Again, so soon? A new record?

124

Comments

  • SIROD
    SIROD Member Posts: 2,194 Member

    My plan, I think
    Hello all you wonderful and caring ladies.
    I apologize for not posting after surgery but I think I was too busy licking my wounds and feeling anxiety.
    When I went in to surgery I just had the highest hopes that even though the tumor had doubled in size in a few short weeks that it had been caught early enough so not to have spread beyond the sentinel nodes. Plus, the odds were on my side, right? Like they have been through any of my journey, right?
    My oncologist gave me such anxiety over the rush to get a PET scan and get on with treatment that I felt so overwhelmed and panicky. It was after I saw my dear surgeon (the one who almost killed me removing the port, who's a vascular specialist btw) that things seemed to take on the proper perspective. He could see no rush for the PET scan but was pleased I was having chemo. Plus the drains won't be coming out until this Thursday. I also feel better after calling the scan place and talking to the scheduler. She agreed that waiting also helps the results by not having so much surgery inflammation to pick up. Also there's no way I can get my arm to function after "the digging around" as my surgeon put it. Feels like he used a backhoe.
    So, here I sit in a holding pattern knowing that chemo and I'm sure rads are in my future. I'm made a decision not to have another port and will be doing it by IV. Thoughts and experiences on that would be appreciated. Who all has had a lymphadenectomy too? How long did it take to have any use of the arm without major pain and weirdness? I hate that popping and tugging feel when I try to lift my arm.
    Your friend and fellow Warrior,
    Lynne

    Lymph Nodes Dissections
    Hi Lynne,

    I am sorry that it wasn't what you had hoped it would be. However, it is what it is and you will go on from that point.

    Make certain that you do all the exercises for the arm that they gave you. Use the arm otherwise you will end up with a frozen shoulder and that really hurts. Your arm hurts as they might have cut a nerve and that can be very painful, lasting 6 weeks or more.

    I had two lymph node dissections. The first time with the mastectomy and they took level 1 nodes out. My then oncologist forgot to order radiation. I did have chemotherapy and then went on Tamoxifen. When I was diagnose in 1994, there was no internet with online discussion groups. I had Dr. Susan Love's Breast Book that did say that radiation is usually ordered for nodes that were positive. At that time, my oncologist intimidated me. So I didn't inquire figuring he must know if I needed radiation or not.

    Four 1/2 years later a large tumor was found in that area. I wanted the tumor out and had a 2nd lymph node dissection was performed removing all level 2 nodes and some level 3 nodes. I did have radiation that time as the tumor had wrapped itself around the auxiliary vein in the arm. I then developed neuropathy which I used Amitrityline and now Neurontin. I also had 4 bouts of cellulitis in that arm but never developed lymphedema.

    Wishing you well as you journey through this again,

    Doris
  • missrenee
    missrenee Member Posts: 2,136 Member
    SIROD said:

    Lymph Nodes Dissections
    Hi Lynne,

    I am sorry that it wasn't what you had hoped it would be. However, it is what it is and you will go on from that point.

    Make certain that you do all the exercises for the arm that they gave you. Use the arm otherwise you will end up with a frozen shoulder and that really hurts. Your arm hurts as they might have cut a nerve and that can be very painful, lasting 6 weeks or more.

    I had two lymph node dissections. The first time with the mastectomy and they took level 1 nodes out. My then oncologist forgot to order radiation. I did have chemotherapy and then went on Tamoxifen. When I was diagnose in 1994, there was no internet with online discussion groups. I had Dr. Susan Love's Breast Book that did say that radiation is usually ordered for nodes that were positive. At that time, my oncologist intimidated me. So I didn't inquire figuring he must know if I needed radiation or not.

    Four 1/2 years later a large tumor was found in that area. I wanted the tumor out and had a 2nd lymph node dissection was performed removing all level 2 nodes and some level 3 nodes. I did have radiation that time as the tumor had wrapped itself around the auxiliary vein in the arm. I then developed neuropathy which I used Amitrityline and now Neurontin. I also had 4 bouts of cellulitis in that arm but never developed lymphedema.

