New to the Sisterhood

takingcontrol58

WinnieH said:

I've been combing through the

I've been combing through the forum for advice in preparation for surgery. My hip/back is still hurting so I have limited time on the computer as I can't sit for very long. Here's what I have so far, copied from other threads. I would greatly welcome more advice from everyone. thanks in advance.

 

REQUEST geonomic tumor testing

REQUEST tumor assay

Eat a light diet over the next few days and if needed take a laxative

Pillows for the trip home

If open abdominal, get a velcro wrap to keep staples in place

Prior to surgery - a few more tips

Winnie,
Just wanted to give you a few more tips prior to surgery.

1) Genomic tumor testing- I would highly recommend Foundation One- they test
325 genes and you want to be sure to be tested for all the gene mutations related
to endometrial cancer. The genes they test also include the ones for Lynch Syndrome
(inherited condition that can lead to EC). They are one of the best firms out there.

2) blood tests- Yes, you mentioned CA 125. Definitely get a baseline test.
I highly suggest you also test for HE4 as well. It is a better marker for recurrence than
CA125 so you will have a baseline number prior to surgery so you will know if it is valid
marker for you. 

Also suggest some other key tests which most doctors do not order, but I believe they should:
1) Serum insulin- key driver of many cancers, including EC
2) Insulin Growth Factor Hormone -1 -key driver of endometrial and breast cancer-my
levels were double what they should be when my cancer metastasized- it is often
raised at the diagnosis of EC, but doctors don't test for it. Women always define breast
cancer in relation to estrogen.  With EC, you need to measure both insulin and estrogen.
3) Ferritin (test for iron stores) - a key driver of all cancer- every cell in the body
uses iron to divide, and cancer cells are dividing rapidly.  Women in menopause
are at higher risk of high iron levels because we no longer shed blood each month,
though I don't think you are in menopause.  I had very high levels and had no idea.
It is not a test that doctors regularly order.
4) Glucose- I'm assuming this would be tested as part of the standard blood panel.
Key driver of cancer. Was discovered in the 1930s.
5) Vitamin D- it is very important to have strong levels of Vitamin D. Low levels can
lead to cancer.  If yours are low, you should take a supplement.
6) Estradiol (estrogen)
7) Progesterone

There are many more blood tests I track every 3 months-you can add more afer surgery
later, but at least these tests will give you information on some of the key growth
factors for endometrial cancer, so you know if you have them.  if you do, you will have
to address them.

3) I recommend you start to look for a good integrative oncologist or naturopath who
can put you on a supplementation plan and treat any of your underlying health issues
that may have led to your cancer. Oncologists treat the tumor, not the conditions that 
led to the tumor. It is important to have a more integrative approach in healing cancer.

4) If you don't follow a healthy diet, I would suggest you start now. Try to eat
organic fruits and vegetables, grass fed beef and chicken, limit your sugar and
processed food, drink purified water. And stop drinking alcohol if you do.  I say
all this because I was a sugar junkie- the two months after my surgery before I
started treatment, I continued to eat my usual diet and my cancer quickly
metastasized to 34cm of new tumors.  it was my bad diet that contributed to
my high insulin, IGF-1 and ferritin levels.

5) If you need to lose weight, I believe that is one of the most important things
you can do, as fat cells are hormone factories and one of the reasons that endometrial
cancer is one of the fastest growing cancers. And having excess weight leads to
high levels of hormones and conditions like diabetes, which is a leading cause of many
cancers, including endometrial cancer.

6)  I would like to make one last suggestion. Boost your immune system. The anesthesia
from surgery compromises your immune system and you need your immune system to
fight all those cancer cells that get loose during surgery (that's why they give you chemo after 
surgery).  The best supplement booster is Maitake D fraction.  It is a liquid you can just add
to your daily tea or smoothie or whatever.  Maitake D fraction (by Mushroom Wisdom) is
a medicial mushroom. They are known as strong immune system boosters.  There is much
scientific information on Maitake D fraction. I've been taking it for 3 years now and have
remained in remission.

Unfortunately, i did not know all these things prior to surgery but hopefully you can be
better prepared.

Takingcontrol58 

 

 

 

 

 

derMaus

takingcontrol58 said:

Prior to surgery - a few more tips

Winnie,
Just wanted to give you a few more tips prior to surgery.

