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Fallopian tube girl on your uterine page

alicia2020
Posts: 148
Joined: Sep 2020

I'm sorry, Ladies to be on your board, but the PFTC boards (threads) are very quiet and "cmb" replied to my original post and kindly suggested I come here! I'm very impressed by the love and support you all give each other.❤️

Here's my original post:

Posts: 1 
Joined: Sep 2020 

Hi, Ladies

I'm new to this website. I've read a lot of posts and am impressed by the compassion and help available here.

I was just diagnosed a couple of weeks ago and am somewhat desperate for information and help. I had a total hysterectomy a month ago and everything "looked" OK. I had some post menopausal spotting and saw GYN. I had a polyp in my uterus and a small tumor on my ovary. CA125 was 20. Doctor thought there was no cancer, so didn't take any lymph nodes. Two weeks later I finally get the truth and there was a small tumor - 1 cm - inside tube and also on stroma of ovary (attachment ligament, but ovary clean). The other news was that he had done a peritoneal wash and it was positive for malignant cells.

He sent me to oncologist who says 1) I'm Stage 2, 2) tumor Grade 2, 3)now I need another surgery for staging...lymphadenectomy, and 4) I will have to have chemotherapy..every 3 weeks for 6 cycles.

The ONLY good news is that he said at least three times, "You're fixable." I CAN'T imagine that he would say that if he didn't believe it to be true. 

So, I'm having trouble finding out much about my cancer & prognosis because it's so rare. The few boards I have found here have pretty old postings.

Anything anyone can do to help me would be greatly appreciated! I'm still in a bit of shock and having a terrible time wrapping my head around this.

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

alicia2020,

I'm glad that you decided to repost your original message on this board. As I had mentioned, even though your cancer was primarily located in your fallopian tube, the treatments may be very similar to what we members with uterine cancer have gone through. So I hope that we can offer some good advice and support as you proceed down this road that none of us wanted to take.

 

 

alicia2020
Posts: 148
Joined: Sep 2020

You're so kind to help me get to the right place! And to welcome me!

My cancer is "endometriod adenocarcinoma." From what little I can find, it looks like it's the slower growing of the three possible kinds of PFTC, so may be why oncologist is optimistic and allows the same for me. As much as I wish I didn't have to endure a second surgery, I know 1) it's completely necessary for proper staging and 2) at least the original source of my cancer was removed from my body over a month ago.

We have to hold on to the positives!

alicia2020
Posts: 148
Joined: Sep 2020

Before there's any confusion, I would like to write that "girl" is a VERY relative term! I'm 65!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1769
Joined: Jun 2015

Welcome Alicia! So sorry you need to be here but you are in the right place for support and answers! As you have already discovered, CMB is one of our gold stars!

Just in case you haven't seen it; there is a thread 'Ladies going through chemo' that you may find very helpful. It is older - back in 2015 where several of us documented our chemo journeys.

While chemo is not easy, it is doable. There are some newer threads where others have asked questions and documented what helped them. 

Love and Hugs,

Cindi

Be kind to yourself. Know that this is temporary. Remember to let others help you.

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

And fallopian tubes are part of the uterus.  I'm sorry you are having to deal with this, but you are perfectly welcome here.  You have kind of a hard story to read, with the second surgery required.  I asked my surgeon to not take anymore lymph nodes that indicated during surgery, and if by chance I had to go back I would.  They do pathology slides right during surgery.  But I guess your surgeon did not suspect you had cancer.  Although he did a peritoneal wash.   That was a good thing.  And endometrioid is a slower growing type.   Keep in touch. We are here for you.

ConnieSW
Posts: 1550
Joined: Jun 2012

Many of us used to post on the ovarian board when it was active because of the similarities of some of our tumor types and treatments So there is definitely an overlap.  Glad CMB found you.

MAbound
Posts: 1114
Joined: Jun 2016

I used to think of gyn's as specialists, but have since come to appreciate that they are more generalists compared to gyn oncologists. I kind of cringed when I saw that your gyn did your surgery instead of referring you to a gyn oncologist. He had to be thinking maybe cancer because postmenopausal bleeding is never normal and because he did that wash. It's a shame that you have to go through another surgery as a result, but you're on the right track now and that's what counts most. Your doctor is right when he says that this is a very treatable form of uterine cancer, but the surgery and treatments are a chore because they take months longer to get trhough than the surgery itself and have their own recovery periods. Prepare yourself mentally for this taking a while to get through. Glad CMB sent you here because you'll find a lot of information here and we are an active bunch.

Are they waiting until after your next surgery to start chemo? One thing you may want to ask about and research is about genetic and/or genomic testing. It might cost you out-of-pocket to have done, but it can be worth it for the information it can arm your doctor with while he's treating you. Insurance should cover it, but generally doesn't at this date. There is growing hope that they will down the road someday, but that doesn't help you now. 

alicia2020
Posts: 148
Joined: Sep 2020

OMGoodness, Ladies! You are all so wonderful and kind!

Your words of encouragement and advice are so helpful!

