Scared, numb

MaryVig
MaryVig Member Posts: 37

i have been diagnosed as Stage 1C clear cell carcinoma (Ort's surgery removed right ovary, cancer found, full hysterectomy/staging a week ago, no other cancer found - although a nodule on my thyroid seen).  My oncologist wants me to have chemo as a protective measure. I have a tendency to freeze up with medical stuff... and i think he said they want me to do at least half or more, if I can tolerate it. A platinum chemo with taxol. I think I am less afraid of the chemo than the port they want to install on Friday. The port makes it all too real and I am afraid of having to care for a Port. 

I would love to hear the experiences of others with this diseease. What can I expect as a quality of life During and after chemo. Frequency of follow up.

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,368 Member
    edited February 2017 #2
    Miss Mary, YES it is scary.

    Miss Mary, YES it is scary.  You are allowed to feel that and many more emotions.  

    I did not have ovarian, I am a visitor from the Uterine board, but uterine papillary serous carcinoma (UPSC) is an agressive form of uterine and treated as they do ovarian patients.  My UPSC was staged at 1A - early is good - and had the full treatment.   I had the carboplatin and taxol treatment, 6 chemos, one every three weeks.  It is doable.  You are scared but you can do it.  I did have 25 external radiation and 3 internal (brachytherapy) radiation treatments in the middle of the 6.

    After surgery I worked the entire time through payment - except for the whole day chemo treatment.  (I have a manager office job)  

    I would recommend not getting to far ahead of yourself -- this is a process and taking one step at a time.  It doesn't make it any less scary but you are going to AMAZE yourself - I promise.  

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    Mary~You will love your Medi-port! Go for it.

     Hello Mary,

     Welcome to the “World of Scary”—you’re not alone—you are in good company!  For now all I will say is please don’t be afraid to have the medi-port.  It will be your best friend throughout all your treatments.  It’s always better to have an “early stage” of any kind of cancer if one has a cancer diagnosis.  Knowing as much as I do now about chemotherapy, even with the side affects you will have, and they vary from person to person, believe me you want the medi-port.  So for your information, I’ve included some web links and some videos that will help you.  Sure we “veterans” can TELL you, but you won’t really understand until you experience it for yourself.

      So all I will say for now is that as soon as I was told I needed neo-adjuvant chemotherapy before any kind of potential surgery, the first thing I asked for was a medi-port.  Sometimes it’s called a porta-cath, sometimes a Bard-port, but they are all the same.  Some ports have only one opening, others have two—mine was a “double lumen.”  I didn’t want to frighten you by showing you a video of an actual procedure where the radiologist is inserting the catheter.  I am giving you a video that tells you how much the patients like it.  Having a needle stuck in my vein in the hand for 6 or 7 hours (length of my chemo infusion sessions) would be awful. 

     I am one person that has had 3 different sessions of Carboplatin/Taxol in the last 4 years. (Each session consists of 6 treatments each 3 weeks apart.)  You will not regret having the port.  It’s just the “unknown” and “first-time” worries—and they are all normal.  You will get used to it.  I would always opt for chemo treatments if the doctor recommended it.  Lastly, I answered a fellow named Brian, who wanted to know things that might be helpful since his mother was beginning chemo.  So I put that link here as well.

     So I say, “GO FOR IT MARY!”

     Wishing you all the best.

     Loretta Marshall/ Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

     _____________________________________________________________

    1.   https://www.youtube.com/watch?v=v2Rw-oJwfOk

     “Published on Mar 3, 2014- Port for chemotherapy: girlfriend tips and explanation of its role and what to expect. Best medical device ever!”

     _______________________________________________

     2.   https://www.youtube.com/watch?v=fVUhVkx-hjc

     “Published on Mar 11, 2013 -  Starting chemotherapy treatment can feel scary and overwhelming. Hear from Joanna, a breast cancer patient, who describes her initial fears and talks about what the experience of receiving chemotherapy was actually like at Dana-Farber Cancer Institute. Learn more about the chemotherapy process at http://www.dana-farber.org/Adult-Care....”

     ________________________________________________________________

     3.  https://www.youtube.com/watch?v=FiDQAfF2TKc

     How a Portacath is used for Chemotherapy Treatment

     ___________________________________________

     4.  https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

     “Your Implanted Port - This information explains your implanted port and how to care for it. - About Your Implanted Port

     An implanted port (also known as a “port”) is like an artificial vein. It will make it easier for your healthcare team to access your blood vessels for medications and tests.

