What do you wish someone had told you?

Tamlen

ckdgedmom said:

pain and questions

Hi Tamlen...

I have issues with a lot of pain meds as well...I can't do anything that is in a PCA pump and so no morphine, dilaudid, demerol etc....it makes me itch violently...

I had an open fully hysterectomy (I am USPC Stage 4B) so I have a very large vertical incision on my abdomen. My hospital has a pain managment team so I was sent to them post surgery (my sugery got pushed very late because the hospital is a Level 1 trauma center so the ORs were in use and the pain team went home) and they put in some tiny pain blocks in my abdomen that delivered medicine right into the abdominal wall area...it helped so much. Sometimes they put in the pain blocks before surgery but in my case it had to be after. I toook Tramadol post surgery and the pain blocks were in for 6 days (they had to change the bolous before I left the hospital). Not gonna lie---it was a lot of pain because it was open but my gyno/onc said she needed to have a very clear field to see it all....we went in thinking it was endometrial but it ended up as UPSC and it spread to my lymph glands.

Definitely discuss these options for pain managment with your surgeon...it might help if you have to have an open incision...

I was given lovonox shots before and after surgery...

be sure to discuss any and all meds you take...even supplements! They had me stop Omega 3 3 days before as well as my athritis meds...

Eat a light diet before sugery and be sure to have stool softener and GasX and metamucil on hand for when you come home...

When I met my gyno onco for the first time we discussed the surgery in depth and what I needed to do to prepare. We did not discuss chemo and radiaiton at that time because we did not know what my pathology would show. My cancer was a nasty bugger (I call it El Diablo---the devil) and my ultrasounds showed only some fibroids and my CT just showed an enlarged uterus. My CA125 was in the 600's. The pathologist was having trouble figuring out what kind of cancer it was after my hysteroscopy but the pathology after hysterectomy confirmed it.

Good luck...we are all here for you...

 

El diablo

That's a good name to give the sucker, ckdgedmom. Didn't know about pain blocks, so that's really helpful info, thanks. I've only had sports injuries before, never any illness, so this is quite the crash course. Glad I took today off after getting the news yesterday...I'd be useless trying to focus on my clients!

MugsBugs

CA125 - Definitely request the CA125

I didn't know what a CA125 was but my doctor requested it (a simple blood test).  Mine came back at 18 so it has put my mind a little bit at ease.  It will also be good as a baseline number for post-treatment followups.  ckdgedmom - it sounds like you have been through the ringer - I pray El Diablo is gone forever!

cmb

What I Wish I had Known...Who Does What

In my case, it was the gynecologist who did the D&C who ordered the CA125 test and the CT scan. So by the time I met with the gynecological oncologist he had all that information, plus my case had already been discussed at the cross-functional oncology team meeting. Therefore, my pre-op exam/consultation with him was quite detailed (although I didn't know at the time to ask about genetic tumor testing).

But I think this illustrates the differences between cancer treatment centers. Different hospitals and doctors have different protocols. I found that while the initial care and treatment plan was well coordinated amongst the various professionals, it was less so once I started chemo.

My long-time PCP and the gynecological oncologist really stepped back during the time I was receiving chemotherapy from the medical oncologist and didn't get involved again until I was done with chemo. Then they both stepped back again while I underwent radiation. In hindsight, I should have done a better job of learning who would be responsible for what (and when) at the start of my process.

I never met with the gynecologist after the D&C. She gave me the pathology results over the phone (which I actually appreciated). But maybe if I had met with her I would have gotten the big picture overview that could have helped during the treatment phase. By the time I met with the gynecological oncologist, everyone (including me) was very focused on the seriousness of the diagnosis (uterine carcinosarcoma/MMMT) and the immediate next steps. So the long-term process wasn't really covered.

If I had been reading this site during treatment, I would have known a lot more about the overall process right from the start. But unfortunately I didn't start reading the posts until after I completed treatment last September.

ckdgedmom

Tamlen said:

El diablo

That's a good name to give the sucker, ckdgedmom. Didn't know about pain blocks, so that's really helpful info, thanks. I've only had sports injuries before, never any illness, so this is quite the crash course. Glad I took today off after getting the news yesterday...I'd be useless trying to focus on my clients!