Yes, my story is a little messed up because my GYN was so sure I didn't have cancer he did the hysterectomy himself. I had a 'failed hysterescopy" the week before my hysterectomy. He tried to go in for a biopsy, but because I was never able to have children, my cervix was completely uncooperative and it was a bloody mess. He thought the polyp was the source of the bleeding. And I think that when he did the hysterectomy the tumor in that Fallopian tube was so small (1 cm) it was not visible. And the malignant cells on the stroma and meso-ovarian area were also not visible. My pathology report took 3 1/2 weeks because it was sent to MD Anderson for a second opinion. (We live in suburb on the north side of Houston.)

GYN did order CT after first lab report came back, and it was clean. So I don't have evidence of any tumors or even enlarged lymph nodes anywhere.

I can say very little in his defense, but there is next to no cancer in my family.....Not parents, siblings, or grandparents...and with CA so low he really didn't expect or see cancer. . I will ask about the genomic testing. 

I asked ONC how soon after surgery I could start chemo and he said four to six weeks....however long it took me to recover and be ready. I said,  "I'll be ready in three." I will take y'al's advice and read the thread about your chemo journeys. I just got word this afternoon that my lymohdenectomy is scheduled for Sept. 23rd. I have pre-op appointment tmo and I have a big list of questions lined up. He's going to try to do it laparoscopically, which gives me hope that he's not expecting to find a big mess. I did ask that he not take more nodes than necessary.

Each day I'm feeling a little better emotionally. But...wow...it's been a heck of a year for all of us, right? 
Thank you, thank you, thank you for all your kind words and support. I am going to look for your story pages so I can get to know you all better. You are all amazing!

XO,

Alicia

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

What a lot to go through. While your staging classification and some other things will be different than ours, I believe standard chemo is taxol  and carboplatin,  just like us. I'm not sure,  but I think your surgical procedures for ataging may also differ some, because ovarian cancer has a bigher propensity to spread locally through the peritoneum and/or abdomen than endometrial cancer does - we have more of a tendency to skip right over to the lungs. I think things like appendectomy and omentectomy are more commonly done for ovarian. I'm sure you'll find out tomorrow.

 

I will say that I had a combined laparoscopic hysterectomy, bilateral oophorectomy, small lymph node dissection, various little biopsies, plus a cholecystectomy (gallbladder) at the same time, and I started chemo on postop day 22 and was fully ready (physically anyway!). I hadn't been operated on twice in close succession though. 

 

One of the worst things about chemo is the anxiety and dread leading up to it. Believe it or not, once you have one under your belt, a lot of that weight is lifted. It's still a long haul, and some will have a harder time than others, but generally it's pretty doable. Getting past the "unknown " really helps.

alicia2020
Posts: 148
Joined: Sep 2020

Now that initial shock is wearing off a little, I'm psyching myself up for the surgery & chemo.

I had open-heart survery in 2014 to replace my mitral valve which they think was damaged from a high fever when I was young and then became stenosEd over time. So, 9 1/2 hrs on the operating table (that's my fault because I wanted a thoracotomy instead of traditional center incision, which takes longer), 6 days in ICU with A-fib, and woke up with 25 lbs. of tubes and wires hanging off my body. Absolute misery. 6 mths later I spent the winter in Vermont downhill skiing. My point...As much as I dread this staging surgery, nothing is as bad as that heart surgery...and thankfully I was very healthy otherwise..and still am! So I'm hoping that that fact will serve me well. I recovered very nicely from the hysterectomy, but I don't know how happy my body is going to be doing another surgery again so soon. ONC did mention omenectomy was included. 

I didn't mention in previous posts, but as to why my hysterectomy was done so quickly and without any real evidence of cancer looming, that's at my insistence. I really didn't wait for that GYN to suggest it, When he said I had the two problems.,,polyp & little tumor on ovary..I said, '"Look...if that stuff is going to start giving me problems get it all out of there. I've never had any use for those organs (I was infertile) & I certainly don't now!" I pushed for ASAP and I sure am glad I did!

Im so glad I found you ladies. Your help & advice is invaluable! You've all been through a lot and did well!

A

Maxster
Posts: 70
Joined: Apr 2020

I posted this just as your post was changed to this thread.  For what it's worth: Welcome to the Discussion Board.  You will find much help and support on this website.  The women are well informed and willingly share their experiences and advice.  Once you have the staging done, it will help to know the type of cancer as you will find discussions on the different types of uterine cancer.  For example I have serous cancer which is rare but aggressive.  Others have an endometrial cancer that is common and curable.  You can find others who have the type you have.  What type of chemo will you have?  I had six cycles every three weeks of carboplatin and paclitaxel.  I was diagnosed in Sept 2019 and completed radiation and chemo in April of 2020.  Chemo can be rough but I found that drinking lots of water,  being preemptive with laxatives to avoid constipation and exercise were very important.  Icing of hands and feet during chemo is important to prevent neuropathy.  You can find lots of advice on the other uterine cancer posts.  Lastly, always get a second opinion if possible.  Academic centers are invaluable.  MD Anderson in Texas and Memorial Sloan Kettering in NYC are the best places in the world.  I know MSK will do a second opinion by looking at all your records if you cannot get there.  You would have to find out if the insurance would cover this.  I was able to go there in person and my insurance covered the visits.  They received all the records I had to that point in time.  I wanted to make sure that my pathology was read by them and to get a treatment plan.  I am happy with all that came about with that.  You are embarking on a difficult journey during a difficult time.  I wish you the very best.  I was in a state of shock for some time so if you have family/friends who are supportive, they can be a godsend.  The women on this discussion board are terrific.  Read the latest posts for current information.  Also do not read anything on the Internet!  It is often old and not about you and your specific cancer.  

alicia2020
Posts: 148
Joined: Sep 2020

Thank you, Maxster!

