was intially set at a clincial stage II due to the size of the tumor but when it was evaluated by pathology it turned out a lot of the tumor was in situ (not yet cancerous) thus the change to Stage I.  I need no further treatment for breast cancer other than staying on Tamoxifen (estrogen blocker since my breast cancer was estrogen receptive).  My "battles" (necrosis, infection, andwound dehiscence) with my reconstruction required 4 additional surgies and eventually led to the removal of the tissue expander in late Aug., 2015.  I thought I was free of all cancer related issues and ready to get back to "normal life" when I was  blindsided by with the UPSC diagnosis at the end of Sept during what was to be a routine gyn visit to monitor me while I was on Tamoxifen (one of the side effects of long term use of this drug is uterine cancer. Though they don't think it caused mine as I was only on Tamoxifen for a few months). I knew even before surgery that because my uterine cancer was serous (Grade 3) I would be facing chemo and possibly radation no matter the stage so I was prepared for this going into my surgery. 

Like so many others here I too had 6 rounds of chemo - mine was Taxol and Carboplatin.  Chemo was completed in late March and followed by 28 external radiation treatments which were completed in June.  My follow up CT at in early July showed NED!  My onco also does an exam every 3 months as follow up and will only do a CT or PET if issues arise.

I won't say it's been an easy journey the last year but it has been manageable.  I still worked full time and ran (I do a lot of 5K, 10K, 1/2 marathons normally) when I was able and have enjoyed time with my family.  This is doable depsite what Dr. Google (aka the internet ) has to say!

Don't be too hard on yourself either.  Being a caregiver is also difficult and emotional!  There is a quote I love because it is so very true in my mind...."when someone has cancer, the whole family and everyone who loves them does too."  Take time to care for yourself too - you deserve it!

My advice is to disregard the stats and take things one step at a time.  I had small-cell undifferentiated carcinoma in 2009 and the stats were very dismal, some online studies indicating only a 2% survival after 5 years.  I'm glad I didn't read that until well after treatment!  The on-line stuff is out of date, and doesn't account for the individual and the latest expertise/technology/skills.

One step at a time.  :0)

cindy0519 said:

Rebecca,

I personally thougth the 28 external radiation treatments were not bad.  I was tired, had some diarrhea, and a bit nausea here and there but overall it was very manageable.  I had my treatments first thing in the morning and then immediately went into work. I was tired by 3:30 or so and often went straight home for a nap before eating dinner and going back to bed.

As far as an overall treatment plan goes, I too did TONS of research and was convienced that I wanted to do a sandwhich approach of 3 chemo cycles, followed by radation, and then another 3 chemo cycles. My gno onc recommended doing a 6 chemo cycles and then discussing raditation but I instisted on the sandwhich approach based on my research. She somewhat reluctantly agreed.  I also sought a second opinion (something I highly recommend your Mom consider too). The second opinion Dr. said there is nothing "wrong" with any approach - it's a bit like choosing a religion - none of them a "better" than the other and all are likely to have the same outcome, its just a mattter of personal preference and what works best for you. He did howevever point out to me rather candidly - that radiation will weaken the body to some extent (will vary by person) and this weakening could potentially make getting the remaining 3 chemo cycles much more difficult (again will vary by person).  He said very point blank "what is going to kill you in a distance recurrance (metastatic disease) not a local recurrence. If you have a local recurrence we can quickly and easily (in most cases) treat it with radiation and/or surgery.  If you cancer metastasizes it will be much harder to control. If it were me....I'd focus on treating the cancer systemically via chemo and then consider radation." He also sang the praises of my current onco and team and said no reason to change a thing in that regard if I need to run anything else by him at any time just call but I am in the best hands possible as is.  I made a call to my gyno-onco when I got to my car and said I wanted to do all 6 chemo cycles together and then do radiation and I never thought about it or allowed myself to second guess the decision again. 

I beleive all occurances of UPSC are treated with a platinum based chemo as that is what it is most responsive too.  Other than that, it is my belief that our cancer is as individual as each of us are.  What my cancer responds to anothers might not and so fourth.  This of course makes any form of treatment somewhat of a gamble so we must actively participate in our treatment by being open and honest with our treatment team.  Talk to the onco about what you have found, discuss each option and the side effects of each. Get their recommendations and perhaps seek a second, or even a third opinion if necessary, for your family to reach a level of comfort with the chosen treatment plan.  And once it is in place - keep communicating and be flexible. Nothing is in stone...if something isn't working or is making your mom very ill speak up and demand action if it is not immediately taken.  Treatment is rough but side effects can be well managed if everyone works together. 

Another thing I swear made a huge difference for me was integrative care.  I did accupunture, massage, and worked with a nutritionist from day one and still continue to do so. These services were available through my cancer centers integrative care program. Might be worth looking to see if the cancer center she will get treatment at has such services and scheduling a consultation with them.  A year ago I would have downplayed such services but I truly believe they helped keep nausea at bay, minimized the amount of neuropathy I have, and just helped keep my overall health as good as it could be considering all my body was handling at the time.

I hope this all helps! 

What you posted is just so timely for me as I've been reading about so many others having the 'sandwich" technique and was starting to second guess why it was never proposed for me. I've been wondering if I missed out on something that would give me better odds if I end up having radiation therapy. I will sleep so much better tonight because you took the time to share your story. Thank you so much!