Suspected BOT waiting for pathology

Tumour size of soccer ball.  Complex tumour.  Capsule intact.  TAH, bilatelar oooOMGOD!  

Question:  Can I be having symptoms of recurrance already - or am I just really nervous?  Surgery was July 14.  Still waiting for pathology as they are getting second opinion from gyn oncologist.   My symptoms before the TAH BSOMG surgery were very text book (come to find out NOW...but at the time I just blew everything off.)  - lump in throat feeling, full feeling after eating only a little, ...those were my initial symptoms....later came constipation, bloating, and then WOW adominal (abdominal) girth got REALLY big despite running 30  mins. everyday.

Anyway, as I wait, and wait, and wait, for the pathology I am starting to feel a lump in my throat and very full feeling after eating only a little.  Nerves?  or something else.  I know that BOT couldn't return this fast.  It must be nerves.  I won't die, right?

I just joked and laughed my way through this whole tumour thing.  I didn't get that this is cancer until 3 days ago....after surgery, after discussions of sending slides to cancer specialist...  I think I get it, now.

[charlie12773]

Hi there Lyn

I'm so terribly sorry to hear about your diagnosis. I had a "cyst" removed in January 2010 and only found out 9 weeks later that it was a borderline mucinous tumour.

Nobody can tell you for sure that it is not a recurrence , but your doctor would have almost definitely had a very good look around your abdomen during the op and would have removed any suspect bits. The symptoms you describe are very common , particualry after major abdo surgery and the huge shock.Recurrence is extremely rare as you obviously know.

If it's any consolation, time really does heal alot. My surgery was in January and I rarely think now about a recurrence. I was however desperately upset at first , but it does get better honestly.

My consultant says that this mucinous BOT is not cancer , but many doctors disagree.

Please let us all know how you get on.

Charlie xx

[lyn42]

Thank you so much for your words of encouragement.  It is nice to know that a time will come where I don't think about this quite so much.  Right now it's ALL I do...research.  I think that the more I find out the more scared I get....but still I need to know.  

If you don't mind me asking, why was your recovery so painfully slow.  (I read your profile).  Did you have complications?

(P.S. love the King Charles Spaniels...sweeties.)

[Heffmeister]

I had a borderline mucinous tumor removed in April this year. Scary stuff and I must have spend weeks on the internet reading about it all. I had the classic signs like you but brushed them off and put them all down t the fact I was pregnant (I looked full term though at only 4 months gone). Sadly the cyst caused me to loss the baby at 23 weeks because it hadn't been picked up and I had emerency sugery 3 days later to remove the cyst- it  had ruptured by this point. After the lab work showed it was borderline I had a TAH.

I would think your symptoms are down to after affects of sugery. Have you had a 6 week check with surgeon? It time you will relax but it takes time.

Do you mind me asking you and Charlie if you take HRT and in what form?

[charlie12773]

Hi ladies

Lynn hope your day is going OK. Remember that it's perfectly normal to be anxious especially at the beginning. and you need to know these things.

My boring story is as follows ; the abdominal pain from my incision never really got fully better and when I went back to work after 9 weeks to my mainly desk job I was in agony after 3 to 4 hours. My employers were and continue to be wonderful, but during this period I was battling with the diagnosis and the excruciatingly slow process of my consultant getting any information about what further treatment if any I needed, what follow up and how often.

In June I had another op to investigate the causes of this pain and of course to check for any little nasties missed during the first op. They sewed up a part of my abdo muscle that was very weak....this has had no effect on the pain. The good thing is that, as expected, they found nothing suspect. I am finally getting somewhat better with accupuncture and am now on a phased return to work.

I really hope you get your results soon and do give yourself lots of time to get over this.Write down your questions and ask your surgeon at the beginning of the consultation how you can get hold of him or her if have any further questions.

Heffmeister ..hi there ... so very sorry about your terrible journey.You are obviously a very brave lady.

I am on Evorel 75 patches. It has been wonderful. I started on 50 and then asked to be increased as to 75 as I was still getting flushes. I strongly feel that it has helped a great deal.


