Concerned..cancer?

Trice6256

Hello all, I want to thank you in advance for taking the time to read this. This is my first time posting in such a forum so please bare with me.

I am a 29 yo female with a history of severe endometriosis, adenomyosis, and ovarian cysts. I have had 2 laprascopic surgeries to remove endometriosis lesions (2011 and 2014.) After my first laparoscopy I completed 3 months of Depo Lupron injections and  became pregnant and delivered a healthy baby boy in 2012. Shortly thereafter I had the Mirena IUD inserted. Endometriosis symptoms returned and became serious enough requiring the second laparoscopy in 2014. I also had a small ovarian cyst (2cm) removed during surgery. GYN then placed me on an oral contraceptive to combat recurrent ovarian cysts.

 

Fast forward to May 2016. Pelvic pain has again reached a point where it is unbearable. I am certain I have an ovarian cyst and make an appointment. However this time, the symptoms were much different than I had ever experienced before. I was extremely bloated/distended and looked 6 months pregnant. No frequwncy in my urination, but when I had to go it was URGENT. I could hardly eat, but when I did I felt extremely full after just a few bites. The pain was predominantly on my left side around my ovary, but I was generally uncomfortable all over due to the bloating and gas. Transvag revealed an 8cm complex cyst with septations. I was sent for laparoscopy the same day to have the cyst removed. Dealt mainly with residents and was extremely frustrated with my care. Dr overseeing them had a lot of questions regarding family history with cancer. (Maternal aunt had early onset breast cancer, and several years later passed away from complications related to Acute Lymphoblastic Leukemia. My mother passed away from brain cancer in 2001.) I do not know any paternal family history. Anyways, the cyst was successfully removed and was benign. Aside from surgical complications leading to internal bleeding and an emergency lap the next day to remove blood that had pooled around my pancreas, the first lap was rather uneventful. 

Sincer about 3 months after the insertion of Mirena, my menses ceased to exist. Fast forward now to July (2months post the May lap's) and out of nowhere I have a "period." It only lasted about 3 days and was really just moderate spotting at most. Cramps and pain were unbearable. Repeat in August like clockwork, as if I was having a normal cycle. Same moderate spotting. September comes around and I can FEEL my messes coming at the time of month it did before, horrible cramping, pelvic pain, back pain, change in bowel movements...but menses never comes. Symptoms persist, and feel very similar to early pregnancy. Nauseous, cramps, little to no appetite, feel overfull after eating, etc.  Pain is relentless and becomes consistently worse. I make an appt with a GYN. He doesn't say much other than the strings to my IUD still cannot be found (they couldn't back in May either), but paired with my symptoms he is going straight to a laparoscopy to explore, and to remove the IUd surgically. This is the first time I have met his GYN and he was a man of VERY few words. Sent me home with pain medication and lap has been scheduled for Nov 10. He did make one comment during my visit that he reviewed notes from my May lap and that although they did remove the cyst, they "didn't really remove anything else." I have no idea what he meant by that .

Since that visit my pain is persistent and more often than not, much more severe. My ovaries literally feel like they are being squeezed and doused in acid. There's a general dull ache throughout my pelvis. The pain in my back is almost unbearable. A burning dull ache that feels as if it is radiating from somewhere deep within. Pain is worse when moving, or squatting/sitting with my legs up (my son is now 4...there's little time for rest.) A lot of times, for whatever reason, my ovaries hurt worse during urination. I am so miserable that when I do get a break I collapse on a heating pad on the couch and cry.

I just feel like something is being missed here, and my mind is a mess waiting for surgery and for answers. My appetite is hit or miss but I am never able to eat very much without feeling like I've eaten way too much. I do not have the bloating or distension that I had in May.

I just feel like I need to talk to real people who have lived/are living what has become a very big fear for me. What are your thoughts? I am so worried that something was missed during my May lap's.

 

 

NoTimeForCancer

Trice - my two cents is to

Trice - my two cents is to push for some answers.  Because you are so young sometimes doctors don't think women can 'have' any of these below the belt cancers.  There is no "age" when someone gets anything - it can happen at anytime.  

Go find out what is going on!

Tethys41

Lots of symptoms

Trice,

I am sorry you are sufferring so much.  There is a lot of helpful information in your post.  First, I would definitely want to rule out ovarian cancer.  And when a woman has ovarian cancer, it is essential that her surgery be performed by a gynecological oncologist.  These specialists have far more expertise with gynecological cancers than gynecologists and results are far superior when this type of doctor performs the procedure.  It is concerning that you are having a surgery at this point, before having a definitive diagnosis.  My doctor did not diagnose cancer for 4 months prior to my diagnosis of ovarian cancer.  In the meantime, I had a D&C, which definitely caused the cancer to take off.  If it was me, I would request a CT scan prior to your surgery to see if there is anything else lurking.