1) Genomic tumor testing- I would highly recommend Foundation One- they test
325 genes and you want to be sure to be tested for all the gene mutations related
to endometrial cancer. The genes they test also include the ones for Lynch Syndrome
(inherited condition that can lead to EC). They are one of the best firms out there.

2) blood tests- Yes, you mentioned CA 125. Definitely get a baseline test.
I highly suggest you also test for HE4 as well. It is a better marker for recurrence than
CA125 so you will have a baseline number prior to surgery so you will know if it is valid
marker for you. 

Also suggest some other key tests which most doctors do not order, but I believe they should:
1) Serum insulin- key driver of many cancers, including EC
2) Insulin Growth Factor Hormone -1 -key driver of endometrial and breast cancer-my
levels were double what they should be when my cancer metastasized- it is often
raised at the diagnosis of EC, but doctors don't test for it. Women always define breast
cancer in relation to estrogen.  With EC, you need to measure both insulin and estrogen.
3) Ferritin (test for iron stores) - a key driver of all cancer- every cell in the body
uses iron to divide, and cancer cells are dividing rapidly.  Women in menopause
are at higher risk of high iron levels because we no longer shed blood each month,
though I don't think you are in menopause.  I had very high levels and had no idea.
It is not a test that doctors regularly order.
4) Glucose- I'm assuming this would be tested as part of the standard blood panel.
Key driver of cancer. Was discovered in the 1930s.
5) Vitamin D- it is very important to have strong levels of Vitamin D. Low levels can
lead to cancer.  If yours are low, you should take a supplement.
6) Estradiol (estrogen)
7) Progesterone

There are many more blood tests I track every 3 months-you can add more afer surgery
later, but at least these tests will give you information on some of the key growth
factors for endometrial cancer, so you know if you have them.  if you do, you will have
to address them.

3) I recommend you start to look for a good integrative oncologist or naturopath who
can put you on a supplementation plan and treat any of your underlying health issues
that may have led to your cancer. Oncologists treat the tumor, not the conditions that 
led to the tumor. It is important to have a more integrative approach in healing cancer.

4) If you don't follow a healthy diet, I would suggest you start now. Try to eat
organic fruits and vegetables, grass fed beef and chicken, limit your sugar and
processed food, drink purified water. And stop drinking alcohol if you do.  I say
all this because I was a sugar junkie- the two months after my surgery before I
started treatment, I continued to eat my usual diet and my cancer quickly
metastasized to 34cm of new tumors.  it was my bad diet that contributed to
my high insulin, IGF-1 and ferritin levels.

5) If you need to lose weight, I believe that is one of the most important things
you can do, as fat cells are hormone factories and one of the reasons that endometrial
cancer is one of the fastest growing cancers. And having excess weight leads to
high levels of hormones and conditions like diabetes, which is a leading cause of many
cancers, including endometrial cancer.

6)  I would like to make one last suggestion. Boost your immune system. The anesthesia
from surgery compromises your immune system and you need your immune system to
fight all those cancer cells that get loose during surgery (that's why they give you chemo after 
surgery).  The best supplement booster is Maitake D fraction.  It is a liquid you can just add
to your daily tea or smoothie or whatever.  Maitake D fraction (by Mushroom Wisdom) is
a medicial mushroom. They are known as strong immune system boosters.  There is much
scientific information on Maitake D fraction. I've been taking it for 3 years now and have
remained in remission.

Unfortunately, i did not know all these things prior to surgery but hopefully you can be
better prepared.

Takingcontrol58 

 

 

 

 

 

Metformin Interaction

I know you're on Metformin and I'm reading that Maitake D can interact with that. Have you had any problems thus far?

ckdgedmom

WinnieH said:

I've been combing through the

I've been combing through the forum for advice in preparation for surgery. My hip/back is still hurting so I have limited time on the computer as I can't sit for very long. Here's what I have so far, copied from other threads. I would greatly welcome more advice from everyone. thanks in advance.