    Wishing you well as you journey through this again,

    Doris

    Hi Lynne
    I had a total axillary dissection in January of '10 (10 positive nodes out of the 22 removed). My drain stayed in for 5 weeks--my surgeon would not remove it until the drainage was less than 30 ml. for 3 consecutive days because he said if he did it too soon, I would wind up in his office on a daily basis getting it drained by him. Seemed like forever.

    Anyway, as soon as the drain was removed, I started chemo and rads followed. All of this was 2 years ago. I have had appts. with a certified lymph. spec., PT, been kinesio taped, did the exercises, and have a Flexitouch machine at home which gives a massage to move the fluid since I have no nodes in that underarm. I still have stiffness, swelling and pulling in the area and my guess is I probably always will. Some days are better than others. I also wear a glove and sleeve when I fly. This will be a lifelong issue, but since I was just diagnosed with bone mets early this year, it doesn't seem like such a big issue any more.

    My best to you, Lynne. It's a tough journey, but somehow we just keep putting one foot in front of the other.

    Hugs, Renee
  • New Flower
    New Flower Member Posts: 4,294
    missrenee said:

    Hi Lynne
    I had a total axillary dissection in January of '10 (10 positive nodes out of the 22 removed). My drain stayed in for 5 weeks--my surgeon would not remove it until the drainage was less than 30 ml. for 3 consecutive days because he said if he did it too soon, I would wind up in his office on a daily basis getting it drained by him. Seemed like forever.

    Anyway, as soon as the drain was removed, I started chemo and rads followed. All of this was 2 years ago. I have had appts. with a certified lymph. spec., PT, been kinesio taped, did the exercises, and have a Flexitouch machine at home which gives a massage to move the fluid since I have no nodes in that underarm. I still have stiffness, swelling and pulling in the area and my guess is I probably always will. Some days are better than others. I also wear a glove and sleeve when I fly. This will be a lifelong issue, but since I was just diagnosed with bone mets early this year, it doesn't seem like such a big issue any more.

    My best to you, Lynne. It's a tough journey, but somehow we just keep putting one foot in front of the other.

    Hugs, Renee

    Dear Lynn I am very sorry for your pain and suffering
    Lynn,
    I am very sorry. I know my story is not going to make you feel better or take away your pain. I have had auxiliary dissection in June 2008. My 21 nodes were removed and 10 were positive for malignancy. I also had a tumor 1.3x1.2 centimeters under my arm pit. My very good surgeon did not get clear margins doing lumpectomy. Mastectomy did not give a clear margins either and we have to go back again for re-excision of the remaining breast tissue. I have had 3 types of cancer in my breast and lobular was not detected on mammogram. It was a shock to everyone, including my doctors, to find 6.5 centimeters tumor in a breast of size 4 person , and final diagnosis stage IIIC at the age of 46.

    Anyway it took long time to gain a full range of motion on the affected side. I did use help of physical therapist, and have been doing exercises every day, some time twice a day. if you are determined to live a normal life and function, you will be able to do it. Please give yourself time and dedication. Ask your doctor when you can start stretches for your arm
    I do have lymphedema and see lymphedema therapist too.
    It seems like you are dissatisfied with your doctors. maybe it is a right time to look for a better ones. Second opinion is a good start to look for the best people. while our board is a very supportive, personal counseling could be beneficial too.
    Wishing you luck and success in your journey. Please remember there is alway a better day.
    Hugs
    New Flower
  • jnl
    jnl Member Posts: 3,869 Member

