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What do you wish someone had told you?

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Hello, everyone. I've spent quite a bit of time this afternoon reading through past messages. You're a wonderfully supportive group and it looks like I'm going to need that. My gyn called today to tell me I have endometrial cancer (don't get angry at her for calling - I asked her to call if the biopsy results came in before my appt on Wed).

I'm 55 and after decades of problems with periods, multiple vaginal ultrasounds in recent years, in and out of menopause supposedly, my latest ultrasound showed a small cervical mass. Had a D&C and hysteroscopy a week ago. No other symptoms. Annual pap normal a couple of months ago. Doc can't tell stage, is referring me to gynecological oncologist for radical hysterectomy and lymph dissection, as the mass is growing into the uterine wall; they don't yet know how far it goes.

 I have three questions right now, for those of you who have a moment to answer one or more of them. Thank you!

 1. What do you wish someone had told you about, warned you about, told you to ask about, etc at the time of diagnosis or your hysterectomy?

 2. Are there questions you encourage me to ask the surgeon, things I might not find in basic web research or conversation with my gyn on Wednesday?

 3. What did you do to manage pain post-hysterectomy, both traditional and alternative? I am allergic to every narcotic ever given to me (opiates and opioids). I've never been sick but when I broke my ribs I had to muster through with ibuprofen -- can't imagine what I'm going to do with this kind of surgery.

 Thanks again!

CheeseQueen57's picture
CheeseQueen57
Posts: 780
Joined: Feb 2016

Tamlen, 

I’m sorry you’ve gotten this news that will most likely change how you look at most things in life forever. At this point, my advice would be don’t get too far ahead of yourself. Take one step at a time. It sounds like you’re on the right track going to a gyn/Onc. Go to the best one at the best facility you can. Your goal now is to get through your surgery and recovery. You won’t know exactly what you’re facing until after you get the pathology from the surgery which takes a couple weeks after surgery which you should use that time for recovery. Truly try to take one day at a time and try not to fill it with waste of time worry. Save the worry for when you have something to worry about. In my experience, the surgery was the easiest part. 

MrsBerry
Posts: 102
Joined: Dec 2017

Hi Tamlen. While I am sure you would prefer not to be here, I Am glad you found this site. 

I am only 11 days post hysterectomy, and do not know my stage yet. Do you know your Type and Grade from the biopsy? That would be a good place to start. Also, will your hysterectomy be laparoscopic and robotic assisted, or open surgery?

many sites, including this one for the American Cancer Society, have pages on What To Ask; I found them helpful. If you can, take someone with you to take notes and remember what the oncologist says.  

If you have a laparoscopic procedure, you may be able to get away with ibuprofen and acetaminophine alternating; ice packs, and/or heating pad. I ditched the oxycodone after a couple of days and didn’t look back. Your doc and/or nurse may also have advice for you on the pain management front.

Like CheeseQueen says, take it one step at a time. Hugs, MrsBerry

MrsBerry
Posts: 102
Joined: Dec 2017

I just thought of something re: pain management. They let me use a couple of lidocaine patches for the first 12 hours. They helped a lot!

saltycandy13
Posts: 167
Joined: Dec 2017

Welcome and I am extremely sorry to read your diagnosis.  We are all in this together.  As far as what to do or ask?  I just had my hysterectomy Friday and I developed a large blood clot.

Did they mention what type you will have?  is it abdominal or with the DaVinci thing?  There are so many ways to do it, so many questions to ask and I never felt I had the whole story and still don't even after today.

The ladies here are wonderful and so intelligent, they know more than me.  Please know I pray a lot and I will be thinking of YOU and adding you to my list of prayers for the sick.  God bless you

Karen

barnyardgal
Posts: 197
Joined: Oct 2017

Re pain management. My pain wasn't bad. An ice pack and regular Tylenol worked for me. I had a laparoscopy and recovery was easier than I thought it would be. 

Donna Faye's picture
Donna Faye
Posts: 214
Joined: Jan 2017

Have had the full monty since Jan. 2016 - surgery, USPC 1A so chemo and radiation 
So I am telling you things I wish I had been told or asked, just in case you need them.

Surgery was fine - no pain and nothing needed - robotic. I was amazed at how well I felt.

Chemo: steriod effects with chemo - be sure to taper off

Risk of blood clots - this was worse part of the experience - 6 months on blood thinners - there are ways to avoid this if you know

I am 77 so at 55 you should do much better. I finished chemo in May and have been attending exercise classes 3 days a week and am feeling strong and ready to start some traveling soon. 

Hope this makes you feel less concern.

 

 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Thanks for the things you wish you'd known up front -- that's exactly the wisdom of experience that I'm looking for (though I bet none of us here want that kind of wisdom!).

I've seen several references to blood clots post-op and at other times, which of course is worrying. You said that there are ways to avoid the clots if you know. Can you say more about that?

