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Pre-diagnosis: uterine cancer concerns

Pre-diagnosis: uterine cancer concerns

Posted by TorUkie on Sep 23, 2019 11:36 pm

44F, just had 2 ultrasounds and am waiting for the MRI results (due next week).  

Key findings so far:
- a large subserosal myoma (10x8x8), which appears to be highly vascular this raised an alarm bell for the hysterosonography doctor who told me during the appointment that he is highly concerned and suspects it to be sarcoma and suggested I ‘start moving’ to investigate further).  
- thickened endometrial lining (13 mm right after the end of the period, 20 mm a day before period, 19 mm at ovulation)
- High Neutrophil-to-Lymphocyte (NLR) ratio of 3.2
- No irregular bleeding, just feeling  meaningful discomfort/sense of fullness 
- I think there has been recent growth (I have noticed this as ‘enlarged uterus’ only about 2 months ago and am pretty sure it is recent growth. 
- Low BMI (21), non-diabetic, active

Anyone here with similar findings/symptoms?  

I have read very conflicting evidence on usefulness of MRI for diagnosis, any thoughts in this group?

Thank you in advance. (And if I sound a little panicked, it’s because I am)

h. 

Re: Pre-diagnosis: uterine cancer concerns

Posted by ashcon on Sep 24, 2019 1:11 pm

Hi TorUkie‍ 
​​​​​​
I'm glad you found this community. I'm a breast cancer person myself, so am not in a position to answer your questions, but this is a great place to explore resources and find others who may share your story or experience. 

Tips:
Use the 'search function within the members tab to find women with uterine cancer. You can even fine-tune the search to find women in your age group, province, etc. 
If you want to tag a particular member, simply type the "@" symbol before the first 3 or 4 letters of their username, and select from the list that pops up. 

This link on Uterine Cancer is informative and may help you establish the questions you'll want to ask as you get test results and move through next steps. 

Feeling panicked is so normal  and I'm sure your head is buzzing with a million thoughts, fears, and questions.  

What support people do you have in your circle? 
---- "Nothing ever becomes real till it is experienced." ----

Re: Pre-diagnosis: uterine cancer concerns

Posted by tls38 on Sep 24, 2019 5:43 pm

Hi TorUkie‍  I hope everything goes well with your testing and you end up being completely free of cancer! Dr's can certainy be wrong.  I do have to say though, it's really great you have such a pro-active Dr...
I hope some more members write you back soon...
As for me, I am waiting on some diagnoses myself. I orginially went to the dr bc of really heavy periods and horrible cramping- the dr told me I had 2 submucousal fibroids and a thickened lining (17.4mm, i think this was before my cycle started). I had a hysterscopic myoectomy this past June and both fibroids were removed. None of my tissues/biopsies came back with Cancer. I thought I would be back to my normal cycles once the surgery was over- BUT no...instead i have been having weird periods- I will bleed for 8 or so days with cramps or pelvic pain the whole time, then it will stop and then bleeding/spotting and clotting will come back randomly for another 1-2 weeks, at times the blood has gushed out for a couple hours then just stops. I also have been having little flashes of pains and quick cramps on the sides of my pelvis and down the front of my legs to my knees. I feel like more often then not there is some kind of dull pain going on in my ovary or left side of uterus. 
I went back to the dr, and they did an ultrasound and found what they think is a polyp, then told me to come back when my lining would be thinner-so 3 weeks later i had a second ultrasound and the polyp grew. Now I have to go back for an additional SIS Ultrasound- which I wish they did last time. So, in October i go back and hopefully get some answers. I am a little worried about the pains and spotting/clots I've been having, worried how that polyp grew so quickly, worried why my lining is so thick, and curious as to why they did not see the polyp when they took out the fibroids in June. My polyp grew from 0.9 to 1.4, still so little, it's hard to believe such a little thing the size of a peice of rice could be bothering me so much. In addition, the Dr told me that polyps don't cause pain, which did not make me feel any less worried about my situation for sure!
So that is my story for my now. Hoping and praying for the best. 