    My plan, I think
    Hello all you wonderful and caring ladies.
    I apologize for not posting after surgery but I think I was too busy licking my wounds and feeling anxiety.
    When I went in to surgery I just had the highest hopes that even though the tumor had doubled in size in a few short weeks that it had been caught early enough so not to have spread beyond the sentinel nodes. Plus, the odds were on my side, right? Like they have been through any of my journey, right?
    My oncologist gave me such anxiety over the rush to get a PET scan and get on with treatment that I felt so overwhelmed and panicky. It was after I saw my dear surgeon (the one who almost killed me removing the port, who's a vascular specialist btw) that things seemed to take on the proper perspective. He could see no rush for the PET scan but was pleased I was having chemo. Plus the drains won't be coming out until this Thursday. I also feel better after calling the scan place and talking to the scheduler. She agreed that waiting also helps the results by not having so much surgery inflammation to pick up. Also there's no way I can get my arm to function after "the digging around" as my surgeon put it. Feels like he used a backhoe.
    So, here I sit in a holding pattern knowing that chemo and I'm sure rads are in my future. I'm made a decision not to have another port and will be doing it by IV. Thoughts and experiences on that would be appreciated. Who all has had a lymphadenectomy too? How long did it take to have any use of the arm without major pain and weirdness? I hate that popping and tugging feel when I try to lift my arm.
    Your friend and fellow Warrior,
    Lynne

    I am so sorry Lynne. You
    I am so sorry Lynne. You have been through so much that I hate to see you have to go through more. Just know that I am thinking of you and praying.

    Thanks for posting,


    Leeza
  • Megan M
    Megan M Member Posts: 3,000

    My plan, I think
    Hello all you wonderful and caring ladies.
    I apologize for not posting after surgery but I think I was too busy licking my wounds and feeling anxiety.
    When I went in to surgery I just had the highest hopes that even though the tumor had doubled in size in a few short weeks that it had been caught early enough so not to have spread beyond the sentinel nodes. Plus, the odds were on my side, right? Like they have been through any of my journey, right?
    My oncologist gave me such anxiety over the rush to get a PET scan and get on with treatment that I felt so overwhelmed and panicky. It was after I saw my dear surgeon (the one who almost killed me removing the port, who's a vascular specialist btw) that things seemed to take on the proper perspective. He could see no rush for the PET scan but was pleased I was having chemo. Plus the drains won't be coming out until this Thursday. I also feel better after calling the scan place and talking to the scheduler. She agreed that waiting also helps the results by not having so much surgery inflammation to pick up. Also there's no way I can get my arm to function after "the digging around" as my surgeon put it. Feels like he used a backhoe.
    So, here I sit in a holding pattern knowing that chemo and I'm sure rads are in my future. I'm made a decision not to have another port and will be doing it by IV. Thoughts and experiences on that would be appreciated. Who all has had a lymphadenectomy too? How long did it take to have any use of the arm without major pain and weirdness? I hate that popping and tugging feel when I try to lift my arm.
    Your friend and fellow Warrior,
    Lynne

    I didn't have a port Lynne,
    I didn't have a port Lynne, so, I am not much help to you about giving you information, but, I know the other pink sisters will.

    I pray that soon you will be feeling better.

    Hugs, Megan
  • Alexis F
    Alexis F Member Posts: 3,598

    I just wanted to add my
    I just wanted to add my prayers and hugs. I am so sorry that you are going through this...especially so soon again.

    I am glad to see you posting
    I am glad to see you posting but so sorry for your report and news. I will be praying for you Lynne.
  • Lynne Logan
    Lynne Logan Member Posts: 105 Member
    Megan M said:

    I didn't have a port Lynne,
    I didn't have a port Lynne, so, I am not much help to you about giving you information, but, I know the other pink sisters will.

    I pray that soon you will be feeling better.

