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Papillary serous sarcoma patients

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

I am newly diagnosed with papillary serous carcinoma and needing some help preparing for the surgery and treatment to follow. Does anyone have some good articles or practical advice? My husband has multiple myeloma and there is a lot of useful info through MMRF and IMF. 

Is there anything for my type of cancer? Thank you!

phkodal@gmail.com

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2939
Joined: Mar 2013

Hey  PHK, at four years out, and lots of searches, this is the only place with information.  There is a TON of information on this site and you might want to read some of the older posts for information and advice.  Seriously, you could go back 3 years and learn a lot.  When I first found this site I read a lot of the posts and there was great information.  

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

Thank you!❤️

Peggylee
Posts: 13
Joined: Jul 2016

Sorry to say i'm a new member of this club.   according to my CT scan everything is clear I have a dime-sized tumor in the uterus.  I was diagnosed Papillary Serous Carcinoma grade 3 ....4 weeks ago.   Worried things have changed since then being it's fast growing.  Complete hysterectomy, removal of all lymph nodes (which  were clear)  I am debating if i should have them removed due to side effects.  Don't know if i'll do chemo etc as i'm sure they will want me to.  I can't believe  this is happening, I look in the mirror, look the same, feel fine.

 

brissance's picture
brissance
Posts: 192
Joined: May 2016

Ahhhh Peggy, I am so sorry.  Scary crap you are facing.  Each one of know your fear.  The way you deal with the fear and your disease now is crucial.  

I too, Have Papillary Serous Carcinoma (UPSC)..  I had a 4 cm tumor and everything else was clear but had a positive wash and had LVI.  I didn't have difficulty w/ my decision, tho.  After reading the stats on UPSC I opted for chemo and radiation, the full monte.  I want to destroy the killer inside.  Each of us are different. I don't know your health status.   I was healthy and knew in the beginning I had a darn good chance of being healthy enough to deal w/ potential side effects.  My biggest problem has been losing my hair and that is really not a big thing in the overall game plan for me.  

I know I am lucky.  I am just giving you my thoughts as I am dealing with the same issue.  In 5 years I may be sorry because I chose as I did but I made my choice after study and getting information on my disease.  Just make an informed decision.. learn the facts.. lots of info on this site. most issues you will face one of these great ladies on this site has faced before and will share their info with you.  I also took my pathology report and scoured the internet for any medicial studies on my results.

Give yourself some time and find that special strength that you have, your inner warrior princess to fight the big C...  You will do the right thing.. at least for you.  All of us here are on your side and we give you any info or support we can and you need.     

Prayers are going your way.  Patty

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2939
Joined: Mar 2013

Peggylee, I see you just posted for the first time, so I hope you come back to the site again.  You might want to ask about the lymph nodes and get some definition on how many they are taking.  Hopefully your surgeon is a gynecologic oncologist as he/she will know what they are looking at when they get in there.  If you have a chance to have someone with you when you speak to the doctor or the nurse, it helps that to have a second set of ears as you are trying to wrap your mind around this.  Uterine Papillary Serous Carcinoma (UPSC) is agressive, but not so much so that if you want a second opinion you do have time for that. 

I hear your "I look in the mirror, look the same, feel fine".  But it sounds like they caught this early which, believe it, is great.  Try to take a breath and you have time for a second opinion.  

Peggylee
Posts: 13
Joined: Jul 2016

This is what i was told....  removal of the uterus, cervix, both ovaries and tubes omentum all visible cancer, removal of lymph nodes In pelvis and par aortic. Thank you all, for responding.  Closer to surgrery more i'm depressed

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2939
Joined: Mar 2013

Peggylee, when I met after surgery with one of the doctors in the practice - not my surgeon - she said, "you had a hysterectomty plus" because he took so many lymph nodes.  This is all very overwhelming, I remember that feeling, and there is nothing I can say to take away that feeling.  I promise you this, this is one step at a time and you are going to amaze yourself.  You are not alone as we are here for you.  We have been through this and you can ask us anything.

