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Uterine mass after endometrial ablation

Jamiek
Posts: 25
Joined: Aug 2018

I am currently awaiting results of a biopsy I had yesterday and I’m terrified and the wait is torture . 

 

I am 48 and currently am experiencing menopausal symptoms. In 2014 I had an ablation for abnormal uterine bleeding. I’m afraid the ablation has masked symptoms so I have no idea how long I’ve truly been having issues. I went for a routine Pap and gynecologist said he could see what looked like a polyp pushing down through my cervix. That was July 25th and I had an ultrasound on August 1st. The nurse called me yesterday and said that the ultrasound showed a 2.5 cm mass and that it was too vascular to be a fibroid. I got in to see my doctor yesterday afternoon. He was very reassuring and said he really feels like it’s a polyp. Especially after I told him I felt like I was trying to give birth to it!!! The pressure and cramps are pretty bad. He was able to do a biopsy and scrape out quite a bit of tissue for a good sample. I am currently scheduled for a hysterectomy on Monday and he will proceed if biopsy comes back benign. 

 

The waiting is awful. It’s all I can think about and I can’t stop my mind from going to dark places. Had anyone ever had a mass after ablation? 

Northwoodsgirl
Posts: 498
Joined: Oct 2009

Welcome to this forum. I am sorry you are going through this uncertainty in your diagnosis. Many of us have had the same agonizing wait and uncertainty.

You probably don’t have cancer. If your biopsy comes back as cancer or suspicious for cancer then find an GYN/Oncologist to perform the hysterectomy. The reason is because if it is cancer the GYN/Oncologist is specially trained to remove and treat cancer. There are many symptoms of gynecological cancer that could also be symptoms of not having cancer. So as we tell each other to slow down, take a deep breath and don’ t read all the awful things you see on the internet. You aren’ t likely to actually have cancer.

Please keep us posted on your results.

Others will post answers to your questions. It is so hard not to worry, but dear one please try to remember that you most likely don’ t actually have cancer. Do you have a family history of cancer? I will keep you in my prayers. 

Lori

Jamiek
Posts: 25
Joined: Aug 2018

Lori,

 

Thank you so much for the encouraging words. That does make me feel a lot better to have someone to talk to as it relieves a lot of anxiety. I have been guilty of sitting home alone and reading things in the internet and I know I shouldn’t. 

My Dr said if it does come back malignant he will cancel the surgery and refer me to a gyn/oncologist.

I have had MANY relatives with cancer including my dad, grandparents and aunts and uncles. I know this adds to my fear. 

Thank you again, you have been so reassuring! I should know something in the next couple of days so I will post an update. 

oldbeauty
Posts: 180
Joined: May 2012

Hello Jamie K, I have been treated 3x in 12 years for uterine cancer and have experience with my first treatment being done by an OB/GYN rather than a GYN/ONC.  In 2005, I had post-menopausal bleeding and had a trans-vaginal ultrasound that showed some concerning things.  I was new in town and I was referred to an OB/GYN by a friend who is a hematologist oncologist.  I was scheduled for a hysteroscopy (or maybe it was a D&C), an out patient procedure.  I woke up in the middle of the night in a hospital room, having had no preconception that that was a possibility, and waited until mid-morning until someone came by to give me the bad news.  I collected my surgical records in the course of getting a second opinion for post-surgical treatment and read with great resentment the CYA narrative the doctor put in there about us having a thorough pre-surgical consult where I supposedly said I wanted him to proceed to a hysterectomy if the procedure determined the concerning area was cancer.  If that was true why do I remember telling my husband the night before that there was nothing to worry about, it was likely fibroids and why did I wake up shocked to find myself in the hospital knowing only that something was terribly wrong.  I don't say he was a bad doctor or that anything he did caused my first recurrence 5 years later.  I'm sure he was, like my friend said, a terrific surgeon.  And I think, that day, the doctor served his interest ahead of mine.  I did not get the blue ribbon standard protocol surgery for uterine cancer.  I had no sentinel node sampling, which, if done, might have found cancer cells that migrated out of the uterus and I might have had a more comprehensive treatment that might have actually cured me.  My pathology was for a Stage IC, Grade II endometrioid adenocarcinoma (the type you want to have if you have to have cancer).

