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Any UPSC 1a who did observation rather than chemo/radiation

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

There appear to be so few 1a UPSC that I have been able to find in the reserch or on this board.

If you were a 1a and decided to skip treatment, please let me know. At 77, I am really wondering 

if I want to do this. 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

I was diagnosed 1a UPSC after surgery in March 2012.  I completed follow up chemo and brachytherapy by October and have been NED since.   My treatment was very tolerable and I have not yet suffered any long term side effects that I am aware of.  I am 70 and doing great except for my arthritic knees.  I wouldn't dream of advising you what to do but do not regret any of my treatment.  Check out my picture.  That's me with my grandson about to go  on a bobsled ride at the Lake Placid Olympic run.  I've been busy making memories for the past 5 years.

 

Good luck to you.

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

This is what I am looking to hear. At 77 seems rather daunting to go through treatment and not have a few good years.

I have grandsons as well and we ride horses. Thanks so much.

DF

Meg08
Posts: 3
Joined: Aug 2017

My mom had a complete historectamy 3 years ago, she did not do chemo or radiation as her surgeon didn't recommend it, and she has been fine. I don't know that I would recommend it, only BC it is such an aggressive cancer... we are about to get results from her latest scan this week. Praying 

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

Hi, I am also a UPSC, stage 1A survivor having had surgery in October, 2014. I was 66 at that time and chemo was recommended just to play it safe(r). Chemo was better than I anticipated, almost no nausea, just difficult bone and muscle aches on certain days, and I really didn't mind losing my hair. I still have some lymphedema issues, but that was from the lymph node removal. However, in short, I feel quite recovered and healthy and expect to be around for my full lifespan! May you enjoy the same.

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

Did you skip the radiation? Actually that is what scares me the most. So glad you are doing well. You and Connie are truly helping me make these decisions.

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

My oncologist discussed my case with the hospital tumor board and the consensus was chemo only, just to be on the safe side, and I learned that most oncologists are not comfortable recommending no further treatment for UPSC. I also continue to have regular "surveillance" as they call it, every three months for the first two years and then every six months for the following three. Good luck with your decisions.

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

Thanks so much Hopeful! I meet with the radiation onco person on the 22nd and have a son who is in the field who is going with me. He is not sure why they want to do it, so we should get good answers with his knowledge for the questions. 

Big Sister 5
Posts: 18
Joined: Feb 2017

My sister is stage 1A and just had her second round of chemo. Once this is completed, her oncologist has her scheduled for radiation. She has extreeme pain around day 3 and 4 after chemo, but no vomitting. She is a trooper! I admire her and all of you experiencing this. Reading the posts on this site help me too. You give me insight on what she is going through. I pray for all of you and thank you for sharing your personal moments and suggestions.

Lynn

Nellasing
Posts: 529
Joined: Oct 2016

Sometimes people forget what the caregiver/support people go through.  It is very stressful and wearing.  Your sister is very blessed to have you helping her through this.  So glad you find this site helpful.  Please keep us posted.   (((HUGS))) and prayers

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

Donna, I think you were asking about women a little older (I was 49 when I went through it) I was UPSC stage 1A.  I had full treatment of chemo and radiation.  As scary as it was, looking in the rearview mirror I understand the "it's doable" statement.  While there are some people who have had terrible reactions to the chemo there are good anti-nausea drugs now.  As for radiation (I had external and brachy) and I had slight diarrhea when I first started but I think the probiotics and watching my diet helped minimize it as I continued.  I lived alone, and while I have good friends, I realized that I had to do things for myself.  

Lynn, please know, none of us could make it through without the love and support without our family and friends.  My twin sister made a sign with a funny word we have in our family and would send me pictures almost every day with that sign.  No one will understand what those silly pictures meant to me - she wasn't physically with me - but she was supporting me and that meant a lot too.  

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

I admit I was dragged into the tech age, but I am so glad we have this board and can touch each other from all over the US and world. Hearing from 1a's and their protocol has made me more confident that the chemo /radiation one is what offers us the best NED future. Thank you all.  And Lynn, your sister does better because of your love and support. My hope is that this type will get more attention and soon be conquered completely.  Thanks everyone!!