My cancer is endometriod adenocarcinoma, so far Stage 2, Grade 2....although my stage may change after lynphadenectomy scheduled for next week. My surgery is to be laparoscopic & is on operating schedule for 1 1/2 hrs, so knowing what they already know from previous tests and hysterectomy, he’s not expecting to find tumors or lots of removal work to be done. My original pathology went to MD Anderson for a second opinion, and I’m sure that will happen with the next report. I will be requesting it. We’re in a suburb north of Houston and these doctors work together regularly, I think.

I’m very worried about ending up with lymphadema. I tried to tell him I preferred he take fewer nodes than more, and he pretty much said they all had to come out (at least the pelvic ones). He will also take para-aortic, “not higher than liver,” he said. I DO need him to save my life, so my attitude has to be, ”Do whatcha gotta do to accomplish that!” Do you ladies have advice about you avoided it? Maybe things I can do before surgery and after that would really help? I started wearing compression socks last week.

Ladies, I can find very little information about how painful this staging surgery is by itself, and recovery time. (Doctor’s office just gives the standard information.)It’s not usual that it happens without being part of the hysterectomy. I had a pretty easy time with the hysterectomy, and generally have a high tolerance for pain, & am otherwise really healthy,but kind of wonder if I need to prepare myself for this to be worse? Geeeeze....I hope not. Have any of you had just the lymphadenectomy alone?

My husband and I are on a little mini-vacation trip to have some great distractions from our new reality and get good rest before surgery. It’s helping immensely!

prayers and good thoughts for all of you! xoxo

Alicia

 

Theskinnyscot's picture
Theskinnyscot
Posts: 33
Joined: Dec 2019

Hi Alicia, I had 20 lymph nodes removed and at my first post-op appointment I asked about lymphedema and numbness at the inguinal fold but it was dismissed and I was told that it would resolve but may take up to a year. I then had radiation therapy and noticed slight swelling on both upper thighs, when I asked the radiologist about it and possible lymphedema he again dismissed it and said that lymphedema was a late symptom of radiation and lymphedectomy. Eventually after completing radiation, I saw my primary care doctor and she thought there was a strong possibility that it was lymphedema but to get a referral to a therapist it would have to be from my oncologist. Eventually I got them to refer me and sure enough I was at somewhere betwee stage 1 and 2 lymphedema. My therapist, who used to be at MSK, said had they listened to me I would have probably been at a stage 0-1. In their defense I am very thin so they did not acknowledge that there was swelling but seemingly, at least at my hospital, Gyno-oncologists are not on top of this like the breast cancer ones. That whole tale is basically just to say, be your own advocate. This site and the ladies on it have been much more informative than my doctor for a lot of things. Best wishes for a positive outcome.

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

The trend now is to do sentinel lymph nodes to reduce the number of lymph nkdes removed. But since you already had your hysterectomy, they can't do that.

alicia2020
Posts: 148
Joined: Sep 2020

Thx for your responses. I did kind of get the brush off about taking too many lymph nodes...doctor saying something like they all had to go as he couldn't tell just by looking at them whether or not they contained cancer. Im going to tell him at surgery pre-op, "I would like to live to be an old lady, but I don't want to be a sick old lady."

I have a well-earned distrust of doctor's and their refusal to listen. I lived in Corpus Christi when my mitral valve stenosis became a life & death issue and those guys almost let me die before they got my diagnosis right. I had been advocating for myself, asking the right questions, and then on the edge of dying from conjestive heart failure before they finally got it right. I keep saying, "It's NOT a breathing issue. It's an exhaustion issue!" They all claimed I had COPD, asthma, & emphysema. And treated me for six long miserable weeks for pneumonia. I had NONE of those things. I needed that valve replaced. Needless to say, I did NOT let those Corpus doctors do my heart surgery.

I hate having to fight every minute to get the best care, but it's a ridiculously difficult system in which to make oneself heard. 

All of your advice is welcome! Compression stockings help? Evelvate legs when possible?

MoeKay
Posts: 329
Joined: Feb 2004

It's been 21 years since my radical hysterectomy and pelvic and paraaortic lymphadenectomy with 30 lymph nodes removed and I haven't had any lymphedema up to this point.  While there are no guarantees in life, I think having an experienced and well-respected gyn-onc performing your surgery goes a long way toward giving you the best chances for a good outcome. 

I also can relate to your misdiagnosis story.  I was told that I had metastatic cancer to the lung and bacterial pneumonia about 10 years after my endometrial cancer diagnosis.  I was treated with antibiotics for months for the pneumonia, which did nothing but cause me additional abdominal issues.  It turned out that I had eosinophilic pneumonia, and not metastatic cancer or bacterial pneumonia, which required long-term steroid treatment to resolve.  So my medical motto is "Trust But Verify." 