In the years since, I have learned that it is very, very seldom the case that you need immediate surgery.  There is no good reason my doctor should not have stopped at the procedure I checked in for and then handed me off to a GYN ONC for a hysterectomy, where sentinel node sampling would have been done.  In my case, the doctor's choice of incision made it impossible to do a sentinel node sampling even though he asked the hospital's chief of gyn onc to step in to the operating theater to assis at that point.

You write in your OP that your doctor intends to proceed if the biopsy comes back "benign."  Did you mean that or did you mean to say he would proceed only if the biopsy comes back malignant?  Either way, I would say get a second opinion before proceeding from a gynecological oncologist.  If, in fact, your doctor intends to proceed to hysterectomy if the biopsy comes back benign in order to treat your ongoing condition that the ablation was for, I'd still say to err on the side of caution and seek out a gyn onc who will do the hysterectomy.

I had no family history of cancer (except for heavy smoker father) and I had no other risk factors , e.g., obesity, except that I never had a child. If you look at the Mayo Clinic website that discusses uterine polyps it says that if the polyp pathology comes back as cancerous or pre-cancerous, your doctor will discuss with you the next step for treatment.  In other words, you don't go on to surgery until you have a detailed consultation on the results of your ultrasound and the tissue biopsy.  My poor husband was summoned to give consent to my hysterectomy completely unprepared.  And if the doctor and I had had such a thorough pre-surgical consult where I agreed to have treatment based on what transpired during what was supposed to be an investigative procedure, why did he ask my husband for consent?

I am sorry you are in pain.  Are you being adequately treated for that?  But your story resonates with me, and if I had to do it over again, I would be sure to tell the ob/gyn going in specifically that he did not have my permission to do a hysterectomy without discussing it with ME first.

Best wishes, Oldbeauty

 

Jamiek
Posts: 25
Joined: Aug 2018

Oldbeauty,

 

I am so sorry to hear what you have gone through. What a traumatic experience. It doesn’t seem very ethical at all. You have given me reason to really reconsider my options. He told me if it comes back malignant that we will not do surgery and he will refer me to gyn/oncologist, but if it is benign he recommends proceeding with hysterectomy based on my long history of problems. I had precancerous cells frozen on my cervix at age 20, a uterine polyp and hemorrhagic cyst on my ovary removed at age 34 , the ablation for the abnormal uterine bleeding at 44 and now this. Do you think it’s a bad idea to proceed with the hysterectomy if the biopsy is benign? Do you mind me asking the status of your cancer now? I hope to hear that you are in remission. You have been through so much. My prayers are with you. 

 

 

oldbeauty
Posts: 180
Joined: May 2012

Thanks for your kind words.  Yes, I am in remission again.  I seem to be a fortunate outlier who confounds science and keeps going. I've had surgery and radiation once, radiation and hormone therapy once and chemotherapy once.  Today is one year after my last chemo infusion, and I feel reasonably well.  Before the cancer diagnosis, I was aware of uterine fibroids and I had one ovary removed 8 years prior that was benign for cancer.  And yet....It sounds llike you've been followed by the same physician for awhile.  If you have confidence in him that is important.  And I do not doubt that gyn's do plenty of hysterectomies.  At 44, you probably are not anxious to be put into surgical menopause but I've never been sentimental about my female parts so I'd not shed any tears about losing an organ that is giving me such problems.  But that's me.  Even if you've been with this doctor for a long time, given that you have a lengthy history, including finding precancerous cells, if you live in an area where there are good resources, I think it might be wise to at least get a second opinion from a gyn oncologist about your options, even if the biopsy comes back negative.  And if the biopsy comes back inconclusive because there are not sufficient cells, that's another issue.  I wish you the best of luck and outcomes as you travel this path.  As others say, it's most likely not cancer but it may be and everyone here would urge you to be your own fiercest advocate and plan well for how you want to be treated so you get the best job from the professional best equipped to help you identify and address your problem.  Best wishes, Oldbeauty

Jamiek
Posts: 25
Joined: Aug 2018

That is wonderful news that you are in remission...what a blessing! I’m going through menopause right now so I’m not concerned with a hysterectomy and frankly I just want everything out! I am blessed that I’ve been able to have a wonderful daughter but other than that my female parts have  given me nothing but trouble!

