Fallopian tube girl on your uterine page
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 |
Sep 06, 2020 - 11:14 pm 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. |
Comments
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Welcome
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.
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Thank you, cmb!
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!
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P.S. as to “girl.”
Before there's any confusion, I would like to write that "girl" is a VERY relative term! I'm 65!
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Welcome Alicia! So sorry you
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.
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We are uterine cancer page
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.
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Welcome
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.
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Thank you!!
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
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What a lot to go through.
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.
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Yep, the long haul...
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
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Treatment
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.
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Thx so much!
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
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Hi Alicia, I had 20 lymphalicia2020 said:Thx so much!
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
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.
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The trend now is to doalicia2020 said:Thx so much!
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
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.
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Lymphadema
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?
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I had lymphadenectomy with 30 lymph nodes removed
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!
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Hello, alicia. I see all the
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.
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I will!
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. ❤️
Alicia0 -
Activity for lymphedema prevention
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
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I was hoping!
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
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