TracyGB
Posts: 8
Joined: Dec 2016

Hi,  I am a 1a survivor and went through surgery, chemo and radiation.  my side affects weren't too bad.  The worst was the neuropathy and  vagina sock fused together in the back after radiation so it is very short.   Only about 2 1/2 inches.  It is hard to stretch back out without using hormone cream which I refuse to use just in case. My short sock isn't hurting anything right now And I don't want to chance getting cancer back.  With all that said I would do it again.  I was diagnosed at 46 but I don't think I would feel different at any age but that's just me.  It is a hard and very personal decision for each of us.  Good luck with whatever you decide.  I hope you will check back in after you dget code.  Tracy 

Big Sister 5
Posts: 18
Joined: Feb 2017

My sister is experiencing problems with neuropathy. She feels like her hands, and bottom of her feet are burnt. I have her use ice packs to rest her feet on, and the freezer ice packs that are soft for her hands. That seems to be the only real discomfort she has right now. I thought if anyone else is dealing with this, ice/cold packs do help.

Lynn

Nellasing
Posts: 529
Joined: Oct 2016

just a thought- the ice is a great idea- I hope you are telling them that she is having trouble with neuropathy.  it is cumulative and may not be reversible.  in my case they reduced the taxol on the 5th treatment and ran it slower they also did that for the 6th treatment.  I also got acupuncture the day before and 1 day after each treatment.  I am taking some supplements and acupuncture still to continue to reduce the neuropathy.  (((HUGS)))

Kinableu
Posts: 14
Joined: Feb 2017

Ah it's great to meet so many 1As who have had good outcomes. 

During much discussion with my team it came out that the available studies of US PC are somewhat dated and flawed. USPC is relatively rare and studies have tended to include as few as 30 women with different surgeries and   If it were possible to have a group to study who have similar history and surgery the effacity if chemo external or brachytherapy can be studied properly. As it's a high malignancy cancer many people do not like to take chances -- including me-- but the evidence that chemo helps isn't that convincing To some of the more advanced thinkers studying USPC. if it's caught in Stage 1 the choices for treatment should be an individual decision depending on what a patient needs and can withstan

At my hospital which is a cancer hospital/research facility nationally famous, there were about 300 cases of all types of endometrial cancer treated, most very advanced sorry to say, and just 30 stage 1 or 2 USPC. This gives you an idea how hard it is to get answers to treatment questions.

in my own case... though I had robotic surgery and recovered well, my surgeon did the full hysterectomy after a d and c by another surgeon in a local hospital. which had apparently removed the original small tumor. The second surgeon found some endometrialfoci (colonies if you like)  but it had not spread beyond the endometrium.  Since  the original site could not be studied we decided to go for both chemo and brachytherapy, The vaginal cuff is the most likely site for a recurrence, I hear, and brachytherapy will target that area.

 

Hope me this helps and best of luck .

evolo58
Posts: 293
Joined: Dec 2017

This is a very rough, rough and not very-reseached guess, but in my opinion, UPSC of ANY stage is frustrating to research. I'm stage 4B, but for some reason, my pathology report says 1A, even though my omentum was involved. But it's still 4B, according to my care nurse. But .... but ... I always thought the pathology report was the final say. But my cancer DID involve the omentum, which is outside the uterus. But ... it might just be that the patholigist had something really strong in her tea. Really, I don't know anymore.

But this illustrates the problem. Online studies are sparse, covers women of all stages, treatments and backgrounds, and generally outdated or use small samples. Results vary. And Type 2s, including UPSCs, wind up being confused and feeling very ill-informed.

A thought popped into my head not too long ago. SUPPOSEDLY, the ideal doctor is supposed to see about 2000 patients a year. Not sure if that includes oncologists, and I think it's an ideal number, but let's go with that for now. This is a very ideal oncologist.

Take away benign cases, people who can't stand the onocolgist and go elsewhere, people who refuse treatment, and, of course, other types of cancers, and you have .... maybe at the very best ... ten percent of that. You're down to about 100 endo cases. 

Out of those 100, most are the garden variety. You're down to 20 Type 2 patients TOPS. Not just UPSC. All Type 2s. UPSC is the largest pecentage of those, but we will still have to take away a few. There aren't too many consistent studies that indicate the percentage of UPSCs to Type 2s in general, but for now, let's say it's 15 patients.

Fifteen at the very, very most a year. And my guesstimate is for an ultra-ideal fictional oncologist. This doctor is doing more ideally than the average oncologist, it seems, judging from Kinableu's statement, since I'm sure that most hospitals and centers have more than one oncologist.