Wishing you all the best with your upcoming surgery and chemo!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

Hello, alicia.  I see all the other wonderful women have already covered so many things there is no need for me to add more, other than to ask you please continue to keep us posted.

alicia2020
Posts: 148
Joined: Sep 2020

I'm so glad you didn't ever experience lymphadema, MoeKay! That is very encouraging. 
And I will keep y'all posted, NoTineForCancer!

I'm doing a decent job staying positive.... mostly! but I'm generally an optimistic person. And always very, very grateful for everything wonderful in my life. I'll just have to get through this the best I can & deal with things as they come.

My mother died suddenly of a heart attack when she was only 58, so I unfortunately learned pretty early that life is short and to be grateful for every day. 

You ladies are a treasure. ❤️
Alicia

Tamlen's picture
Tamlen
Posts: 305
Joined: Jan 2018

Alicia, all my pelvic lymph nodes were removed during my hysterectomy and I've been so fearful of lymphedema (I hate tight clothing, so it would be terrible news to me that I need to wear it all the time). It's been over 2 1/2 years now since surgery and so far so good. My oncologists have told me that one of the best preventive measures I can take are to keep weight off and stay very active. I took them to heart and hike or run (and sometimes both) almost every morning before work.

Good luck to you -- your positive outlook and clear understanding that life's short should help you a great deal during this next phase of your life.

Tamlen

alicia2020
Posts: 148
Joined: Sep 2020

Thx so much, Tamlen! I'm so glad to hear another story of avoiding lymphadema. And I was hoping that activity would help. I've been a walker for many years (I hate to run!), so I'm hoping to be able to walk as much as possible. We're just coming off of miserable, miserable hot summer temperatures in Texas and I hope to get back to my walking. 

And thanks for your kind words and encouragement. You all encoutrage me & give me hope.

Alicia

alicia2020
Posts: 148
Joined: Sep 2020

Nothing is ever simple with me. Nothing.

So, I'm go in for staging Lymphadenectomy that should take 1 to 1 1/2 hrs. No. It took 5. I told anyone who would listen, including all I encountered the morning of my surgery, " I don't care what happens in there. I don't care what you find. You do the best you can. Clean it up and shut it down. Bladder, colon, whatever....do what you can, but I am not waking up with permanent bags hanging off my body. I'm NOT giving anyone permission to do that. Period." They all looked at me like I was crazy. Turns out I'm not crazy.

So, on August 5th when GYN did hysterectomy, he reported everything looked good. She's good to go. Not true. On the 20th he reported my CT was "Clean. The surgery got it all." Not true. The CT report read, "Nodular enhancing soft tissue near left vaginal cuff..." Since I'm not a doctor and I was told it was "clean," I dismissed. Turns out ONC wanted to find that tissue and remove.

So, ONC found endometriosis tissue that was cancerous on my colon and one little tumor on my bladder. It turns out GYN "assisted" this time and my husband was told he said repeatedly, "That wasn't there in August." So I ask ONC, " Do I have a second kind of cancer??? One that's fast growing? One that could create these spots in seven weeks?" He's says no...that GYN is good doctor and did a great job with hysterectomy, but not an ONC, so he didn't see it. Great. (That's sarcasm.)

So, in removing what was on my bladder, I ended up with a little tear, that they then repaired. I had to spend night in hospital, and am home with a catheter for a week. Not Happy. They SAY that it will be removed next week, but I can't believe anything they say. ONC swears I'm still "fixable." He said he spent all that time removing every little bit of cancer he could find and chemo would get anything else. He said omention looked good and he found nothing north of pelvis. Lymph nodes all looked normal. I asked, "So am I Stage 4 now?" He said "No!"

Oh....and for anyone wondering about the answer to my question as to how painful is Lymphadenectomy? Answer: Way worse than hysterectomy. But that's probably because of the bladder repair. Who knows. From below my rib cage to my pelvis I am swollen and have a lot of pain.

My ONC and I are going to have to have a serious discussion about truth-telling. I found myself lying there in hospital bed questioning nurses, "Do i still have a bladder???" That can't happen again. I haven't said anything before now because 1) He said he and GYN 'were friends," & 2) I expect in the doctor world there is considerable CYA going on for each other. But I have got to trust this ONC or none of this is going to work. 

i can't do anything now but wait for post-op appointment next Thursday. They say I have to have imaging done, a cystogram, before they can remove catheter. I guess to make sure it's healed enough to support being full of urine. 

Thank goodness my husband is so wonderful and a great nurse. This is all so humiliating...carrying around the urine bag & him emptying it. 

I'm sorry my attitude is not great today. It's just going to take some time to wrap my head around the new information and then move forward. And I've got to straighten out the lying business. A single lie creates a contagion of doubt. Got to fix that!

Good wishes to all!

Alicia

 

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

Oh Alicia, I'm so sorry that this latest surgery turned into such a bad experience. I know that other women here have had to keep a catheter for a longer period after their surgeries. Hopefully they'll read this and share their experience. How fortunate that your husband is so helpful during this difficult time.

Waiting for the pathology report on what the doctor removed during surgery is always an anxious time. I hope that you can get some straight answers at your post-op appointment and a clear explanation of the next steps. I can understand how frustrating it must be not to have all the information you need right now.