You and others on here have provided me with such valuable information and the knowledge that I need to see a gyn/onc as my next step...regardless of the biopsy outcome. I live close to Dallas so feel confident that I can find someone good. 

Thank you you again and congratulations!

Northwoodsgirl
Posts: 498
Joined: Oct 2009

Old Beauty, Thank you for sharing the details of your cancer surgery and diagnosis. You too have suffered needlessly by a surgeon who had no business operating on you if you had cancer. Thank you for sharing your cautionary story. 

Lori

Kathy G.'s picture
Kathy G.
Posts: 200
Joined: Dec 2012

Hi Jamie!

Sorry to hear about all the medical issues you have experienced regarding your female parts!

 

I went to my regular gyn about post menopausal bleeding. He did an office biopsy and sent it off to the lab. He called a few days later and informed me it was cancer. He referred me to a gyn-onc for further testing.

The gyn-onc seemed rather cocky to me, but looked at my biopsy results and said my cancer was early stage & grade. He did a robotic radical hysterectomy with testing of 21 lymph nodes.

 

I was stage 1a/grade 1 with only 11% invasion into uterine wall. He was right on target - I was very early stage!

 

The ladies on here will recommend referral to a gyn-onc because as specialists they recognize signs & symptoms our gynecologists might miss.

 

I am lucky I was referred to the gyn-onc because I didn't know any better at the time. Plus, I was at higher risk for uterine cancer given my HBP, obesity and heavy, heavy prolonged bleeding during peri-menopause.

 

In your case with your history I would consider requesting a D&C and if that came back as cancer get a gyn onc to do the surgery. I wouldn't want my regular gyn to go in thinking the problem was benign only to find something more serious!

 

Best of luck as you proceed through this process. It is scary as hell, but these ladies are of great support!

Jamiek
Posts: 25
Joined: Aug 2018

Kathy,

Thank you for responding. I am so glad to hear that yours was caught so early. Your story makes me feel less anxious. 

Ive made the decision to go ahead and see a gyn/onc for a second opinion. 

I will be researching doctors today and hopefully I can get in to see one soon!

Thank you again!

Jamiek
Posts: 25
Joined: Aug 2018

I just got the dreaded call. Biopsy shows cancer of my cervix. He is referring me to a gyn/onc. 

LisaPizza's picture
LisaPizza
Posts: 196
Joined: Feb 2018

Oh, I'm sorry, we all know what that call is like. I will say that at least having an answer really gives you something to focus on ... your plan for treating this thing and getting rid of it. I'm sure you'll put yourself in very good hands. One day at a time. Sometimes it feels endless, it sure did to me, but in June I finally finished my treatments and it feels wonderful. You'll get there. 

Jamiek
Posts: 25
Joined: Aug 2018

Thank you! I do have to say it feels better to know than to wait and wonder. Now on to moving forward and dealing with this!

Northwoodsgirl
Posts: 498
Joined: Oct 2009

I am so very sorry you have cancer!

Once you get the surgical pathology report back you will know the specifics and treatment plan. This will be a summer and fall to look back on and just know that you are a strong woman.

You are not alone in your fight. Start planning for your surgery now. Buy some new yoga or sweat pants, a soft bra, put fresh linens on your bed so when you come home it will be comfy. Try to set next to your bed what you need to be comfortable. 

Have a pillow with you for the ride home to splint your abdomen as bumps in the road hurt. If you have a laproscopic procedure you will have much shorter and less painful recovery time. Make sure to get some Miralax or stool softener and take after surgery to avoid severe constipation. Drink lots of water to flush anasthesia out if your system and to keep your “plumbing” working. Make sure to take a few of the blue disposable emesis (vomit) bags home from the hospital. Keep one in the car and one by your bedside. 

