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Finally successful in getting a gyne/onc and now TOTALLY CONFUSED HELPPPPPPPPPPPP !!!!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

What a mess I am. Help anyone, please.

I have been battling to have a gyne/onc handle my biopsy of a node and cyst on my right ovary since June and finally have been successful in meeting with this kind of specialist rather than a reg. gyne - I have a very complicated history of non hodgkins lymphoma and many side effects including heart issues now, most of the health problems due to the bone marrow transplant I had to have for the cancer 18 years ago. NED til this cyst and node showed up in Nov of last year but weren't seen til June of this year. So not being able to get this biopsied for so long, knowing they have been in there for almost a year now has been scarey.

I finally saw the gyne/onc yesterday and to my total surprise, instead of just doing an operation proposed by another reg gyne I talked with which was taking the ovary alone and doing a D and C for some weird tissue in my uterus, said he would do a total hysterectomy taking the ovaries and tubes too. He said it would be 'the cut' rather than laparoscopy as I had thought I would be looking at if it were just the ovary removal and I think I went into some kind of shock cause I left there not sure I was doing the right thing in going ahead with the surgery for a few reasons.

This gyne/onc first off told me that a cyst and node of this kind they really are not that worried about and said that it in all likelyhood is probably not cancer. However, to me, with my history of NHL, which I have heard puts you at greater risk for a second cancer and all the treatments I have had in the past 20 years from diagnosis (including a bone marrow transplant) plus all the after effects I have (including a damaged heart from chemo drugs), I wonder if I am doing the right thing by going ahead with this immense surgery especially because I am at greater risk of complications from just anaesthetic alone and heart issues. I am soooooooooooooooo confused.

Of course they are doing Pre Op assessments and I will meet with the cardiologists there (who will no doubt confer with mine) and tons of other specialists before the total green light is given but still if the onc feels this shows no real indications of cancer from what they see of the size and the type of cyst and node then am I right in pushing ahead with this surgery?
It's, to me, almost an impossible question to answer for me? Is the BUT what if it is cancer more important for me - especially given my past history?

The doc said that if they find any signs of cancer of course they will take further samples and the biopsy is done with me on the table while they wait for results before finishing surgery so they will do it all right there - which is why I wanted the gyne/onc so that I am not having to go through 2 surgeries instead by a reg gyne. I feel proud of myself that I hung in there and got the specialist I wanted though - that wasnt easy.

Then on top of this decision of course it's flu season and I will be in a hospital in major surgery with this and usually catch everything out there so that's another factor. My GP wants me to get the pneumonia shot and the flu shot and the H1N1 as well when they come out so that is another issue with this surgery looming and close. The gyne/onc said it will happen in 4 to 6 weeks or so, barring any red flags going up.

I am so confused. I know there is alot of detail in what I have just told you but I'm a complicated health case, as many of us are. My question to you is basically - if a gyne/onc told you that in all likelihood a cyst and node of this kind is most likely not cancer what would you do? Would it be smarter to take the wait and see approach (knowing that these tissues have been there for almost a year already but small and growing very minutely) since the surgery is extensive and the risks greater for you or would you not take a chance that it could be ovarian and catch it early????????

I would go to my GP of 25 years and discuss this with her but she has become so hard to get in to see as her practice is just so busy I won't be seeing her til the end of October and by then I might be on the surgery table. Sigh.

Since I have had such extensive chemo and total body radiation if I wait and it does turn out to be ovarian and I have left it to stage 3 or past then would my already weakened body be able to take more aggressive treatments?

HELPPPPPPPPPPPPPPPPPPP !!!!!!!!!!!

Thanks for your time. By the way I am in Canada in case any suggestions are applicable only in the states. Blessings, Bluerose

jane65
Posts: 279
Joined: May 2009

Hi Bluerose,
I've read your posts, as you know and my advice is:

Get the flu shot, get the pneumonia shot, and if you can, get the H1N1 shot.

You're finally seeing the specialist you've fought so hard to get an appointment with. Take his recommendation and get the hysterectomy. He'll check all your organs while you're on the table, and determine if there's anything to be concerned about and send samples to the path lab.

Unless you're planning to have children, you don't need the female reproductive organs, and once they're out you won't have to be concerned about cancer in those organs now, or in the future.

The surgery is of course not pleasant, the recovery is several weeks, but as you know, cancer is much, much more of a horror.

