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Soooooooooooooo confused, HELP !!!!

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

I posted this in Ovarian Cancer support as well as it's specific to that type of cancer but in general this posting under emotional support is for just that and I know many in here so value your opinions. What do you think? Any input would be appreciated - I'm going bonkers -well bonkier anyways. Sigh. Here is what is going on.

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

grandmafay's picture
grandmafay
Posts: 1622
Joined: Aug 2009

I'm not sure I can help. I know I really can't give you advice on your decision except to say that you sound like a very strong woman. I'm sure whatever decision you make will be right for you. Do you have a family member you can talk with, one that will listen and give you the change to really get all your thoughts and concerns out? My prayers of strength and peace are with you. I'm glad you came here to write down some of your thoughts. Fay

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

I have chatted with ovarian cancer survivors and they pretty much validated the need to follow through with the doctors plans of a full hysterectomy - many of them wish they had done that from the start as their ovarian cancer was found later than it might have been. I think my issues came when the oncologist said that the cyst and node were probably not cancer and that gave me a feeling, by the way he said it, that maybe this was overkill in doing the surgery but deep in my heart I really knew it wasnt and the survivors who had ovarian cancer confirmed that.

I have a very complex medical history from side effects of my original cancer years ago so that complicates the anaesthetia for me so that is a scarey part of it all as well. I have many stalls to get to this place and I think I was also so stunned by the speed at which they are moving now its been whiplash. Today they set up the Pre Op and I will be seeing an Internist first to make sure I am okay for surgery. Since I have some sort of flu and profuse sweating and have for awhile he may be the best to figure out just what that is before proceeding so - everything for a reason. I will be in Pre OP Oct 13th. Surgery is the 23rd.

Thanks again for your input and prayers. I really do appreciate it. Hope you are doing well. Blessings, Bluerose

SonSon's picture
SonSon
Posts: 186
Joined: Jul 2009

Sounds pretty aggressive - but perhaps that is what is needed.
Maybe they are concerned about being too conservative and then later wanting to remove the uterus and all but not able because of weakened condition (at a later date).
About contacting your general practitioner - why not call and say it is an emergency? After all, she has been your doctor for 25 years and it IS an emergency - you need more professional medical advice right away!
Faitma

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

Yes it is aggressive indeed but so is ovarian cancer. It is very hard to diagnose it before its very late in stage and it was just an accident that they found it while I was being investigated for a kidney stone and the radiologist spotted it. If it does prove to be cancer, and no one can say it isn't unless they go in, plus with the history I have of cancer and aggressive treatments in the past, this sets me up for another cancer possibly.

I have been through menopause already so I dont need the ovaries and tubes so that was in their thoughts too, not like I still wanted children I have had them so they are erroring on the side of caution I think and while they are in there what the heck.

My GP is out of the country on holidays for 2 weeks so can't see her but the info I need I think I can get from the oncologists nurse who was in the appt with me yesterday. The rest I will save for the Internist I will see Oct 13th.

As far as flu shots are concerned they arent even available here for another week and it takes time for them to kick in anyways, I need the pneumonia shot too and that can be one of the side effects of this surgery so that will have to be discussed with the Internist as well. He may just decide to have me wait til I am vacinated - given my complex health condition and want to solve the profuse sweating issue too in advance, don't know. Regardless I am finally in the right place with action so I have to trust in them. Now with the input from those on this forum who have been there I do feel more confidant I am doing the right thing by going ahead.

Thanks for your input too Fatima, I appreciate it. Blessings, Bluerose

KCKitty
Posts: 11
Joined: Oct 2009

Hi Bluerose,
Just wanted to thankyou for your support about futher surgery. I'm ordering nipples via the net. Yippi, before I make any decisions. Don't fear a total Hysterectomy. You are going to feel so much better. You'll wonder why you did'nt do it earlier. I am 47 and had one at 41 and am recovering from a double mastectomy. They saved my life and it will probably save yours too. They have really good products on the market and at health stores for side effects like dryness, ect. I hope your diagnosis is a safe one, its better to be safe than sorry.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Blue. I am sorry that your having to deal with more medical issues. And I am sorry that this has gone on for so long. I don't like to offer medical advice on such a major issue in someone's life. But your a friend and I will talk to you like your sitting across a table from me having a cup of coffee. You have suffered through pain in your lower body for quite sometime now. So there is little doubt that this cyst has to go. Taking pain drugs on a regular basis is not much good for the other organs in your body. Your quality of life is suffering. You might hit the lottery and feel a bunch better a couple months after the surgery. So the next question is how far to go! After all these months of waiting I can't imagine having to go through this again in a few years. What if another cyst comes up on the other side? Do you go through the struggle with the doctors and medical system again? As you said you are not going to have any children. When the doctors opened up my face to remove my mass I had one request "if in doubt take it out". The mass they removed came up inconclusive for cancer and it took 6 more boipsies and 4 months to find my cancer cells. If your biopsy is inconclusive what then? Are you going to keep worrying and struggling with doctor appointments ect.
My wife had a total hysterectomy at an early age due to all sorts of damage that caused pain. It was the best thing she ever did for herself and it improved her quality of life more than I can ever put into words. Another close friend had hers done at 50 years old and she also says it was one of her best decisions. I won't sit here and tell you its not going to be painless and take a while to heal. Each person seems to be different. And I hope there is something in place to make sure your getting meals ect during your recovery.
Anyway you need to look at the much larger picture here blue and not just the easy way out of this situation. At the end of the day you know Slickwilly loves you no matter what decision you make. Hugs to you Slickwilly

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

Have been wondering how you have been, good to hear from you.

Thanks for all the info on others you have known who have had the same surgery I will go going through and there is no 'easy way out' for me in it all that's for sure. I meet with the Internal specialist next Tuesday and the surgeon this Friday and barring any holds put on the surgery due to other health issues I am struggling with right now I will be in the OR on the 23rd of this month, bribbing the anaesthesiologist to make sure he brings me back. That's the biggest worry for me, general anaesthetic with my heart issues. I have to keep remembering "Let Go and Let God' and I say that about a hundred times a day.

I have been dealing with health crisises since my transplant so I'm worried but not too freaked out. I have come through alot and hope this is just one more hurtle I will come through.

Hope you have been okay and that you have gone fishing alot more since we last wrote. Love ya back, take care Slickster and again thanks for the support. Hugs back, Blue

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

That's what we are all here for, to get support when we need it and to give it where we can too so no worries, it was my pleasure.

Thanks for your input on the positive aspects of a hysterectomy and I agree its the best route, see an Internal Specialist on Tuesday and he will make sure I am up to the surgery. Feeling fluey right now but hopefully he won't see that as an issue, still having major sweat issues for seemingly no reason. My blood pressure is under review right now so hopefull that won't get in the way either.

Take care. Blessings, Bluerose

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