Re: Pre-diagnosis: uterine cancer concerns

Posted by ashcon on Sep 25, 2019 8:37 am

Hi tls38
You've had quite the journey and series of events, haven't you? 
I sincerely hope they nail things down for you next month when you go for your next ultrasound. 
​​​​​Keep us posted! 
---- "Nothing ever becomes real till it is experienced." ----

Re: Pre-diagnosis: uterine cancer concerns

Posted by Cynthia Mac on Sep 25, 2019 11:19 am

Hi, tls38‍ And TorUkie‍ , I have not had uterine cancer, but I do have a history of issues in that region.  I don’t want to give you false hope, and TorUkie, I think your doctors have some conclusive information regarding your case, so my best advice to you is to be prepared. The first things I did when my father received his cancer diagnosis was set up a coil bound notebook and make myself available to be at his appointments as a “second pair of ears.” This has helped him tremendously, so if you have a loved one who can listen objectively, you may wish to bring him or her to your next couple of appointments.

Tls38, I had growths in my cervix 30-35 years ago now that turned out to be HPV related, and I had another growth about 15 years ago that the surgeon identified right away as benign. Today, I am living with several fibroids, which my doctor says will go away on their own. Like you, I think I feel them, and I’m not sure whether that’s my mind playing tricks on me or whether I’m really that good about listening to my body.

I know from experience that this waiting period can be an emotional roller coaster. I’ve had to learn how to focus only on the things I know for sure, right now, and not to let my thoughts hop on the runaway freight train of negative what-ifs. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Pre-diagnosis: uterine cancer concerns

Posted by TorUkie on Sep 25, 2019 12:15 pm

Thank you, Ladies. This support means a ton. 

It's been tough going - with waiting and no information. In the meantime, I am trying to read up on things and keep myself informed. That's my go-to 'coping mechanism' which makes me feel more focused, as - for now- I think that the odds are in my favor.  And I am learning - who knew that endometrial thinkening was a thing and that 20 mm is high? (My Family Doctor who is wonderful, is also a generalist so he completely didn't pay attention to it). 

I have an additional question: how do you advocate for yourselves without being seen as pushy? Example: I have a gynecologist appointment that's been set 3 months from now and when I asked the receptionist at the clinic about an opportunity to move it up (e.g. get on a cancellation list), I was given such an attitude, as if my request was completely unreasonable. My referral from the sonography doctor said "urgent" 3 times and "please/please/please see her as soon as possible".  So, no, this sense of urgency is not coming from me being a special snowflake.  

How do you ladies handle it? 

Also, tls38, hope everything goes well on your end.  

H. 

Re: Pre-diagnosis: uterine cancer concerns

Posted by Cynthia Mac on Sep 25, 2019 1:41 pm

TorUkie‍ , I’m not sure how assertive you are, but here are some things I’ve found useful:

- try to keep “you” out of the conversation. Instead of saying “You need to help me” or “I need your help,” people find less threatening if you say, “I really need help.”
- appeal to their sensibilities - say something like, “I know this may not sound important, but it is very important to me, and I appreciate any help you can offer.” (Yes, I know. I used “you.”) Sometimes, if we can show them that we understand that we may sound irrational to them, they will “play along” with our acknowledgement of that.
- appeal to their sense of family - I’ll warn you, this one can backfire. My sister once asked a doctor, “If this was your father, what would you do,” and his response was, “I don’t know. I haven’t talked to my father in 5 years.” Interestingly, Dad is still with this doctor, and he has been very supportive through Dad’s cancer journey.
- don’t be shy about bringing in the reinforcements. (I mentioned this one earlier, apparently in anther post this morning, so I’ll list it again here) Contact your sonography doctor and make him aware of the problem you’ve had with the staff at the clinic. If he wants your case handled as urgently as you report, he won’t be long getting in touch with the manager of the clinic. Similarly, some people have had success by getting their GP to push things along if need be.
- when things go smoothly, SHOW APPRECIATION. It will pay you dividends down the road. I have written letters of appreciation to the CAO of my local hospital more than once when things “went right.” Positive feedback can be a scarcity in the health care field, and when staff get kudos via the chief of the organization, that goes a long way. My Dad takes chocolates in to his doctor’s support staff every Christmas, and when Dad asks for something, those ladies will try to move mountains for him to have what he needs. They even called him when they got the report of his recurrence this summer to make sure he was coping alright! Little gestures of gratitude can help shape the world!