Take care Ladies

Charlie xxx

[lyn42]

Heffmeister,

I am so sorry for your loss. I wish I could say something comforting....but I just don't know what to say.  Only to echo Charlie - you are obviously a very brave lady.

My doctor will be putting me on HRT, but right now we are waiting for the pathology report to come back before I start since there might be more tests needed....or something like that.  My prescription is for "Estrace" (???) 1mg PO daily x1yr (again, ????).  I opted for pill form.

I thought I had heard some bad things about HRT ..... but I haven't done any real research on the topic.  I guess there comes a point where I have to throw my hands up and trust the doctors.  (I think I have a really good gyn.)


Charlie, thanks for the info. on your recovery.  I'm pretty certain I have been pushing myself too hard....  4 weeks out of surgery and I have vacuumed (oops) moved furniture (oh no!) and some pretty heavy lifting.....(what's the matter with me!!!)  I guess it's no wonder my tummy doesn't feel so good.  

I will take it easier....

Thanks again for sharing your stories ladies....  It's nice to know that others understand how I feel.

[lyn42]

Still waiting for pathology...over 4 weeks since surgery.

July 14  I had surgery to remove tumour (and everything else...radical hystectomy)
July 23 saw my gyn. to remove staples.

Pathology was supposed to be in by then.  The pathologists, however, couldn't say definitivly that my tumour was borderline.  They sent my slides etc. to a gyn oncologist in a bigger centre.  

I'm still waiting.  It has been 2 weeks and 5 days (but who's counting?)since "preliminary pathology" sent everything to the oncologist and 4 weeks since my surgery.

WHAT IS TAKING SO LONG?

It has since been 2 weeks

[Heffmeister]

I think it's good that the pathologists are sending your slides to a specialist to make sure. I will don't have the results from my second opinion on my slides they had them for about 8 weeks! They are doing someting unusual to check my tumor wasn't related to precancerous cells in my cervix though so maybe takes longer?

The waiting is really hard but hang in there. Your nightmare will start to ease up sure I'm soon.

I'm 7 weeks post op and have been doing all sorts of house work and have picked up both my 5 year old and 3 year old (not together). It's so hard not to! I try not to do stuff but forget as I feel quite normal now.

[charlie12773]

Hi there Lyn42

Just a quick message to echo what Heffmeister said above , hang on in there , waiting is so terrible....but you are 4 weeks nearer getting an answer than you were when you had the op. Try and use the time to rest and to treat yourself to nice things.

Time is such a healer , I am now 7 weeks after my laparatomy and feeling so much better. In a few weeks so will you , believe me.

Do let us all know how you get on when the results arrive.

Good luck

Charlie xx

[lyn42]

Oops....
Almost 4 weeks of waiting for 2nd pathology report (not 2 weeks as I said before)  
5 weeks since my surgery...still with no answers.  
(I sound like such a whiner!!)

I have given up phoning my gynocologists receptionist/nurse(?)  She has no info for me.
Note: Transit time is negligible...maybe 1 day in transit

I wonder if I could ask my gynocogist for a copy of the "preliminary" report that nobody wanted to hang their hat on.

Thanks AGAIN for your reassuring words.   8 weeks of waiting.....????!!!  Oh, I hope I don't have to wait that long.  What I keep thinking is, they're not having trouble distinguishing my tumour from "benign".....they're stumped about whether to put me in "malignant" or "borderline".   But I guess that doesn't really matter much, as long as my grade is low (which it obviously must be) and also my stage....    

[charlie12773]

Hi Lyn

I so cannot imagine how terrible this delaymust be for you. I spent 4 weeks not knowing wthere or not I needed chemo or radiation or further surgery, so know how it is. Definitely ask for a copy of the preliminary report. Keep asking. I work in health in the British Isles and believe me when one of our doctors is sick they want everything now.

I am not a doctor but I would imagine that the reason for the delay is that there are lots of other slides or samples before yours to be looked at. I honestly don't think it would take 4 weeks for a decision to be made.

Try to take the time to look after yourself and to get over the surgery, alot easier said than done, I know.nIt's normal and natural to be scared...everybody is ... and believe me you will feel alot better when you get your results.

Charlie xx