Out of the fifteen, from what I'm studying, at least half are advanced right off the bat. Probably more, but I'm using a conservative number. Since we can't split a patient in two, and most are advanced, we'll give the extra patient over to the advanced stages. 

That would leave, at best, 7 UPSC Stage 1 or 2s a year for Dr. Ideal. The stage 3 and 4s are doing barely better at 8. 

Even if Dr. Ideal has been in practice for 10 years, that makes 150 UPSC patients in total, with 70 UPSCs in the lower stages. Over the last ten years, many patients don't bother seeing the doctor, move to another area, etc. So even using a conservative percentage again, Dr. Ideal is probably aware of the full case histories for about 120 patients AT BEST and in total. Many of those patients die of causes unrelated to cancer.

By the time you get to percentages of women with UPSC of ANY stage over 10 years, Dr. Ideal will probably not have very many cases. Maybe ... at the most ideal (since this is an ideal scenario) ... 80? Over a decade? And allowing for that advanced-stage percentage, the best number the good doctor will have will be for .... what? ... maybe 30 or so UPSC lower-stages?

Egads. No wonder info is so scarce.

Jairoldi's picture
Jairoldi
Posts: 217
Joined: May 2017

I asked my gyno/onc how many patients he had seen with my diagnosis of UPSC and he replied lots.  I asked my radiation oncologist the same thing and she said "2" - I am the second one.  My onc/gyn has been practicing longer but my radiation oncologist has been practicing more than 10 years. I'll bet my gyno/onc said "lots" to reassure me during my initial visit.

evolo58
Posts: 293
Joined: Dec 2017

Also, "lots" is a vague number. Presuming your gyno/onc sees at least 10 - 15 Type 2 patients a year, I don't know if he recommends radiation and/or chemo to Stage 1s. Some gyno/oncs choose not to recomemd it. Stage 4s don't usually get radiation, and they would be at least 25 - 30% of the total. So that would explain why the radiologist might not be seeing so many patients.

This is NOT a time when I want to feel special, darn it!

Jairoldi's picture
Jairoldi
Posts: 217
Joined: May 2017

I hadn't thought of it that way. :) That makes so much sense.

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Donna, I was 57 when diagnosed with UPSC  1A, 6 years ago. My doctor was adamant that I have chemo and told me she'd never recommend observation only with this type of cancer. Although not a walk in the park, chemo was much easier than I thought. 

I didn't have radiation, but I had prior radiation from cancer treatment in 2007 (unrelated to this cancer)  I think that entered into her decision although she told me she wouldn't have recommended radiation anyway. 

6 years later I have no side effects from either cancer treatment at all. 

Hope this helps in your decision.......I KNOW how difficult this is! 

Sending big hugs!

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

I begin my appt's this week to meet with the radiologist, get a port in and then meet with onc folks. Thanks to all of you, I am going to do the chemo - looks like beginning April and then, maybe ,some brachy at the cuff. It has meant so much to me to hear from those of you who have gone before. On 2/28 which was Rare Disease Day, I understood what so many folks have understood - if rare, it is not high on the research list. This site is worth its weight in gold for sure as it gives us the wind we need beneath our wings. Hugs!

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Glad we helped.  The port is a great invention.  My only discomfort was from the weight of my breast tugging on the incision.  The recovery room nurse immediately helped me into my bra and that did the trick.  I made sure to immediately put it on in the am and remove it last thing before bed for a few days.  When I showered, I supported it with my arm.         

Kinableu
Posts: 14
Joined: Feb 2017

I am glad to hear you are having chemo. I have gone for my 1st chemo, 2nd brachytherapy this AM

 

i do not have a port kind of wish I did as yesterday the attempt to put an IV in my arm gave me a nice bruise.

The side affects have been hard to manage at first but you learn what works for your symptoms

Dont plan on doing a lot of your normal routine get help and rest 

The Taxol is causing some neuropathy in this cancer fighter, achy legs and ankles. A heating pad is great. I also allowed myself to get a little dehydrated. If you feel tired drink LOTS of Smart Water or any water just need loads of water  Just walk around with a water bottle and constantly sip away.  

 

good luck --  sending love!