El Diablo

my radiology oncologist is from Puerto Rico so he loves the name El Diablo...it has been the devil for me...the good news is that despite Stage 4b UPSC my latest scans are clear and it looks like I might be on the way to wellness...he's very pleased with my results and my CA125 from 6 weeks ago was 13 so it is looking good...

as for the pain blocks...if you have it laparoscopically they won't do them (as they won't be needed because the pain is different) but when I had my hernia repaired in November the pain team did give me shots in each side of my abdomen that helped a lot...it wasn't the same as the catheter ones that lasted longer and were stronger for the hysterectomy but it did help (the shots). Same pain doc did me so we had a good laugh about it...my son had the catherter type pain block after ACL replacement surgery...

They were going to prescribe me with 800 mg ibuprofen post surgery but I can't take Advil...you might ask about high dosage...

first question for you doc: will this be an "open" hysterectomy or robotic assist laparoscopy? if you can do the later that is preferable...the other was harder (my hernia was robotic assist) and I now have a gorgeous 12 inch scar...

ckdgedmom

MugsBugs said:

CA125 - Definitely request the CA125

I didn't know what a CA125 was but my doctor requested it (a simple blood test).  Mine came back at 18 so it has put my mind a little bit at ease.  It will also be good as a baseline number for post-treatment followups.  ckdgedmom - it sounds like you have been through the ringer - I pray El Diablo is gone forever!

thank you MugsBugs

thank you!!!!!

it's been El Diablo but it looks like I might have beaten him...maybe...praying...

survivingsu

Up Front Stuff

Such great questions!

For what to know up-front, here's what I came up with based on my own journey:

 (in no special order)

1.  Healing takes an incredible amount of time - both physical and mental...much longer than anything else I can think of!

2.  There are way more people going through similar journeys than you'd ever guess

3.  Survival statistics online are out of date.  Glad I did not read up on them until after treatment!

4.  Don't sell yourself short, sometimes the "new normal" is a temporary normal and you can be a "normal" again, albeit wiser one.  It's also good to create your own personal "normal", whatever that may be.  It is a good measuring stick to share information with your doctors when things digress from your defined normal.

5.  People react differently to those undergoing the cancer journey, some get it, others do not.  Some will surprise you with their kind spirits.

6.  I personally cannot give the excuse of "chemo brain" when I forget something, because I was like that before chemo  :0)

7.  For me & my personality, it was good not to have too many details.  I did well by trusting that the experts knew what they were doing.  This gave me the energy to focus on what I had to do in small baby steps.

8.  At the time I was diagnosed, my Mom encouraged me to keep a journal, but I felt so crummy I didn't.  Now I wish I had in case it would have been helpful to others.  I have since forgotten a great deal of my experience.

 

Hope this is helpful!

Cheers!

Susan

 

Tamlen

ckdgedmom said:

El Diablo

my radiology oncologist is from Puerto Rico so he loves the name El Diablo...it has been the devil for me...the good news is that despite Stage 4b UPSC my latest scans are clear and it looks like I might be on the way to wellness...he's very pleased with my results and my CA125 from 6 weeks ago was 13 so it is looking good...

as for the pain blocks...if you have it laparoscopically they won't do them (as they won't be needed because the pain is different) but when I had my hernia repaired in November the pain team did give me shots in each side of my abdomen that helped a lot...it wasn't the same as the catheter ones that lasted longer and were stronger for the hysterectomy but it did help (the shots). Same pain doc did me so we had a good laugh about it...my son had the catherter type pain block after ACL replacement surgery...

They were going to prescribe me with 800 mg ibuprofen post surgery but I can't take Advil...you might ask about high dosage...

first question for you doc: will this be an "open" hysterectomy or robotic assist laparoscopy? if you can do the later that is preferable...the other was harder (my hernia was robotic assist) and I now have a gorgeous 12 inch scar...

Wish there was a way to "like" a post

I'm hoping I won't need an open hysterectomy, but don't know if the fact that they want to do a lymph dissection means they can't do it laparoscipally. I'll know more in a week.

Tamlen

survivingsu said:

Up Front Stuff

Such great questions!

For what to know up-front, here's what I came up with based on my own journey:

 (in no special order)

1.  Healing takes an incredible amount of time - both physical and mental...much longer than anything else I can think of!

