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Terrified for my sister

allycat0303

allycat0303

Ideal_Rock
Joined
Nov 19, 2004
Messages
3,450
Hi Everyone,

I'm really distraught as I write this. Many of you know that my sister and I went through a bad patch 4-5 years ago. Despite a lot of ugliness in the past, our relationship is now quite good.

About 1 week ago, my sister had an IUD inserted. It hurt the first day, then the second. Earlier this week she started having left lower quadrant pain. She just felt something was *wrong*. We were concerned about the IUD moving. As you know, she's a doctor at the same hospital where I am a resident. I insisted she get an ultrasound today.

They discovered a 5 cm mass on her right ovary. From the radiological characteristics, it does NOT look benign. He thought perhaps it was a complex cyst, but in his words "it looks atypical, and suspicious". She had an emergency consultation with Gyne, who wanted to remove it immediately, because even if it WAS a complex cyst, over 5 cm is more concerning for malignancy. My sister refused to have it removed, because the Gyne cautioned that they would be removing the ovary. She elected to wait 3 weeks, and repeat the ultrasound, on the faint hope that it was a menstrual dependent cyst.

In addition, she has a second 2 cm *cyst* on the left ovary. My sister is 31 years old. She wants to be mother more then anything in the world. She's made very bad romantic choices but for the last 6 months has found a man that I *adore* and feel very strongly that he is *the one*. He is so good to her, they just get each other on every level. After countless crazy, toxic relationships, this guy is everything I could dream of for her. And she is really, truly in love without any reservations.

Being a resident, I can't help but freak out. If it's ovarian cancer, she is in very big trouble. The survival rates are dismal. Even if we get the best case scenario, she will lose one ovary, and the second one is not normal. She cried and told me, she thought it was punishment for all of the bad things she had done in her life. I know it's not. Yes, she's done things, but she's not a bad person, she was in a bad place. I want to pressure her to just take it out now. I wanted to shake her and scream for her to have surgery ASAP. I don't want kids. I'm realizing that I'm approaching this from my point of view, and I'm blinded by my own priorities, but I can't stand the thought of losing her.

I just needed to vent. I know this is not coherent. We just found out about 2 hours ago.
 
Sorry to hear this. Can't they harvest her eggs when they remove the ovary and bank them?
 
Hi Ally.

Firstly, big hugs to the both of you. What a trying and difficult time this is

I would like to speak to you as one doctor to another.

Can you tell me more about the U/S characteristics of the mass?

Has she had CA-125 checked?

Have they calculated a relative malignancy index?

Any further info would be helpful here.

Thank you.
 
Double post
 
Hang in there and be strong for your sister. I completely relate right now, and it is scary. Just encourage her to get the help she needs.
 
OMG. OMG! I hope she can harvest her eggs and let them help her. Being dead is far worse an outcome to being barren. I had Cervical Cancer and it came back, and I almost had a hysterectomy. I was always kind of hot and cold about kids, but the idea of being outright unable freaked me out, so I was SO relieved to finally have it "cured" as cured as can be. But I never hesitated for a single second to go through with anything I needed to go through to get it. Because like I said : dead kinda trumps barren.

I am glad she's in a better emotional state with the relationship status but her health is not good. I think it's AMAZING they didn't check this before the IUD went in. I have a Mirena and I had to go through TONS of testing and ultrasounds to be 100% sure I was OK before they'd let me have it. I get ultrasounds and xrays and paps and the like every 6 months to check it all back out and make sure nothing moved and nothings back.

Also, you can always offer to surrogate for her, gestational or otherwise, should it really be a damaging situation to her fertility. I know that's not a priority right now, but she might be comforted. I just really hope she doesn't put this off ANY MORE. If that 2nd just formed that fast...holy crap.
 
Oh Ally, I am so sorry to hear of this and I am hoping it turns out to be benign and no matter what it is that everything turns out just fine for your sister. Sending bucketloads of *dust* her way. And hugs to you. Keeping you all in my thoughts and prayers.
 
oh my, allycat! I wish only the best healing vibes across the cyber miles, for your sister. Being an MD, she will get the best care possible, so that's a relief! Sometimes knowing information can be more stressful - the possibilities are endless in your head.

NEver mind all of that. This is the time to be a patient and hear what the experts have to tell you.

I hope it all goes well for her. She is in my thoughts and prayers.... hang in there. DUST DUST DUST!!!!!
 
I am so sorry about your sister! I will have her in my thoughts and prayers.
 
Ally, I'm so sorry to hear this. I know you and your sister have had your ups and downs, but it's great that you're always there for her, especially during this scary time. I'm sending the best possible thoughts your way and hers.
 
