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VENTING - Recurrence

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

I must be in a real mood today to Vent to all of you what's on my mind. Read it, Comment, if you like, Blow me off as some emotional mental case - but understand I just need to share with someone what I am dealing with. I figure that some might see 'bplatt' and just by-pass the discussion entirely. I have no doubt many of you have been here too, so I want to know your experiences. I'm not trying to spread discouragement or distract from other, more positive, discussions, but this is a reality in my life and is probably a reality in some of your lives.

It sounds as if so many of the women on this discussion board are dealing with recurrence. It is my understanding if USPC recurs, it is not curable. My recurrence was diagnosed exactly 1 year, to the day, from when I was declared NED. My symptoms - visible swelling in neck & pain in arm & shoulder. Diagnosis - 4 cm x 3.5 cm in Supraclavicular lymph node and 1 cm & .5 cm in Right & Left upper lung lobes, plus several smaller spots on my lungs, all new compared to last CT.

If USPC is not curable, am I to expect this cancer will pop up indiscrimently anywhere, at least once a year? Does it recur in the same places every time or does it randomly pick a new target with each recurrence? What's your experience between first diagnosis and 1st,2nd, 3rd recurrences. I sat in chemo a couple of weeks ago with a women who has had 57 rounds of chemo. Cancer/Chemo is her life and has been since 2007. She said the most important word in her vocabulary is "STABLE". She has a wonderful frame of mind and great attitude - I just wonder if I have what it takes to be like her. Sometimes I wonder since I had an emotional meltdown the other day because of the impact cancer/recurrence has had on mine and my family's lives, physically, emotionally and financially. It was a total 'Pity Party'. I cried for two hours - fought with God, blamed God, asked God to please forgive me for my absolute selfishness and then praised and thanked Him for everything He has done for me. I love life and my husband & I have been so blessed with everything we NEED. But, I must say, in the big scheme of things, and when I'm in my totally selfish, "human" mind, I'm afraid to Dream & think about the future. I have always been a very positive person and somewhat of a 'realistic' dreamer. But cancer has altered that dreaming and planning part of me! I'm so afraid to spend a dime on anything frivolous or extravagant, such as a cruise/vacation, new clothes, furniture, landscaping, etc.. because of the financial position we must deal with. We are not in poverty by any means, but when I am off of work and I have reduced pay, co-pays, out of pocket expenses, prescriptions, etc., our pennies are stretched to the limit. Any extra money must be set aside for unexpected experiences such as USPC recurrence. How does one plan anything for the future with the 'cloud of recurrence' hanging over your head? It's inevitable it's going to happen, so do you just plan your life around it? I think that is a legitament question.
I am doing extremely well with my chemo and have my CT next week. I expect it to reflect significant reduction in the mass in my neck, but have no clue about the spots on my lungs. Does Taxol/Carbo work as well on the lungs as it did on the original USPC and the mass in my neck?

To wrap this up - I'm just interested to know how you deal with all this?

Ro10's picture
Ro10
Posts: 1455
Joined: Jan 2009

Sorry you are feeling such pain and discouragement. But what you are feeling is normal. I was diagnosed with UPSC stage 3C in 1/09. I was told right away that it was not curable, but treatable, like a chronic disease. I don't know if that has helped me mentally accept that I won't be cured. I had 18 months after my initial treatments before my first recurrence. I had 7 months after my second round of chemo before my next recurrence. I asked if the period between recurrences would be shorter, and was told unfortunately yes. I am so thankful that my initial chemo drugs are still working for me. my recurrences have always been lymph node enlargement, usually in the same areas.

I always have a melt down when I get bad news that I need to go back on chemo. I am okay after a day or two. The ladies on the ovarian cancer board talk about putting on their big girl panties and moving forward. I guess that's what I try to do.

Many ask " why me, why did I get cancer"'. I ask " why me, why do I get to go to heaven before so many others". I believe heaven is going to be so wonderful, and I think this is a pretty awesome place. I am not afraid of dying, but do not want to leave those I love. I do have my pity parties on the days I feel so yucky, but try not to stay there too long. I try to be around positive people and avoid negative people. I use. Meditation and listen to music. Walking is a great distraction for me too. And I depend on prayer, and the prayers of others. I don't believe we fight this alone.

