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Newly Diagnosed and Looking for Support

Jojo001
Posts: 11
Joined: Sep 2013

Well, I guess I'll just jump right in.  I was diagnosed on September 24th with Stage 4 Endometrial Cancer.  It all started in late August - I think.  I'll try to explain here.  In August of 2011 I was diagnosed with multiple, bi-lateral PE's, which came from DVT's in my leg after an injury.  I was started on Coumadin and did it for a year and a half.  It did not change my period at all, but I noticed the fourth month that after my period ended, I had a very light, clear discharge for a couple of days and then it stopped.  I went to my gyn to ask about it . . . should I be concerned, is it a side effect of the coumadin, etc.?  It was not the coumadin, it could be nothing, but we'll test and monitor it.  Pap smear results showed the discharge had endometrial cells in it, which she said is not normal, but not an automatic issue for concern.  She didn't want to do anything invasive since I was on coumadin and decided to do regular tests and ultrasounds every 6 months.  The first U/S showed what appeared to be a single fibroid along the back wall.  She advised that we shouldn't mess with it unless it begins to cause excessive pain or bleeding.  We'll monitor it.  Each month, the discharge was still very light, but lasted more days.  I kept my gyn informed of the progress and we reviewed each ultrasound, but so far they didn't show anything that was a problem.  About a year ago, I went to her concerned about a tenderness I felt in my right groin.  I could also feel a little knot the size of a quarter that became very tender, even painful approaching my period.  She examined it and said it was probably just an inflamed lymph node and put me on antibiotics for about a week.

Well, as of the beginning of this year, the discharge has been daily, though still very light with no foul odor.  I'd been taken off of coumadin last November, but she didn't see the need to do a biopsy or anything like that.  The ultrasounds apparently didn't show anything of concern based on my understanding from my gyn.  My last regular one was on August 9th.  The following week, I had a sudden pain behind my right knee.  It wasn't my DVT leg, but knowing my history, I scheduled an ultrasound of the legs for August 19th.  That morning, my gyn called me at work to come in immediately to discuss the results of the 8/9 ultrasound.  I went and she read the report to me and said that it advised getting a tissue sample and that was good, she said, because I was no longer on the coumadin.  She informed me that she didn't feel comfortable to continue monitor this case and referred me to a gyn oncologist.  I had my hematologist give her a referral because, under the circumstances, I didn't feel comfortable going with whomever she might refer me to.  That afternoon, a blood clot was confirmed behind my right knee and I was placed back on Coumadin as well as arixtra shots.

On August 25th, I started bleeding very heavily that night, passing clots so big I had to use muscle strength to get them out.  I had to call an ambulance after midnight and was rushed to the hospital.  My INR was 4.7 and I was fading in and out.  The ER doctor advised that I had already lost 1/2 my volume of blood.  They gave me two units of FFP to stop the bleeding and it took a total of 6 units of blood to replace what I had lost.  I was hospitalized for a week and a filter was placed through my right carotid to protect my heart and lungs from the clot in my leg as they said I could not longer do anticoagulants until we figured out what was going on.  I was released, saw the gyn-onc I was referred to the next week.  He said my uterus, cervix, etc. looked perfectly normal for a health woman my age, but needed to do a DNC to see what was going on based on the ultrasound.  It was scheduled for the end of the month.  A few days later, I was rushed right back to the hospital with heavy bleeding and a CT scan showed a new, huge saddle embolus in my lungs.  Over the next month, I was hospitalized repeatedly, never lasting more than 24 hours after release before having to go back due to critical bleeding.  I was released on 9/15 and rush right back on the morning of 9/16.  They thankfully decided to go ahead and do the DNC and endometrial cancer was confirmed.  It took a week to get the full pathology report.  Stage 4 endometrial cancer and it had, in fact spread to that lymph node in the right groin.

[Let me pause here to say that I say "I think" it started 8/26, but gave the two year back story because I feel it must be related.  I felt, and still feel mostly, that my gyn let me down.  I feel as though she just watched this progress and then dropped me like a hot potato.  My current oncologist, assigned through the hospital, though, said he has studied my case from every angle and he strongly feels that it was a very rapid onset that started when the critical bleeding started in August - which means, there may not have been anything to see during the two years before.  AT any rate, I am where I am at the moment.]