Peggylee
Posts: 13
Joined: Jul 2016

Yes the surgeon is gynecologist oncologist. My first consultation was with his partner and after he examined me he said he wasn't going to do the surgery his partner was. I may  meet him, But,  I'll be under sedation at the time.  Guess he thought he was funny...not.   I Spoke with an advocacy nurse helpline about a second opinion and she said they would do the same Procedure. the gynecologist will remove everything and the oncologist surgeon will do lymph node removal

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I'm so sorry that you are having to deal with this, but know that you are not alone.  As others have said, this is the scariest time when everything is just getting started and there is so much that is yet unknown.  Before surgery, I asked my surgeon how many lymph nodes he would be taking, and he told me that everyone was different and he wouldn't know until he got in there.  He ended up taking 22, 4 of which were positive.  

I know in my case, when I talked to my ob/gyn right after diagnosis and as we set up my pre-op appointment, I asked if I would be meeting with the gyn/onc prior to surgery.  She initially said I would meet him the day of surgery as well.  When I expressed a desire to meet with him beforehand, she arranged to have him meet with me during my pre-op appointment with her, ten days prior to surgery.  But I did get the impression that at least with my situation (an HMO), it wasn't unusual not to meet the gyn/onc before surgery.

The surgery and recovery turned out not to be that bad.  Our bodies are remarkably resilient. Once you get all of the pathology back after surgery, then you and your gyn/onc and his team will come up with a plan.  Once that is in place, you will be surprised at how much better you feel.  I know right now it's still a shock and I understand that unreal feeling of looking in the mirror and feeling great, while knowing you have this serious disease.  

Please try to breathe right now.  Enjoy the holiday with family and/or friends, and try to put it out of your mind for at least a while, easier said than done I know.   But the more you can hold on to your "normal" routine while awaiting surgery, the better you will feel.  And if you need to vent, scream, rage, please know that we are all here for you and we understand.  

Chris

 

I

Peggylee
Posts: 13
Joined: Jul 2016

Tomorrow I'm going ziplining with my children.  I might have a different  kind of fear to deal with lol.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1808
Joined: Jun 2015

Peggylee, So sorry that you are having to deal with the C beast. You have come to the right place for support and help with any questions.

I don't believe your doctor will remove all lymph nodes. But they generally take enough out for testing to ensure clean margins or determine if there has been a spread in the lymph system. It is important for them to get enough samples all around to know what your stage is. I hope you reconsider your position on this.  While UPSC is a fast growing cancer it generally isn't lightening speed fast. I was diagnosed in May and didn't have my surgery until Mid-July.

Like others - many of the other ladies here.... I made my decision to do everything recommended by my doctors to fight this ugly cancer. I am just over 6 months out from chemo and brachytherapy (vaginal radiation) and am starting to get close to normal. I'm not going to tell you that it was easy because it isn't. I will tell you that I made the right decision for myself. I am able to wake up every day happy and healthy without feeling like I have a huge threat hanging over my head.

The beginning of this is the hardest. You are hit with so much information and the shock of cancer that it is a bit overwhelming. It does get easier once you know what you are dealing with. You will put your battle plan in place and march forward.

There is a lot of information on this board. Please take the time to read the posts. I think you will find the best information here and gain a sense of calm just by knowing others have been through it and are still here to talk about it. If you have questions about chemo, there is a thread titled 'Ladies going through chemo...' that may help calm your fear about it (or not!). Several documented their chemo journey as they were going through it.

Please come back with any and all questions. We are all here to help each other.

Let us know how you are doing.

Love and Hugs,

Cindi

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Peggylee, I am so sorry to hear of your diagnosis. I recall being in your shoes just last year. It is a very scary time but please know that you will have all the support that you need from us. 

Waiting for the surgery was especially stressful for me. I could not wait to get that tumor out! My surgery was a TAH-BSO with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal. My diagnosis was uterine carcinosarcoma, stage 1b, grade 3. 

The pathology report on the tumor will help your doctor determine your recommended treatment plan. My treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment at the end of May 2016 and have had a clear scan showing no evidence of disease or "NED".

Trusting your medical team and their advice is critical. I have no regrets for following my gyn-onc's recommended treatment plan. If you have doubts, get another opinion! Frontline treatment may be your best opportunity to get ahead of this monster and you don't want to regret a decision that was made from a place of fear. 