I hope these tips will help you if you ever run into a similar situation.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Pre-diagnosis: uterine cancer concerns

Posted by TorUkie on Sep 25, 2019 1:55 pm

Thank you. Hugely helpful.

As it happens, I just got back to my office after catching the Sonography Doctor (the one who raised the alarm flag) who apparently has just had a conversation an hour ago with the Dr. I got referred to. (I literally bumped into him in the waiting room, and he recognized me immediately). He told me that he hopes he is wrong, but he said: "I saw what I saw, I hope I am wrong, but it looked very serious".  Today he came to flag it to the other Dr. and apparently they discussed my case. She promised to expedite my MRI and look at it today or tomorrow and act accordingly. He said I should be waiting for a call from them over the coming days.

I am back to being completely shaken and it reinforced my sense of urgency. 

 

Re: Pre-diagnosis: uterine cancer concerns

Posted by Wendy Tea on Sep 25, 2019 6:08 pm

TorUkie‍  The great thing is you are now in the system and will receive the best care available. We will all be here with you on your journey and we understand all the emotions, the medical definitions, the level of support needed. We can help too. We have been there, done that, and we are still here.
Good luck
Wendy Tea
 
I am a survivor. Wendy Tea

Re: Pre-diagnosis: uterine cancer concerns

Posted by Lianne_adminCCS on Sep 25, 2019 6:08 pm

TorUkie‍ 
I am sorry that you heard the "I saw what I saw..." words but am happy to see that this referring doctor has been proactive in getting you to the referral Dr you need and will hopefully see it is in an expedited timeline.

Please keep us posted

take care
Lianne

Re: Pre-diagnosis: uterine cancer concerns

Posted by TorUkie on Sep 25, 2019 7:14 pm

Lianne_adminCCSCynthia Mac‍ 

Ok, here is an update, which is very good news, I think.  

Just got got my report (online) and it states that while it is a large fibroid and it is degenerating, they do not see signs of sarcoma.  

There are many other findings, including very thickened endometrium (21 mm), which may suggest uterine hyperplasia or carcinoma, but the other doctor was suspecting Leiomyosarcoma.  

I am exhaling, for now.  Now next step - have the Gynecologist actually see me. 

One step at a time. 

Re: Pre-diagnosis: uterine cancer concerns

Posted by Lianne_adminCCS on Sep 25, 2019 7:25 pm

TorUkie‍ 

Great news indeed. I would definitely take that as an excellent exhale opportunity.
We like to say around here "what do I know to be true right now" and what you know right now is much better than what you were thinking of before.

I hope you get into the Gyno soon and finish getting the answers you need.

Look forward to hearing from you again soon

Lianne

Re: Pre-diagnosis: uterine cancer concerns

Posted by TorUkie on Oct 11, 2019 5:06 pm

tls38:
Hi TorUkie‍  I hope everything goes well with your testing and you end up being completely free of cancer! Dr's can certainy be wrong.  I do have to say though, it's really great you have such a pro-active Dr...
I hope some more members write you back soon...
As for me, I am waiting on some diagnoses myself. I orginially went to the dr bc of really heavy periods and horrible cramping- the dr told me I had 2 submucousal fibroids and a thickened lining (17.4mm, i think this was before my cycle started). I had a hysterscopic myoectomy this past June and both fibroids were removed. None of my tissues/biopsies came back with Cancer. I thought I would be back to my normal cycles once the surgery was over- BUT no...instead i have been having weird periods- I will bleed for 8 or so days with cramps or pelvic pain the whole time, then it will stop and then bleeding/spotting and clotting will come back randomly for another 1-2 weeks, at times the blood has gushed out for a couple hours then just stops. I also have been having little flashes of pains and quick cramps on the sides of my pelvis and down the front of my legs to my knees. I feel like more often then not there is some kind of dull pain going on in my ovary or left side of uterus. 
I went back to the dr, and they did an ultrasound and found what they think is a polyp, then told me to come back when my lining would be thinner-so 3 weeks later i had a second ultrasound and the polyp grew. Now I have to go back for an additional SIS Ultrasound- which I wish they did last time. So, in October i go back and hopefully get some answers. I am a little worried about the pains and spotting/clots I've been having, worried how that polyp grew so quickly, worried why my lining is so thick, and curious as to why they did not see the polyp when they took out the fibroids in June. My polyp grew from 0.9 to 1.4, still so little, it's hard to believe such a little thing the size of a peice of rice could be bothering me so much. In addition, the Dr told me that polyps don't cause pain, which did not make me feel any less worried about my situation for sure!