CheeseQueen57's picture
CheeseQueen57
Posts: 780
Joined: Feb 2016

After surgery I was put on 14 days of Lovenox injections to prevent blood clots. Something they don’t tell you about pre-op. I guess there’s only so much info you can handle.

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

I had them for 30 days after my surgery, and like you said, they didn't tell me that before hand either!

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

I was on the blood thinning shots for 30 days.  My daughter had to give them to me because I could do do it myself.  I do not like needles.  I even had my son-in-law give them to me a couple of times because my daughter freaked out because my stomach was so bruised from the other shots.  

Take someone with you to take notes.  Find a dr that explains things to you.  If the dr does not take time to explain things maybe find another one that will.  You are your own advocate.  Ask if there are any trials you can get into, but have them explain them to you first or give you a paper on.  I was offered a trila and given the paper on it but then I choose to go with what my dr suggested and not go on the trial.  It worked out well for me.  I am a 6 1/2 year survivor from Uterine MMMT cancer Stage 3C Grade 3 cancer.  I was not expecting that back in April 2011.  I had 6 rounds of Carbo/Taxol and no radiation.  My hair fell out.  No big deal for me as I wear my hair short.  It grow back.  Get a port if you have to have chemo it helps and saves your veins.  Ask the dr before surgery to get a sample of the tumor and send it off for genentic(?) testing.  That can help with what chemo they can give it.  Directly after surgery I had a mophine drip but stopped it within two days and just was on advil or tylenol.  I had the abdominal open surgery, took a bit longer to heal but I did. The drs cannot give any type of information until after surgery when the patholgist do their thing to all the samples.    There are a lot of ladies on this site that can give more information to you and I am sure they will be along soon.  Good Luck and sorry you had to join this club.  trish

Soup52's picture
Soup52
Posts: 894
Joined: Jan 2016

 Welcome to the club that we all wish we had not had to join. I had similar experience as some of the others. Robotic surgery which was easier than other abdominal surgeries and used very little of the narcotics, but used Tylenol etc. Yea, blood clots are always a possibility with abdominal surgeries. I had one a week after donating a kidney to my daughter ten years ago. Nowadays I think most doctors give you something after to help avoid clots. Lovanox shots or something else to thin the blood plus activity is helpful. One thing I wish I had asked was when the dr or in my case his associates would be coming in to tell me about how the surgery went etc. I wish I had known as my husband wasn’t in the room at the time and I was totally clueless about what they told me.

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Thanks, Soup52. Yes, I had that very experience post-D&C -- doc came in briefly, we talked, and later I had no memory of what we discussed! Good advice to make sure my husband is around and ready with the questions I know I'll want answered.

MugsBugs
Posts: 103
Joined: Jan 2018

My surgery is scheduled for the 29th and I am concerned about pain management.  I haven't ever taken any opoids so I am not sure how I will react.  I picked up my pain meds and antibiotics today. 

My mother is allergic to all pain meds and last year she had a hip replacement.  The doctor recommended Tramadol which is a non-opiod drug.  He gave her a few days perscription to try before the surgery to see how she tolerated it.  It worked beautifully.  She successfully used it after surgery

I would write down all your questions before you meet with your surgeon.  I was still in a little bit of shock and disbelief and didn't ask all the questions I wanted to ask.  Luckily I have found this forum and it has been really informative and has answered most of my questions!

Sorry for your diagnosis and good luck to you!

CheeseQueen57's picture
CheeseQueen57
Posts: 780
Joined: Feb 2016

Uh, I think Tramedol is an opioid. 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Thanks so much, MugsBugs. I've got a long list of questions started, many coming as a result of the helpful advice in prior threads of this forum. You are quite a group and I'm so thankful I found you all.

saltycandy13
Posts: 167
Joined: Dec 2017

right now I'm on 600mg Motrin.  It's by prescription.  Seems to be working as I could not get into bed the first night home.  The Vicodin didn't work for me plus constipating and that's one thing you don't need!

I remember have pages of questions.  Good to bring someone with you because what you forget, hopefully they will remember.  I was in a daze and missed a lot the first time.  This is very difficult.  We will do our best to get you through it.  I think if I could make it through, anybody could.  Right now, I'm a mess.  LOL

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Thanks, saltycandy13. You've had a rough few days, hope you're doing better.

Wannabeatit
Posts: 97
Joined: Dec 2017

I recorded all my meetings before and after and brought someone with me. It’s amazing how much you miss even with another pair of ears in the room. Of course I would always ask if recording would be ok.

 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

That's a really good idea -- I will ask and do. Thank you!

cmb's picture
cmb
Posts: 340
Joined: Jan 2018

A few things I recommend asking:

Will you have the CA125 test prior to your surgery? My test result was in the normal range and not useful as a marker for me. But from reading other posts on this site I've learned that not all doctors order this test before surgery. Other ladies who didn't have the test before surgery have regretted not having that pre-surgery test number to measure later CA125 tests results against.