At this early stage, I would recommend getting copies of all your pathology and surgery reports for your files. They will come in very handy to refer back to and if you decide to get a 2nd opinion. 

Also, consider taking a recorder with you to appointments or find out if your cell phone has an app to record them. There may be a lot of important information discussed and you don't want to miss anything. I listened to some of the early recordings again recently and realized that I had missed some very important things the dr. had said at the time.

Good luck to you on Wednesday. You can do this and we will be here to support you! Wishing you peace and strength, Kim

janaes
Posts: 800
Joined: May 2016

Peggylee, welcome to this group.  No one really wants to be here, but for me it has been a great support.  I wouldnt have made it this far with out the sweet ladys here.  I wish you well with your surgery.  I hope you have support as you go through your journey.  I remember after I found out i had cancer (carcinisarcoma stage 2 grade 3) I had two weeks before surgery and just went back to work until then.  My co workers couldnt believe i was working while i had cancer.  I felt fine other than i was starting to feel my cancer.  Im glad you went zippling with your kids.  Enjoy your good days.   Lot of love, Janae

Peggylee
Posts: 13
Joined: Jul 2016

Had my surgery July 6th,  three weeks Wednesday I'm recovering well. Sent me home the next day miserable that night with cramps and gas.  Sent me home with a catheter I had to wear for 4 days being it was a weekend. Diagnosed with papillary serous Adenocarcinoma stage 1B grade 3.  What's the differences between that and carcinoma I don't know. I realize I'm fortunate to have caught this early. Due to the fact I left my lymph nodes they can't really stage it properly. They did say they would do chemo either way if left them in or not. I have an appointment to go to the oncologist this Wednesday. I don't really want to have chemo and I know they'll probably say radiation as well as they had mentioned it prior. Pathology report says tumor summary that lymph- vascular invasion present in the uterus.  This type of cancer has feelers that can spread to other organs. I have two holistic friends that are encouraging me to do gresson therapy.... there have been success and people have become cancer free. Has anyone heard of that? I doubt very much if I can do that as its a very strict diet with coffee enemas.  Doctor said without chemo it could come back in a year or 10 years they just don't know.  I suppose I'll have to give in to the chemo.  They did do the Lynch syndrome test as there has been cancer on Father's Side plus first cousins fortunately it came back negative which will be a relief for my children.

Doc said chemo.... loose hair in two weeks may loose eyebrows and eyelashes.  Neoroprathy ... who knows what else side effects.  Please tell me what happened to you regarding  side effects. I know how it was for my father and father-in-law cousins... they didn't fare so well. It's very frightening, as you all know, to go through all this.

brissance's picture
brissance
Posts: 192
Joined: May 2016

All of us go through the anguish you are now suffering.  It is terribly hard to realize, "I have cancer".  But dear lady, cancer no longer means death.  Each of will have different issues and concerns but each of us must be in unison in not allowing the bully to scare us to death.  

Chemo has not been too bad for me, but others have more issues.  None of us want to take poison but all of us want to live.  The docs will monitor and you must be vocal about issues you have, they can change dose amount, drip time and even chemo to customize it to your needs, your cancer your input.  Guess my biggest suggestion is to become familiar with your cancer stage etc. Read your reports from the doctor.  If you need second opinion, get one.  Read this site, surf internet for medical info from reliable sources (I usually go to research universities) and learn about your disease. Many women on this site are so knowledgeable they must be finisihing up their internship soon, as they have studied to learn about our disease and share information and sites to review for information. From a strong knowledge base, chose your treatment.  

You will do it.  I felt the same way when I first got cancer but now I am at war and planning battles.  Right now the good guys are winning, yay.

Peggylee
Posts: 13
Joined: Jul 2016

I forgot to mention I did meet the oncologist surgeon, he was the most compassionate, sweet man I've ever met. He held my hand prior to  surgery while we discussed whether to remove lymph nodes.  I told him I wanted quality of life not deal with swelling etc.  Re: second opinion... I assume I can't go out of my insurance plan. Would I get an honest opinion from another oncologist that are affiliated with my insurance?

I have been having sporadic Sharp pains in my abdomen since surgery. Is this normal? Could It Be I'm overdoing? Or is it healing?