I understand your concerns about expenses, too. These blood thinner shots I take every day are so expensive, but I sure do not want to have a stroke either. It seems my cancer center here in FL wants me to provide the Emend and the decadron for pre-chemo drugs, too. Will be interesting to see if my IL center has changed, too.

I know what you say about being hesitant about spending money on extra things. My husband always says we have enough money. He is thinking about the next trip when I get off treatment again.

Bonnie, hang in there. Know that what you are going through is not easy, and your feelings are your feelings, and there is nothing wrong with having them. in peace and caring.

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Ro10, thanks so much for your comment. Like you, I'm not afraid of dying but I also worry more about the people I'll leave behind. It's funny - I spoke to my wonderful daughter who has been at my side through all of this and she admitted she also had a little meltdown herself the same exact day I did. We didn't know about each other until a few days after the fact. Even though we are very stong, christian women, we allowed ourselves to forget we are not alone in this. We let the feelings of fear and uncertainty drag us down to real despair. Also, I think Heaven will be a pretty awesome place, too.
I've never really asked, "why me" because I think being obese for so many years and genetics were my health threats. I never smoked or drank (occasionally social), but I loved to cook, dine out and enjoy great food. I just assumed I would get cancer, because it has been rampant in my family all the way back to my early ancestors - including both my mom, dad, grandparents and some aunts & uncles I take after.
I think I'll try to focus my attention more on some of the things I used to love to do, such as listening to good music, scrapbooking, reading good books (other than books about cancer) and working on some of my projects such as VCR tapes to DVD, etc. I had such big plans and they all just seem to fade into the back of my mind once I became so focused on this recurrence. It is a mind thing because like now, I feel really good physically. Emotionally, though, the CT scan I have scheuled Thursday keeps popping into my mind. I have absolutely no reason to think the results will be bad, but the 'what if they are' question all of a sudden brings me down. It's a really choice to shake it off and rise above it.
I do pray for you and all the expenes you must deal with. You mentioned your cancer center in FL & IL. Do you commute to one or the other or are you changing centers. I'm glad that your chemo drugs are working and that the recurrences seem to be confined to the lymph nodes and in the same place. Where did your recurrences occur? Are you in chemo now?
Take care Ro10 - I always look forward to reading all your posts!

Ro10's picture
Ro10
Posts: 1455
Joined: Jan 2009

Good luck with you CAT. Scan on Thursday. Hope you get good results.

We winter in FL. It is time to return to IL. So I have gotten treatments half in FL and half in IL. Every time I started in FL and finished in IL. My IL oncologist follows what I have had recommended in FL by my gyn/ Ono. I will have treatment number 4 on April 13,14 th. This is my third time going thru chemo.

Mary Ann talked about getting on Disability through Social Security. I went to a lawyer that specialized in disability. He only charged if I was approved. Because I was UPSC stage 3- C I was approved right away. He even filed it for when I had ny abnormal PAP test in 10/08. My surgery was 1/09. I don't know if you have a lawyer like that in your area. I was an RN and worked 12 hour shifts, so ther was no way I could be around sick people and work those long hours going through treatment. I read about applying for disability through Kris Carr's book "Crazy, Sexy, Cancer". I would never have thought about applying, but so glad I did.

After you are on Disability for two years you become eligible for Medicare, So at 62 I became eligible for Medicare.

The lymph nodes I have involved are supra clavicular, para tracheal, pre carinal, right and left para aortic, lymph nodes. They enlarge, and then shrink with the chemo. I have never had any symptoms before diagnosis or during the recurrences.

I hope you can find the energy to do some fun things. It will keep your mind occupied. In peace and caring.