    Hugs, Megan

    No Port
    I think what I need is advice from those who chose not to go with the port. I've not had that many IV's in my life but the 3 I've had during the last 10 months didn't seem too uncomfortable. I'm wondering what it's like to go through probably 6 infusions by IV. The port was a "thorn in my side" from the beginning. It caused me such discomfort, even aching....I still have some discomfort after 4 months, although it's pretty much over shadowed by the new surgery.
    I've had chronic sore muscles in my back since almost a month before my May 8th surgery. On Friday I woke up with "The Claw' and wept into my breakfast. I'm pretty stoic when it comes to pain but this was too much. It's not like a muscle spasm, just a constant cramp. I know this inflammation will show up on the PET scan I still haven't had due to my arm still not raising high enough. It seems if it's not one thing, something else pops up. The one good thing? Stronger pain meds for my back have allowed me at times to raise my arm high enough I think I could do the scan. After someone carried me to it. ;-}
    Hugs to all,
    Lynne
  • Lynne Logan
    Lynne Logan Member Posts: 105 Member
    missrenee said:

    Hi Lynne
    I had a total axillary dissection in January of '10 (10 positive nodes out of the 22 removed). My drain stayed in for 5 weeks--my surgeon would not remove it until the drainage was less than 30 ml. for 3 consecutive days because he said if he did it too soon, I would wind up in his office on a daily basis getting it drained by him. Seemed like forever.

    Anyway, as soon as the drain was removed, I started chemo and rads followed. All of this was 2 years ago. I have had appts. with a certified lymph. spec., PT, been kinesio taped, did the exercises, and have a Flexitouch machine at home which gives a massage to move the fluid since I have no nodes in that underarm. I still have stiffness, swelling and pulling in the area and my guess is I probably always will. Some days are better than others. I also wear a glove and sleeve when I fly. This will be a lifelong issue, but since I was just diagnosed with bone mets early this year, it doesn't seem like such a big issue any more.

    My best to you, Lynne. It's a tough journey, but somehow we just keep putting one foot in front of the other.

    Hugs, Renee

    Oh No!!!
    Oh Renee,
    I feel so awful for you. It's so true about this site. We find comfort, information, concern and also in your case, someone who can make me feel better since it could be worse. My heart goes out to you and I'll keep watching for posts from you to see how you're doing. One foot in front of the other.
    XXXX
    Lynne
  • MAJW
    MAJW Member Posts: 2,510 Member
    Alexis F said:

    I am glad to see you posting
    I am glad to see you posting but so sorry for your report and news. I will be praying for you Lynne.

    Port...
    Lynne...

    I hope you're feeling some better and the drains come out soon.....am I correct that you had a mastectomy on each side? Kinda hard to keep with the many posts...if you have Lynne, I don't see how you can avoid a port...as we all know we're not allowed to have BP or IV's or injections on the side of lumpectomy or mastectomy.... My first go round with chemo in 2009 was just 4 infusions so my one arm did okay although the last one took4 sticks...without a port, they usually start low on the arm so they can move up....that was my case, then...my oncologist then said more than 4 infusions and it was no longer an option because if the vein in that arm gave out, I'd to stop treatment and have one installed....

    I am now on chemo again....I had a port installed 9 weeks ago, right after I finished my last brain radiation...went from radiation to the surgical radiology department...a radiologist installed mine under conscious sedation...I dreaded it, but actually for me, it was okay....and it's truly been a blessing for chemo....trust me, I avoid touching it..it still seems freaky ....lol but I am thankful for no arm sticks...

    Keep us posted on your recovery as you feel up to it...
    Hugs, Nancy
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413

    No Port
    I think what I need is advice from those who chose not to go with the port. I've not had that many IV's in my life but the 3 I've had during the last 10 months didn't seem too uncomfortable. I'm wondering what it's like to go through probably 6 infusions by IV. The port was a "thorn in my side" from the beginning. It caused me such discomfort, even aching....I still have some discomfort after 4 months, although it's pretty much over shadowed by the new surgery.
    I've had chronic sore muscles in my back since almost a month before my May 8th surgery. On Friday I woke up with "The Claw' and wept into my breakfast. I'm pretty stoic when it comes to pain but this was too much. It's not like a muscle spasm, just a constant cramp. I know this inflammation will show up on the PET scan I still haven't had due to my arm still not raising high enough. It seems if it's not one thing, something else pops up. The one good thing? Stronger pain meds for my back have allowed me at times to raise my arm high enough I think I could do the scan. After someone carried me to it. ;-}
    Hugs to all,
    Lynne

    Hi Lynne,
    Battling this

    Hi Lynne,

    Battling this beast is never easy, and in some ways recurrence is harder because you know what to expect. In some ways, it is easier a because you know what to expect...at least that's been my experience.