 

 

brissance's picture
brissance
Posts: 192
Joined: May 2016

Having faith in your doc is soo important on so many levels.  Feel fortunate you like him.

I still have those pains and it is almost 6 months.  I would mention it, I did.  It depends on how debilitating the pain is... discuss it. 

I did not get a second opinion as I had confidence in my doctor and the hospital.  I do not think there would be an issue at all in going to another doctor in the same insurance plan...  Doctors' honestly want us to get better, at least most do.  (You can always ask a suggestion from on Oncology nurse.  Honestly, I trust my doc enough I would ask him directly. Someone else on the site will have more and better info on this matter as I am speculating on an issue I have not faced

Hang in there I am sure you will get some great info very soon from our group.

Take care and God bless..   Patty

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

and yes, people have had success with it.  Some people have had success with just about every alternative and holistic treatment/diet there is for cancer, it is just that individual a disease.  And some people have success with chemo and radiation.

The prospect of chemo is frightening as we all here can attest to.  However, side effects can vary widely.  If you'd like to see that for yourself, please read the thread titled "Ladies Going Through Chemo."  It will give you a really good idea of the wide range of side effects that you may or may not deal with.  I was pretty lucky, and my side effects were relatively minor.  Yes, I lost most of my hair, eyebrows, eyelashes.  I had intermittent stomach pains, mild neuropathy, nasty constipation at first.  But I never lost my appetite, had no food aversions, no overwhelming fatigue and only a bit of occasional queasiness.  As you may get tired of hearing, everyone reacts differently.

As far as your holistic friends go, there are ways to use both natural and conventional methods to fight cancer, and in fact, many natural methods are complementary and can enhance "western" medicine.  I would recommend the book "Anti-Cancer" by David Servan-Shreiber.  No matter which way you decide to go with treatment, his book is very empowering, describing his own battle with cancer and what he did to combat it.  He does talk about diet, as well as other modalities, including exercise, yoga, meditation, etc.  The book was recommended to me when I was first diagnosed and it was well worth the time to read it.

I personally have used an integrative approach, have had chemo and brachytherapy but I am also including a naturopathic oncologist as part of my cancer-fighting team now that I am NED.  We all find our own way through this crazy cancer jungle.  As Brissance said, get as familiar with your cancer/stage as possible.  Research as much as you can.  If having a second opinion will make you feel more confident in your decision, by all means get one.  Many insurance plans will cover a second opinion.

And be sure to spend some time reading older posts.  There is a wealth of information here about almost any subject you can think of regarding cancer, treatment, side effects, etc.  And if you don't find the answer you're looking for, please ask.  So many here have gone through so much and are more than generous with their experiences.

Chris

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

This is a wonderful source of information. I will try and go back and read the older posts. I am new to this format.

Peggylee
Posts: 13
Joined: Jul 2016

Please tell me where you find the Old Post 3 years ago. 

Thanks

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

http://csn.cancer.org/node/296461

Peggylee
Posts: 13
Joined: Jul 2016

You look great so I assume your hair,  eyelashes, and eyebrows grew  back in.  Did it take long? thank you again for sharing.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

 

About 5 weeks after chemo, my hair started coming back in.  And it started coming in with a vengeance.  Head hair thicker and finer, eyelashes thicker.  But then my eyelashes thinned out a bit for a while.  Now, they are kinda back to normal.  

My profile photo was taken at the end of April of this year, 4 1/2 months after chemo ended.  I had my first real haircut in almost a year at the beginning of this month, and I wear it short anyway, so that is pretty much back to the way it was pre-chemo.

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

Treatment for UPSC depends on the Stage and your doctor.  I was Stage II, Grade 3 and after my total hysterectomy, my doctor recommended chemo but no radiation.  I only made it through three chemos because I got so sick (liver failure).  I'm hoping the three chemos did the trick but if not and the cancer comes back, I'll deal with it then.

There is so much good information on this site and everybody is so encouraging.