Eat food that is protein because that is needed to heal. Take your pain meds as ordered. Take pain med about 30 minutes before you get in car to go home from the hospital. Also helps to take before you try walking. Walk as much as you can to prevent blood clots from developing from inactivity.  Whew! A lot to know but every one of us can help you based on our own experience. Take care dear one.... we are here to help.....you are strong! ((Hug))

Keep posting so we can help. Your emotions may vary as you learn to accept what your diagnosis means. You may be on an emotional roller coaster that only others who have fought cancer can truly understand. 

Lori

Jamiek
Posts: 25
Joined: Aug 2018

I just cried reading your post. Thank you for the time and effort you put in to letting me know all these things I never would have thought of. I’m so glad I have joined and have had the privledge of talking to such supportive ladies with so much knowledge.  

Kathy G.'s picture
Kathy G.
Posts: 200
Joined: Dec 2012

Jamie, so sorry you got that call. On the plus side I agree it is so much better to know than to be in the waiting and wondering stage. My mind and trips to Dr. Google made me crazy, but once I found this site I knew I was blessed! So much good, reliable up to date info provided by a sisterhood of women with first hand nature of this particular cancer.

One of my biggest fears was dying of cancer and/or losing my hair due to potential chemo. Many special ladies here pointed out cancer is now more of a treatable vs. deadly disease. That is a fact.

 

You may need chemo based on your type, stage & grade of cancer, but not all ladies lose their hair. They can share some of their info if you need to go that route.

 

Northwoodsgirl covered just about everything you need to know pre & post op. You will be fine and you will recover. In many ways cancer was a blessing for me....1 because it was caught early, but 2 because it motivated me to re-evaluate how I was living and what was important.

 

Please come back and keep us posted!

 

You WILL be okay!

 

Kathy

Jamiek
Posts: 25
Joined: Aug 2018

Kathy,

Dr Google! I laughed for the first time today when I read that! I have made many trips to Dr Google today unfortunately. Not a very good idea. Coming here was the best thing I could have done and reading everyone‘s inspiring posts has saved me from the dark places my mind wanders to. 

This diagnosis already has me reevaluating everything about my life. I am a slave to a very high stress job where I’m miserable. All I do is work and sleep, but no more. And I know I need to start taking better care of myself. If I’m going to make it through this I need to eat better and exercise more. The change starts today!

 

MAbound
Posts: 796
Joined: Jun 2016

If you have robotic surgery for this, one thing that wasn't mentioned was having Gax-X on hand. The gas pains can be quite uncomfortable and this can help as well as not lying flat for a while. A wedge pillow or a comfy recliner can be your best friend when you want to sleep the first couple of days.

I second the advice for walking afterwards to help wake-up your intestines after surgery and to minimize the gas pain. I also agree that Miralax and drinking lots of water will both flush out the anesthesia and keep your stools soft. 

I'm so sorry about your diagnosis and current shock and fear. I hope you feel all of the concern and support surrounding you here and know that we'll be here for you as you progress through the process of getting rid of it. 

Jamiek
Posts: 25
Joined: Aug 2018

Gas X is now on my list! I also have a wedge pillow I’ll dig out of storage. 

I do feel all the wonderful concern and support and am beyond blessed to have found this forum and that I have the privilege of speaking and gaining knowledge from some truly remarkable, strong women. 

I know now that what I have is not uterine cancer, but I do hope I can stay. You have all made this so much more bearable. 

Armywife's picture
Armywife
Posts: 242
Joined: Feb 2018

Just want to encourage you.  This is DO-ABLE!  You will want to ask about the kind of surgery you're having.  For example, I had a DaVinci robot hysterectomy, and recovery was wonderful.  I learned here to ask for an elastic waistband to support my tummy while getting in and out of bed.  You will need to remember not to exceed your lifting restrictions - this was hard for me because I felt so good.  I literally never needed a pain pill.  Not one.  I pray you will have the same experience.  