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Sorry, this was a double post - don't understand how it does that????

light42day
Posts: 61
Joined: Mar 2012

I'm pretty new around this board but I wanted to comment on your post. I don't blame you at all for venting! You have every right to! What you have gone through (and are still going through) is very hard and really not fair. I've prayed and asked God why and hope someday that i'll find out. I'm told He has a purpose for all our sufferings. I've thought a lot about recurrance,too. I gues everyone with cancer does at one time or another. That's why I chose to do these 3 rounds of taxol/carbo. Hopefully it will make a difference. But there's always the chance it won't. I wonder why more research isn't being done on USPC. There's got to be some reason why more and more women are being diagnosed with this. I'm just really sorry for all you're going through and will keep you in my prayers, too. I'm not very far down this cancer road and have not been through what a lot of the ladies have been but I've been through enough that I do understand what it's like.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I hear you Bonnie. I was diagnosed a few months before Ro and told the same - not curable and chronic. I also have no delusions but I still have my "pity parties". Ro actually helped me recently since we email privately.

My first recurrence (in supraclavicular lymph nodes) was discovered about 14 months after completion of initial treatment. My second recurrence (in para aortic lymph nodes) was discovered about 14 months after completion of next treatment.

My doctor said that longer periods of NED bode better than shorter ones.

I applied for Social Security Disability right after my first recurrence and I was approved within 2.5 weeks!!! I have since retired from my FT job and just work PT (I was told I can earn no more than $1000 a month). If you decided to apply, I'm VERY SURE you would also be approved because of the recurrence. This may help your financial situation since you would receive your full social security rate and get medicare 2 years after approval.

STRESS is a factor and I sense your stress. I also hear your wanting to save money - understandable. But life needs to be enjoyed too - so I say go on that cruise, treat yourself, do the things you always wanted to do because we never know when life will throw us another curve!!

When I get weepy my doc reminds me that any of us could die today in traffic. I'm also practicing Tong Ren and think it is helping. If I get worse I have a plan for getting private Tong Ren sessions which I believe will help. If you want to talk privately, email me through CSN.

Hugs to all, Mary Ann

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

daisy366, I always love to read what you have to say, especially since we do have a similar recurrence experience. Thank you for sharing your experience. When my USPC cancer was originally diagnosed, it was also in my para aortic lymph node. I hope all that chemo & radiation killed it. I know cancer can come back in the same place, but even if it has an extra boost of radiation?
I've thought about Social Security Disability but I need my health insurance. You said you were approved in a little over 2 weeks. How did that happen? Did you talk to a counselor or go in to the SSD office? I know you have to get a statement from the doctor, but I can't believe it was so fast. I don't qualify for medicare until I turn 65 (Oct,2013). Did you actually retire at the time you qualified for SSD? I have really great Short Term & Long Term Disability with my company, but the paperwork is a nightmare. I know somehow the LTD works with SSD, so I may look into it. I do love my job although it is very stressful. I know I can't work through all this treatment stuff, though. You are so right about life is to be enjoyed and that we don't know when life will throw us another curve. I am actually going shopping on Wednesday to buy me some new outfits and get my nails done. I really am looking forward to it!
So, what exactly are you dealing with right now? Are you in any treatment right now or or you in a state of remission? I hope and pray you continue to fight the fight. For all of us dealing with Uterine cancer, no matter what kind it is, you are a testimoy of how best to deal with it. Thank You! Hugs back!

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Dear light42day, thank you for your prayers. God does have a purpose and a plan for each and every one of us and they were determined the moment we were conceived. Good or bad, He promises to do what is in our very best interest, even if we don't understand. I believe that with my whole being! Actually, that was my argument with God that day - Am I a hypocrit, do I really believe it when I tell myself & others that exact thing? At the end of my Pity Party, I did come to the reality, I do believe. But as most have said in this string of comments, we don't understand, "why me" and we all get caught up in 'it's not fair'.
I'm glad you have not been through a lot, although any experience with this is life altering. I pray that all the treatments you have had will make a difference. I do know lots of women who have beat this cancer thing, although I know of no one with USPC except the women on this discussion board and a couple of women whom I see during my chemo visits. They are as in the dark about it as I am. I do hope research and advancements in fighting USPC occur.
Take care of yourself!

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Bonnie, if you have not read it yet, I highly recommend Simonton’s book Getting Well Again. I find it extremely helpful for living and getting the most out of however many days I have ahead. I have been dealing with recurrence for 2.5 years, starting about 15 mos. after completing first line treatment. I was again in NED status following second line chemo but I recurred again just 3 months later (about a year ago). Feb. ’12 scans showed notable disease progression beyond just lymph node involvement. I had a very difficult time coping with this reality initially. The above book as well as doing healing meditations has helped me gain a much improved perspective and I find great joy in just living in the moment. If I’m not enjoying the moments of my life, then what I am worried about??? ;-) The reality of having a shortened time with my children, though, really hit me hard. They may be grown, but even my parents though quite elderly are still around and there for me. My kids’ father passed away over 10 yrs ago so this has been very hard to handle.

