OK, now i'm freaking out

Dr office just called to confirm my follow up surgery appt on Monday 10/24 and my chemo starts 10/25.  I don't even have my path report yet, starting chemo so soon is giving me the idea that my report is extremely bad!!!  Maryanne

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Comments

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited October 2016 #2
    Don't freak out

    Some doctors begin chemo earlier than others.  Two weeks after surgery sounds a little soon to me as they generally like you to be pretty much healed from the surgery, but I don't think it really indicates that your path report is bad.

    When I saw my gyn/onc at 3 weeks post-op, he indicated that he wanted to start chemo as soon as it could be scheduled.

    However, one day between post-op and chemo doesn't seem like much time for you to ask questions.  I had an orientation and a port put in before chemo and none of that happened until after my post-op. Maybe some others can chime in as to how far after surgery their chemo began. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Maryanne, My surgeon wanted

    Maryanne, My surgeon wanted me to start chemo within 3 weeks of my surgery. He said they have found it to be the most effective that way. Mine was scheduled very quickly too. Also, you might want to consider getting an anit-anxiety med to help you in all of the up-front processes.  I was never one to take any pills and my sister talked me into getting Lorazapam. I'm so glad she did. It helped me when I needed it. I never even finished the first full prescription so I can tell you from first hand experience that you won't get hooked. I now use it sometimes to help me sleep. For some reason, it seems to help my night sweats and relaxes my body.

    My niece had a complete hysterectomy at age 35 for cervical cancer. She went into surgery induced menopause which caused all kinds of emotional issues. She went on anti-anxiety meds for about 6 months to get her through the hard part. She is now 40, doing great and thriving.

    I hope this helps.  Hang in there! You will get through this...

    Love and Hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 789
    Maryanne, so sorry that they

    Maryanne, so sorry that they scared you like that. You should mention it to them at the post-op visit. They should never give you news like that over the phone. You can also ask them to reschedule the chemo to a later time so that you have a chance to decide what YOU want to do. I ended up getting a second and then a third opinion on my diagnosis before starting any treatment (although I did go ahead and have the port installed). Don't let them rush you into anything. You have rights as a patient. Having a full understanding of what it is they're recommending before you agree to it is one of those.  

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited October 2016 #5
    Breathe....

    Hi Maryanne,

    I have found that once they have a direction to head they do it with all haste.  The report may or may not be bad but they now have it and have a direction so off you go...

    It is a lot to take in.  Besure you take someone with you to your appt on Monday because for me when they start reciting stats my mind starts to freeze and I can't think.  Having someone there (I took my hubby and best friend) and possibly recording (mine wouldn't allow it) can help you think things through after you hear it.

    We have to fight the urge to be totally upset all the time as it affects our immune systems.  When they say to think postive it seems impossible- I keep practicing that one Wink but we really do.  We need all the power we have not to fight FEAR =False Evidence Appearing Real but to face it, understand what we can (knowledge is power) and act in our own best interest.  One step at a time right?

    We've all been there and I so wish I could spare you.  What you are experiencing is normal and understandable and I am so glad that you have found this board as I didn't have it and sure wish I had!!!  I'm sure many others will have amazing responses to give you.

    Know we are sending our love and prayers - keep coming back- keep talking it out- keep facing each day just moment by moment if you have to- this is your own personal journey and you will find the way- I promise you are stronger and braver than you can even imagine!!!   (((HUGS)))

  • Mmpeterson
    Mmpeterson Member Posts: 124
    Kvdyson said:

    Maryanne, so sorry that they

    Maryanne, so sorry that they scared you like that. You should mention it to them at the post-op visit. They should never give you news like that over the phone. You can also ask them to reschedule the chemo to a later time so that you have a chance to decide what YOU want to do. I ended up getting a second and then a third opinion on my diagnosis before starting any treatment (although I did go ahead and have the port installed). Don't let them rush you into anything. You have rights as a patient. Having a full understanding of what it is they're recommending before you agree to it is one of those.  

    Did you ask your doctor you

    Did you ask your doctor you first went to who they would recommend?  I have no idea where to start to get a second opinion.  Maryanne 

  • janaes
    janaes Member Posts: 799 Member
    edited October 2016 #7
    I agree with Kim.  You have a

    I agree with Kim.  You have a right to make decisions. I had a tumor board done on my cancer and even after that i went to see one of the doctors that was at the tumor board and asked him questions. lots of them.  He was ready to sign me up for chemo at my appoinbtment but thankfully my dad told him that i was going to do a possible third opinion first. It wasnt until i saw my pathology report after that appointment and understood it that i was able to think about chemo. Thats just what happened to me.