Chemo is not fun but also do-able.  You will settle into a routine of feeling crummy for a few days and then better during each cycle.  You'll want to be vigilant about hand-washing and careful food prep, and exposure to germs.  Rest, rest, rest.  I found it very helpful to ice my hands and feet during chemo infusions to ward off neuropathy.

Don't be afraid to ask your care team lots of questions.  I kept a notebook with me all the time and just wrote stuff down - lots of stuff I learned right here and my doctor was impressed that I was taking an active interest in my treatment options.  

Best to you - I haven't been over to the cervical cancer board but they are hopefully just as wonderful as this group - and I hope you will keep us posted and stay here too!

Jamiek
Posts: 25
Joined: Aug 2018

Thank you for the encouragement and the wonderful tips. I’m glad to hear you did so well with your surgery! 

oldbeauty
Posts: 180
Joined: May 2012

So sorry the biopsy was positive.  Take your time to research both the gyn/onc your doctor selects and also others in the Dallas area.  Gyn onc's are mainly surgeons who also are knowledgeable about post-surgical treatments like radiation and chemotherapy.  This will be the doc who takes you all the way through treatment so be assertive and choose your doctor by your own criteria.  I look for top schools and research interest in my type of cancer, as well as a meaningful length of time in practice to develop expertise.  The great teaching hospitals and natioinal cancer institutes are useful resources to look for the right doctor for you.  MD Anderson in Houston would be great but I know you are in Dallas.  There should be many good choices for you.  I'd say concentrate on doctor choice and preparing for surgery and recovery.  The post-surgical pathological work up will be what tells you definitively what you are facing.  Take one step at a time and use this board every step.  There are some extremely knowledgeable women on this board who will be supportive with info, advice and offer long-distance emotional "safe place" outlet.  You say you are in a high stress job.  That should be an area you prepare for.  You don't want to be stressed at home while you are recovering.  Don't pretend that this is nothing and you'll be back in the office in no time.  Find out what your health insurance and other HR benefits are and use them to your best advantage.  Good luck to you.  Come back often to share your story.  Best wishes, Oldbeauty

Jamiek
Posts: 25
Joined: Aug 2018

Old Beauty,

My first thought was MD Anderson and I would be willing to drive. My dad went there for his cancer treatments and had wonderful care. I’ve been researching the gyn/onc I’ve been referred to in Dallas and am very impressed. I will be filling out my FMLA forms and my employer provides short-term and long-term disability so I am thankful for that. 

I find myself up and down...going from feeling positive to scared to death. Do you find that once you know what stage you are and get a treatment plan it becomes easier to deal with? Right now I’m plagued with so many “what if’s”. Every ache and pain I have makes me wonder if it has spread. Not knowing is terrible. 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Try not to get ahead of yourself. Try to take one day at a time. I found this situation gave me a new appreciation for life. Try to appreciate every day and not worry. Worry does not do any good and robs you of precious time. Your biggest battle will be in your head. Try to set the positive mindset right now and gather your friends and family and prayer warriors around you for support. If your faith has lapsed, revisit it. Don’t deal with what ifs. Try to stay in the moment. Hardest part of your battle because this is a marathon not a sprint. Good luck. We’re all here for you. 

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

I found it easier once I was staged and had a treatment plan. Oddly enough the next to hardest part was adjusting to life after treatment. I wish you the best. 

oldbeauty
Posts: 180
Joined: May 2012

+1 Cheese Queen is right on here.  It is a tall order but worth your attention.  I struggle with it myself bc I am a highly analytical person/personality.  Mindfulness instruction has been recommended to me.  I don't know that I can switch my brain off enough to do that.  I'm doing a renovation job on the house instead.   I look at that as an optimistic thing to do and one that will take me out of my comfort zone and even be fun.  I hope....  Choose the provider and place that suits your needs best.  It is highly likely that there are terrifically qualified and caring specialists in Dallas.  .Best wishes, Oldbeauty.