In the meantime, try to rest as much as you can, although I know that is difficult when you're in pain. And come back to update us or just to vent when you need to. We're here for you.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hello Alicia:

So sorry you have to go through this.  I know you feel the catheter is a pain but you need it in to let the bladder heal.   I had a catheter in for over a week because of a bladder knick too.   You would be surprised on how many people have urine bags or colostomies and you wouldn't even know it.   I know you feel that this is a lot to take in at this time.  Also, I went through many doctors.   After we learned that if its not going right or you don't have a good rapor with the doctors, you may want to switch, if you are able too.  

Its good you have good support with your husband.   Wishing you all the best.

Kathy

MAbound
Posts: 1114
Joined: Jun 2016

It's understandable to be upset with all that you are going through, especially with unexpected issues come up and have to be dealt with, but I think your situation is not all that unusual. In order to cope with the shock of a cancer diagnosis and what it means, we are all a bit hungry for information and have a hard time being patient with the process of learning what needs to be learned before there can be certainty.

I think our doctors would prefer to not tell us much until after they have our final pathology from surgery and a treatment plan in place, but we push them to give us an idea of what we are in for so that we can mentally prepare ourselves and then want to hold them to anything they tell us like it's written in stone.  Medicine is far from an exact science, so I wouldn't consider it lying when things like what happens during surgery or changes to staging occur between original estimates and final results. Getting from diagnosis, through surgery and recovery, to a treatment plan is a process involving tweeking along the way. It takes patience and understanding, but you are getting closer. Getting a final treatment plan should be a big relief.

Surgeons never operate alone, so having the doctor who did the original surgery assist him was probably very helpful and in your best interest.

For now, focus on your recovery. The catheter will help to make sure you don't overdo activities at home. I had a catheter and drainage tube to cope with at home for four weeks, so I can appreciate how not fun it is, especially for sleeping. Don't feel humiliated getting help you need from your husband because I'm sure he sees it as a way he can show his love and feel less helpless about what you are going through. Our spouses go through cancer right along with us, so it's important for you to take care of each other as you go along and let your loved ones help you.

alicia2020
Posts: 148
Joined: Sep 2020

Thank you so much for your kind words & support. It's wonderful to know I'm not alone and y'all are there for me. I'll get my head wrapped around this & be much better, but it's going to take a few days. I've read your stories & I know how much you've been through. You are all very brave and I aspire to be like you! I'll get there with time.

I was glad to know GYN assisted. If nothing else I think he could stand to learn a few things & maybe the next girl will benefit from my experience. He lied by omission....knew much more than he disclosed, so that when I got my hands on the path reports I knew what he had neglected to tell me.

And bless my husband's heart...they left him in that waiting room for 5 hours with no communication as to what was occurring. I hope that doesn't happen again. You're right that by helping me it makes him feel like he's able to DO something. My sister has always had little endearing nicknames for him. After his performance during my heart surgery & recovery, he became known as "Saint Edward." And he IS that! I have lots of support from family & friends, too. I'm so lucky & grateful for it.

I know I'll feel better when we get the cath out Thursday and hopefully pathology reports are also available. Then we can move forward! And thanks for reminding me it's not an exact science & I need to be more patient with the "practice" of medicine!

xo,

Alicia

alicia2020
Posts: 148
Joined: Sep 2020

Hi, y'all 

I had my post-op appointment yesterday afternoon & unfortunately, not much news to tell.

They did remove the catheter, thank goodness. Cystogram revealed perfect bladder with smooth edges and no leaks. We only know this because we saw for ourselves on screen and radiologist told us. 

Young nurse said original pathology report has been sent for a second opinion (I can assume to someone at MD Anderson, although I didn't bother to ask). And it will be two more weeks until I have appointment to hear that report. I'm learning that there's no urgency in cancer.  Very disappointing, but expected. She explained they needed more information so "they could give me the best treatment possible." 

I cried and was upset, explaining that everything for the past week was painful, difficult, and that I had absolutely no sense of control of my circumstances, which was a huge part of my misery. Instead of reassuring me that things would improve, she said I needed to "get used to that" because for a long time in the future I will have no control over anything. For a 20-something year-old to say that so flippantly to a 65 year old, smart, capable, independent woman seemed absolutely outrageous to me, but I let it go. 

I hope you ladies are having a good week.

Alicia

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Im so sorry Alicia that she spoke to you that way.  You will have people like that.  There are ways of saying something without making you feel uncomfortable.    She should have been more compassionate to your circumstances.  I can tell you a lot of things, but right now I think you need some space to gather your thoughts.  Don't let this person get to you.

(((HUGS)))

Kathy

alicia2020
Posts: 148
Joined: Sep 2020

I know I'm not in a good place emotionally, but part of it has been that I'm not very comfortable with that ONC or his office. He said something very inappropriate to me in our first meeting....a remark which I don't even want to repeat here, and his nurse has this abundantly cheerful attitude which I also find inappropriat. I get it that positivity is vitally important, but being overly cheereful seems dismissive of the seriousness of a cancer diagnosis and treatment.

i have not changed doctors because I felt like I couldn't afford the wait.....I couldn't afford for my surgery to be further postponed. After I get my pathology reports, I may need to change.

i am very interested in all the advice that you can offer. I have wondered if many of the ladies here have experienced that feeling of having no control. Ladies, do you feel like you have any control? Do you feel like anyone is listening and/or taking your wishes into consideration?