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

Got my chemo schedule today! Looks like it will be an all day affair - 9A to 7P. I will get a pick line each time to save the veins in arm, then have labs, then see the doctor and finally at 2 p.m. begin the chemo. After the first chemo, will set up bracky schedule. Can't say that I am excited about this, but I will have it all done by May 18. Again, thanks to all you who take the time to send the information and good wishes. It means much to share and learn from each other. Here we go !!!!

Delanie's picture
Delanie
Posts: 3
Joined: Jul 2017

Donna - this being July, I wondered how everything went, you thought you'd be through May 18.  I am just starting the process, trying to obtain as much info as possible from this site.  Hope you are well.

Nellasing
Posts: 529
Joined: Oct 2016

See you peeping in and wanted to say Hi and welcome!  Please feel free to post a question in the main forum so you can get as many responses as possible- we're all here to share the journey. 

If you aren't ready for that I'll just share that I was diagnosed April 4, 2016 and had surgery April 28, started chemo June 3rd and finished Sept. 21, 2016.  I had a little delay because my neutophils dropped. 

There is a search at the top and you can find a thread called "Ladies Going Through Chemo" which is full of info.

Let us know how you are doing.  (((HUGS)))

Delanie's picture
Delanie
Posts: 3
Joined: Jul 2017

Hi, and thanks.  I've just been perusing the site, trying to learn to navigate and see what information is available.  I have no diagnosis, waiting for test results. I'm going to look for that thread.

Nellasing
Posts: 529
Joined: Oct 2016

That would be so awesome and it's happened several times since I've found these wonderful ladies- a new name will pop on and be waiting and come back and say all clear- no one cheers louder that we do Laughing  For the others, we join them on their journey and look forward to each update.  (((HUGS)))

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

now that you have a schedule, it will get a little easier.  You will be able to see that light at the end of the tunnel getting brighter and brighter.  Stay hydrated .

Hugs and prayers, Lou Ann

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

Good luck to you, Donna. Keep us posted on how you're doing. Kim

Immdc
Posts: 3
Joined: Mar 2017

i was just doing diagnosed with serous carcinoma. It was only a 2mm invasion of the myometrium. My gyno oncologist recommends 18 weeks of chemo and 3 weeks of radiation. My breast oncologist, who treated me for breast cancer in 2010 (lumpectomy, 6weeks chemo and 6 weeks radiation) thinks we can observe it because it was so small. I don't know what to do. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

Immdc, a gynecologic oncologist specializes in cancer of the female reprodcutive system.  I am sure you trust your breast oncologist for getting you through that cancer in 2010 but please be open to someone who sees gyn cancers everyday.  If your serous cacinoma is another name for uterine papillary serous carcinoma it is very aggressive and there are quite a few of us here who are (were) Stage 1a and went for chemo and radiation.  

Immdc
Posts: 3
Joined: Mar 2017

Thanks for your reply. When they say 18 weeks of chemo, does that mean 18 treatments? I'm 54 years old but I don't think my body can handle that. It seems like overkill. How many treatments did you have?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

I think you can see from Lou Ann, Cindi, and Jane that they can vary a little in dosage but I think we have all started out with the same chemo cocktail.  I think you also see that there are a wide range of ages for women who have/are going through this.  

I was 49 when diagnosed and it is frightening.  None of us will deny that, but you can see we have come through to the other side.  You may have other health issues that worry you, and your gyn onc should be able to tell you specifically how often, etc...I had chemo, carboplatin and taxol, every 3 weeks for a total of six rounds.  After the first 3 I did radiation and then had the final 3 chemo treatments. 

We are here for you along the way, but please talk to the gyn onc.  They specialize in these cancers and you want to work with people who handle this kind of thing every day.  

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

It depends on the type of chemo.  There are some that are given every week.  You  can handle what ever comes and you will find that you are stronger than you can imagine.  I was 65 when I got on this rollercoaster and am still going strong at 70.  Sending hugs and prayers, Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1563
Joined: Jun 2015

IMMDC,  If they are going to do Carbo/Taxol my guess is they are suggesting a smaller weekly dose for 18 weeks. I started out that way, but had them change it to the "standard" larger dose every 3 weeks after my first 6 doses. I did that because I was not getting enough good days going weekly. While the every 3 week regimine had stronger side effects, it was well worth it for me because I had about 10 - 14 days that were decent out of each 21 day cycle. I finished chemo 12/21/15. While it isn't easy, it is doable. You will be amazed at how strong you are. I was also stage 1A grade 3 and had chemo and brachytherapy. I will turn 60 in about a week and I'm doing great.