 

REQUEST geonomic tumor testing

REQUEST tumor assay

Eat a light diet over the next few days and if needed take a laxative

Pillows for the trip home

If open abdominal, get a velcro wrap to keep staples in place

post surgery

I had a large incicsion but thankfully the catherter was in less than 24 hours...I'd say maybe 12...

ask your surgeon about pain management---sometimes they place tiny catheters that deliver pain medication (numbing type not narcotic) into the abdominal wall to control pain post surgery. My surgery got pushed until 7 at night (was supposed to be at 2-4 pm but my hospital is a level 1 trauma center so the OR's were busy that day) and I had to have the pain blocks put in the next day. They helped tremendously. The pain blocks stayed in from Tuesday-Sunday (my surgery was on Monday). My son had the same sort of pain block after ACL surgery. The medication is delivered throught tiny tiny catheters and there is a boulous of medication that keeps it delivering continuously. When the boulous is empty you just pull the little thread-like catheter out (it is inserted into your abdominal wall...you cant feel it). 

if you have robotic surgery ask if they can give you a pain block shot in recovery...I just had hernia repair surgery and they did that---I was in recovery and the pain team came in and gave me a shot in each side of my abdomen---it was immediate relief and helped a lot. It doesn't last as long as the boulous/catheter type but with laproscopic the pain is not as intense or bad...

in any case---discuss this with your surgeon...it really makes a difference and I found I needed a lot less oral pain medication (and I am allergic to most so its an issue) and I think it aided in my getting up and about faster...

Other post op help:

a wedge pillow for your bed (makes it more comfy to lay in bed---it gives you a nice angle like a hospital bed)...buy online or at Bed BAth and Beyond

a cooling pillow to sleep on (post hysterectomy will help with night sweats)

cool cotton gowns that are easy to put on and take off

a belly binder for support (I used it post hernia surgery too...it really helps)

and DO NOT lift anything heavier than your phone...3 weeks post open incision hysterectomy I was back to lifting my cast iron pots and pans and THAT is how I got my hernia...a huge "3rd boob" size hernia...so if you have the open surgery do not lift anything heavy at all...

be sure to have GasX, stool softener, and glycerin suppositories on hand at home for post surgical gut issues...

good luck!!!!

HorseLvr

NoTimeForCancer said:

Winnie, they don't like to

Winnie, they don't like to call it 'radical' anymore and go with the more, PC, "complete".  Whatever - it is all the end in the same.  With that said, lots of us have had a complete hysterectomy and I don't know how many have had to have a catheter for weeks afterwards.  Are you having your surgery as a DaVinci (robotic) surgery or a traditional, abdominal incision?  Maybe that is why he is saying a catheter????  My sister had a hysterectomy via incision and did not have a cath.  

Maybe the other ladies can chime in.  The main thing is you have to pee and/or poop before they let you go no matter what type of surgery you have.  

Do you know why certain types

Do you know why certain types of hyst. require catheter and others don't? That is something I am dreading if I have to have a hyst. 

HorseLvr

WinnieH said:

Thank you for your kind

Thank you for your kind thoughts and prayers. I'm trying to do as much prep and research as possible before the surgery. Ok, I can deal with a catheter.

Have you seen the hyster

Have you seen the hyster sisters website? It's very informative and has forums, too. I'm not sure if we can post links but you can easily find it with google. Good luck with your surgery, hope all goes well.

HorseLvr

ckdgedmom said:

post surgery

I had a large incicsion but thankfully the catherter was in less than 24 hours...I'd say maybe 12...

ask your surgeon about pain management---sometimes they place tiny catheters that deliver pain medication (numbing type not narcotic) into the abdominal wall to control pain post surgery. My surgery got pushed until 7 at night (was supposed to be at 2-4 pm but my hospital is a level 1 trauma center so the OR's were busy that day) and I had to have the pain blocks put in the next day. They helped tremendously. The pain blocks stayed in from Tuesday-Sunday (my surgery was on Monday). My son had the same sort of pain block after ACL surgery. The medication is delivered throught tiny tiny catheters and there is a boulous of medication that keeps it delivering continuously. When the boulous is empty you just pull the little thread-like catheter out (it is inserted into your abdominal wall...you cant feel it). 

if you have robotic surgery ask if they can give you a pain block shot in recovery...I just had hernia repair surgery and they did that---I was in recovery and the pain team came in and gave me a shot in each side of my abdomen---it was immediate relief and helped a lot. It doesn't last as long as the boulous/catheter type but with laproscopic the pain is not as intense or bad...

in any case---discuss this with your surgeon...it really makes a difference and I found I needed a lot less oral pain medication (and I am allergic to most so its an issue) and I think it aided in my getting up and about faster...