Hugs back!

Alicia

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Alicia:

I have changed many doctors over the years.  I said the one doctor I was stuck with for awhile I felt that all I was was a Bar Code.  You go in, they scan you, and then just give you rote answers.  They don't look at you as a person.  You can go to two or three different doctors who can basically give you the same advice but I rather go with the doctor that has compassion and gives you the time that you deserve.

I also had one doctor who I had to travel 3 hours to see.  I waited over 2 hours to see him.  He comes in and shows me his screen and indicates how far behind he was.  Then he rushed me in and out.   Last time I saw that doctor.

Hang in there Alicia.  Vent here on this site.   We are listening.

All my best,

Kathay

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

alicia, I am sorry I had little connectivity that week in Sept when you were posting info, but I did see the wonderful ladies here were available to support.  

Are you working with a gynecologic oncologist?  I see GYN and ONC, but maybe you can ensure a second gynecologic oncologist is brought in.  These are always tough conversations but if I could suggest by asking, "Can you please tell me who the gynecologic oncologist is and if I would be able to talk with them as well?"  

What you wrote about being uncomfortable about something said should never had happened.  Since we are talking about your life, and you are putting your life in their hands, I would want to be comfortable with them.  Personally, I know other patients who loved my radiologist but I didn't care for him.  When offered to go to him during follow-ups I said NO.  

Our physicians and nurses have to listen to us.  If not you have to be your own advocate, which can be difficult, but it is your life.  Maybe you can look for another gyn onc in your area and reach out to their office?  I know it doesn't seem fair that you have to fight a disease and push for your answers.

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

Alicia,

As Kaleena and NoTime wrote, you do need to be confident with the medical professionals working with you while dealing with cancer. So if you continue to find your current team unsatisfactory, you may need to make a change.

Having said that, however, the gynecological oncologist who did my surgery and I still see for follow-up is not the most personable. During my first appointment with him he said that my type of cancer was a "life-ender" if not treated aggressively.

Now I'm pretty pragmatic and appreciated his frankness. But I can certainly understand that another woman might find this comment offensive or disturbing. However, he did a good job with my surgery and worked with the medical and radiation oncologist throughout my treatment period.

I was lucky to have a very good nurse in the gynecological oncologist office who had personally experienced cancer years earlier. I really liked both her and the medical oncology nurse who delivered my outpatient chemo. The medical oncologist and radiation oncologists were both fine.

The time period between initial diagnosis and the start of any post-surgery treatment is stressful for most people. It's unfortunate that this period has been extended for you, but I'm glad they've sent for a 2nd opinion on pathology so you'll know what you're dealing with and the treatment plan can be customized for you. Other women have also had a slow start to post-surgery treatment for a variety of reasons.

Personally, I was quite busy with work and helping my sister move to a condo during the weeks after diagnosis and before I had surgery, so I was able to focus on something other than cancer. The five weeks after surgery until I was able to start chemo was a more worrisome period.

But the good news is that you were able to have the catheter removed. So that's definitely a positive. 

alicia2020
Posts: 148
Joined: Sep 2020

Dear K, NTFC & cmb...and others!

Your support means the world to me!

The ONC is a gynecological oncologist. He does have a very good reputation in the Houston area. The inappropriate remark didn't have to do with my diagnoasis or prognosis, but he was trying to be funny...it was a sexual remark...and completely insensitive and unappreciated. Seriously...it was so unacceptable I don't want to tell here...it was that bad. He apparently is a little quirky and says off the wall kinds of things, also. Like in describing how healthy my liver looked he said, "It looked good enough to eat." Apparently, his "filter" needs some work. I can live with it, as long as he can be best at trying to save my life.

As to that nurse.....I've decided while I'd say she considers herself a cheerleader, she's actually more like a bully. And I've never responded well to people who think they can dictate how I feel. I think I will try to explain to her next time that while positivity is important it is not heathy to disallow a patient's negative emotions. A person in these circumstances has a whole range of emotions, and they must be allowed to voice those to be able to process them and then move forward. 

I'm still in a lot of pain....but it's only been 11 days since my surgery, so I must be patient. At least without dragging that catheter bag around I feel a little more human! The waiting for chemotherapy is hard, but I know I have to heal before we start it.

Thanks for listening, Sweet Ladies! 
Again, all advice is welcome!

xo,

Alicia

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LisaPizza
Posts: 340
Joined: Feb 2018

You might get a laugh at my inappropriate remarks story. After completing rads, I had my final follow up with my young, male radiation oncologist. He did a pelvic exam, and while I'm laying there in stirrups and he's way up in my business, he's saying, "Beautiful! You look fantastic!"  ... Um, thanks? Lol - I wasn't offended and thought it was pretty funny ... but really, pretty awkward!

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

Oh, your doctor's "sense of humor" would be a turn off for me too. I'm not fond of people who tell "jokes" at the best of times (although I like people who are naturally funny and a bit snarky in their observations – but at the appropriate time and place – not during a cancer appointment). That behavior alone might be enough to have me switch to another doctor.