You'll get through it, and when you're feeling better, you'll be so thankful.

Good luck, I know you're confused and frightened, but this is what I'd advise.

Jane

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for your input Jane, yes that is the way I am leaning for sure. To make me more nervous the doc's office just called and the surgery has already been booked for 3 weeks from today. What? Where were these doctors before, sheeeesh. Anywho that's good news as yes I have fought for this for sure.

One worry for me here is that the doctor really seemed to think that this kind of cyst and node were something that he didn't feel were worrisome but I got the feeling that he was going ahead with this surgery as he figured I was requesting it. I told him that that wasn't it, I wanted information and I know I have valid reasons for having this surgery given my history etc. but that left me unsure of whether this was the right way to go or not? Understand what I mean?

My biggest worry is that I have to go under anaesthesia and I have complicated health situations that make it risky (heart and respiratory ones) and also I still have something that is giving me major sweats and I thought that was only going to last awhile. So this also makes me wonder if I am going to do this prematurely given what he said yesterday. I had expected the ovary biopsy only and laparoscopy not a full hyst with ovarries and tubes. His nurse told me later that when you do that that doesn't mean that down the road you still might get ovarian cancer. That was a surprise. I guess with the omentum and nodes around there anything is possible, why not. Sigh.

I talked to the nurse in the surgeons office who booked the surgery and told her of my fears and concerns and she understood and is going to get the nurse who was in the room yesterday to call me to clear some things up, wish I had someone to go with me to catch things I miss when in shock but I really didn't expect what I heard. Do we ever? I wrote down my questions and will have them for her when she calls. They want me to see an Internal specialist who I will also advise of all of this and also of course an anaesthesiologist to go over all the heart and other hastles I have. They might throw up a red flag with some of it I guess.

Just my luck, now I have acheived fighting for what I needed and now a big curve ball and all of this. The fun never ends. Sheeesh.

Anywho thanks for your input Jane. I appreciate it. Blessings, Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

With the surgery being so close I need to check as to whether I should get the pneumonia shot so close to surgery as it might screw up something and I don't even know if it would kick in by Oct 23rd. The flu shots arent here yet in Canada and the H1N1 are a month away - so far.
Oh brother - so complicated.

jane65
Posts: 279
Joined: May 2009

I know you're frightened, but you seem to be setting up roadblocks for surgery.

Your doctor is being very thorough, he's the one with all the training and you're dealing with your "what if" emotions.

I just had my flu shot, and I'm having my surgery Oct. 20th.

I, like Saundra wish I had a complete hysterectomy long ago, then I would not be dealing with this cancer.

If you cancel, you know what you will have to go through again, if there's a need for rescheduling in the near future.

When my CA125, and ultrasound pointed to OVCA, I was in surgery a week later.

The decision is yours, good luck.
Jane

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I know that's how it might appear, that I am setting up roadblocks, but that's not it at all. I have a very complicated medical history and alot of bases have to be covered or a general anaesthetic could be fatal for me, I am high risk. I have been sick for over a month with severe sweating and no fever and it's coming on again so I am concerned about that as well plus all the other things plus I live alone and have no support so all of this is something to look at for me. I am under no illusions at all but it was a huge shock when the gyne/onc said complete hysterectomy as I was not expecting that at all so I wrote my entries right after I found out so obviously I was in shock.

I agree its a surgery I have to have and fought for and need and I will have, I was just venting my feelings and fears and the oncologist did preface the first meeting with the idea that he didn't feel the cyst and node would be cancer and set me up to feel that maybe the surgery was too great a leap, for my complex situation.

I am going to go with the Pre Op though which is set for Oct 13th because that is when I see an Internal Specialist and even if my sweats and illness comes back that I have had for awhile he is the very best one to figure it out. If he puts up a red flag to surgery now then so be it til whatever this is I have is remedied. I saw my cardiologist 2 days ago and he doubled my blood pressure meds as the 'at rest' number was way too high so something is going on with me for sure. I am sweating buckets for nothing - on exertion which means just waking you.