Other post op help:

a wedge pillow for your bed (makes it more comfy to lay in bed---it gives you a nice angle like a hospital bed)...buy online or at Bed BAth and Beyond

a cooling pillow to sleep on (post hysterectomy will help with night sweats)

cool cotton gowns that are easy to put on and take off

a belly binder for support (I used it post hernia surgery too...it really helps)

and DO NOT lift anything heavier than your phone...3 weeks post open incision hysterectomy I was back to lifting my cast iron pots and pans and THAT is how I got my hernia...a huge "3rd boob" size hernia...so if you have the open surgery do not lift anything heavy at all...

be sure to have GasX, stool softener, and glycerin suppositories on hand at home for post surgical gut issues...

good luck!!!!

If you want something to

If you want something to raise the head of your mattress and you want to use it long term, I highly recommend the mattress genie. I've had one for years and I love it, and it's really great for when I have pneumonia (I'm susceptible to it) as laying flat sends me into a coughing fit. Once again, I'm not sure if I can post a url but googling 'mattress genie' will get you their website.

 

NoTimeForCancer

HorseLvr said:

Do you know why certain types

Do you know why certain types of hyst. require catheter and others don't? That is something I am dreading if I have to have a hyst. 

For surgery they put it in

For surgery they put it in when they knock you out and you wake up with it - they don't want you urinating everywhere.  They hook you up to an IV and that fluid has to go somewhere. 

I was supposed to pee before they would release me from the hospital but my bladder didn't wake up so they had to cath me once.  I was drinking a lot of water to get the anethesia out of my system and had my braiin tell my bladder to work!  I didn't go as much as they wanted but it was my goal when I got home and I got up all the time.  

derMaus

takingcontrol58 said:

DerMaus, Metformin interaction question

I've been on Maitake D fraction and the metformin for nearly 3 years now.  Maitake D was one
of the first supplements I started using since I just put it in my daily smoothie. The integrative
oncologist who put me on both had a phd in molecular biology, so I trusted all the supplements he
recommended for me, that I started while I was getting chemo.

Never had any issues with either the metformin or Maitake D.

Takingcontrol58

Thanks, TakingControl58 ! B

Thanks, TakingControl58 ! B

takingcontrol58

derMaus said:

Metformin Interaction

I know you're on Metformin and I'm reading that Maitake D can interact with that. Have you had any problems thus far?

DerMaus, Metformin interaction question

I've been on Maitake D fraction and the metformin for nearly 3 years now.  Maitake D was one
of the first supplements I started using since I just put it in my daily smoothie. The integrative
oncologist who put me on both had a phd in molecular biology, so I trusted all the supplements he
recommended for me, that I started while I was getting chemo.

Never had any issues with either the metformin or Maitake D.

Takingcontrol58

WinnieH

I've got my list and checking

I've got my list and checking it off as I gather all the goodies....T minus nine days.

Quick question on stool softener - I've only used Miralax once and that made everything go whoosh. I've never used other stuff. Any suggestions on a brand that doesn't have much side effects? 

derMaus

I used Senokot and found a

I used Senokot and found a happy balance between "whoosh" and no action at all. 

ckdgedmom

WinnieH said:

I've got my list and checking

I've got my list and checking it off as I gather all the goodies....T minus nine days.

Quick question on stool softener - I've only used Miralax once and that made everything go whoosh. I've never used other stuff. Any suggestions on a brand that doesn't have much side effects? 

Dulcolax I think

I used an over the counter gel stool softener...Dulcolax I think...

the doc prescribed one but insurance didn't cover it and it was something silly like $30. I asked the pharmacist and she said it was just like the over the counter (what was prescribed was called Doc-o-lace) so she suggested I get a gel stool softener...

if you don't want to take something internally you can use a glycerin suppository (be sure it is just the glycerin and not one with laxative) and it will help but then there is the whole issue of getting it "in" there when you can barely move after surgery...

and drink lots of water...that helps...

and be sure the stool softener is just that and not a laxative

Deb17

Winnie

i know what you’re going through.  I’m sorry you have to wait but I know certain tests take time.  I was diagnosed with Stage IVb uterine cancer last February.  i won’t go into all the details but I do look to this site for moral support and successful stories.  Hang in there and I hope and pray things turn out well for you.