Jamiek
Posts: 25
Joined: Aug 2018

Old Beauty,

I have the same type of mind as you describe. It’s funny you mention the home renovation. I like wood working and am currently building a sofa table. I’m going to finish it this weekend. I find it very therapeutic and rewarding. It’s a great way of distracting yourself! 

Jamiek
Posts: 25
Joined: Aug 2018

Thank you Cheese Queen and Connie...wonderful advice. Got news that my appt isn’t until Aug 29th. I can’t spend the next 2 1/2 weeks worrying. I’m going to find something constructive to do with my time to preoccupy my mind. 

 

Armywife's picture
Armywife
Posts: 242
Joined: Feb 2018

I had my treatment here in San Antonio, but was able to get a referral to MD Anderson for a second opinion.  They did scans there and in fact will be doing my one-year scan next month.  It gave me great peace of mind to have MD Anderson's blessing on my treatment plan, and to have scans done there and read there.  It's an amazing place.  Perhaps you could find a local gyn-onc you love and then see if your insurance will cover the second opinion.  Blessings!

I agree with cheese and the others - one moment at a time!

Jamiek
Posts: 25
Joined: Aug 2018

Army wife, that’s a wonderful idea that I hadn’t thought of...thank you. I will look into that. Prayers for your scan next month!

Jamiek
Posts: 25
Joined: Aug 2018

I’ve been up since 2 am worried sick. I seem to go up and down. I’m having aching all throughout my abdomen. This has me scared that maybe the cancer is everywhere. I’ve found some cervical cancer forums, but no one has answered my posts. I’m feeling so alone right now. 

LisaPizza's picture
LisaPizza
Posts: 196
Joined: Feb 2018

This happened to me too when waiting for my pathology ... suddenly you notice every single ache and pain and worry that it means cancer is everywhere. I really needed some anxiety medicine and never asked for it, so I'm glad you did.

Jamiek
Posts: 25
Joined: Aug 2018

Thank you Lisa. I really needed to hear that. I really think deep down it’s just my anxiety that maybe has my stomach upset and probably all my muscles are tensed up. Right now, hearing from wonderful people like you and the things you went through is the best medicine for me right now....and my Lorazepam!!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2526
Joined: Mar 2013

Jamiek, all the wonderful ladies have given you wonderful suggestions.  We can all relate to your anxiety.  I remember my gyn's office scheduling my appt with the gyn onc and suggesting I call - since I am the patient - to see if they had anything earlier, so maybe you can call yourself.  As crazy as everything was, I did feel better after talking to my gyn onc because I knew he had a PLAN.  Maybe you can call your doctor to get a RX for something to calm you down.  Don't be afraid to ask for that - this is the toughest time right now.  

Jamiek
Posts: 25
Joined: Aug 2018

Thank you, I will call Monday morning and try that or maybe get on a waiting list if there‘s a cancelation. My doctor prescribed me something for the anxiety and it does work. I think the hardest time is right when I wake up and remember and then just get that sinking feeling in the pit of my stomach. I don’t know what I’d do without you wonderful ladies to talk to. 

Jamiek
Posts: 25
Joined: Aug 2018

MD Anderson called me this morning and they can see me Wednesday morning! I’ll be heading to Houston tomorrow!!

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

My experience there for a second opinion was very positive. Who are you seeing?

Jamiek
Posts: 25
Joined: Aug 2018

Dr Ramirez? I think 

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

how'd it go?

Jamiek
Posts: 25
Joined: Aug 2018

Just got back last night and I’m feeling a lot better. Oncologist feels like it was caught early and I might just need a radical hysterectomy with no treatment. Of course that depends on my pet scan results and whet he finds when he gets in there, but it’s got me feeling much more hopeful. My pet scan was yesterday so just waiting for results. I’m trying not to worry about the “what if’s” of the scan and just focus on what he said during our visit. My surgery is scheduled for the 30th. Now trying to figure how long to stay down there until I’m up for the four hour drive home post op!!

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