I am not setting up roadblocks at all, just trying to make it through surgery breathing. It's complicated is all. Thanks for your post. Blessings, Bluerose

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

You got the consultation that your struggled with for so long. I has to be your decision as to following his opinions or not. We can not make that for you. You have worked to obtain all of the information that you have to this date. You might discuss with the future pre surgery checks as to their opinion. Personally, if there was any go back in time for me, I would have had a hysterectomy years ago had there been any reason for it to happen. Saundra

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for the input Saundra and I agree with you and the others about getting the hysterectomy and the other surgery to remove the ovaries and tubes too. I am getting sick with this fluey thing again though but today I found out my Pre Op is Oct 13th so I will plow ahead with that as I will be seeing an Internist to check me out and I think it could be that the oncologist wants to check on this severe sweating on exertion thingy I have been going through for over a month.

I have an exremely complex history so they have to be careful with anaesthetic with me, I have never had general anaesthetic since the transplant 18 years ago and that was before my congestive heart failure. I am just being cautious and making sure all the i's are dotted and t's crossed before I go under the knife is all. I will do the surgery but see what the Internal specialist says, he knows when to proceed.

Thanks for your input Saundra. Don't worry I will have the surgery I have decided. Blessings, Bluerose

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

Here are my thoughts as I struggle with the same issue with no history of cancer myself, but with a mother who is seriously ill with it. My CA-125 is elevated. Every woman on my mother's side has died of an ascites related cancer. If I leave my ovaries in, and I develop cancer I will be totally upset and very ill. I will also be apprehensive forever. My surgery is Monday. Is it overkill to be doing this? If I were genetically destined for OVCA, then no this is the smartest thing I have ever done. If I wasn't genetically determined, than yes it is overkill. Who cares, I will be alive.

Fact: You have had cancer.
Fact: There is no need to keep ovaries.

Is there really any question about this. If they are not there, this is one less thing you have to worry about about and all the other cancers are easier to screen for. You just can't find this one. Sooo, you waited a long time for to see this person, take advantage.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I agree and good points Lisa. Have a read of my posts to Jane and Saundra for more explanations of my concerns but you are all right, I have to proceed there is really no choice when it comes down to it, safer than sorry for sure.

It's always like this with me though with complications to everything medical, just get where I need to go with this specialist I fought so hard for now they are moving fast and I have a flu or whatever this is I have had for over a month BUT the good news is that this path to surgery has landed me with an Internal specialist and bingo I bet he will figure this profuse sweating and get on with things with the surgery. I don't think this is contagious I think it's an imbalance somehow. Could be the blood pressure issue I have now after seeing my cardiologist the other day or could be something else. I told the oncologist yesterday about the sweating and asked if it could be from cancer and he said not usually with ovarian but who says its not some other one, like a return of NHL as he told me lymph nodes were around the omentum - of great. I'm not jumping to any conclusions, just interesting he brought that up.

Wiping away sweat from my face as I type this. It's interesting though cause they found this cyst and node by mistake while looking for a kidney stone and now I have this weird sweating no one has been able to figure out and I have this Internist coming along now to okay a surgery for a cyst and ovary and I wonder will he by mistake come upon something else? It seems to be the way it has gone for me since diagnosis. I am no clear cut case at all. The docs usually pale when they see my complex history,lol.

Anywho I am on board for the surgery just trying to get your viewpoints seeing that the anaesthetic and this extensive surgery is more riskier for me than many. I do agree for sure though, that's what I fought for and will get I hope sooner rather than later. Thanks again for your input. Blessings, Bluerose

Lea19
Posts: 31
Joined: Aug 2009

Bluerose,

Sorry about all the stress you/ve been going through. I agree with some of the others - I would without any doubt have a total hysterectomy. That's once less thing to worry about.
I hear you on the concern being in the hospital during flu season ... It concerns me all the time. Hopefully everything will go smoothly but you need to make sure they are listening to you when you discuss your past history and reason for being concerned about getting a general. I would also leave the hospital as soon as possible. I differ from most on the answers on this point though - I would not get the H1N1 - I am concerned how quickly it was rushed to the market. I just can't imagine they were able to do testing on people with compromised immune systems. I am not suggesting this for others of course. I would encourage my own family. I get the flu shot.

Take Care

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

My GP wants me to get the pneumonia shot but now as I was telling the others this flu like thing I got over a month ago seems to be back and the profuse sweating (without a fever) has never let up. Could be lots of reasons for the sweating including hyperthyroidism (which I have anywho but could need med increase), cancer, rheumatoid arthritis (osteoarthritis was my diagnosis a while ago), infections (had a throat infection) plus about 10 other reasons - none of which are pretty. Is it the flu though - have seen 3 docs and none of them are sure as I have had no fever. grrrrr.