     The port has many uses. It may be used to:

    •  Give you intravenous (IV) medication.
    • Give you IV fluids.
    • Draw blood for tests.
    • Give you chemotherapy continuously for several days. Sometimes, chemotherapy must be given in a vein larger than the ones in your arms. The port allows the medication to be delivered into your bloodstream through a large vein near your heart.

     Some ports are specially designed for use during imaging studies, such as computed tomography (CT) scans. These are called “power-injectable” ports. Your doctor will let you know if you have a power-injectable port…”

     _______________________________________________

     5.  http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx

     Info about Carboplatin and side effects

     ___________________________________________

     6.  http://www.chemocare.com/chemotherapy/drug-info/Taxol.aspx

     Info about Taxol

     ________________________________________________

     7.  http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/paclitaxelcarboplatin.aspx

     “Paclitaxel and carboplatin (Taxol/Carbo) chemotherapy

     Paclitaxel (Taxol ®) and carboplatin (also known as Taxol/Carbo), is a chemotherapy treatment used to treat different cancers including ovarianwomb and lung cancer…”

     __________________________________________________

     8.  https://www.ncbi.nlm.nih.gov/pubmed/22398705

     “Adjuvant chemotherapy for stage I clear cell carcinoma of the ovary: an analysis of fully staged patients…

     RESULTS:

     Of the total (73 patients), 30 patients received adjuvant chemotherapy (stage I C-positive), whereas 43 patients did not (stage I C-negative). The 5-year progression-free survival (PFS) and 5-year overall survival (OS) rates for the stage I C-positive group were 80.1% and 87.4% compared with 73.9% and 81.7% for the stage I C-negative group.

      The differences in survival between these groups were not significant (PFS: P = 0.610; OS: P = 0.557). Four of the patients with stage IA CCC underwent chemotherapy, whereas the remaining 16 patients received no additional therapy. No recurrence was observed in either group…”

     ________________________________________________________

     9.  http://csn.cancer.org/comment/1569219#comment-1569219

     This a letter I recently sent to ACarmenHall.  It is information about the same type cancer that you have, Clear Cell Carcinoma.  So rather than repeat that long letter, you may find information that will be helpful to you.

     ____________________________________________________
    10.  http://csn.cancer.org/node/301646

     “BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!”

     _______________________End of references____________________

     

  • MaryVig
    MaryVig Member Posts: 37
    edited February 2017 #4

    Mary~You will love your Medi-port! Go for it.

     Hello Mary,

     Welcome to the “World of Scary”—you’re not alone—you are in good company!  For now all I will say is please don’t be afraid to have the medi-port.  It will be your best friend throughout all your treatments.  It’s always better to have an “early stage” of any kind of cancer if one has a cancer diagnosis.  Knowing as much as I do now about chemotherapy, even with the side affects you will have, and they vary from person to person, believe me you want the medi-port.  So for your information, I’ve included some web links and some videos that will help you.  Sure we “veterans” can TELL you, but you won’t really understand until you experience it for yourself.

      So all I will say for now is that as soon as I was told I needed neo-adjuvant chemotherapy before any kind of potential surgery, the first thing I asked for was a medi-port.  Sometimes it’s called a porta-cath, sometimes a Bard-port, but they are all the same.  Some ports have only one opening, others have two—mine was a “double lumen.”  I didn’t want to frighten you by showing you a video of an actual procedure where the radiologist is inserting the catheter.  I am giving you a video that tells you how much the patients like it.  Having a needle stuck in my vein in the hand for 6 or 7 hours (length of my chemo infusion sessions) would be awful. 

     I am one person that has had 3 different sessions of Carboplatin/Taxol in the last 4 years. (Each session consists of 6 treatments each 3 weeks apart.)  You will not regret having the port.  It’s just the “unknown” and “first-time” worries—and they are all normal.  You will get used to it.  I would always opt for chemo treatments if the doctor recommended it.  Lastly, I answered a fellow named Brian, who wanted to know things that might be helpful since his mother was beginning chemo.  So I put that link here as well.

     So I say, “GO FOR IT MARY!”

     Wishing you all the best.

     Loretta Marshall/ Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

     _____________________________________________________________

    1.   https://www.youtube.com/watch?v=v2Rw-oJwfOk

     “Published on Mar 3, 2014- Port for chemotherapy: girlfriend tips and explanation of its role and what to expect. Best medical device ever!”