As far as your endometriosis and all of the treatments you have been receiving, I had a similar history prior to my diagnosis.  Unfortunately, conventional doctors don't have much in the way of answers when it comes to this condition.  As a result they throw hormones and drugs at you that really end up making things worse in the long run.  Endometriosis is an autoimmune condition, but your doctor won't tell you that, because he or she doesn't recognize it as such.  I have found that when it comes to autoimmune conditions, naturopaths and functional medicine doctors know how to manage them, while conventional doctors do not.  There are some surprisingly helpful pages on Facebook about conditions like this with very knowledgable moderators who can also give you some guidance.  You can also realize amazing results by adopting the Autoimmune Paleo diet.  Just Google AIP diet and you will come up with a lot of information.

I hope that your diagnosis is far less dire than cancer, and I hope you can find someone who can help you manage your other issues.  Feel better soon, and keep us posted.  Good luck. 

Trice6256

Obtained medical reports

Thank you ladies so much for the time you took to respond. I feel a bit guilty posting with concerns since I do not have a diagnosis. Reading through these threads has provided me with so much knowledge and confidence in advocating for myself. I DID NOT know until I found this thread that I could even obtain my medical/surgical/etc reports. As I'm sure you're all aware, the verbal reports that the surgeon gives to family/friends while you are in surgical recovery are very scant of information. So, I took the initiative and obtained my reports from my "episode" this past May. WOW!!!!! There were so many details in the reports that I was completely unaware of because it was never mentioned to me!

To start, it appears in my bloodwork results that my CA-125 level is NOT being measured. I spent a considerable amount of time breaking down my results and I do not believe CA-125 is even on there.

After reading through all of the reports, I have learned (because not one Dr ever TOLD me):

Initial ultrasound - "Large loculated and septated cyst measuring 8.1 x 7.6 x 4.9 cm. There is blood flow in a portion of the septations. Small amount of free fluid in LEFT adnexa. Intact color flow to each ovary. Free fluid identified within the cul-de-sac. Other, possibly follicular, cysts present."

1st laparoscopy report - (This is where I get even more nervous) "The left ovarian cyst was grasped and RUPTURED during manipulation. Fluid was aspirated and sent to pathology." In the same report, pathology indicates "no malignancy (in the samples that were sent) however follow-up is required due to possible inadequate and complete aspiration of cyst contents." The report does say that pelvic washings were obtained and sent to pathology. Blood tinged free fluid was present in posterior cul-de-sac. Smooth inner cyst wall, no excrescences.

 

They spilled the contents of my cyst into my abdomen?  This alone scares me. While I understand the samples that were adequately tested were negative for malignancy, there is the note that not ALL of the cyst contents were likely to be aspirated. If I am understanding what I have read here and researched, there is a chance that some sneaky, bad cells could have  been left behind to make home in my pelvis if they exist. Yes?

 

As I mentioned in my original post, I ended up in the ER the following day in severe post op pain. A CT scan WAS done, along with bloodwork. Leaving out minute details, CT scan was negative for all other organs/functions, but there was a substantial amount of free fluid and air in both abdomen and pelvis. My HGB had dropped from 14.2 preop to 8.7, and I was taken by ambulance to a larger hospital (where the first laparoscopy was done the day  prior. I then had a second laparoscopy where they removed 400 cc's of old blood in the pelvic and posterior cul-de-sac, HOWEVER, the report says the ovary from which the cyst had been removed was hemostatic and the blood found was not believed to be procedurally related to the first lap.

 

So, where did it come from?! I have no idea. I had no idea they had spilled the entire contents of my cyst into my abdomen/pelvis. Further leading to my concern is that BOTH laps were done by a resident, and that the attending physician was only present for  "key components of the service performed."  Seeing as this is stated the same way on both surgical reports, this seems to be a "copy and paste" statement included on all resident surgical reports, and I don't trust that there was a lot of "tried and true" expertise examining my "innards." No offense personally to the residents, but experience is KEY. 