    I did 6 rounds of TAC without a port after my original dx. In my case the nurses were really good about finding usable veins. Some tips...drink plenty of fluid before your infusions. It helps to 'plump up' your veins. The nurses were also really good about wrapping my arm in a warm blanket before even trying the IV, if your nurses don't do that automatically ask for it. They were also really good about using a different vein for each treatment, and using veins that are not normally used for blood tests. At the time, I was able to tell each nurse where the previous infusions were so they could use a different location, everything was done on the non-cancer side.

    Now that I get weekly infusions, I prefer the port. It's certainly easier to drag the IV pole to the bathroom, LOL. Plus the veins in my arm are now shot, and the port doesn't really bother me. I know that some, like you, have difficulty with them.

    As for range of motion...(I had a bilateral with axillary dissection on the left in Jan 2011) I still don't have full range of motion. I have adhesions, my re-excision to remove recurrence didn't heal for months which left a hole in my chest, and lymphedema. I will never have full range of motion, but I have about 90% which I figure is pretty good. I started seeing a PT about 6-8 weeks after surgery, it made a huge difference in getting my range of motion back and I recommend it if you can. Until then, keep doing your exercises...they really do help.

    I hope you are getting stronger every day.

    Hugs,

    Linda
  • MAJW
    MAJW Member Posts: 2,510 Member
    MAJW said:

    Port...
    Lynne...

    I hope you're feeling some better and the drains come out soon.....am I correct that you had a mastectomy on each side? Kinda hard to keep with the many posts...if you have Lynne, I don't see how you can avoid a port...as we all know we're not allowed to have BP or IV's or injections on the side of lumpectomy or mastectomy.... My first go round with chemo in 2009 was just 4 infusions so my one arm did okay although the last one took4 sticks...without a port, they usually start low on the arm so they can move up....that was my case, then...my oncologist then said more than 4 infusions and it was no longer an option because if the vein in that arm gave out, I'd to stop treatment and have one installed....

    I am now on chemo again....I had a port installed 9 weeks ago, right after I finished my last brain radiation...went from radiation to the surgical radiology department...a radiologist installed mine under conscious sedation...I dreaded it, but actually for me, it was okay....and it's truly been a blessing for chemo....trust me, I avoid touching it..it still seems freaky ....lol but I am thankful for no arm sticks...

    Keep us posted on your recovery as you feel up to it...
    Hugs, Nancy

    Bump up...
    Bumping this up for you, Lynne..
  • carkris
    carkris Member Posts: 4,553 Member
    MAJW said:

    Bump up...
    Bumping this up for you, Lynne..

    Lynn i am sorry about your
    Lynn i am sorry about your new diagnosis. this is my third local go round too. We just pick ourselves off dust off and keep moving although it stinks. i did not have a port. I did have 12 taxol, so by the end (plus i had a rough go so was dehydrated) the veins got scanty and sometimes i was stuck a few times. but not with the AC. So if thats what you are getting, it will probably be ok. I dont really get worked up about IVs that much though it depends on if you do. Also if they start to run into problems they can start a PICC, line. ask your onc.
  • Ritzy
    Ritzy Member Posts: 4,381 Member

    No Port
    I think what I need is advice from those who chose not to go with the port. I've not had that many IV's in my life but the 3 I've had during the last 10 months didn't seem too uncomfortable. I'm wondering what it's like to go through probably 6 infusions by IV. The port was a "thorn in my side" from the beginning. It caused me such discomfort, even aching....I still have some discomfort after 4 months, although it's pretty much over shadowed by the new surgery.
    I've had chronic sore muscles in my back since almost a month before my May 8th surgery. On Friday I woke up with "The Claw' and wept into my breakfast. I'm pretty stoic when it comes to pain but this was too much. It's not like a muscle spasm, just a constant cramp. I know this inflammation will show up on the PET scan I still haven't had due to my arm still not raising high enough. It seems if it's not one thing, something else pops up. The one good thing? Stronger pain meds for my back have allowed me at times to raise my arm high enough I think I could do the scan. After someone carried me to it. ;-}
    Hugs to all,
    Lynne

    Just sending you a gentle
    Just sending you a gentle hug today Lynne!