Love,

Eldri

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

Eldri,

I hope you are "all clear". Thanks for your insight and hlep.

cheerful
Posts: 266
Joined: Apr 2011

 Hi:

  I am responding to your post.  I was diagnosed in February of 2011 (I just reached my 5 year anniversary).  I have Had No reoccurrences thankfully and I was diagnosed with Stage 1.  I go back and see my oncologist for my 6 month checkup (I assume I will only go now once a year starting next year) providing all goes well with my visit in April.  My oncologist wants me to go for a cat scan which I get done now on a once a year basis. In the beginning for the cat scans, the first year I had 3 cat scans alone to make sure my cancer did not come back.  In April of 2011, I started undergoing chemotherapy and had 6 rounds ending in August.  I then had 3 brachytherapy treatments (radiation) in September and October of 2011 every couple of weeks. 

 I have watched my diet and lost 20 lbs going throughchemo treatments. The chemo was doable although after the chemo (2 days later) I only could have 2 meals a day day since the chemo does make you sick and you do not feel like eating.   I took carboplatin and taxol and you do lose all your hair after your first treatment about 2 weeks later. This is the common chemo treatments being diagnosed with UPSC.  I wore my wig which I bought right before my chemo treatments started and wore my wig up until August of 2012 so I wore it for a long time until all my hair grew back.

I am very blessed and fortunate and very grateful that my UPSC cancer has not returned on me. I have carefully watched I have been eating and try and have very healthy foods.  I am so glad I have finally reached my 5 year mark and it is a huge and big milestone for me.

  I hope I am of some help to you with your starting your cancer journey and I wish you all the best and good luck.

Cheerful

a/k/a Jane

 

 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

what an inspiration to all of us, Jane, no matter our diagnosis. Continued good health to you and God bless. 

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

Thank you for posting, Jane!!  It gives us diagnosed with UPSC hope that it can be controlled.

Love,

Eldri

cheerful
Posts: 266
Joined: Apr 2011

Hi Eldri:

  Thanks for responding.  I hope I am inspring woman on the uterine board from my being 5 years out from having been diagnosed with UPSC in 2011.

  I am just very grateful and thankful that I have remained cancer free with No reoccurrences and hope that it will continue to stay that way. I am very grateful I was diagnosed with Stage 1 and that my cancer was caught early.

  I do plan to remain on the uterine board site and will respond to e-mails.  

  Good luck with your UPSC diagnosis and I hope that everything continues to go well for you.

Cheerful

a/k/a Jane

 

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

Thank you, Jane,

Your story is really great to hear right now. I hope you continue to be cancer free.

Thank you for writing to me. I get my surgery date today.

In Health,

Pamela

cheerful
Posts: 266
Joined: Apr 2011

Hi:

  I forgot to mention in my post I just e-mailed to you that I was 59 1/2 when I was diagnosed 5 years ago. I am now 64 years old.  From your information, it looks like you might be 63 years old. In what area in the US are you from? I live in Penna. (outside of Philadelphia) in the suburbs.

 My oncologist is very well known and people from the Caribbean even come to see my oncologist. My oncologist just recently retired and now works out of the office 1 day a week. He is now in his mid 60s just about a year or two years older than myself.  He is an excellent oncologist and knows so much about my cancer. He has been in practice for a very long time many, many years.

  Since you asked about practical advice, I want to mention about watching your diet and what you eat.  I ate a lot of bologna, hamburgers, fast foods, steaks through the years and now only have lunch meat once in a very great while.  I do not eat at McDonald's or Burger King anymore and now have turkey burgers or a burger that is 92% lean and broil hamburgers for my family in my oven.  I do not have fried foods anymore since I also have cardiovascular disease and watch my cholesterol as I am on medication for high cholesterol although my numbers are now better from blood work.

 Cheerful

a/k/a Jane

  

  Anyway, if I can be of any more help, you have my e-mail and you can send me an e-mail if you have any questions.

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1808
Joined: Jun 2015

Congratulations on hitting your 5 year milestone! So happy for you.

Love and Hugs,

Cindi

cheerful
Posts: 266
Joined: Apr 2011

Hi Cindi:

  Thanks for responding and your good wishes for hitting my 5 year mark. Yes, it is a huge and big milestone for me. I will feel much better once I see my oncologist in 2 more weeks for my 5 year checkup just to be sure that everything still looks good for me. He does want me to go for a cat scan which I will have done in the near future.