I cannot have a hysterectomy because of the blood clots.  I had CT scans three weeks in a row that showed new clots in  my lungs and upper body each time.  The doctors told me even before the diagnosis that cancer was a concern because when the body detects a malignancy, the blood often becomes hypercoagulative in the body's attempt to fight it and that would account for the sudden unexplained clots.  So, surgery is out of the quesion until the clots are resolved.  Chemo was delayed a week because they had to do about 4 locally targeted radiation treatments over a couple of days to stop the bleeding (rushed back to hospital after release . . . again).  So, I started chemo on 10/7.  I'm doing the Taxol/Carboplatin combination.  I've not had major issues with it . . . it's the after effects of the Nuelasta shot that I could do without.  The plan is to do 6 chemo treatments then, if the surgeon clears me following a CT scan and progress on dissolving the clots, surgery.  My oncologist is encouraged by the fact that aside from the one lymph node, the cancer is contained to the uterus.  He feels I should be completely clear with this game plan, though they may do a couple of precautionary chemo rounds afterwards.

At this point, I've had up days and down, but overall feel blessed actually.  I believe that God has been preparing me over recent months for this diagnosis (it would take a much, much, MUCH longer post to explain that), so it didn't destroy me as I would have thought.  My overwhelming feeling upon diagnosis was relief that we at least knew what was going on and had an aggressive game plan in place to address it - I wasn't bleeding out with people just standing by and watching anymore - which is what it felt like for quite some time.  I've been able to return to work and the only major problem is cutting down to 1/2 days during treatment week.  I've begun singing again, though it's limited because the chemo strips my voice so I'm only good for singing right before treatment.  I have my fourth treatment on 12/16 and my mindset is still just determination to get through this journey, blessed to know God is walking it with me, thankful for friends and family supporting me and looking forward to coming out the other side.

I wanted to share my story by way of introduction and commiseration in case there's anyone going through similar occurrences.  Know that you are not alone.  I'm sure I will have questions and can hopefully contribute some support as well.

Double Whammy's picture
Double Whammy
Posts: 2291
Joined: Jun 2010

I don't think I've ever heard a history such as yours.  Your gyn symptoms, however, seem pretty classic yet I think I "get" the reluctance to doing a biopsy or D & C due to your clotting issues.  And I have heard of clotting being a potential issue in cases of cancer, particularly while on chemotherapy.  Sorry you have had so much going on and hope you're on the right track for recovery.  Do you know what type and grade of endometrial cancer you have?  I.e., endometroid adenocarcinoma (what we refer to as the "garden variety" type and the most common, UPSC, MMMT, etc.?) 

Adding my support to you on your journey.

Suzanne

ConnieSW's picture
ConnieSW
Posts: 581
Joined: Jun 2012

You are one hardy lady.  Although my discharge was smelly, the fact that it was clear, as was yours, makes me wonder if yours is UPSC too.  Whatever, glad you made it to this site and rest assured that we will all join your family and friends in supporting you.

Jojo001
Posts: 11
Joined: Sep 2013

Thanks so much for your support.  No, I don't know the full staging, etc..  I know he told me, but I think I went on auto-pilot at that point for a few hours.  I'm putting together a resource book, though, and will be getting that information at my next chemo session.  AS far into this journey as I am . . . it's all happened so fast that there are several things I don't have a grasp of yet.  For example, I've heard the "CA-#" mentioned by folks, but my doc has not mentioned it to me and I don't really know the significance of it.  I've got a lot to learn.

Kaleena's picture
Kaleena
Posts: 1108
Joined: Nov 2009

JoJo, Not to repeat what the other ladies said, but "Wow"!   So sorry you have been going thru all of this.   What a trooper!   Going  back to work, etc.  Keep up the great spirit.  Positive engery does wonders!  

Kathy

janh_in_ontario
Posts: 110
Joined: Sep 2010

So glad you are finally getting the treatment you obviously needed long ago! I think the worse is knowing something is wrong but getting nowhere with the doctors. The not knowing what you are dealing with is sometimes the biggest issue. Welcome aboard this rollercoaster ride - I hope your ride is not too rough.

Janh

Ro10's picture
Ro10
Posts: 1418
Joined: Jan 2009

Sorry you have had such a difficult journey.  My cancer was in 5 lymph nodes and I had cancer cells in my abdominal washing when I had my hysterectomy.  I was staged as 3-C UPSC.  I too have had multiple bilateral blood clots in my lungs.  I had no symptoms.  It was accidentally picked up on a CAT scan.  I have been on daily blood thinner shots for almost 2 years now.  It has to be quite scary for you to have such terrible bleeding episodes.