So that is my story for my now. Hoping and praying for the best. 

tls38‍ 

Hi tls38‍, was thinking about you today - hope you are doing well and was wondering if you have any additional updates on your end.  Hope all is well and you have more clarity on what is going on.  I still haven't seen the specialist  on my end :(

Hala 

Re: Pre-diagnosis: uterine cancer concerns

Posted by SLM on Oct 12, 2019 8:55 am

Hello Everyone, 

I too have uterine cancer.  Had a radical hysterectomy after an atypical hyperplasia diagnosis.  I am in my mid 40s.  This is all a whirlwind of emotions and the waiting is agonizing.  But if you want to reach out, I am going through something similar.  It is nice to know you are not alone on this dark and scary path.

My cancer, my rule!
Be the Storm
SLM

Re: Pre-diagnosis: uterine cancer concerns

Posted by tls38 on Oct 12, 2019 12:29 pm

Hi @TorUkie Thank you so much for checking on me- it came at a good time, because I have been having a really bad week :(
You haven't seen a specialist yet? Is it because you are still waiting on your appointment or have not sheduled one yet? How have you been feeling?
The waiting and scheduling is the worst! I was supposed to get a saline ultrasound and biopsy next week- but my dr is going out of town- so I have to wait a whole nother month 😕.   My dr did call me though to tell me she did not see anything on my ovaries at my last ultrasound, but then eluded to not knowing for sure if  I have a polyp or something else growing inside me- since I just had surgery in June and they were certain they got everything out, she is not sure why I have a such  fast growing poplyp (or whatever it is) inside me. Meanwhile I continue to have little pains or twinges or feelings of uncomfortableness everyday.  Thie past week has been espeically bad with pains/cramps and major bloating and a heavy cycle- And on top of that I have been getting sick right before/or right as my period strats with horrible nausea/GI distress/vomiting/headache. I had this same scenario happen to me before where I would get sick the day before my period but it thankfully just lasted a few cycles.
I'm planning to make an appointment with a general Dr ASAP just to get a second opinion and maybe get checked out further- hopefully I can get some answers and relief before my next gyno appointment. I feel like my whole life has changed. I used to go to the gym 2-3 times week and now I go just 2-3 times/month. 
I hope you are doing okay and feeling well. Please keep us updated! 

Re: Pre-diagnosis: uterine cancer concerns

Posted by Elsie13 on Oct 12, 2019 10:16 pm

tls38‍ Sorry to hear about all these symptoms you're having. I hope you will be able to see your general practitioner soon!
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Pre-diagnosis: uterine cancer concerns

Posted by TorUkie on Oct 15, 2019 12:22 pm

HI tls38‍, I hope you are able to find an appointment sooner rather than later.  These wait times are challenging to handle, especially if the symptoms are escalating... I so very much hear you. Hang on there! 

On this end, looks like I was able to move up a specialist appointment to next week (from the one that was initially scheduled for December).  My trick was to show up in their office every Monday (or Tuesday) morning and gently inquire if they have any cancellations, which they just happened to have. So, next week I am finally seeing a specialist. My concern is that I 'feel' that the mass is growing, based on the finger measurements. It seems to have really increased since September, but it may be 'all in my head'. (I really hope so). 

Re: Pre-diagnosis: uterine cancer concerns

Posted by tls38 on Oct 15, 2019 3:40 pm

Hi ToUrkie, I am really proud of you for being "kindly persistent"! And am really happy you get to be seen so soon and can put your mind at ease when they are officially diagnosed- as hopefully just fibroids. Is the mass giving you any pains? I had 2 submucousal fibroids- they caused very bad cramps and heavy cycles. 