There is a thread called 'Ladies Going Through Chemo' that has tons of information from several of us going through chemo. I hope you have time to read it. I think you will gain insight on what to expect.

Please come back and let us know how you are doing.

Love and Hugs,

Cindi

cheerful
Posts: 245
Joined: Apr 2011

Hi Donna:  I was diagnosed in February of 2011 with Stage 1 of UPSC. My UPSC was 5 centimeters so it was very small as well. My oncologist who has since retired  highly recommended I go through 6 rounds of chemo (every 3 weeks apart) and I had 3 brachtherapy treatments (radiation).  I started chemo in April of 2011 and finished chemo the end of August and the radiation in October of 2011.  I was 59 1/2 when diagnosed.  Chemo for me was definitely doable and I got through it very well.  I was on carboplatin and taxol.  I am now 65 years old.  I am seeing a new oncologist with my oncologist's group that retired the end of 2015.  He is very nice and compassionate.  In October of 2016 (5 months ago) I was diagnosed with a reoccurrence as I had a Pet scan which picked up a very small spot in my pelvic area and spleen and my CA number was at 134 the highest it had ever been. So my oncologist recommended chemo (4 different chemo drugs).  Usually it was around 9 my blood level on a normal basis.  So since December, my blood levels started to come down to the sixty degree range and I also had 49 back in January for my blood levels so he held off chemo for me. This month it is at 42 so I probably still will not need to have chemo done for now.  I go back and see my oncologist next week as I see him once a month as well as I get blood work done once a month.  

UPSC is a very aggressive cancer and can Highly reoccur.  For me, it was a real shock UPSC came back on me especially after 5 years since I gave up a lot of foods related to getting cancer in the first place like hot dogs, bacon, sausage, pork roll.  But if I were you, I would definitely get the chemo done - don't leave it to chance, it can come back on you.  I only had an 18% chance of it coming back on me and it did, but so far, I am very fortunate and lucky that I don't need the chemo for now since my blood levels have come down considerably since my diagnosis the end of October.  Anyway, I am very lucky at this point and am very grateful and happy and so is my family that I don't need to have chemo done as of now.  I am hoping that my number continues to go downwards. I am only a couple of points above the normal range so I am keeping my fingers crossed it continues to come down each month.

 So please consider getting the chemo done - you will have a good piece of mind to have it done and you will always wonder what if, what if, if you don't get it done and you will stand a much higher chance of the cancer coming back on you without having getting the chemo done.

Cheerful

a/k/a Jane

Immdc
Posts: 3
Joined: Mar 2017

Thank you all for your advice! My oncologist ordered a Ct scan and I'll have a better idea of what I need to do after I get the results. I'm getting use to the idea of chemo again but since I was treated with chemo for breast cancer 6 years ago, I'm afraid the cons might be stronger than the pros for going through that again. Has anyone done radiation without chemo?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

Immdc, I think the majority of women have done at least chemo (since it treats the entire body - and hopefully gets any rogue cells).  Radiation is so targeted and I think that is more of all over the board with the women here.  

I know I would struggle with wrapping my mind about going through chemo again, but in the end, I would do what I needed to do to kill the beast.

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

My schedule is set _ 4/6;4/27/5/18; I am getting a PICC line as I do not want to keep a port in after treatment. My schedule starts on a Th. as I hope to be able to tutor on M<T<W. Have been working with a chronically ill child for 5 years and need to be strog for her as well as me. 

Thank you to all of you as I would not have done chemo w/o your reports of your treatment. I am quite robust health wise, so everyone thinks I will do fine with the chemo, but plan to be good to myself and rest, eat well and exercise. Radiation (5) will follow the chemo so by June I will be done with it. Am already looking forward to being back on horses by fall.

May the Force be with us all!!   Faye

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

Faye - please know we are here for you throughout it all.  