2.  There are way more people going through similar journeys than you'd ever guess

3.  Survival statistics online are out of date.  Glad I did not read up on them until after treatment!

4.  Don't sell yourself short, sometimes the "new normal" is a temporary normal and you can be a "normal" again, albeit wiser one.  It's also good to create your own personal "normal", whatever that may be.  It is a good measuring stick to share information with your doctors when things digress from your defined normal.

5.  People react differently to those undergoing the cancer journey, some get it, others do not.  Some will surprise you with their kind spirits.

6.  I personally cannot give the excuse of "chemo brain" when I forget something, because I was like that before chemo  :0)

7.  For me & my personality, it was good not to have too many details.  I did well by trusting that the experts knew what they were doing.  This gave me the energy to focus on what I had to do in small baby steps.

8.  At the time I was diagnosed, my Mom encouraged me to keep a journal, but I felt so crummy I didn't.  Now I wish I had in case it would have been helpful to others.  I have since forgotten a great deal of my experience.

 

Hope this is helpful!

Cheers!

Susan

 

New normal

I found your post particularly uplifting, surivingsu, thanks. Pratical yet forward-focused in a good way. New normal is a good way to think about it, and the idea that new normal will change again!

Tamlen

cmb said:

What I Wish I had Known...Who Does What

In my case, it was the gynecologist who did the D&C who ordered the CA125 test and the CT scan. So by the time I met with the gynecological oncologist he had all that information, plus my case had already been discussed at the cross-functional oncology team meeting. Therefore, my pre-op exam/consultation with him was quite detailed (although I didn't know at the time to ask about genetic tumor testing).

But I think this illustrates the differences between cancer treatment centers. Different hospitals and doctors have different protocols. I found that while the initial care and treatment plan was well coordinated amongst the various professionals, it was less so once I started chemo.

My long-time PCP and the gynecological oncologist really stepped back during the time I was receiving chemotherapy from the medical oncologist and didn't get involved again until I was done with chemo. Then they both stepped back again while I underwent radiation. In hindsight, I should have done a better job of learning who would be responsible for what (and when) at the start of my process.

I never met with the gynecologist after the D&C. She gave me the pathology results over the phone (which I actually appreciated). But maybe if I had met with her I would have gotten the big picture overview that could have helped during the treatment phase. By the time I met with the gynecological oncologist, everyone (including me) was very focused on the seriousness of the diagnosis (uterine carcinosarcoma/MMMT) and the immediate next steps. So the long-term process wasn't really covered.

If I had been reading this site during treatment, I would have known a lot more about the overall process right from the start. But unfortunately I didn't start reading the posts until after I completed treatment last September.

Who does what

Thanks, cmb, I do need to understand this more. I've already had several phone conversations with various offices where the answer has been, "Gee, that's not something we do. Have you tried...?"

CheeseQueen57

Tamlen said:

Wish there was a way to "like" a post

I'm hoping I won't need an open hysterectomy, but don't know if the fact that they want to do a lymph dissection means they can't do it laparoscipally. I'll know more in a week.

TAB

I had a total abdominal hysterectomy. I was supposed to have laparoscopic but cancer was too extensive. But really in hindsite it wasn’t too bad (what followed was much worse). But let’s not get ahead of ourselves. Despite having a TAB, I was frolicking in Tuscany with my beloved family 3 weeks later to get mentally prepared for chemo. Try to stay positive. Really, even with TAB, the pain was not that bad. I never lost a night‘s sleep and took very little narcotics. I hated the Lovenox shots though. 

CheeseQueen57

MugsBugs said:

CA125 - Definitely request the CA125

I didn't know what a CA125 was but my doctor requested it (a simple blood test).  Mine came back at 18 so it has put my mind a little bit at ease.  It will also be good as a baseline number for post-treatment followups.  ckdgedmom - it sounds like you have been through the ringer - I pray El Diablo is gone forever!

CA 125

BTW, mine was always in the normal range so not a reliable indicator for me. 

CheeseQueen57

survivingsu said:

Up Front Stuff

Such great questions!

For what to know up-front, here's what I came up with based on my own journey:

 (in no special order)

1.  Healing takes an incredible amount of time - both physical and mental...much longer than anything else I can think of!