    With peace and love,

    Janae

  • rcdeman
    rcdeman Member Posts: 263 Member
    Sorry to hear that everything

    Sorry to hear that everything seems to be going too quickly for you, Maryanne. It's a lot to take in, and I second the opinion that you might want to look for a second opinion. I would ask your doctor for any colleagues who also specialize in this area if you don't have anyone in mind. While my mom has seemed to experience the opposite as you in which everything seems to be going extremely slowly (she had her hysterectomy on 8/30, and now hasn't even started chemo yet), I can totally understand your panic. If you need more time to think about this, maybe you can ask to postpone the chemo start date.

    Best,
    Rebecca

  • LindyLu
    LindyLu Member Posts: 72
    edited October 2016 #9
    Here's what I did

    Hi Maryanne,

    Don't know if this helps, but here's my experience.  

    My post-op which included staging results from PET scan was 2 1/2 weeks after surgery.  Doc wanted me to heal more and do a couple more follow-up tests before starting chemo.  My chemo started six weeks out.  However, it was initially scheduled at week five, one day after my pre-chemo informational session.  I freaked out as I hadn't had my port put in yet and would have no time to prepare.  Because I was so upset, my first chemo was rescheduled for a week later.  I am so glad.  That extra week gave my hubby and I a chance to digest all the info given to us during the pre-chemo appointment and I had my port put in two days before getting my first treatment.  I felt more in control and calmer at that first chemo  (10 days ago and doing well).  So don't panic thinking the worst because things are moving so quickly, but don't hesitate to slow things down, ask questions, if you feel like you need more time.

    If there's one thing I've learned, it's everyone and every situation is different.  Do what feels right for you.  Hugs  ~~LL

     

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    I think we all have the

    I think we all have the tendency to worry about anything we don't understand. Since you don't know why they scheduled the two events so close together,  don't waste any of your prescious time worrying(easier said then done).  There could be so many reasons, including a scheduler who had a open date to get you in.  My first time around,  I had my staples taken out by my gynecologist at week two, saw my gyno-Onc/ surgeon at week three, met with my,1st medical oncologist a few days later and started chemo at week 4.  The scheduler at my 1st oncologist always complained about finding a spot for me.

    Hugs and prayers, Lou Ann

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited October 2016 #11
    Quick timeline not necessarily unusual

    I was sent home from the hospital with both a drainage tube and a urinary catheter. They took them out along with the line of staples up my belly when I went for my post-op appointment and sent me from there directly to the infusion room for my first chemo. My port had been put in just two days before that and my onc wanted to send my tissues to a 3rd lab because there was some disagreement between the first two labs, so my final staging was still up in the air.  

    The chemo nurses told me that if they had their way, most onc doctors would start chemo before sending us home from the hospital so don't read more into their hurry than that they just like to move things along quickly. It's probably for our own good so that there's less time for anxiety to build before the first treatment. It's so easy to imagine it being worse than it ultimately turns out to be before you get the first one behind you and know better what to expect. You'll be ok unless you imagine that you won't be and give yourself a nervous breakdown.

    There's a saying "don't borrow trouble" that applies here. If you really can't do that, then I agree it wouldn't hurt to get some help coping with your anxiety because it just doesn't help. You need calm and the ability to rest to both recover from the surgery and to handle when chemo starts.

     

  • Mmpeterson
    Mmpeterson Member Posts: 124
    MAbound said:

    Quick timeline not necessarily unusual

    I was sent home from the hospital with both a drainage tube and a urinary catheter. They took them out along with the line of staples up my belly when I went for my post-op appointment and sent me from there directly to the infusion room for my first chemo. My port had been put in just two days before that and my onc wanted to send my tissues to a 3rd lab because there was some disagreement between the first two labs, so my final staging was still up in the air.  

    The chemo nurses told me that if they had their way, most onc doctors would start chemo before sending us home from the hospital so don't read more into their hurry than that they just like to move things along quickly. It's probably for our own good so that there's less time for anxiety to build before the first treatment. It's so easy to imagine it being worse than it ultimately turns out to be before you get the first one behind you and know better what to expect. You'll be ok unless you imagine that you won't be and give yourself a nervous breakdown.

    There's a saying "don't borrow trouble" that applies here. If you really can't do that, then I agree it wouldn't hurt to get some help coping with your anxiety because it just doesn't help. You need calm and the ability to rest to both recover from the surgery and to handle when chemo starts.

     

    My primary doctor prescribed

    My primary doctor prescribed Lexapro which I just picked up tonight.  I am going to call my onc office Monday to see if they can get the port in next week.  The nurse told me today that they can do the first treatment without it but I'm going to try to get it before the 25th.  Sorry for the mental breakdown, it just seems like everything closes in and then I panic.  Maryanne 

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member

    My primary doctor prescribed

    My primary doctor prescribed Lexapro which I just picked up tonight.  I am going to call my onc office Monday to see if they can get the port in next week.  The nurse told me today that they can do the first treatment without it but I'm going to try to get it before the 25th.  Sorry for the mental breakdown, it just seems like everything closes in and then I panic.  Maryanne 

    You don't need to be sorry

    You don't need to be sorry you are entitled to be upset scream, cry, vent here, what every you need to do to get through. We all have,days like tha, that cause excess worry.