Good luck with your chemo sessions.  I read that if you take Claritin before your chemo and again after the chemo, it will lessen the pain from the Neulasta shots.

come back with any questions you may have.

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

I was advised about the claridin D and it worked.  Take the day before the day of and a couple of days after the shot.  You can also try advil or motrin.  My nurse oncologist was aware and had no issues with this

Jojo001
Posts: 11
Joined: Sep 2013

Well, I have more information.  I have the pathology report from my DNC in the hospital and it says "High Grade Adenocarcinoma with Papillary Serous Features"  whatever that means.  I just had round 4 of chemo on Monday and the "evil" shot on yesterday.  I was a bit disturbed by what my doctor shared with me on Monday, but am trying not to panic about it.

He said that the standard practice is not to do surgery in "stage 4" cases.  He explained that's because generally with stage 4 there has been much deterioration and damage and the risks of surgery outweigh any benefits.  However, in my case, the "stage 4" is more of a technicality because the one lymph node it has spread to is outside the uterine cavity - if it had been adjacent or inside, it wouldn't have been categorized as stage 4.  Also, oddly, there has been no damage from the cancer in the uterus, etc. (perhaps thanks to the severe bleeding?), so that doesn't apply.  He feels they can get it all cleanly, safely and completely . . . but the surgeon has to agree.  I told him I want it out . . . if it can be removed completely, cleanly and safely . . . I want it out.  I don't want to face a lifetime of having this inside of me when it's not necessary . . . all because of a technicality.  He agrees and is going to push for it, but wanted to advise me of the situation.

I'm praying the surgeon will look beyond the category and see my individual case and the merits of surgery.

Ro10's picture
Ro10
Posts: 1418
Joined: Jan 2009

Thanks for the update.  Are you seeing a gyn/onocologist?  I still do not understand why you are a stage 4 when you only had one lymph node showing the cancer cells.  I had 5 lymph nodes positive and was staged 3-C.  I know that final staging is not possible until you have surgery and you have not had surgery yet.

Others are always recommending a second opinion, so if your surgeon does not agree to the surgery than you may want another opinion.  I know you have the added risk due to you bleeding problems and clots.

you say you want it out and not face a lifetime of having it inside you.  Unfortunately when the cancer is in the lymph node it may always be there..  Like a chronic disease.  That is what I am treating.  But you can still live a full life in between chemo treatments.  That is what I have been doing for 5 years now.  

Did you try the Claritin before your chemo and after your "evil" shot.  I hope it helped you have less bone pain.

Good luck with your next appointment.  In peace and caring.

Jojo001
Posts: 11
Joined: Sep 2013

I thought that if the lymph node were removed, then that's that (along with the hysterectomy, of course . . . if it hasn't already spread anywhere else.

Ro10's picture
Ro10
Posts: 1418
Joined: Jan 2009

Even if they remove the lymph node there is a chance of a microscopic cell of the cancer being in another lymph node.  That is why they give you the chemo to get to any wandering cells.  But sometimes the cancer is still there.  I have had 2 recurrences in the lymph nodes and am working on a third recurrence.  Luckily I still respond to the taxol/cisplatin combo, so that will what I get again when I start chemo again.

hopefully your treatment will get you to NED ( no evidence of disease), but I have never reached NED.  But I am still enjoying life, and am thankful for every day I have.  In peace and caring.

northwestalaska
Posts: 8
Joined: Nov 2013

I really appreciate Jojo's questions and your answers, Ro. I've been following these discussions since I found them a month ago. I had free cells in my abdomen after surgery. Chemo and internal radiation-UPSC. I haven't had a pet scan and no cat scan for almost a year. After following some of the women here, I will ask about a pet scan at my 4 month check up. Thinking of you, Jojo, as you go down this path. Hang in there and one step at a time! Ro, you are an inspiration.

Goldheart
Posts: 36
Joined: Sep 2013

It's been long time I have been here. Reading your posts and happy you are still going well with chemo. I just want to know what is your pathology report about ER and PR? My mom's are ER+ and PR- and GATA 3, which means poor prognosis. She had very good respond to the first chemo (carbo + taxol). Have you used the same chemo for all your recurrances. I was told the body would get immune to the same chemo. Have you used different dosage or timing?