Does the doctor recommend a pre-surgery CT scan? I did have one and that helped the gynecological oncologist plan his surgical strategy, especially as it involved the lymphadenectomy. But not all doctors (and some patients) want to have CT scans as frequently as other doctors might recommend.

Will the tumor be tested for genetic mutations? One or more mutations may impact the recommended treatment plan after surgery.

Good luck with your appointment.

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

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.

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

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. 

 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

derMaus, this is so helpful to me, thanks. I sat down last night and ran a report in my genealogy software that told me what every direct ancester I've found so far has died of. On my Scottish side, there's an uncomfortable pattern of colon and stomach cancer, as I mentioned earlier. My great gran and a 3rd gr gran died of ovarian cancer. Lots to discover from genetic testing, I suspect. I discussed Lynch syndrome with my own gyn last week and she seemed surprised I even knew the term.

I did not know about tumor assays. I'm lucky that my gyn/onc is also a medical school prof specializing in gyn chemo research, so maybe she'll be more open to this type of advance testing than some others might be. But so good to know about this before surgery and before I meet with her next week.

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

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...

 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

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!

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

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...

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

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.

CheeseQueen57's picture
CheeseQueen57
Posts: 780
Joined: Feb 2016

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. 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

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

CheeseQueen57's picture
CheeseQueen57
Posts: 780
Joined: Feb 2016

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

Wannabeatit
Posts: 97
Joined: Dec 2017

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.

MugsBugs
Posts: 103
Joined: Jan 2018

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!

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

thank you!!!!!

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

CheeseQueen57's picture
CheeseQueen57
Posts: 780
Joined: Feb 2016

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

XTREME
Posts: 17
Joined: Feb 2018

My CA125 is always normal, yet it turned out I had serous papillary endometrial cancer, stage 1a, but with one malignancy in peritoneal wash, biopsy said. 2nd opinion chemo specialist my gyn/onc/surgeon sent me to told me one does have to keep getting that CA125 blood test, but it is still unreliable. Now, I'm resisting having chemo - as I think I cannot tolerate it. I described situation in another post tonight. 

Best wishes to everyone.

cmb's picture
cmb
Posts: 340
Joined: Jan 2018

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.

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

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...?"

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

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's picture
Tamlen
Posts: 192
Joined: Jan 2018

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!

CheeseQueen57's picture
CheeseQueen57
Posts: 780
Joined: Feb 2016

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

Northwoodsgirl
Posts: 505
Joined: Oct 2009

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

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

I got really lucky to find you all!

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

So glad to learn about NNCN, Northwoodsgirl, thank you. My husband and I both read a lot of research and fortunately we have the backgrounds that enable us to wade through a lot of it (my husband's a professor who thinks quantitative statistics are fun, weird man), and finding a site where a lot of material is gathered together is really terrific.

I will not use a wig if I end up bald. I'm ok with being openly bald when it's hot outside and using scarves otherwise. I get itchy just wearing a wool winter cap, can't imagine how itchy I'd find a wig!

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

if you do need chemo and want to learn more about cold capping feel free to message me...I cold capped with great success losing less than 30% of my hair (and some I would have lost to menopause anyway). What you see in my photo is me last month 8 months after my last carbo/taxol infusion...

it's not easy to do and I totally understand many do not want to mess with it or go through it but for me my hair is a "thing"...I love having long hair and I think it is a leftover thing from childhood because my mom scarred me for life making me have a Dorothy Hammil haircut and the Carol Brady shag when I was a child. I'm also 53 and single and bald would not be a good look on me...

for a quick reference go to www.wishcaps.com

again I am getting ahead of the game here as you might be lucky enough to not need chemo (I was Stage 4b) and you won't have to worry about it at all...

XTREME
Posts: 17
Joined: Feb 2018

Lori, This is such a helpful thread, & especially this post, thanks.

Still need help with this (no help from doctors here):

"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. "

XTREME
Posts: 17
Joined: Feb 2018

What about this site?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3415201/

it looks more helpful than

NCCN        https://www.nccn.org/

 

How to use NCCN?

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

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's picture
Tamlen
Posts: 192
Joined: Jan 2018

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.

CheeseQueen57's picture
CheeseQueen57
Posts: 780
Joined: Feb 2016

I swear, acupuncture prevented my neuropathy from getting too bad. Taxol (a common chemo drug they use for this) causes neuropathy. 

XTREME
Posts: 17
Joined: Feb 2018

What if feet are already, pre-cancer, severely deformed since about 20 years ago (hugely compromising gait & reducing walking and exercise), and one has diabetic neuropathy?

These are just a few of the reasons I have refused so far to have chemo (just 6 weeks since my surgery for serous papillary EC, stage 1a, with some malignant cells in peritoneum (age 7-73).

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