There is no way to predict the pattern of your disease. You could achieve NED status again with your current treatment. My gyn-onc noted that experiencing a first recurrence is an indication that the first line treatment was not fully effective – just not showing evidence of cancer’s presence at that time. And every time I receive chemo, the cancer cells can adapt and change and be more difficult to control and less responsive to new or the same treatments. However there are always ‘exceptions to the rule. ‘ As well, there is the possibility of a clinical trial of an innovative and better targeted treatment. Accepting this as a chronic disease rather than terminal disease is important. And many people have chronic diseases that may impact their lives but still allow them to continue to participate in life. Although, we must remember that life is terminal – it will end for everyone; one just never knows when. My life took a major detour after my diagnosis for which I was not prepared mentally, financially, or emotionally – but things could always be worse! The first year was the most stressful trying to figure out income and health care and coverage. I have acknowledged that the stress with these issues may have impacted my first recurrence. It may not be the life I had hoped for but I am still here and I will find a way to keep on keeping on. And we’re all here to support each other on this journey.
Annie

debrajo's picture
debrajo
Posts: 786
Joined: Sep 2011

My Gosh girl! You are HUMAN, give yourself a break! Matter of fact, have a total break down if you want. Here in Texas we call it a "tiny Texas twister" and I have had my share of those...some right in the hospital! UPSC is CHRONIC and is not curable, but so was poilio, typhus,smallpox and a hundred other things. You are buying time(lots of it!) waiting for a cure or at least a halt to the spread. I know all about the money and emotional upset especially for the family. My husband can't retire because of me, I have an 18 year old son who is a high school senior and I have to tell him all his college money went to MD Anderson! Have all the melt-downs you want, cry all you want, then brush off the wigs and go get something absolutely pretty you dont need, take a deep breath, and like we say here,"back your ears and dive in " to the fight. We all have your back and prayer and humor work as well as taxol and carboplatin! Best,Debrajo

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Debrajo, I like what you say!! Go girl.

debrajo's picture
debrajo
Posts: 786
Joined: Sep 2011

Thanks Daisy! I just realized one day that all the surgerys, chemo, radiation, drama and trama could all work for a complete cure....then I could get smushed to death in that #&#$ Houston traffic! Feel free to tell me enough is enough...I tend to get carried away! Best, Debrajo

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Loved your comments and those of the other ladies. I get anxiety attacks every time I have to go into Houston for a Checkup at MD Anderson. Sometimes I am more afraid of the traffic than the cancer. By the way for Debrajo and any others. There is a monthly support meeting for Uterine cancer
survivors at MD Anderson in Houston. Next one is April 11.

Bonnie, to answer your question, for me it is living each day. When I think about all of it I can't quite take it in. I have to stop and think, well I have today. Tomorrow is going to have to take care of itself. Kind of a Scarlett O'Hara mind set. Tomorrow is another day. Your fears are ones I have had, if that makes it a little better. You are not alone, my dear. Can't let it ruin today.

What I have found is it seems like when I need it there is always help. Call it Grace, call it luck, call it chance, don't know. Each step of the way, financial, physical, or socially there always seems to be just what I need available when I need it. I like to think God plays a part in it all. Belief is a choice. I choose to believe that I am a part of something bigger than myself. It gives me great comfort.

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Thank you so much for venting. I think it helps releive stress. I appreciate so much what you say, and what the other ladies say on this board.

I am just now getting to the point where I view everyday as a gift,but I still view some days as really horrible too! It is just good to know that you are not alone in this fight. I do not have USPC, but I do have grade 3 and a genetic disorder that doesn't allow me to fight cancer like normal people. I'm not sure which is worse...

Anyway, that you for showing the human side. We all have it, and we all should embrace it. I do still feel like I can complain about the rain in Seattle!