I'm SO SO SORRY. I got chills reading this because this sounds so much like what happened to my aunt when she was 25. At that time there was nothing they could do and she had to have a hysterectomy or die.

Can they remove her ovaries and freeze her eggs? I thought I might have to have a hysterectomy last year and that was an option I explored. It was expensive but it might have been worthwhile. I wasn't even sure I wanted kids and when they said I might have to have a hysterectomy I was in shock and in pain. I can't image how your sister feels. If they can save the eggs then maybe she can have the surgery immediately.

I have nothing to offer but a TON of dust, a prayer for her, and to let YOU know that she is so lucky to have you. ((HUGE HUGE HUGS to both of you))
 
Oh Ally! I am so sorry to read this news about your sister. Loads of dust being sent to her and your family.
 
I had a 5 centimeter ovarian cyst, and the way I found out about it was particularly novel; it burst. :shock:

I was walking back to my office from the cafeteria, and in the space of about 2 minutes, I went from just fine to OOOOOOOHHHHHH! ;( :knockout: It was horrific pain (and I've had a collapsed lung and did natural childbirth twice) and my DH rushed me to a walk-in clinic a couple of buildings away. We had no idea what it was, they were thinking ectopic pregnancy. The doctor gave me some demerol, the only painkiller that I'm not allergic to, and I felt better. The doctor sent me to the hospital, where an ultrasound showed a big X over the cyst, where it ruptured. It just blew out.

I continued to get the cysts, every period for about 2 years, and I took a ton of Naproxen Sodium, which helped. Yes, every 28 days, my body produced a new cyst, anywhere from 2 cm to 5 cm, and instead of just ovulating, they burst. They even alternated sides, so the fact that your sister has one on the other side doesn't mean much. I didn't have the cysts until I quit taking birth control pills. I was about 29. My body finally hit the reset button when I got pregnant with DD, and I haven't had a problem since then. That was 17+ years ago.

So, I guess my point is, most ovarian cysts are benign, and be happy she found out about it at this point, before it ruptured. :?
 
Very sorry to hear this, she will be in my thoughts and prayers.
 
Sending dust and healing thoughts for your sister.

To be honest, I think it's fairly "normal" to be in denial when you first get a possible diagnosis like this. She needs time to process it.
 
Sending you and yours love and dust. We are here when you need us.
 
Hugs, thoughts, prayers, and dust for your sister.
 
Ally, I have nothing to offer except my heartfelt dust, healing vibes and prayers. How lucky your sister is to have you (and you, her, of course). I think it was JewelFreak who said in Sphenequeen's thread that she sees the two of them rocking on the porch together when they are old and gray-- I see the same for you and your sister.
 
Sending lots of dust and hugs!
 
My goodness, that is so scary for all of you! I am so sorry and will pray that the cysts are benign!
 
AC - how terrifying for you and your sister both! Hopefully she'll be more open to immediate treatment once the initial shock of the diagnosis wears off. She is lucky to have you by her side - strength to you both!
 
What a complete shock for your family to absorb - I am sorry you are all going through this. Lots of prayers for you all.

I am also not sold on the idea of having children, so I completely understand your reaction and desired outcome. Ovarian cancer is certainly not something that tolerates delays, as you are well aware. Do what you can to support her through this very difficult time, but be firm with your opinion - it is not uneducated. If having children is a life goal for her, having an ovary removed does not prevent that from becoming a reality. Yes, it complicates matters. But there are donors, surrogates, and even adoption. Mothers who have children through alternative methods receive all the same responsibility and joy as those who do it the more traditional way. :)) The one thing that WILL prevent her from realizing the blessings of motherhood is death. :nono: I am sure it is beyond overwhelming for her at the moment, and perhaps she is not able to focus on the long term, big picture when something very special to her is being threatened. Give her a couple of days to wrap her head around it and then go from there.

Best wishes and big hugs.
 
This is an awful and frightening situation for you all. I don't know what I would do it my sister got sick. I hope its nowhere near as bad as you think it is.
 
Alleycat, no matter what the characteristics look like before they see it IRL, chances are great it's benign. I had a 23-cm ovarian cyst, HUGE, with all the traits of malignancy: surrounded by fluid, I had already gone through an early menopause, etc. My gyn was certain -- and told me over & over -- that I was a goner. Great bedside manner. Turned out to be a fibroid. They did do a complete hysterectomy, which would be very sad indeed for your sister at her age. But I'm still around enjoying the sunshine & life & DH & colored stones & my cats & dogs! She has loved ones to support her; you'll be there for her I know. Best best dust, honey!