2.  There are way more people going through similar journeys than you'd ever guess

3.  Survival statistics online are out of date.  Glad I did not read up on them until after treatment!

4.  Don't sell yourself short, sometimes the "new normal" is a temporary normal and you can be a "normal" again, albeit wiser one.  It's also good to create your own personal "normal", whatever that may be.  It is a good measuring stick to share information with your doctors when things digress from your defined normal.

5.  People react differently to those undergoing the cancer journey, some get it, others do not.  Some will surprise you with their kind spirits.

6.  I personally cannot give the excuse of "chemo brain" when I forget something, because I was like that before chemo  :0)

7.  For me & my personality, it was good not to have too many details.  I did well by trusting that the experts knew what they were doing.  This gave me the energy to focus on what I had to do in small baby steps.

8.  At the time I was diagnosed, my Mom encouraged me to keep a journal, but I felt so crummy I didn't.  Now I wish I had in case it would have been helpful to others.  I have since forgotten a great deal of my experience.

 

Hope this is helpful!

Cheers!

Susan

 

Amen

I second Sue’s thoughts. I actually set up a Caring Bridge site to keep friends and family informed. It was very helpful. 

Wannabeatit

Tamlen said:

Wish there was a way to "like" a post

I'm hoping I won't need an open hysterectomy, but don't know if the fact that they want to do a lymph dissection means they can't do it laparoscipally. I'll know more in a week.

I had mine done

I had mine done laparoscopiclly and they removed 11 lymph nodes. I know they took out the uterus through the vagina And also removed omentum ovaries cervix Fallopian tubes. Not sure where they took out everything.

Tamlen

CheeseQueen57 said:

TAB

I had a total abdominal hysterectomy. I was supposed to have laparoscopic but cancer was too extensive. But really in hindsite it wasn’t too bad (what followed was much worse). But let’s not get ahead of ourselves. Despite having a TAB, I was frolicking in Tuscany with my beloved family 3 weeks later to get mentally prepared for chemo. Try to stay positive. Really, even with TAB, the pain was not that bad. I never lost a night‘s sleep and took very little narcotics. I hated the Lovenox shots though. 

TAB?

What's a TAB? And why did you hate the Lovenox shots? Thanks!

Tamlen

Northwoodsgirl said:

Questions to ask for newly diagnosed uterine cancer

Welcome to the sisterhood! You are fortunate to be on this site so soon after the phone call.

1. I wish I had been aware of the website NNCN. This is where the widely adopted and standardized cancer treatment protocols are posted for doctors and patients. It even has treatment algorithms based on stage and grade and if dealing with a reoccurence of cancer by type. Included are timing of surgery, chemo protocols and types of radiation protocols.  I also wish I was better prepared for the rollercoaster of emotions (denial, anger, fear, anxiety) you will experience as you learn how to go on this journey. 

2. Ask the surgeon how many Total Abdominal Hysterectomys (TAH) they do in a year and in their career? Your best surgeons in terms of experience have done 100 or more in their career. Ask why they are recommending a laparoscopic surgical approach versus an “open” abdominal surgical approach considering you personal medical and surgical history.

Minimally invasive-laproscopic  robotic DaVinci is not ideal for everyone. Also finding Women’s Cancer Center that is recognized as a Center of Excellence is a plus. 

3. Pain management challenges: Tell Your gyn/onc.that you need to have a pain consult. It could be with a PharmD (pharmacist with advanced training- pronounce phonetically as

”farm-D”. They are clinical pharmacist. 

Tip: Tell the ob-gyn surgeon that you need to know where the anasthesiologist and radiologist that the hospital uses for your surgery is coming from. Otherwise your health insurance company will make you pay “out-of-network” rates which could be 60-80% of billed charges ( not the lower “in-network“ discounted contract charges negotiated with “in-network” providers. The hospitals don’t like to tell you ahead of time because they don’t always know which anasthesiologist or nurse anasthesist will be assigned to your surgery. Call member services on the back of your insurance card once you know the hospital, surgeon, radiologist and anasthesiologist name and group name to see if they are “in-network” or “out-of -network”. 

5. Don’t waste money on a wig! ( You may not need chemo or lose your hair ( find out if cooling caps are covered). Their are so many cute scarves and comfy cotton chemo sleeping caps). 