    Sue :)
  • Lynne Logan
    Lynne Logan Member Posts: 105 Member
    MAJW said:

    Port...
    Lynne...

    I hope you're feeling some better and the drains come out soon.....am I correct that you had a mastectomy on each side? Kinda hard to keep with the many posts...if you have Lynne, I don't see how you can avoid a port...as we all know we're not allowed to have BP or IV's or injections on the side of lumpectomy or mastectomy.... My first go round with chemo in 2009 was just 4 infusions so my one arm did okay although the last one took4 sticks...without a port, they usually start low on the arm so they can move up....that was my case, then...my oncologist then said more than 4 infusions and it was no longer an option because if the vein in that arm gave out, I'd to stop treatment and have one installed....

    I am now on chemo again....I had a port installed 9 weeks ago, right after I finished my last brain radiation...went from radiation to the surgical radiology department...a radiologist installed mine under conscious sedation...I dreaded it, but actually for me, it was okay....and it's truly been a blessing for chemo....trust me, I avoid touching it..it still seems freaky ....lol but I am thankful for no arm sticks...

    Keep us posted on your recovery as you feel up to it...
    Hugs, Nancy

    Oh.......hadn't thought of that
    Hi Nancy,
    You're right, this is my second (and last) mastectomy. The first only involved removing 2 sentinel nodes but it appeared that rads did cause a bit of lymphedema. It also may have been just a difference in fat since celluite isn't selective.
    My oncologist has promised a "kinder, gentler chemo" if there is such. No more Taxotere since it was very hard on me. I felt like I'd been beaten and left for dead in an alley after only 4 infusions.
    I'm to get blood work done after my PET scan (to be scheduled soon) and before I see my oncologist. Just where do I have blood drawn? This is getting more confusing all the time. I know what I know and don't know enough about a lot of other stuff.
    My daughter is so against a port too after seeing me in the ER all blue faced, gray lipped and puffy. It's a one in a million thing, to develop an embolism during port removal, but I seem to be that one more often than not.
    More confused than ever....
    Lynne
  • MAJW
    MAJW Member Posts: 2,510 Member

    Oh.......hadn't thought of that
    Hi Nancy,
    You're right, this is my second (and last) mastectomy. The first only involved removing 2 sentinel nodes but it appeared that rads did cause a bit of lymphedema. It also may have been just a difference in fat since celluite isn't selective.
    My oncologist has promised a "kinder, gentler chemo" if there is such. No more Taxotere since it was very hard on me. I felt like I'd been beaten and left for dead in an alley after only 4 infusions.
    I'm to get blood work done after my PET scan (to be scheduled soon) and before I see my oncologist. Just where do I have blood drawn? This is getting more confusing all the time. I know what I know and don't know enough about a lot of other stuff.
    My daughter is so against a port too after seeing me in the ER all blue faced, gray lipped and puffy. It's a one in a million thing, to develop an embolism during port removal, but I seem to be that one more often than not.
    More confused than ever....
    Lynne

    Port...
    I know you're against a port, but they draw your blood from the port....I know you had a horrible time with your other one being removed....I hate that bad experience for you....some on this board still have the port long after chemo is over..I doubt that me being stage IV if mine will ever be removed...

    Personally, if you have to have one, I would have a radiologist implant it...they implant and remove them all the time from what I was told...

    I so hate that you're going through this again....it all sucks!!!! But like Car said, we do what we have to do and take one day at a time..