Love,

Jane

 

ncg007
Posts: 136
Joined: Nov 2015

Congratulations Jane on achieving 5 years! 

cheerful
Posts: 266
Joined: Apr 2011

Thanks for responding and your good wishes!

Cheerful

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hi Jane,

i attempted to send you an email but perhaps I don't know what I'm doing. I'm also in the Philly area. Would you mind sharing the name of your oncologist?

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

HI Jane,

Thanks for the practical advice. At this point, I am in a new country. 

I am 64 years old. My husband just reached his 5-year mark with multiple myeloma. The time goes so fast and we are so lucky he is doing as well as he is.

I live in New Hampshire and am very close to Boston. My onco is from MGH and highly respected. after surgery ,I will get a second opinion about treatment. My husband goes to Dana-Farber, and we have the name of a good gyn-onco there.

Did you get a cat scan prior to your surgery? Or Pet scan?

Were you able to work after surgery? or radiation?  

My e-mail is phkodal@gmail.com. No need to write, or at least no pressure.

I am so full of questions at this point!

In Health, and with gratitude,

Pamela

ncg007
Posts: 136
Joined: Nov 2015

Pamela...Sorry you've had to join us here.  I'll be 55 next month and was diagnosed with a 50/50 mix of endometriod and papillary serous carcinoma, stage IIIC1, grade 3.  I had surgery Aug 21st and just completed treatment Feb 22nd and after 8 long months I will return to work on April 18th.  I had a scan prior to and after surgery and dr will not do another unless there is reason to.  After surgery dr put me on 8 week leave, I would have been ready to return after 4 weeks but unfortunately I started chemoradiation 5 weeks after surgery and remained off work for the duration.  If I did not have chemo in conjunction with radiation, I probably would have worked during as the radiation itself was not bad at all for me.  However everyones experience is different, there are many woman on this board that continued to work.  My full treatment consisted of 2 rounds of chemo(Cisplatin) along with 28 external radiation treatments followed by 4 more rounds of chemo(carboplatin/Paclitaxel).  Get through your surgery and hopefully you will find no further treatment needed and if you do, you've made the right decision to get a second opinion, I got three.  Keep asking questions, we are all here to help.  Wishing you the best.

Nancy

Edit note:  i just noticed your subject vs post conflict, do you have sarcoma or carcinoma?

Anonymous user (not verified)

You are the first lady I've meet that has mixed.  My path report said 75% endometriod and 25% serous, stage 111C1, grade 3.  I've read if it's over 10% serous. doctors treat us as having serous.  But I also read that mixed has a slightly better prognosis than pure serous.  Did your doctor comment on that?  I didn't ask my doctor much about prognosis, he just indicated that serous had to be treated with chemo because it's highly recurrant and aggressive.  Hugs Nancy

ncg007
Posts: 136
Joined: Nov 2015

Nancy...Yes I've also read that serous trumps the other when mixed cells.  Dr did not note whther or not better prognosis than pure, just that 50% wasn't good.  Unfortunately it is high grade and aggressive which is why we took the aggressive treatment route of chemoradiation instead of the sandwich method.  Recurrence rate is high, goal is to get past two years to where that percentage will significantly drop, then hit 5 year mark!  Ive lost track, have you finished treatment?

Nancy

Gardena
Posts: 102
Joined: Jan 2016

Nancy, I just read your post - your doctor's comment about getting to two years clear reminded me of something my radiologist oncologist said to me, which was, "you dont need to worry about this cancer raging back. (I was questioning whether the time to do radiation was worth it, or was it just going to come raging back in a month). He went on to say that in my case, reoccurance would most likely happen after one year, if it was going to happen sooner rather than later. I guess the idea being that if anything is left (after the aggressive treatments and the positive response of my body), its microscopic and it would take that long to become apparent.

I'm in week 2 of doing 25 external radiation/6 low dose cisplatin treatments. Finished carbo/taxol 5 weeks ago - I am wondering if I shld keep my port in for a year from this May 1st when I'm done w treatment. I have no problem w it, and I dont like the idea of taking it out only to have to put it back in one years time, if in fact, I need chemo again.