All experiences so far have been with a general GYN. My upcoming laparoscopy Nov 10 is with a GYN. I don't even know where to begin in regards to a GYN Onc. And honestly I feel quite silly expressing concerns for cancer, or demanding a GYN Onc, when I have no "solid evidence" to back my concerns other than the traits of the last cyst removed that ARE characteristic of malignancy, and the fact that the contents of said cyst were subsequently dumped  into my abdomen. There's just this inexplicable nagging feeling that something is being missed, or that pieces are not being put together, and nobody seems to be concerned about being proactive given the cancer history in the women in my family. I am so lost in how to advocate for all of this without being brushed off as "crazy." I DO know that my current quality of life is very poor. (Insert guilt here, I know there are many who have it much worse.) I am miserable, I have been miserable for sometime, and I feel unheard. There is just something that screams "ABNORMAL" considering I am going on my 3rd operative lap in a 5 month span. Reading and research indicates, to me, that this many problems, in this amount of time, is NOT NORMAL. But I seem to be the only one concerned.  Admittedly,  prior to May, I was all over the place with different GYN's, so the only "trail of evidence" accesible to any current GYN is from May to now. 

I have no idea how to proceed now other than to wait for my lap on Nov 10. I have made a list of questions and concerns to discuss prior to surgery on the 10th, but I have severe anxiety that I am not going to get the chance to discuss them. Or, that I am just going to be brushed off. 

The only thing I have really advocated for thus far has been my fertility. Complete hysterectomy has been the recommendation since my problems began. I was insistent in having children. With the assistance of fertility medication, I had my son in 2012. We are ready to begin trying for another but must get a handle on my health first. 

 

Again, I can't thank all of you enough for taking the time to answer and respond. I wish nothing but health and happiness for all of you.

Tethys41

Stressful

Trice,

You have been through a lot.  Sorry this is so hard.  Doctor's don't make it a general practice to run a CA-125 in a patient who has not been diagnosed with cancer.  You can insist on it.  I did for a number of years before being diagnosed with cancer.  Unfortunately, the timing didn't work out well for me because it was normal the year before my diagnosis and then very high when I was diagnosed.  You should be aware that the CA-125 is not an accurate test and it is not unusual to have a false positive, especially if you have inflammation in your pelvis.  Since you have a lot of issues going on there, it is likely this test would be positive for you, even if you don't have cancer. 

Yes, it is concerning that the contents of the cyst spilled during your surgery.  But I wouldn't panic about it right now.  You don't have a cancer diagnosis, so the fluid should have been harmless.  I agree, I can't imagine where the blood came from if not from a botched first surgery.  I know you have hopped around a bit with doctors.  It is possible, although I'm not saying this for sure, that one doctor is protecting the other.  I guess that would be a question to ask your next doctor, where this fluid might have come from.

It is not easy to get in to see a gynecological oncologist.  Generally speaking, you have to have a fairly certain cancer diagnosis before one will see you.  And typically the doctor who discovers the cancer will refer you to the gyn/onc.  

I know you feel as bad as you say.  I definitely think you need to find out what is happening in your pelvis.  There are certainly issues.  Please do not ignore the piece about autoimmunity.  This condition will make you feel horrible and a conventional doctor will not have any advice for you. It is possible that many of your symptoms are related to autoimmunity.  If you have one autoimmune condition, you likely have more than one.  And in the integrative world of cancer research it is becoming more and more evident that there is a link between autoimmunity and cancer.  

I hope things work out for you.  Let us know.

Trice6256

Tethys41 said:

Stressful

Trice,

You have been through a lot.  Sorry this is so hard.  Doctor's don't make it a general practice to run a CA-125 in a patient who has not been diagnosed with cancer.  You can insist on it.  I did for a number of years before being diagnosed with cancer.  Unfortunately, the timing didn't work out well for me because it was normal the year before my diagnosis and then very high when I was diagnosed.  You should be aware that the CA-125 is not an accurate test and it is not unusual to have a false positive, especially if you have inflammation in your pelvis.  Since you have a lot of issues going on there, it is likely this test would be positive for you, even if you don't have cancer. 

Yes, it is concerning that the contents of the cyst spilled during your surgery.  But I wouldn't panic about it right now.  You don't have a cancer diagnosis, so the fluid should have been harmless.  I agree, I can't imagine where the blood came from if not from a botched first surgery.  I know you have hopped around a bit with doctors.  It is possible, although I'm not saying this for sure, that one doctor is protecting the other.  I guess that would be a question to ask your next doctor, where this fluid might have come from.

It is not easy to get in to see a gynecological oncologist.  Generally speaking, you have to have a fairly certain cancer diagnosis before one will see you.  And typically the doctor who discovers the cancer will refer you to the gyn/onc.  