    Keep us posted, we care..
    Big hugs, Nancy
  • Megan M
    Megan M Member Posts: 3,000

    Oh.......hadn't thought of that
    Hi Nancy,
    You're right, this is my second (and last) mastectomy. The first only involved removing 2 sentinel nodes but it appeared that rads did cause a bit of lymphedema. It also may have been just a difference in fat since celluite isn't selective.
    My oncologist has promised a "kinder, gentler chemo" if there is such. No more Taxotere since it was very hard on me. I felt like I'd been beaten and left for dead in an alley after only 4 infusions.
    I'm to get blood work done after my PET scan (to be scheduled soon) and before I see my oncologist. Just where do I have blood drawn? This is getting more confusing all the time. I know what I know and don't know enough about a lot of other stuff.
    My daughter is so against a port too after seeing me in the ER all blue faced, gray lipped and puffy. It's a one in a million thing, to develop an embolism during port removal, but I seem to be that one more often than not.
    More confused than ever....
    Lynne

    I wish I could do more than
    I wish I could do more than just send you hugs and prayers. I feel so bad for you Lynne. You are in my prayers and keep posting any update for us.


    Hugs, Megan
  • camul
    camul Member Posts: 2,537

    Oh.......hadn't thought of that
    Hi Nancy,
    You're right, this is my second (and last) mastectomy. The first only involved removing 2 sentinel nodes but it appeared that rads did cause a bit of lymphedema. It also may have been just a difference in fat since celluite isn't selective.
    My oncologist has promised a "kinder, gentler chemo" if there is such. No more Taxotere since it was very hard on me. I felt like I'd been beaten and left for dead in an alley after only 4 infusions.
    I'm to get blood work done after my PET scan (to be scheduled soon) and before I see my oncologist. Just where do I have blood drawn? This is getting more confusing all the time. I know what I know and don't know enough about a lot of other stuff.
    My daughter is so against a port too after seeing me in the ER all blue faced, gray lipped and puffy. It's a one in a million thing, to develop an embolism during port removal, but I seem to be that one more often than not.
    More confused than ever....
    Lynne

    Lynne,
    Glad that surgery went well, sorry the results were not better. I am so glad that you kept after the doctors, that was one big tumor. I have a port this time, I did not the first time and my veins were shot from chemo, blood work, and surgeries between the original cancer and the recurrence.

    I love my port which was put in by the radiologist. It was uncomfortable for a couple of days but I could not do weekly chemo without it, and honestly don't even notice it unless I wear something strappy. Like Nancy, will probably have it forever.

    However, I can certainly understand after what you went through when it was removed, why you wouldn't want another one. If the infusions are too hard without one, you always have the option of having one put in later.

    Let us know when you have the Pet Scan so we can be there with you in spirit.

    Prayers,
    Carol
  • Lynne Logan
    Lynne Logan Member Posts: 105 Member
    camul said:

    Lynne,
    Glad that surgery went well, sorry the results were not better. I am so glad that you kept after the doctors, that was one big tumor. I have a port this time, I did not the first time and my veins were shot from chemo, blood work, and surgeries between the original cancer and the recurrence.

    I love my port which was put in by the radiologist. It was uncomfortable for a couple of days but I could not do weekly chemo without it, and honestly don't even notice it unless I wear something strappy. Like Nancy, will probably have it forever.

    However, I can certainly understand after what you went through when it was removed, why you wouldn't want another one. If the infusions are too hard without one, you always have the option of having one put in later.

    Let us know when you have the Pet Scan so we can be there with you in spirit.