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

That sounds like a great plan, Faye. Good luck to you and keep us posted on how you are doing. Kim

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

OK - first let me say that when I had chemo 20 yrs. ago., it was a small satellite office and I saw the same doc, nurse ,etc. every visit and they became my and still are dear friends. I am now at a renowned  teaching/ research hospital - 6 floors just for cancer patients. However, since my planning visit last Tuesday, my first plan of appt's ( I get them sent to a web page) have changed 3 times. I asked for a PICC line as a port has to stay in for 6 mos. or a year; they said OK but have to have a new one each chemo visit. OK  Now those appt's. have disappeared except for the first one. Also other things changed. I am a control freak and all these changes over the weekend when no one can be reached is scary. So it is midnight Saturday and I am wide awake and worrying - should I delay and get everything so I understand what is going on - relax and trust ( not real good at that) or what????   Have sent 2 emails to my contact nurse and will hear from her Monday, but just wondering if any of you had these same feelings at a big hospital?  I felt so in control before and now not sure that is even possible. I think I may have to take a sleeping pill or watch a movie to get my mind off this.  Hugs and thank you's  - so glad to have a place to vent my fears. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

Faye, I would call the doctor's office first thing and tell them your concerns.  Ask them why all the changes and you need to know the plan.  

I know not all the women have had radiation.  I did opt to have it and I felt as though I was getting jerked around.  In fact, one nurse was so nasty I asked to have the radiologist call me.  You say "control freak" but I think it really just have the INFORMATION and KNOWLEDGE of what is going on.  In any event, I recall clearly telling the radiologist, "This may be what you do everyday, but I assure you it is not for me.  I am ready to cancel this completely because I am not getting information."  Well that got his attention and I was given his personal cell and to call him anytime with questions - I did not use it but it was my 'ace' if I needed it and I was not afraid to use it.

I don't know if it was because it was such a big hospital, in a large metropolitan area I did sometimes see the same chemo nurses sometime, but kept a list of their names who gave me treatment so I could give them all something after I was done. 

Again, I would recommend a call to the gyn onc's office.  Tell them how distressing this is and is not giving you comfort that this is a good plan for you.   

Nellasing
Posts: 529
Joined: Oct 2016

I hope that you are sound asleep and having sweet dreams by this time.  Just wanted to drop you some love and let you know that you aren't crazy!  It is so reassuring to have a set schedule and start moving forward in your mind and to have a sudden stop due to change- it kind of causes the nerves to kick full up and those old fears to come looming in for another go at us.  Don't let it get you- turn around and face it because what I've found is if I stop and face it - nothing really has changed- it might look a little different or be up in the air but I am ok- I am safe- I am still on the same path and it will all work out.  Someone shared with me that FEAR is False Evidence Appearing Real and that helped me a lot!!!  Timing is sometimes changed for a reason and I have learned in my oh so well planned little brain that it's OK and that it will all work out as it should.  Don't know if this makes sense or helps but for whatever it's worth those are my thoughts. (((HUGS)))

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

NTFC and Nell - I did finally get to sleep . I think the problem is the PICC line. At first they said it would stay in for the 9 weeks; then the person who does it said protocol had changed and they remove every time. Now I bet the doc said it stays in. Anyway, I did send an email that said call me Monday or delay the start until I know what is what. I am a terrible nurse and not sure I am up to flushing the line 2 times a day so am wondering if I should just let them use my tired old veins. Any way, I have now talked myself into being calm and waiting for Monday to work it out.    

Any of you have a PICC?

Faye

CheeseQueen57's picture
CheeseQueen57
Posts: 819
Joined: Feb 2016

It just might make things easier and more comfortable for you. My opinion about the changes might be those infusion rooms are so busy and they are having new people all the time. And having to change schedules all the time for people who have had complications. I went to a major cancer hospital and despite that I got to know the infusion nurses really well plus I took them homemade muffins every week so they would remember me especially.  Hopefully once you get your first treatment and you are familiar with the setting you will feel better  

 

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

Will get my cookies baking!!  Since they want to leave the port in for months after I finish the 3 sessions, I did not opt for a port. Hopefully things will be clearer on Monday.

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

i have had one for a long time now and most of the time I don't even notice it. I guess it I wore a really low cut top it would show, but at my age I can't see that happening.  It takes no time to access. Only a pin prick, but some have it numbed before.  It has saved my veins and all the problems that can go with that.  Also they can be used for blood draws and even for the contrast dye the use for CTscans.

i know how you feel about the appointment.  I like to have all my ducks in a row and had a really good infusion/oncologist visit schedule,  now that I had to have 18 radiation sessions it messed that all up.

Hugs and prayers, Lou Ann

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

I've had my port for a little over a year and have had no problem with it. I barely notice that it is there. I plan to keep it in for as long as the doctor says I should. Actually reoccurrence is always on my mind and I would rather have it in than taken out and have to have it put back in later.

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