     _______________________________________________

     2.   https://www.youtube.com/watch?v=fVUhVkx-hjc

     “Published on Mar 11, 2013 -  Starting chemotherapy treatment can feel scary and overwhelming. Hear from Joanna, a breast cancer patient, who describes her initial fears and talks about what the experience of receiving chemotherapy was actually like at Dana-Farber Cancer Institute. Learn more about the chemotherapy process at http://www.dana-farber.org/Adult-Care....”

     ________________________________________________________________

     3.  https://www.youtube.com/watch?v=FiDQAfF2TKc

     How a Portacath is used for Chemotherapy Treatment

     ___________________________________________

     4.  https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

     “Your Implanted Port - This information explains your implanted port and how to care for it. - About Your Implanted Port

     An implanted port (also known as a “port”) is like an artificial vein. It will make it easier for your healthcare team to access your blood vessels for medications and tests.

     The port has many uses. It may be used to:

    •  Give you intravenous (IV) medication.
    • Give you IV fluids.
    • Draw blood for tests.
    • Give you chemotherapy continuously for several days. Sometimes, chemotherapy must be given in a vein larger than the ones in your arms. The port allows the medication to be delivered into your bloodstream through a large vein near your heart.

     Some ports are specially designed for use during imaging studies, such as computed tomography (CT) scans. These are called “power-injectable” ports. Your doctor will let you know if you have a power-injectable port…”

     _______________________________________________

     5.  http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx

     Info about Carboplatin and side effects

     ___________________________________________

     6.  http://www.chemocare.com/chemotherapy/drug-info/Taxol.aspx

     Info about Taxol

     ________________________________________________

     7.  http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/paclitaxelcarboplatin.aspx

     “Paclitaxel and carboplatin (Taxol/Carbo) chemotherapy

     Paclitaxel (Taxol ®) and carboplatin (also known as Taxol/Carbo), is a chemotherapy treatment used to treat different cancers including ovarianwomb and lung cancer…”

     __________________________________________________

     8.  https://www.ncbi.nlm.nih.gov/pubmed/22398705

     “Adjuvant chemotherapy for stage I clear cell carcinoma of the ovary: an analysis of fully staged patients…

     RESULTS:

     Of the total (73 patients), 30 patients received adjuvant chemotherapy (stage I C-positive), whereas 43 patients did not (stage I C-negative). The 5-year progression-free survival (PFS) and 5-year overall survival (OS) rates for the stage I C-positive group were 80.1% and 87.4% compared with 73.9% and 81.7% for the stage I C-negative group.

      The differences in survival between these groups were not significant (PFS: P = 0.610; OS: P = 0.557). Four of the patients with stage IA CCC underwent chemotherapy, whereas the remaining 16 patients received no additional therapy. No recurrence was observed in either group…”

     ________________________________________________________

     9.  http://csn.cancer.org/comment/1569219#comment-1569219

     This a letter I recently sent to ACarmenHall.  It is information about the same type cancer that you have, Clear Cell Carcinoma.  So rather than repeat that long letter, you may find information that will be helpful to you.

     ____________________________________________________
    10.  http://csn.cancer.org/node/301646

     “BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!”

     _______________________End of references____________________

     

    Thanks

    Thank you NoTimeForCancer and Loretta. I am 60, single, and live alone. This is pretty intimidating especially when you don't have a huge support system. I am self employed so I am scared on so many levels right now. I know I need to take this one day at a time... thanks for the encouragement. I dont have a schedule yet for chemo but the port is scheduled foR 5 days from now. In the interim I am trying to sort out a nodule they found in the CT scan on my thyroid. Gyno-oncologist sez thyroid is not his specialty, so I'm trying to find a Dr to determine what needs to be done there. I appreciate the support here.

  • Soup52
    Soup52 Member Posts: 908 Member
    edited February 2017 #5
    Hi Mary! I'm a visitor from

    Hi Mary! I'm a visitor from the uterine board also. I don't have much to add as Loretta and No time have covered a lot. Just to say I have a power port and it has given me no problems. I really kind of forget it is there. My treatments for clear cell 3C ended in June, but I still have my port even though I am presently clear after a Ct scan. I would rather keep it than have it removed and possibly put back should I have a reoccurrence. Chin up! Yes, it's scary, but chemo is doable. Best of luck! You're in our prayers!