May I ask, do you still have your port? Ladies who have just finished treatment, do you still have your port? How long are you keeping it? Eldri's port horror story is the reason I think I shld keep mine for awhile. I dont want to mess w a good (ie; working) thing.

Thanks all, I love this group

ncg007
Posts: 136
Joined: Nov 2015

Gardena...yes my dr too said recurrence most likely 1-2 years.  Funny you should ask about port, I left my dr a message about that today.  I spent over an hour this past Friday with Onc and his PA discussing plans for ongoing monitoring and somehow missed the port topic on my list.  I would like to remove it and will have to see what Onc says.  But I am curious too to what others have done.

Nancy

Gardena
Posts: 102
Joined: Jan 2016

Is your port staying or going? Inquiring minds want to know! :-)

I see rad onco tomorrow, I'll ask him and report back his opinion. -G

 

 

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

My two cents. About six weeks after I finished chemo (for UPSC, Stage 1), my port was accessed one last time for a new baseline CT scan for future comparison. My gyn-onc then said it was up to me if I wanted the port out, and I did, so it was removed. I am on the usual surveillance protocol, every three months for two years, every six months for three more years, so I am just hopeful that nothing more will turn up! I really had no problems with my port, just a few days of pain on insertion and a slight bump on my chest. I am glad I made the original decision to have one placed as it made chemo days that much easier.

I am currently 15 months NED and feeling strong!

Martha

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

Don't pay any attention to the bad luck I had with my port.  The vast majority of ports heal really good and don't cause people any trouble at all.  My physical therapist had reviewed my records prior to my appointment yesterday and when I got in there, she laughed and said said she was afraid to do the testing because my leg might snap.  LOL - I told her I felt the same way!!  I've just been going through a string of bad luck hopefully that's all about to change!!!  At least, that's what I keep telling myself - ha ha!!!

We hired a new office manager last week and she seems to really be working out great.  She's taking the online Microsoft Access class (our work data base is Access); otherwise she doesn't need much training.  Our last office manager worked for us for seven years and left right in the middle of my chemo which was really hard - luckily our son had graduated from college with a business degree and he took over for the winter.  This takes a lot of stress off me and I can go back to my 12-14 hours a week doing the bookwork.  My physical therapist said there is a new exercise class starting up for cancer survivors and she's going to get the info for me tomorrow at my appointment so I can get in it.  I just want my pre-cancer life back!!!!

Love you all!

Eldri

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

After my 1st go round surgery, chemo, radiation, both internal and external I was told I was cancer free.  2 of my doctors said go.ahead and have it taken out,  my Gyn-Onc recomended leaving it in for 2 years because if it was going to reccure it would more likely happen during the 1st 2 years.  Well. I listened to the 1st 2 and had it taken out.  Stupid ME,   7 months later I had to have it put back in when the cancer matastisized.  It was harder to get back in because of scar tissue and it now sits at a little bit of an angle.  Not everyone can access it easily.  It works find and does not hurt, but most nurses have a hard time,getting into it.  Hind sight is much better, I wish I had left it in.

Hugs and Prayers,  Lou Ann

Gardena
Posts: 102
Joined: Jan 2016

Is the basis for my interest in keeping my port in. Like Chris, my doesn't bother me (other than the Frankenstein lump in my chest) so figure better safe than sorry. See if my doc concurs today, I'll check back later.. 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I'm keeping mine in for at least a couple of years.  While I'm not fond of the large bump in my chest, which is quite prevalent since I am so tiny, I am realistic about the chances of recurrence.  It doesn't bother me much, but there are a lot of scoop neck tops in my wardrobe that I am probably going to pass on this summer! 

Chris

 

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

Since I had my port installed the end of October I've been wearing tank tops under my regular shirts but I wear them backwards.  Now that I have that buck-ugly scar I figure I'm going to wear them under my all summer tops too.  I have about 30 tank tops in just about every color so I am ready to hide that scar!!!

Love,

Eldri

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Good idea about the tank tops, Eldri.  I have been layering during the cooler months with long and short-sleeved T's, but for some reason, had not thought about the tank tops.  I may be able to wear those low-cut tops after all!  Then I won't have to answer questions about my third breast.

Chris

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