I emailed my Dr today. I recently got some lab work done for my job, while at the lab I asked them to check my Ca-125....the results came back elevated- a little over 100. I freaked out momentarily, but am OK now.  I never really thought through the process to think about what if the results came back abnormal. 
The CA 125 can be an indicator of some different cancers if elevated. I hope my dr gets back intouch with me soon so I can get a little more direction or possibly a referral to a specilaist.  I continue to have daily pains lately, it almost feels similar to when I had fibroids- kind of a persistent heavy feeling...

I'll be praying your Dr visit goes as well as it can, and that you can get some clear answers fast! Keep us updated! Hugs from across the pond! 

Re: Pre-diagnosis: uterine cancer concerns

Posted by TorUkie on Nov 3, 2019 2:32 pm

HI, a brief update - hysterectomy scheduled for two weeks from now. Seeing a gynecological oncologist at PMH tomorrow.  

Re: Pre-diagnosis: uterine cancer concerns

Posted by Wendy Tea on Nov 3, 2019 4:23 pm

Hi TorUkie‍ , I am pleased you have a surgery date. If you are able to, think about all the questions you want to ask tomorrow and write them down. Take a friend with you to help listen and make notes.  There are others here who might help with a list of questions.
Wishing you all the best
Wendy Tea 
I am a survivor. Wendy Tea

Re: Pre-diagnosis: uterine cancer concerns

Posted by Lianne_adminCCS on Nov 3, 2019 9:45 pm

Hello TorUkie‍ 
How are you feeling about the surgery?
Let us know how your appointment goes tomorrow

Lianne

Re: Pre-diagnosis: uterine cancer concerns

Posted by Cynthia Mac on Nov 3, 2019 11:24 pm

Best wishes, TorUkie‍ - I hope everything goes well for you tomorrow.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Pre-diagnosis: uterine cancer concerns

Posted by TorUkie on Nov 4, 2019 11:56 am

Thank you, Cynthia MacLianne_adminCCSWendy Tea‍ 

Just got back for the appointment at PMH. Overall, very encouraging, as the evidence skews towards the positive - especially that the cancer that was initially suspected (leiomyosarcoma) is very rare, At the same time, the answer will only be available post-surgery based on pathology results. More tests have been ordered (CT scan, bloodwork).  I feel good about the course of action, and the surgery is coming up soon (on the 19th).  The key is to take everything intact in one piece, in case there is a malignancy. It's very funny how in this context a hysterectomy doesn't seem like a big deal at all.  Also, the doctor was terrific - very thoughtful and kind. 

Thank you all for your kind words. I sort of feel like I am an impostor here, considering most people's situation is so much more serious than what I am going through, however your advice and perspectives have been hugely helpful as I am figuring out the situation. 

Re: Pre-diagnosis: uterine cancer concerns

Posted by Lianne_adminCCS on Nov 4, 2019 12:26 pm

TorUkie‍ 

I am happy to hear your appointment was encouraging. Wishing you well with your surgery and look forward to your update.
PS - you are not an imposter . We have a pre-diagnosis forum for a reason. We have all gone through this testing, wondering, waiting stage. While most of us did not hear the news we wanted, we all are happy to hear of those who get good news.
Whatever your results turn out to be, we have your back.

Lianne

Re: Pre-diagnosis: uterine cancer concerns

Posted by Wendy Tea on Nov 4, 2019 2:57 pm

TorUkie‍ , I am very pleased to hear your news although surgery is a big deal as is the reason. 

It is funny the you feel like an imposter as I do too. Even though I had a mastectomy because of a cancer diagnosis,  I feel far too healthy to be on this site. I am so lucky. 
I really feel attitude is a big part of healing and I am lucky my journey is just a bump in the road, not a road block.

I hope you continue to post and stay in touch. Hearing success stories really helps.

I see my oncologist on the 19th for new meds so you and that date will be in my mind, wishing you well.
Wendy Tea 
I am a survivor. Wendy Tea