As I said to the others though I will be seeing an Internal Specialist Pre Op and that may be the best appt to diagnose not only is it a go for him to clear me for surgery but to figure out this freakin debillitating sweating on exertion. I think its my heart or blood pressure and my cardiologist has all but agreed but I still am having symptoms so he should be able to yay or nay the surgery for now. He knows best.

I will go ahead with the surgery, its just that when the oncolgoist prefaced my first meeting with him yesterday with 'its probably not cancerous' he gave me the feeling the surgery was overkill and I felt that maybe they were doing the surgery because I was kind of demanding it so it set up questions in my head about maybe I am jumping the gun with risky surgery. But they wouldn't do this surgery if they totally didn't think it had merit so I am okay with it all now. Especially since I will be cleared by an Internal Specialist first.

Thanks for your input, like the others, it really helped me realize I am right in going ahead.
Blessings, Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I wrote to each of you individually here but I wanted to just briefly say a big thank you again for all of your input. I totally agree with all of you who are saying the same thing.

Thanks so much for your support and input, it means the world. I am alone and have little support and without your help and caring I don't know what I would do. Thanks for validating my instincts to move on this surgery. Big hugs to you all and wish nothing but health and miracles in all of your lives and in the lives of those you love. Blessings, Bluerose

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I've followed your story. A 'optimal debulking' hysterectomy, with lymph nodes removed for staging, is huge surgery, I'm won't sugar-coat it. So I sure understnd why you don't relish that big 'let's look around' kind of surgery where they slice out everything you can live without. I tell all the newbies, terrified of upcoming chemo and radiation, that once the surgery is done, the worst is over. I have trouble waking up after anesthetics, so I know the pre-surgery fear that grips you tonight.

But I'm with the others that I wouldn't hesitate unless I was of child-bearing age, and maybe not even then. Even if it's not cancer, all of that 'female stuff' starts causing problems for almost everyone in one way or the other. But I still wanted to give you a big hug. makes you think of that old saying "Be careful what you ask for, cause you just might get it." So true, so often.

You're gonna need some help when you get out of the hospital for the first few days, so start making a plan for that. If you won't have anyone, you may want to rent a hospital bed to help you get up and down. I remember how impossible that was for me without help for the whole first week after my discharge. (I only stayed 2 nights in the hospital.)

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for the hug, I needed that. Actually the gyne/onc said that he would go in and remove the ovary and tissue from the uterus where 'odd tissue' was found (great,sigh), and while I am on the table they send it straight to the lab for immediate biopsy results. If no cancer is found they still do a full hysterectomy and remove the other ovary and tubes too which is called something different, I forget the name. If, God forbid, they find cancer then and only then do they take omentum samples and a node or two to see if it has spread - other things if they feel that there is a chance they are involved - other tissue. So that's the plan.

I live alone so worry about help for the first while but the nurse in the gyne/onc's office said that they will decide in the hospital whether to send help for me or not but of course this won't be 24/7 care, I can't afford that. To make things worse I have a very low platform IKEA bed, love it and have an amazing Tempur Pedic mattress but it is very low - thanks for bringing that up cause that is going to be a problem I bet. I am in a one bedroom apt so don't know where I would fit a rented hospital bed but maybe I should consider getting a box spring to raise the mattress on my bed at the very least.

I have been fighting for so long to get this surgery but it all came so fast and its way more extensive than I was first told it would be so feels like no time to think really. I feel like I am in shock.

I am seeing an Internal specialist on Oct 13th as part of Pre Op and I think he is the one that will clear me or not for the surgery - I mean sooner rather than later to have the surgery. Right now I am battling some weird profuse sweating of the head and face with no fever and have been for over 2 months now - no idea what that is but there are serious conditions that the nurse said exist involving that kind of symptom so again the Internal specialist will be great to figure that out I hope. Also I have had no flu shots and am 'at risk' patient so no idea what to do there unless they can put me in a clean room before and after surgery but I know those rooms are at a premium I'm sure. Not sure its smart for me to go into hospital and have surgery with no flu protection right now. I need a pneumonia shot too but if I am sick you cant have the shots so it goes around and around for me with complications but I have to leave it to the Internal specialist and God.