Happy 14

Goldheart

Ro10's picture
Ro10
Posts: 1418
Joined: Jan 2009

My pathology report did not address the ER or PR.  i don't know if 5 years ago that was not part of the pathology report.  I am responding to the Aromasin, so I don't know what that means for the ER.  I tried Arimidex after my first recurrence, but did not have any response to it.  The doctor said maybe the cancer was progressing too fast for the Arimidex to work.  But I started the Aromasin right after I stopped chemo This last time.

Yes I have had the same chemo each time, except when I had a severe reaction to the carboplatin, I was switched to cisplatin along with the taxol.  If you go 6 months without a recurrence,  they usually stay with the taxol/Carbo.  If you recurr within 6 months they say you are platinum resistant and try something else.  My dosages have been the same and the timing has been every 3 weeks.

However some are having tissue assays to see what their tumors are sensitive to.  Jan had one done and they switched her to Doxil.  Your cancer can change after getting chemo, so the chemo may not work the same after a while.  The plan is for me to go back on the taxol/cisplatin when I need to go back on chemo again.  I have been off chemo for 20 months now, so my body is recovering from the last chemo.  The other times it was 18 months and then only 7 months between chemo.

i hope you and your mother are doing well.  Come back with any questions you may  have.   In peace and caring.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Dear Jojo,

What a story. I had no symptoms,no bleeding ,nothing but two weeks of constipation. Then GI said run don't walk to get CT, then week later I had GynOnc surgery roto-router, all out, surgery.

Stage IV b grade III Adenocarcinoma clear and mixed cell, July 2010. three or four recurrences and another surgery to remove 8cm tumor they didn't catch earlier with CTs. Now I get PeT every three months, guess I not afraid of croaking from radiation, five of those Interventional Rad series too, thank Gd I'm still here .

Stopped chemo against docs wishes two years ago 'cause it was killing me and my immune system , had had Carbo/taxol/Doxil /Gemzar, made tumors during treatments,

tape meetings with docs on smart phone. Sure you can't remember everything!

We are all cases of one trying to make this monster a chronic disease not a fatal one!.

Keep fighting you are a real warriorette!

Also blood tests and Ca 125, He and the like (metabolic tests), are all dandy with me even as I have new tumors.

Keep learning and you will be your own specialist!

Sara 

Jojo001
Posts: 11
Joined: Sep 2013

I really appreciate all the feedback and encouragement.  There's so much to learn and so many different opinions, etc.  To make matters worse, the pastor at my church job called me yesterday to advise me that they are letting me go.   As of last week, the agreement was that I would be returning in January, but two days later they decide to let me go completely!  No other way to say it.  It hurts . . . it just hurts that after 13 years they are not even willing to let me try to come back.  I could see making this decision if I returned and then there were problems, but you won't even give me a chance to try?  So, I've gained an indefinite future of increasing medical expenses and lost a job . . . not a very merry christmas.  Can you tell I'm a little bitter at the moment?  I'm praying this will pass.  I know God will guide me and won't leave me hanging, but at the moment it just really hurts.

ConnieSW's picture
ConnieSW
Posts: 581
Joined: Jun 2012

I can't believe all these awful things keep happening to you.  Try as I might, I would feel incredibly hurt and let down at this latest unkind development.  You must feel like Job.  All I can say is, you have to be an amazingly strong woman to keep moving forward.  Wish I could do something to help but please know I am rooting for you.

Ann55
Posts: 43
Joined: Jun 2013

I'm so sorry to hear this is happening to you. It sure sounds like someone at church missed something in His teachings.Maybe God is leading you to a better place. 

Double Whammy's picture
Double Whammy
Posts: 2291
Joined: Jun 2010

You work for a church and they let you go?  Really?  Because you're going to have surgery?  In most states, you can't let someone go because of  health reasons, but maybe churches are exempt.  Get some legal advice.  It sounds like your pastor has shown you absolutely no compassion nor does he even know whether you'll be able to perform your duties or not.  Do you have health insurance?  You should be able to get some assistance as well as disability payments (eventually).   Please be sure you are seeing a gynecologic oncologist.  God may be leading you to a better place, but your church is putting up roadblocks.

I'm so sorry this has been added to your complicated health issues.  May you have a holiday surrounded by those who love you.

Suzanne

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