Best of luck to you,
Rachelle

RoseyR
Posts: 464
Joined: Feb 2011

Rachelle,

Your two children are darling; you have s much to live for. And despite the "double whammy" that you mention (grade 3 and "a genetic disorder that doesn't allow me to fight cancer like normal people," the field of epigenetics is just opening and growing and promised to provide some solutions for many of us. (Nearly all cancer patients have some abnormal genes, or normal ones such as P53, that fight cancer but have turned off for whatever reason: aging, environmental factors, poor diet. But research increasingly shows that some defective genes can be repaired via intake of the best foods and supplements; for example, celery and parsley are among the foods that fuel apoptosis, the natural death of cancer cells. I assume you are keeping up with recent research on how to best modify our "terrain" (body chemistry) to make it the least hospitable to cancer? This doesn't necessarily mean we can always cure ourselves, but at the least, gain long remissions from even pretty aggressive cancers. If you scroll back through our subject lines, you'll find recommendations on "best books" and messages from Claudia ("California artist") that are full of valuable information on what we CAN do to help create the best body chemistry possible ...

Best,
Rosey

JVN_03092012
Posts: 16
Joined: Mar 2012

Glad to see VENTING is allowed but after reading all the posts I am wondering if I am in total denial of my uterine cancer. Am I unrealistic in thinking surgery will be the end of my treatment for a G1 tumor? My only meltdown was when my first appointment was cancelled which lasted for a couple of hours. And feel I am dealing with the diagnosis(not crying or asking the typical why questions). I just get upset with the waiting. Only a handful of family - my husband, 3 grown kids, 2 co-worker, my boss and a sister-in-law (who is a 10 year survivor of breast cancer in July) know of my diagnosis. So maybe I am not really dealing with it because I have not shared my diagnosis with my mother, siblings or my husband's parents(they are in their 80's and not well themselves)and I am not sure when or if I will share it with any of them. Is the a form of denial or me wanting to just be private? Thinking some where down the road I may need to VENT.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Just because you choose to be private certainly does not indicate denial to me. A cancer diagnosis is scary enough without the waiting and uncertainty that go along with it.

Vent when and if you need to. It's all OK!

Here's a ((HUG)) for you. Mary Ann

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Re: SSDI app. I did my application online (Linda P went to office and met face-face with counselor there and they actually approved her retroactively – she was also UPSC). Since I had copies of all my records, I used this info to help complete application. A worker called me within a week or so and I mailed in copies of my records plus a research article that gave info about UPSC being like ovarian and hard to treat. I think my records expedited everything and they didn’t wait for my doctors’ records. The worker commended me on my application. I left my job when my FMLA was up (I already knew I was approved for SSDI). I transferred to my husband’s insurance until I get medicare in July.

It’s good that you have short term disability. I guess I wanted to believe that lowering stress would help me not recur. Retirement was an experiment of sort s. But I recurred again anyway after 14 months - so much for that research project. I still work PT and have a lot less stress and good quality of life. I enjoy my choral group and bowling with my husband. I’m working on de-cluttering – what a task that is! Throwing it all away would be a good solution and I’m getting better at tossing stuff. It is very freeing.

As for my status: Since we caught it early and my doc wants to be conservative now, we decided to use the least toxic strategy first - I am taking Femara (an aromatase inhibitor - it's hormone therapy) daily. My doctor is monitoring CA125 monthly and wants to do PET/CT after 3 months.

Thanks for the compliments. I think we all do the best we can and hopefully learn along the way. I’m still learning.

RoseyR
Posts: 464
Joined: Feb 2011

Dear JVN,

I can relate to some of your comments and wonder if you could email me (using our CSN email at upper left on the screen. Just send email to RoseyR and I'll get back to you.

Best,
Rosey

Technogran
Posts: 1
Joined: Apr 2012

It does us all good to have a vent now and again! Helps to take the edge off it all. We wouldn't be human if we didn't get angry about how unfair it all seems. I do feel for all of you who live in the US. We do tend to take it for granted here in the UK our wonderful NHS where we don't have to pay a penny.
Now that you've got all of that off your chest, I hope you feel better and keep your chin up! My USPC is stage 4, so.......but I live for each day at a time, and plan to do everything I haven't got around to doing up until now ASAP!

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