    Hugs and prayers, Lou Ann

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited October 2016 #14

    My primary doctor prescribed

    My primary doctor prescribed Lexapro which I just picked up tonight.  I am going to call my onc office Monday to see if they can get the port in next week.  The nurse told me today that they can do the first treatment without it but I'm going to try to get it before the 25th.  Sorry for the mental breakdown, it just seems like everything closes in and then I panic.  Maryanne 

    No apolagizing

    I agree with Lou Ann. This site is a no apology zone. We're all coping with a lot and believe me we understand when one of us needs to vent or "lose it" from time to time. Happens to us all and this is our safe place to do it and get the help we need to deal with it. It's therapeutic and you never know who else you help in the process of sharing what's going on with you.

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited October 2016 #15

    My primary doctor prescribed

    My primary doctor prescribed Lexapro which I just picked up tonight.  I am going to call my onc office Monday to see if they can get the port in next week.  The nurse told me today that they can do the first treatment without it but I'm going to try to get it before the 25th.  Sorry for the mental breakdown, it just seems like everything closes in and then I panic.  Maryanne 

    Port

    I am so glad you are getting a port- don't worry IF you can't have it for the 1st one- the nurses are awesome.  I didn't get my port right away and it got unbearable to be stuck- something made me extra sensitive.  Even though mine hurt quite a bit at first I decided to think of it as my buddy and it's going to stay right where it is til I am WELL past all this- I am SO thankful for it- they can do everything through it- draw blood- give treatments- it's such a relief to me!!  I hope you find yours will be too.  

    We all panic from time to time- we are human and these are very real things happening... I try to remember that no amount of worry or panic will change things- wont make it better and will make me nuts in the meantime.  Sleep and distraction help me and really really focusing on the fact that this is the day I have- what I make of it is what the day will consist of.... they get more and more precious as you look into the possibilies.  I dig deep and look for each blessing and miracle.  Enjoy each scent, color, touch.  Life is precious and we should all live these days like they are treasures. 

    You will find your way- you will and these days are stressful and uncertain but we are here for you and walk along with you Kiss  (((HUGS))) as many as you need on as many days as you need

  • Soup52
    Soup52 Member Posts: 908 Member
    edited October 2016 #16
    I didn't have my port until

    I didn't have my port until my second infusion either and everything went fine. I hope you get some answers soon. I don't know why I had radiation before chemo, but one of my friends had the same protoco.

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    edited October 2016 #17
    Try not to worry.  Breathe. 

    Try not to worry.  Breathe.  I received my Pathology report when I had my meeting with Dr, Lea.  She had a copy for me then posted it after the meeting on My Chart,  She has to review it with you to explain what is on there.  My guess is that she is doing the chemo the same two day period you are in Dallas because you live 5 hours away and did not what you to make two trips in two weeks.  My guess only.  I had surgery, 2 weeks later went in to remove drainage bags and staples.  Bags removed but not staples. One week later went in to have staples removed. One week later port put in then started chemo.   But I live here in Dallas.  How are you doing otherwise?  It has been a week now since the surgery.  Are you healing and feeling better?  Do you have some one that is coming to Dallas with you on the 24 and 25th?  If you need someone to sit with you during the chemo let me know I can take off from work.  Let me know. trish

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    edited October 2016 #18
    A lot of my scheduling

    A lot of my scheduling depended on how close I was to the hospital.  There were women coming from the upper peninsula of Michigan who had to drive hours and hours to get to the cancer center - I had a 10 minute drive.  They always asked me how close I was when they scheduled me so if I was farther away, they could bundle - port installed in the morning; chemo in the afternoon.  I had my hysterectomy on September 30th, port installed October 26, first chemo on October 27th.  My oncologist said his goal is to start chemo within a month of the hysterectomy.

    However, I certainly know how you feel!!  It seems like our mind needs a little time to digest everything that's going on.  Don't they always tell women who lose their husbands not to make any major decisions for a year to get over the shock/grief/depression??  Well, if getting a diagnosis of cancer isn't a major shock, I'd like to know what is!!  Yet, they force us to make major decisions within weeks....even DAYS of that news!!  

    I agree with the other ladies - if you're not satisfied, get a second or even a third opinion.  I never felt like I was a part of the process with my gyno/oncologist.  Until I found my GP who, I felt was in MY corner, I just did as I was told.  If I had, I'd probably be dead now!  Listen to yourself because nobody knows more about YOU than YOU!!