I know you feel as bad as you say.  I definitely think you need to find out what is happening in your pelvis.  There are certainly issues.  Please do not ignore the piece about autoimmunity.  This condition will make you feel horrible and a conventional doctor will not have any advice for you. It is possible that many of your symptoms are related to autoimmunity.  If you have one autoimmune condition, you likely have more than one.  And in the integrative world of cancer research it is becoming more and more evident that there is a link between autoimmunity and cancer.  

I hope things work out for you.  Let us know.

Thank you so much for your

Thank you so much for your time. I will absolutely look into the AIP diet as you suggested. Your suggestion is extremely helpful and appreciated!!

LorettaMarshall

Trice6256 said:

Thank you so much for your

Thank you so much for your time. I will absolutely look into the AIP diet as you suggested. Your suggestion is extremely helpful and appreciated!!

Trice~Info that may Help U 2 understand more re Cysts & cancer

 Dear Trice:

 Since I began my first of 6 chemo treatments for the 3^rd time around, (Oct. 20, 2016) I read your original entry, but did not answer because I might not be able to closely monitor your postings.  I see that others have stepped in to help, and that is good.  But with your second posting, some thoughts came to my mind.  First I always go to a conversion chart and convert centimeters to inches, so that it gives me a better idea of the actual size of the cysts.  The measurements came out as follows:

•  8.1 cm = 3.188976 inches

• 7.6 cm = 2.992126 inches

• 4.9 cm = 1.929134 inches

 Furthermore, I am concerned about the cysts that ruptured.  Now you certainly need to follow Tethys’ advice and find a gynecologic oncologist.   They specialize in gynecological cancers in particular and requires more intense training.  The links that I provide below will not do anything to assuage your anxiety, rather may add to it.  But since you mentioned you fertility medication in order to have your son in 2012, it naturally brought to mind some articles that I had read relative to fertility drugs.  You state that you are not going to try to have another child until your condition is absolutely diagnosed correctly.  That’s a very wise choice although I know how difficult it is to not be able to carry a child to term.  I have a close cousin who tried for years to have a child.  She was well within the child-bearing years but never had regular monthly periods but finally a miracle, and now she was finally able to have a daughter, and now is a proud and doting grandmother to two grandchildren. 

 As far as the CA-125 test is concerned, frankly I wonder, “what’s the big deal?”  I am constantly having a CBC and the techs just take one more small needle and draw blood into a separate tiny vile.  The complete blood check results are computed immediately, but it takes about 3 days for the CA125 number to show up on my medical record.

Here in the Tidewater area, as I suspect is the case with so many now, we have “electronic medical accounts that we can set up with our individual doctors.  Now they’re not all sophisticated enough to see all my info from one account.  Depending on the medical facility that I attend, they each will have a different name for their patient/doctor medical records charts.  I have one for my eye doctor, one for my regular GP, and one for my oncologist.  I’m glad you got copies of your medical records.  They are vital for your continued treatment and will serve as your own personal diary.  It’s also a check on medical bills that arrive in the mail.  All the bills do not have the “date of treatment”, and I have to check my calendar, or glance at the medical record to see if I am being properly billed. 

 Now just thought that I would send along some additional reputable medical articles relative to Ovarian Cysts.  Since you mention that you have taken fertility drugs, I think you will be interested to know something about different types of cysts.   I notice that some of them do have “blood” in them.  Understand that I am not trained in any kind of medical field, but I’ve always been able to find helpful answers on the web at reputable sites that help me to understand more about my own Peritoneal Carcinomatosis/Ovarian Cancer Stage IV diagnosis.  And I always have questions that I ask my oncologist each time we visit.  Make your list of questions, and expect the doctor to take time to explain them to you, or at least give you some words that will help you do more research when you get home.

 Now, if you’re like many women I know, our mind automatically runs to cancer, and it may not be that.  But you can’t ignore any symptoms that are not a part of your normal day-to-day feelings.  I, too, hope you find some answers.  The links I put below, are just for your information so you will be well versed when you go for a SECOND opinion.  Hopefully, you’re not in a country where socialized medicine is practiced, and your choices are more limited than here in the states. 

 Wishing you complete success in detecting the problem November 10^th.

 Loretta

_____________________________________________________

1. http://health.usnews.com/doctors/location-index/gynecologic-oncologists

 “Find Gynecologic Oncologists”

  _________________________________________________________ 

 2.  https://medlineplus.gov/ency/article/001504.htm

 “Ovarian cysts

   An ovarian cyst is a sac filled with fluid that forms on or inside an ovary.