My health is always complicated by something but the big worry is two fold, well three actually, one what is my health status now, two should I proceed not protected from flu and pneumonia (which can happen after surgery) and three just the worry about cancer. The fun never ends.

Anywho thanks for your input I appreciate it. Hope you are doing well. Blessings, Bluerose

Lea19
Posts: 31
Joined: Aug 2009

Bluerose,

I'm concerned that you have no help once you come home from the hospital... no friends or family in the area that could stay with you a couple days? Re: your bed - what if you went to BB&B and bought a few of the bed risers that the kids use to bunk their beds in college? That might be a cheap solution to raise your bed up a foot - there are also bed grips that you could get to help you pull yourself out of the bed. We had one for my dads bed and couch. Re: your sweat issues - before I had my surgery I started having terrible sweats that would drench me. They said my entire internal system was totally going heywire. I hate to say anything less that positive - but they called my GYN/ONC off the case the morning of my surgery because they didn't believe my tumor was CA. So they don't always know. What a predicament concerning the flu/pneumonia shots. I wish I had some words of comfort about that. I have no problem making sure everyone that walks in my room scrubs their hands - I've even told doctors that the water hadn't gotten hot enough & made them scrub longer! You have to look out for yourself. I have to say again - if they are in there anyhow - why not take it all as a precaution? That would be my suggestion to them.
Hang in there...

P.S. my roses did terrible this year - broke my heart!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for your support and concern. Ya I have to figure out something for the bed. I need the Tempur Pedic mattress for pressure points but the IKEA bed is sooooooooooooo low. I was thinking of buying a regular boxspring to raise it to normal bed height at least but after I am recovered what to do with that big queensize thing after, no room for it in a one bedroom apt. We have a gov group here that helped me get things for my bathroom to help me in the shower and maybe I can call them on Monday and get a physio in to have a look at the problem. They may have something that will help.

The hospital will get someone to look in on me if I need it when I go home but no one I know can spend the night or two. There is the remote possibility that maybe a friend of my daughters might be able to help out but she is kind of unpredictable and I need a sure thing.

No I have no one that could stay with me, both my kids live far away and the friends I had here weren't as close as I thought when I moved back a few years ago so big disappointment there. I have an agency I found that helps those on disability like me who are older - which is pretty much me (sigh) and they can come in for a couple of hours once or twice a day but then you have to pay them of course and it adds up.

I just walked down to the store we have in our apartment building and I came up drenched in freakin sweat - back of my hair is soaken. The minute I sit and rest I cool down and the sweat goes away - so it's only on exertion which to me points to heart problems or blood pressure. I have seen my cardiologist and he doubled my blood pressure meds but it takes almost a month to see how it is going. He might have to up it more. But he is not sure that is what is causing this sweating - its more than sweating its like I am rained on.

I didn't understand what you meant about your sweating? Were you diagnosed first and with what and did the onc say that is what caused it, cancer? Or what? What did you mean by 'your entire internal system was going haywire'? Where did you sweat the most and did it calm down when you rested? Only on exertion did you sweat or all the time?

This is the first time I heard that someone had the same kind of sweating as me, interested in hearing more details if you have a minute.

Thanks again for your reply and hope things are going alright with you and yours. Blessings, Bluerose

jane65
Posts: 279
Joined: May 2009

Hi Bluerose, we're here to support you and be your cheering section.
You've made the right decision and it's great that you'll get your concerns addressed before surgery.

Since you're alone, be sure to fill your pantry, and refrige with food for when you're home.
Canned soups, juices, canned fruits, prepared foods in the freezer and yummy ice cream!

Feel better, we'll talk more soon.
Jane

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for the support and good wishes. I actually have a grocery store here that has online ordering so that's how I order all my groceries so I will make sure I'm stocked before I go. There is a food service here that makes full suppers and delivers them frozen and all you do is warm them, maybe I will splurge and do that for the first couple of weeks perhaps. It isn't like Meals on Wheels which is for the housebound/sick and not very good food, it's a new more home style meal business. It sounds good.

Anywho thanks for your input, always appreciated. Take care. Bluerose

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

hey BlueRose, just wanted to send out a hug and lots of prayers. Blessings Bonnie

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for the hugs and prayers, I appreciate them. Hope you are doing alright. Blessings, Bluerose

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