Ok I’ll stop now...  Keep your “sisters” on this board posted on how you do. ((Hug))

Lori

So true

I got really lucky to find you all!

Northwoodsgirl

Questions to ask for newly diagnosed uterine cancer

Welcome to the sisterhood! You are fortunate to be on this site so soon after the phone call.

1. I wish I had been aware of the website NNCN. This is where the widely adopted and standardized cancer treatment protocols are posted for doctors and patients. It even has treatment algorithms based on stage and grade and if dealing with a reoccurence of cancer by type. Included are timing of surgery, chemo protocols and types of radiation protocols.  I also wish I was better prepared for the rollercoaster of emotions (denial, anger, fear, anxiety) you will experience as you learn how to go on this journey. 

2. Ask the surgeon how many Total Abdominal Hysterectomys (TAH) they do in a year and in their career? Your best surgeons in terms of experience have done 100 or more in their career. Ask why they are recommending a laparoscopic surgical approach versus an “open” abdominal surgical approach considering you personal medical and surgical history.

Minimally invasive-laproscopic  robotic DaVinci is not ideal for everyone. Also finding Women’s Cancer Center that is recognized as a Center of Excellence is a plus. 

3. Pain management challenges: Tell Your gyn/onc.that you need to have a pain consult. It could be with a PharmD (pharmacist with advanced training- pronounce phonetically as

”farm-D”. They are clinical pharmacist. 

Tip: Tell the ob-gyn surgeon that you need to know where the anasthesiologist and radiologist that the hospital uses for your surgery is coming from. Otherwise your health insurance company will make you pay “out-of-network” rates which could be 60-80% of billed charges ( not the lower “in-network“ discounted contract charges negotiated with “in-network” providers. The hospitals don’t like to tell you ahead of time because they don’t always know which anasthesiologist or nurse anasthesist will be assigned to your surgery. Call member services on the back of your insurance card once you know the hospital, surgeon, radiologist and anasthesiologist name and group name to see if they are “in-network” or “out-of -network”. 

5. Don’t waste money on a wig! ( You may not need chemo or lose your hair ( find out if cooling caps are covered). Their are so many cute scarves and comfy cotton chemo sleeping caps). 

Ok I’ll stop now...  Keep your “sisters” on this board posted on how you do. ((Hug))

Lori

CheeseQueen57

Tamlen said:

TAB?

What's a TAB? And why did you hate the Lovenox shots? Thanks!

Total Abdominal Hysterectomy

Stands for total abdominal hysterectomy.  And the Lovenox injections sting. 

derMaus

Tamlen said:

Thanks for all the advice so far

A big thanks to all of you I didn't reply to individually -- lots of helpful advice here and I've added it to my ever-growing list.

Many of the questions you asked me I can't answer yet. I see my regular gyn, the one who did the D&C, tomorrow, to go over the biopsy results in person; I expect to learn type of endometrial cancer then. I've just been scheduled to see my new gyn/onc a week from today, for first consult. So I won't know surgery type, pre-op testing plan, etc until then.

I will be requesting genetic testing even if they do not suggest it, because I learned something I didn't know: I have a long family history of colon cancer -- I've even tracked it back through every generation of my Scottish family to my 3rd gr grandmother born over 200 years ago. Those Scots did a good thing by recording what everybody died of! No one in my immediate family has had it, but I've got several cousins that have, and my grandfather died of it. I've been diligent about routine colonscopies since I was 40, but did not know until this week's research that the gene mutation responsible for familial colon cancer is also associated with uterine cancer. No doc has ever mentioned that -- sure wish I'd known before now.

Lynch Syndrome, Tumor Testing, etc.

The gene mutation you refer to - Lynch syndrome - can predispose you to all kinds of nastiness, and at a younger age. Mine was not diagnosed until after I already had cancer, and blessedly few in my family have had any problems. You will definitely want to request that test if they haven't already done it. You may also want to consider two other types of testing: geonomic tumor testing, usually done by Foundation One or similar. Last May the FDA approved Keytruda (immunotherapy) for use in any cancer, regardless of origin, that has been identified as having microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR); these attributes are defined in the test. The geonomic report will also list what treatments will work for your tumor type, e.g. immunotherapy, etc. Most times insurance will only pay for F1 after you've had a recurrence, so you're likely to be assigned the off-the-shelf formula as your first round of treatment unless you advocate strongly otherwise. Currently immunotherapy is used only in cases of recurrence, not as a first line, although that may be changing soon.