    Love,

    Eldri

  • Mmpeterson
    Mmpeterson Member Posts: 124

    Try not to worry.  Breathe. 

    Try not to worry.  Breathe.  I received my Pathology report when I had my meeting with Dr, Lea.  She had a copy for me then posted it after the meeting on My Chart,  She has to review it with you to explain what is on there.  My guess is that she is doing the chemo the same two day period you are in Dallas because you live 5 hours away and did not what you to make two trips in two weeks.  My guess only.  I had surgery, 2 weeks later went in to remove drainage bags and staples.  Bags removed but not staples. One week later went in to have staples removed. One week later port put in then started chemo.   But I live here in Dallas.  How are you doing otherwise?  It has been a week now since the surgery.  Are you healing and feeling better?  Do you have some one that is coming to Dallas with you on the 24 and 25th?  If you need someone to sit with you during the chemo let me know I can take off from work.  Let me know. trish

    Hey Trish - I talked to Dr

    Hey Trish - I talked to Dr Lea's nurse yesterday and the dr wanted me to start chemo the week I will see her so since we are 5 hrs away her nurse thought it best to schedule the next day.  Makes sense and also she told me that they can do one session without the port then have the port put in before the 2nd one.  So far healing good.  I was released Monday.  Taking off covering over incision today and stopped taking the pain meds Wed.  Taking Tylenol no pain just some soreness yet.  No staples just dissolving stiches. She did get all the "bad stuff" out during surgery that she could see and it took about 5 1/2 hrs.  She saw a small fatty mass between my colon and bowel, she had a surgeon come in to remove it and both the surgeons said it didn't have any characteristics of cancer so praying it will come back benign.  She said one of my lymph nodes was pretty bad but not the other one.  Due to the high grade kind her surgical assistant said that Dr Lea wanted to start chemo asap.  My primary dr prescribed Lexapro to get the anxiety and panic attacks under control and took the first one last night so I could finally sleep.    If the chemo will save my life and get rid of any other bad cells then I am all for it.  Nurses were surprised I was walking the halls on Sunday and Monday but sitting around isn't my idea of healing.  My fiance is coming with me but I would like to meet you soon.  Thank you for offering to sit with me, one day I will take you up on that.  Many hugs, Maryanne

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    edited October 2016 #20

    Hey Trish - I talked to Dr

    Hey Trish - I talked to Dr Lea's nurse yesterday and the dr wanted me to start chemo the week I will see her so since we are 5 hrs away her nurse thought it best to schedule the next day.  Makes sense and also she told me that they can do one session without the port then have the port put in before the 2nd one.  So far healing good.  I was released Monday.  Taking off covering over incision today and stopped taking the pain meds Wed.  Taking Tylenol no pain just some soreness yet.  No staples just dissolving stiches. She did get all the "bad stuff" out during surgery that she could see and it took about 5 1/2 hrs.  She saw a small fatty mass between my colon and bowel, she had a surgeon come in to remove it and both the surgeons said it didn't have any characteristics of cancer so praying it will come back benign.  She said one of my lymph nodes was pretty bad but not the other one.  Due to the high grade kind her surgical assistant said that Dr Lea wanted to start chemo asap.  My primary dr prescribed Lexapro to get the anxiety and panic attacks under control and took the first one last night so I could finally sleep.    If the chemo will save my life and get rid of any other bad cells then I am all for it.  Nurses were surprised I was walking the halls on Sunday and Monday but sitting around isn't my idea of healing.  My fiance is coming with me but I would like to meet you soon.  Thank you for offering to sit with me, one day I will take you up on that.  Many hugs, Maryanne

    I said that maybe they did

    I said that maybe they did not want you having to drive back  and forth so much. Purple.butterfly50@sbcglobalthe dr will give you the information on the 24th and she will explain options and give suggestions.  At least she did for me. She asked if I wanted to join a trial and gave me all the paperwork to take home and read.  I did and I decided to not do the trial but go with her recommendation to do carbo and taxal chemo treatments only. I did six every 21 days. It must have worked for me cause I am still here with no recurrence.  Do I think it is gone, somewhat but the thought is still in the back of my mind I just do not dwell on it. Praying for a good outcome on your report and cancer journey. Trish

  • Kvdyson
    Kvdyson Member Posts: 789

    Did you ask your doctor you

    Did you ask your doctor you first went to who they would recommend?  I have no idea where to start to get a second opinion.  Maryanne 

    No, but there is an NCI

    No, but there is an NCI-Designated Cancer Center nearby me so I told my gyn-onc I was going there (Moffitt) for a second opinion. He was perfectly fine with it.

    I would start with a call to an NCI-Designated Cancer Center near you. They may not even need you to visit, they may just need the pathology slides sent to them. That's what happened to me with the third opinion - just slides, no appointment.