My one sister is the "always positive" person who was frankly wearing on me when I was first diagnosed and throughout treatment. Fortunately, my other sister and close friends were supportive without that annoying "positive thinking" mantra. Some people are naturally inclined to be optimistic while others are more pessimistic. I personally like to prepare for the worst while hoping for the best. But each response is valid if it's what's natural for that person.

So I agree with your intention to talk to the nurse about how you are feeling. It may not change her behavior (my sister didn't change hers despite my comments), but I'm sure you'd feel better if you said something.

alicia2020
Posts: 148
Joined: Sep 2020

You can't beat that, LisaPizza.....being told your parts are beautiful!!! 😂

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TeddyandBears_Mom
Posts: 1769
Joined: Jun 2015

Thanks for the laugh tonight LisaPizza! That really was funny.

Love and Hugs,

Cindi

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

If a doctor had told me my innards were "beautiful" I would have laughed too.  

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jan9wils
Posts: 155
Joined: Mar 2017

Alicia, this is just my opinion here. I think a sexual comment in an attempt at humor from a GYN to a patient is extremely unprofessional. I would call him on it and ask for a referral for another Gyn/Onc.  Houston has many top doctors, he isn't the only one. I am so sorry this has happened to you. I am glad you got the cath out and your bladder is A-OK!

alicia2020
Posts: 148
Joined: Sep 2020

I appreciate all you ladies so much!

Right now I'm just in a holding pattern waiting to finally get my pathology reports next Thursday. I'm going to hear what he has to say....make sure I have hard copies of my reports in my hot little hands...and then I may decide to go elsewhere. Geographicaly, I am in one of the best places in the world for cancer treatment...thank goodness! One of my friends has a female GYN/ONC in The Woodlands, and I may decide/need to go there. 
i'm a funny girl with a great sense of humor, but I've always said about myself, "I NEVER laugh about money!!"
I guess my new saying will be, "I NEVER laugh about money or cancer!" 
I'll let you know what happens!

😎, A

Mercorby
Posts: 32
Joined: Jan 2017

Hi,

I know much has happened since your original post, but I just needed to make a comment.  I also am being treated for endometrial cancer.  I had two recurrences. 

 

The reason I am responding to this post is that I am on Ibrance and an aromatase inhibitor as maintenance therapy.  It is working for me, but it is not prescribed for this cancer in the U.S.  It is prescribed for metastatic breast cancer - ER+ and PR+ and HER2-.   That is the same as my cancer.  I have to subscribe to metastatic breast cancer boards to find people receiving the same treatment as me. I am not treated as an outsider on that board.  So,  we do what we need to do to get support.  I am glad that you joined our group and are hopefully getting the support you need.

alicia2020
Posts: 148
Joined: Sep 2020

So.., the GO's office just called to tell me that they don't have the final pathology report from my surgery and that it will be two more weeks before they get it. They wanted to warn me that there would be NO discussion about chemotherapy today. That nurse I'm not fond of said, "You can come in and talk about your feelings..." OMG! Are you kidding me? She said they "...still have determined the origin of your cancer cells and we can't proceed to treatment until we know that." I said, "I'm not a rocket scientist, but I would say that all roads lead to the Fallopian tube," She replied, "Not necessariy." 
I asked, "If I come today can we talk about the pathology you DO have from my surgery?" She assured me we could. I said I would come if we could do that AND I could leave there with copies of that report in my hand. She said I could.

I'm so upset, Y'all! Have any of you ever heard of such a thing? It taking 5+ weeks for pathology? And I'm scared to death that there's some new/different cancer and that's why they can't figure out "origin." After surgery he talked about removing "layers" of endometrial tissue and scarring to get cancer off that colon "bumper" and bladder. Last time I knew endometriosis originated in the uterus (and there was no cancer in my uterus, so endometriosis was present and became cancerous outside the uterus). And if the original source...the Fallopian tube... was removed August 5th and was not a part of the September 23rd pathology, how could they identify it as the source??? That's a question I will ask this afternoon.

I complained that "cancer cells are growing in my body as we speak" & that "no one but me seems to possess a sense of urgency," and she insisted that's not true. 
I asked why can't we begin treatment based on what we DO know? Nope.

Thank you for listening, friends. I just needed to vent. I'll let you know what they say later this evening. 

xo, Alicia 

 

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

So frustrating.  I will say that reading pathology is much more variable than people think. Scary but true. Also, in terms of determining origin, they can do a lot of different laboratory testing that helps them determine origin. I don't think difficulty or taking extra steps to be sure necessarily means you have something bad or rare. I think some cases can just be harder to read than others. I do think a careful and accurate pathology determination is really important, and sometimes regret not pursuing a second pathology and treatment opinion, just as a matter of course.  I wish it was standard.

 

But all the waiting is so difficult. I only waited a week and a half (a miserable week and a half due to a misunderstanding in what she told me at the hospital, which left me thinking I may have a distant met from an unknown primary). I can't imagine waiting for so long, but I have seen many ladies have a very similar situation to yours.

 

You would sure think oncology staff, of all people, would have better people skills.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

You're so right about that Lisa.  They never did determine my primary.  They ended up calling it Endometrial Adenocarcinoma but treating it as Ovarian.   They thought it might be MMM but wasn't sure.