The other testing I wish I'd known about is a tumor assay. What they don't tell you is that chemotherapy generally has a low success rate. Pretty much everyone here who's had chemo was sent directly to the standard regimen, taxol and carboplatin. A very few people had something different to start with - I think KVDyson had tumor testing up front and a different course of treatment - but everyone generally gets the standard package. With luck you won't need chemo but, if you do, a tumor assay can help determine what type of chemo will work on your individual cancer. Note that tumor assays can only be done on live tissue so you have to request it before surgery. If I had to do it over I'd do the assay as well as the geonomic testing, even if I had to pay out of pocket for both. 

 

Abbycat2

Tamlen, I wish we could’ve “met” under better circumstances!

You ask excellent questions. I wish I knew when I was facing a hysterectomy what I know now- 4 years later and still cancer free. When I learned that I had uterine cancer after having a uterine biopsy in my gyn onc’s office, I had no clue what to ask.  So, I went home and researched uterine cancer- reading research papers and learning about the “standard of care” for cancer treatment. I wish I knew to ask for the cancer assay test called CA-125. I should’ve had that blood test done BEFORE my hysterectomy. So, I did not have a baseline number. I didn't know that most women have their omentum removed as aggressive cancer likes to spread there.  My biopsy suggested that I had a grade 2 cancer; however, my pathology report which was based on careful analysis of the uterus, Fallopian tubes, ovaries, lymph nodes and pelvic wash showed otherwise. You will not know what grade, stage or type of uterine cancer you have until you get the results of your pathology results. Get copies of that report and the operative report.  Write all your questions down when you see your doctor and bring someone else with you for support and as a second set of ears.

if you are facing chemo with taxol/carboplatin, find out what treatment is available to reduce/prevent neuropathy in your toes and the balls of your feet. My feet are no longer the same. The surgery- the Da Vinci method, wasn’t too bad. The worse thing about it was the trip home.  I was miserable because of severe abdominal gas. Bring a pillow with you on your ride home as it may help if you hold it over your abdomen. I felt great after a few days afterwards.

I wish you the very best! 

 

Tamlen

Abbycat2 said:

Tamlen, I wish we could’ve “met” under better circumstances!

You ask excellent questions. I wish I knew when I was facing a hysterectomy what I know now- 4 years later and still cancer free. When I learned that I had uterine cancer after having a uterine biopsy in my gyn onc’s office, I had no clue what to ask.  So, I went home and researched uterine cancer- reading research papers and learning about the “standard of care” for cancer treatment. I wish I knew to ask for the cancer assay test called CA-125. I should’ve had that blood test done BEFORE my hysterectomy. So, I did not have a baseline number. I didn't know that most women have their omentum removed as aggressive cancer likes to spread there.  My biopsy suggested that I had a grade 2 cancer; however, my pathology report which was based on careful analysis of the uterus, Fallopian tubes, ovaries, lymph nodes and pelvic wash showed otherwise. You will not know what grade, stage or type of uterine cancer you have until you get the results of your pathology results. Get copies of that report and the operative report.  Write all your questions down when you see your doctor and bring someone else with you for support and as a second set of ears.

if you are facing chemo with taxol/carboplatin, find out what treatment is available to reduce/prevent neuropathy in your toes and the balls of your feet. My feet are no longer the same. The surgery- the Da Vinci method, wasn’t too bad. The worse thing about it was the trip home.  I was miserable because of severe abdominal gas. Bring a pillow with you on your ride home as it may help if you hold it over your abdomen. I felt great after a few days afterwards.

I wish you the very best! 

 

Thanks so much, Abbycat2. I'm

Thanks so much, Abbycat2. I'm so glad I posted my questions because your and others' answers make it very clear that there's stuff I need to ask about and ask for before surgery -- and I wouldn't have known half of it.

When you say, "my feet are no longer the same," what do you mean? Is it numbness only? Something else? So sorry to hear about that -- feet are everything for most exercise, as I learned after years of being a marathoner and then suffering a foot injury that became chronic.