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

    i am also from the Uterine board. I am so glad that I have a port, actually I am on my second one.  I stupidly had the first removed after front line treatmnet.  Seven months later I had a recurrence and had to have a new one put in.  No big deal. It stings a little at first, but now I hardly remember that it is there.  It is used for all blood work, my infusions and even for the dye they use for CT scans.  Makes my life so much simple.  Hugs and prayers, Lou Ann

  • abrub
    abrub Member Posts: 2,174 Member
    Yes, the port makes it very real

    so I understand your fears completely.  I sat and sobbed when I went for my first chemo treatment.  My dr sat with me for a half an hour before I'd let them start chemo - it was too real.

    As others have said, the port makes life so much easier.  I haven't read everything here, but ask for Emla cream to numb the area over the port, and you won't feel the needle go in.  Leave it on for at least an hour beforehand (it only calls for half an hour.)  (And use lots of cream - it should be a thick coating, covered with plastic wrap to keep you shirt clean.  The nurses will wipe it off for you.)

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited February 2017 #8
    MaryVig

    I'm so sorry this is happening.  It is all very scary.  We all know exactly how you feel. 

    If I was in your shoes, I would want to consult with a gyn/onc who works at a teaching hospital.  I don't know who is currently handling your case, but I do know that those specialists who work at teaching hospitals have the latest information about various treatments and approaches.  I suggest this because your diagnosis is Clear Cell, which is not the common ovarian cancer most of us were diagnosed with.  Although the standard of care for ovarian cancer is Carbo/Taxol, doctors with the most current information may have some other option for Clear Cell.  

    You may also want to contact the Clearity Foundation to see if they have any insights about your diagnosis.  They are very friendly, helpful people who keep a database of the molecular profiles of various ovarian cancer tumors.  They may even be able to test your tumor and make recommendations regarding the most effective treatments.  http://www.clearityfoundation.org/

    Good luck

  • MaryVig
    MaryVig Member Posts: 37
    Tethys41 said:

    MaryVig

    I'm so sorry this is happening.  It is all very scary.  We all know exactly how you feel. 

    If I was in your shoes, I would want to consult with a gyn/onc who works at a teaching hospital.  I don't know who is currently handling your case, but I do know that those specialists who work at teaching hospitals have the latest information about various treatments and approaches.  I suggest this because your diagnosis is Clear Cell, which is not the common ovarian cancer most of us were diagnosed with.  Although the standard of care for ovarian cancer is Carbo/Taxol, doctors with the most current information may have some other option for Clear Cell.  

    You may also want to contact the Clearity Foundation to see if they have any insights about your diagnosis.  They are very friendly, helpful people who keep a database of the molecular profiles of various ovarian cancer tumors.  They may even be able to test your tumor and make recommendations regarding the most effective treatments.  http://www.clearityfoundation.org/

    Good luck

    Thanks.  Will look into these

    Thanks.  Will look into these.

  • MaryVig
    MaryVig Member Posts: 37
    Port in - very uncomfortable

    its saturday night and I had the port put in at 7am Friday. Thanks for the suggestion about the bra. The nurse drew an outline on my chest and the Dr put the port just outside the bra line. I guess because it's so new, it's really uncomfortable. It is far more uncomfortable than the two surgeries (1st took the ovary with the tumor and 2 weeks later after finding the cancer, a 2nd surgery/hysterectomy and staging). I start dose dense chemo (carbo/taxol) on Tuesday and given that the port site is very sore, I am even more fearful of the port. I just can't get comfortable in bed and my neck is very strained. I feel like I am whine-zing ... so my apologies to those who are much further down this path.

    I met with a naturopath to see if she had any suggestions about how to be protective of my health during chemo. She suggested many if the things I have read here plus taking fish oil. Anyone trying that?

    I asked her about travel and she encouraged me to avoid flying (which is a big part of my job, traveling to client cities). Has anyone else done much travel during chemo? After? I went through airport security today and was glad the port was not flagged (I have a replaced knee that is always flagged requiring the TSA"grope").

    thanks again everyone for your comments and support.