 

 

MAbound
Posts: 1114
Joined: Jun 2016

My tissue was sent to 3 labs in 3 different states for testing because there was some suspicion that I had 2 separate cancers (cervical and endometrial) growing at the same time towards each other, but it was ultimately determined that the opposite was true...the cancer originated in the neck of my uterus and had grown down into the cervix as well as upward into the fundus. It was one cancer, not two, thank goodness! They also had to tease out if one of my fallopian tubes had been contaminated during handling. It took 4 weeks for my pathology to be finalized. The point is, pathology testing is rather tricky and a conscientous surgeon is going to get multiple opinions before finalizing your staging and pathology to determine your plan of treatment. So much rides on getting it right. You want him to be thorough, so it can take some time. Your case is a bit outside of the norm because of the two surgeries and a rarer probable point of origin, so I think I would take comfort from them taking more time to get your pathology right.

We all want the cancer out of us, like yesterday, when we get diagnosed, but this is a slow growing cancer and there is time to spend on testing, getting 2nd or 3rd opinions and the like before rushing into treatment. I'd start researching and looking into genetic and or genomic testing at this point because that would give your oncologist even more ammunition and guidance for treating you. Insurance won't cover it, but it can be worth paying for out-of-pocket. You don't have to hold off on treatment while doing it, either. While you are feeling this sense of urgency, I'd advise you to step-back and just breath a bit. There is time to get diagnosed correctly and get what is the best treatment for you.

alicia2020
Posts: 148
Joined: Sep 2020

Thank you, LisaPizza & MAbound! That is very helpful....the idea of being patient & because of my cancer type we have time to get it right. It's just soooo frustrating!

I think it was in an earlier post in this thread that I made reference to the fact that nothing is ever simple when it comes to me. Nothing! I was just really, really hoping that this afternoon's appointment would be different and we could get a straight answer & move forward.

I've done extensive reading on endometriosis becoming malignant and being found on other pelvic structures since my last post. So....it's called "etragonadal," (now there's a word I don't really want to know!)...and of course, it's extremely rare, but that's what probably happened with my bladder.

Huh.....she said this delay is all about finding the original source of my cancer....remember how I've worried that the GYN drug all my stuff out of there, so sure it wasn't cancer, that he left all kinds of cancer cells spread everywhere! And GO reported that GYN said repeatedly during my last surgery, "that wasn't there in August!" Might I suggest that HE was the source??? Just a thought..... (My goal today is to gain information, not make people mad, so I will try to keep quiet :))

I'll let y'all know!

Alicia

alicia2020
Posts: 148
Joined: Sep 2020

Sorry that new word is "extragonada!"

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

I have it too.  This is just an additional fact.  We have a friend who is a pathologist.  He told me that endometriosis is endometrium OUTSIDE the uterus.  AND it is developed while you are still an embyo.  The endometrial cells are depostited in the wrong place at a very early stage of. our development.  It wasn't something anyone did.  And it is always outside the uterus.

alicia2020
Posts: 148
Joined: Sep 2020

Thx, Forherself! I did not know that...about it always being there! 
Originally I asked GO about where my cancer was and that maybe it didn't necessarily spread in the traditional way of if, but that the endometriosis was there....in any number of spots...and then became cancerous. His only reply, "Well...we'll never know because we weren't there when it happened." I'm going to ask that same question again today and see if his answer is any different. 
Just have to wait a couple of more hours...

❤️, Alicia

alicia2020
Posts: 148
Joined: Sep 2020

So, 4:45 pm appointment time.  6+ women crowded into tiny waiting area, with no empty chairs...all wearing masks, but actually seated shoulder to shoulder. Receptionist tells me the wait will be at least 2 hours. Says, "Do you want to wait?" I said, "Uhhhhh... H**l, No!!" I ask for my promised "pieces of paper" (the pathology they said theyDID have and would give me) No. Come back tomorow. 

I didn't feel good enough to sit in a bad chair for 2hours & what a dangerous situation with those women packed in there like sardines. No way!

I have an appointment at 8:30am. 
Let you know if I learn anything!

Good night, dear Ladies!

Alicia

MAbound
Posts: 1114
Joined: Jun 2016

I loved my gyn oncologist. He was such a compassionate, patient man who let me bring in my husband to appointments and took the time to answer both of our questions even if I came in with a page of them written down. He treated each of his patients in treatment this way because we all had so many questions and decisions to be made throughout the whole months-long process.

The flip side of his being this way was that I often had to wait way past my appointment times to get my turn with him. I didn't let it get to me because I knew that he was doing for someone else what he was doing for me and he was worth waiting for. I made sure that I always took something to keep me entertained while waiting.

I imagine that Covid is making all of that a lot harder these days, but if the waiting room feels unsafe, couldn't you give them your cell number and wait out in your car till they can take you in? It's not ideal, I know, but such are the times we are living in and being adaptable will serve you a lot better than getting upset with what can't be changed. Waiting extra for appointments is very likely going to be more the norm than the exception for your foreseeable future, so I recommend being prepared for that so that it will be less upsetting. Having cancer takes the patience of Job sometimes, but you gotta do what you gotta do!

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