    Prayers,
    Carol

    Port it is
    Hi all,
    Thanks for being here for me. I'm getting more depressed by the day and fear that this time around is just the beginning of a lifetime of recurring cancer. Probably a much shorter lifetime than I had anticipated since I've always been incredibly healthy, outside of clinical depression.
    While showering today I noticed a hard peanut sized something near the end of my incision under my arm. I'm hoping it isn't a lymph node gone bad again before I even have my PET scan scheduled. It just seems to go from bad to worse and I'm having a difficult time accepting what I'm having to go through, again, so soon.
    I'm upset that I'll have to live with a port after all the pain it caused from the day it was installed. I trust my (vascular) surgeon with my life, he's been my rock throughout the last year. But that doesn't make the port any less dreadful for me. But since lymph nodes have been removed from both sides, I can see the need for it. Depressing.
    I was able to be the one in the family willing to have cancer so I wouldn't have to see my daughter or grandkids go through it. I couldn't have handled that myself. I stayed strong for them and put on a happy face to protect them. But this time I can't seem to muster up strong. I know I have clinical depression since losing my 16 year old daughter to melanoma way back in 1986, but it's actually protected me until now.
    I'm beginning to not communicate with those around me but am so thankful I have all of you. You undoubtedly have all had some or all of the same feelings so I feel safe sharing my thoughts.
    I see my NP tomorrow for something to make my muscle problem in my back better. Or at least something so the spasm doesn't light up like Times Square on my PET scan. I think I might ask her about Cymbalta too since I have to deal with some chronic spine problems.
  • Lynne Logan
    Lynne Logan Member Posts: 105 Member
    MAJW said:

    Port...
    I know you're against a port, but they draw your blood from the port....I know you had a horrible time with your other one being removed....I hate that bad experience for you....some on this board still have the port long after chemo is over..I doubt that me being stage IV if mine will ever be removed...

    Personally, if you have to have one, I would have a radiologist implant it...they implant and remove them all the time from what I was told...

    I so hate that you're going through this again....it all sucks!!!! But like Car said, we do what we have to do and take one day at a time..

    Keep us posted, we care..
    Big hugs, Nancy

    You're so brave
    Hi Nancy,
    You're such a brave lady. I know you're right when you say we do what we must do. Perhaps it's just depression really kicking in and I can't laugh this off or hide it with bravado. It's all the things I know, mixed with the unknown that seem to have piled upon me.
    But, you're right, I'm just one of many, some worse, some "better" but all dealing with their own personal hell. One day at a time.
    Hugs back,
    Lynne
  • New Flower
    New Flower Member Posts: 4,294

    Port it is
    Hi all,
    Thanks for being here for me. I'm getting more depressed by the day and fear that this time around is just the beginning of a lifetime of recurring cancer. Probably a much shorter lifetime than I had anticipated since I've always been incredibly healthy, outside of clinical depression.
    While showering today I noticed a hard peanut sized something near the end of my incision under my arm. I'm hoping it isn't a lymph node gone bad again before I even have my PET scan scheduled. It just seems to go from bad to worse and I'm having a difficult time accepting what I'm having to go through, again, so soon.
    I'm upset that I'll have to live with a port after all the pain it caused from the day it was installed. I trust my (vascular) surgeon with my life, he's been my rock throughout the last year. But that doesn't make the port any less dreadful for me. But since lymph nodes have been removed from both sides, I can see the need for it. Depressing.
    I was able to be the one in the family willing to have cancer so I wouldn't have to see my daughter or grandkids go through it. I couldn't have handled that myself. I stayed strong for them and put on a happy face to protect them. But this time I can't seem to muster up strong. I know I have clinical depression since losing my 16 year old daughter to melanoma way back in 1986, but it's actually protected me until now.
    I'm beginning to not communicate with those around me but am so thankful I have all of you. You undoubtedly have all had some or all of the same feelings so I feel safe sharing my thoughts.
    I see my NP tomorrow for something to make my muscle problem in my back better. Or at least something so the spasm doesn't light up like Times Square on my PET scan. I think I might ask her about Cymbalta too since I have to deal with some chronic spine problems.

    Lynn I am very sorry
    Lynn,
    I am very sorry for yout loss. Loosing a child is very hard even 25 uears later it still hurts
    Plase talk to your NP about your depression. If you are talking anti depressants you need to change it or add something else. In person counseling can be helpful too.
    Hugs