     

     

  • Soup52
    Soup52 Member Posts: 908 Member
    I put lidocaine on my port

    I put lidocaine on my port about a half hr before lab work and cover it with Saran Wrap. That helps take the sting out of the needle. I think after you have had the port for awhile it won't bother you so much. I hope anyway as that has been my experience. I traveled after my first chemo but by car. My husband gave me lovostat injections to prevent clots as chemo makes your blood thicker and I have had a blood clot many years ago.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,368 Member
    MaryVig said:

    Port in - very uncomfortable

    its saturday night and I had the port put in at 7am Friday. Thanks for the suggestion about the bra. The nurse drew an outline on my chest and the Dr put the port just outside the bra line. I guess because it's so new, it's really uncomfortable. It is far more uncomfortable than the two surgeries (1st took the ovary with the tumor and 2 weeks later after finding the cancer, a 2nd surgery/hysterectomy and staging). I start dose dense chemo (carbo/taxol) on Tuesday and given that the port site is very sore, I am even more fearful of the port. I just can't get comfortable in bed and my neck is very strained. I feel like I am whine-zing ... so my apologies to those who are much further down this path.

    I met with a naturopath to see if she had any suggestions about how to be protective of my health during chemo. She suggested many if the things I have read here plus taking fish oil. Anyone trying that?

    I asked her about travel and she encouraged me to avoid flying (which is a big part of my job, traveling to client cities). Has anyone else done much travel during chemo? After? I went through airport security today and was glad the port was not flagged (I have a replaced knee that is always flagged requiring the TSA"grope").

    thanks again everyone for your comments and support.

     

     

    Mary - I am single and live

    Mary - I am single and live alone.  I also work in the travel industry and traveled during my treatment.  Always the biggest concern would be catching' something with a weakened immune system during travel.  I was extremely careful of anyone who was sick.  I was always careful of what I touched - using my own pens to sign hotel confirmations, etc...I was very conscious not to touch my face or my eyes - little germies know how to travel, and I did ok.  As for TSA I would FLAT OUT TELL THEM you are in active cancer treatment and you request them to be careful.  

    I did not have a port but a woman I worked with - she has retired - would tell me about some of the things you have indicated as well.  I think she eventually got more 'used to it' than comfortable - so what you are saying is understandable.

    BTW - you are not whining.  You come to a group that KNOWS what you are going through and thank goodness for that!  Right?  Ask anything you want.

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    Kudos

    MaryVig,

    I am so happy to hear you are consulting with a naturopath.  That was the smartest thing I did.  Yes, fish oil is a common supplement, not only for cancer patients but for non-cancer patients as well.  I think one concern about flying is that sitting for long periods can increase your risk of blood clots.  Many cancer patients have thick blood already , which increases this risk.  Fish oil will help thin the blood some.  I hope you feel good enough to work while in treatment; I did not, but it's an individual thing.  The port will feel better in a week, or so.  It does hurt when it's first put in.

    Good luck

  • Editgrl
    Editgrl Member Posts: 903 Member
    Mary

    I used ibuprofen after my port was put in.  My doctor told me that if ibuprofen didn't make it feel better to let him know.  I also had to limit my range of motion for a while because it did hurt to move my arm in certain directions, but now I seldom even think about it.  My first chemo was a week after my port was in...  it still wasn't healed, but it wasn't bad at all.  I never used the lidocaine, but never found the process very painful.

    And I would be prepared to have the port flagged at the airport.  I've only flown once since having it in, but I was questioned about it. I explained what it was and  "flashed" them with it, and all was good.

    Good luck on Tuesday.

  • rejoycew
    rejoycew Member Posts: 36
    edited February 2017 #15
    no port, travel advice

    i had my port remove after surgery and having been having chemo without a port.  That is 6 months every 3 weeks of carbo/taxol, 10 weekly of Gemcitibine, 7 monthly treaments of doxil.  Nurses sometime have problems finding a vein, but most are experts.  That said, everyone is different. 

    I did not travel until the break between carbo/taxol and Gemcitibine. My Oncologist advised compression hose, mask, tylenol no aspirin, wipe down all surface when traveling on a plane. I have stayed well and no problem.  The one good thing about a mask, people avoid sitting next to you on the plane.

    I am one of the lucky ones, if you can call having "incurable" cancer,  I have had very few side effects and am enjoying a full happy life.  I pray the same for you.

  • bettyboop3917
    bettyboop3917 Member Posts: 45
    hi

    Hi I hope that by now your port is not hurting as much if at all. You may want to see if there is a ovain cancer group in your area. It can be a great place to find suport for you, and maybe able to line up a chemo buddy for you. That is some one to go to the treatments with you if not drive you. I know that my locle cancer connection has been wonderful for support for my husband and for me. They even came the day of my surgery to the hospital to see how my husband was and how I came through the surgery. The board here is full of people who just get it. Lets not forget the chat room on here too. I wish you luck in your fight.