 This article is about cysts that form during your monthly menstrual cycle, called functional cysts. Functional cysts are not the same as cysts caused by cancer or other diseases.

 Causes

 Each month during your menstrual cycle, a follicle grows on your ovary. The follicle is where an egg is developing. Most months, an egg is released from this follicle, called ovulation. If the follicle fails to break open and release an egg, the fluid stays in the follicle and forms a cyst. This is called a follicular cyst.

 Another type of cyst occurs after an egg has been released from a follicle. This is called a corpus luteum cyst. This type of cyst often contains a small amount of blood.

 Ovarian cysts are more common in the childbearing years between puberty and menopause. The condition is less common after menopause.

  Taking fertility drugs can cause a condition in which multiple large cysts are formed on the ovaries. This is called ovarian hyperstimulation syndrome. The cysts most often go away after a woman's period, or after a pregnancy.

 Functional ovarian cysts are not the same as ovarian tumors, or cysts due to hormone-related conditions such as polycystic ovary syndrome.

 Symptoms

 Ovarian cysts often cause no symptoms.

 An ovarian cyst is more likely to cause pain if it:

•  Becomes large

• Bleeds

• Breaks open

• Interferes with the blood supply to the ovary

• Is bumped during sexual intercourse

• Is twisted or causes twisting (torsion) of the fallopian tube

  Symptoms of ovarian cysts can also include:

• Bloating or swelling in the abdomen

• Pain during bowel movements

• Pain in the pelvis shortly before or after beginning a menstrual period

• Pain with intercourse or pelvic pain during movement

• Pelvic pain -- constant, dull aching

• Sudden and severe pelvic pain, often with nausea and vomiting, may be a sign of torsion or twisting of the ovary on its blood supply, or rupture of a cyst with internal bleeding

  Changes in menstrual periods are not common with follicular cysts, and are more common with corpus luteum cysts. Spotting or bleeding may occur with some cysts.

  Exams and Tests

  Your health care provider may discover a cyst during a pelvic exam, or when you have an ultrasound test for another reason.

  Ultrasound may be done to diagnose a cyst. Your provider may want to check you again in 6 to 8 weeks to make sure it is gone.

  Other imaging tests that may be done when needed include:

•  CT scan
• 
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Trice6256

Grateful

Thank you, Loretta, for taking the time to respond and provide me resources and information. Another thank you to Tethys. There are many signs within my problem history that indicate that my myriad of symptoms and problems are NOT cancer, even though there have been quite a few qualities of the cysts that indicate cancer is possible. I appreciate that you ladies have not chastised me for making much ado about what is likely nothing as dire as cancer. The piece of information from Tethys regarding autoimmunity and diet raised attention to me that although I generally eat fresh and healthy, I may not be eating appropriately for my body. Additionally, although different GYN's have given me varying opinions on this, my research indicates that the Mirena IUD can very well cause recurrent cysts. It appears to be less common for IUD induced cysts to be "complex", as mine have been,  but I cannot rule out the IUD as a cause for my continued problems at this point. The IUD <b>will<b> be removed during my lap on Nov 10. While it has certainly been effective at keeping the endometriosis at bay (there were very few implants found during May's lap's), there is potential that it is responsible for my current situation. I will of course need to go on a continuous oral contraceptive to prevent menses and in turn lower my chances of the endometriosis returning full force. I am hoping, with the adjustment of my diet as Tethys suggested, and the removal of the IUD, my symptoms improve. It is also my understanding that the GYN himself will be executing my upcoming lap, and not a resident. Perhaps this will quiet my anxiety that a lack of experience is allowing something to be missed. And now that I know how to obtain the reports, I can inform myself of the details instead of just wondering what happened when they were in there. I fully support providing residents with experience, but at this point I have had enough complications since May that I prefer skilled hands at work.

Thank you again for being kind and respectful. My problems really are so trivial in the grand scheme of things.

Tethys41

Good Luck

Trice, it's very disconcerting when you don't feel well and no one can figure out what's going on.  Although we have been a little farther around the block than you, your health is still important and nothing is more important than feeling healthy.  I hope things work our well for you.  If you choose to do the AIP diet, I really like the Autoimmune Paleo Cookbook.  You will be amazed at how well you can feel.  It wasn't really until after I addressed my autoimmune issues that I started to feel better after completing chemo and over time, I started to feel better than I had for years.  The diet is challenging and restrictive, but the recipes in that book I mention are delicious.  Good luck.  I hope you feel better.