--- Laurie
 
I didn't sleep much last night, I spent the night with my mother and sister, talking. It's especially difficult because my brother (he's an Oncology fellow) is passing his oral licensing exam in internal medicine on May 4th. Usually he would have been the go-to guy on this, but we made a family decision not to tell him until he has finished. We didn't want him to have ANY distractions, as he is already very nervous.

I don't know how to properly show my gratitude for all of the support you've given me through the years. I write the words, but it seems so small and inadequate, compared to how I feel. I think I mentioned once, that I don't really have friends IRL. I have a strong family network, but I don't have friends to go shopping with, or hang out. Sometimes, I'm so lonely it hurts. On daily basis, I don't feel like anything is missing, but when something like this happens, I wish I had a best friend who would say, "It's ok. Freak out completely" But I can't do that with my family. I'm always supposed to *fix* it.

It's ironic because when my sister was 22-23 years old, she used to have panic attacks that she was infertile. I used to think she was completely crazy, and now it's like her worst fears have been realized. Before this happened, she used to tell me that she *would* be a mother, through adoption etc. I think that yesterday, she may have been reacting out of *shock/denial*.

We have an appointment with a GYNE from her clinic today (one of the perks of being an MD), for a second opinion. I was a bit heavy handed about it, but I wanted to be sure that her decision to *wait* is reasonable. She really didn't want to even discuss it again, but I insisted. Please don't flame me for it. I realize that I might be imposing my view on her, but I can't be impartial about this.

Rosetta, I'm about to show my total ignorance in Gyne related matters. CA-125 is elevated (46). I'm not sure if US and Canadian units are the same, but it is elevated. The U/S report was dictated. I can't remember all the details, but the radiologist looked at the images right in front of us, as he is a personal friend. If I recall correctly, the mass had several papillary projections and highly loculated. His concluding remarks was "high suspicion for malignancy, immediate referral to GYNE. Staff gyne Dr.H made aware." Its the wording of his conclusions that made us worry. He called Dr. H personally. Not the resident in GYNE. The staff. On a friday afternoon. Usually the radiologist will call the junior or senior resident, even during business hours. I do have some questions, and I confess, I did NO research on this, because I don't trust most information. I know elevated CA-125 for other reasons. Can cyst get it up? Could this mass be a teratoma? I don't know what a relative malignancy criteria is. I did look that up, but I'm not sure how much weight you give to this? Also, I have quoted survival 43-25% at 5 years (all-comers). Is this accurate? I need to know worst case scenario. Also, what's your take on removing ovary? I assume they don't want to biopsy for fear of seeding/technical difficulties. Obviously, I have a surgical mentality and therefore quite *aggressive* by nature. I consider GYNE slightly more medical then surgical, therefore, more reasonable/balanced approach.....

Ame, Enerchi: I completely agree with both of you. For me, it's not even an option. Gyne says ovary out, I'd be hounding them for the earliest OR date. I'm trying to be impartial, but I don't see how waiting is going to help. Even if she has a baby at one point, she needs to be ALIVE to raise them.

Gypsy, Justginger, Lulu: Harvesting the eggs has a very low success rate. REALLY low. Her best bet would be to freeze an embryo, but we have some religious reservations about keeping 15 or so embryo around and not implanting them. I'm not ruling this out, but from a moral standpoint its a bit iffy for us. She is not passionately against it, but her gut was to say no. Also, to harvest at this point, she would need hormone injections to induce the egg production. With her current risk of malignancy, I'm not sure that they would willingly give her hormones right now. I think if/after surgery and a firm diagnosis and successful treatment, then she would go that route. We asked for a consultation in Mcgill Fertility, because it made her feel empowered. Although money is not an issue for her, in Quebec ALL fertility treatments are covered by provincial healthcare. It's currently illegal in Quebec for a clinic to charge for fertility treatments. So it's accessible to everyone.

Sphenequeen, Missy, armywife13, Zoe, Onedrop, ilander, Kaleigh,Susimoo, Princess, Okiegirl, stargurl78, diamondseeler, VR Beauty, Maisie: thank you for the kind words.
 
Allycat - I really want you to come and vent here - any time/anywhere you can log on---- get to PS and we are MORE Than happy to be your friends and get you thru this!

How will your brother feel as an oncology resident, that he wasn't included in something that he could have been useful with? Will he understand it was for him or that he's being excluded? People are funny when they find out they were left out on purpose, no matter what the reason... just throwing that out there.

The connections you & your sister/brother all have will be wonderful to move thru this as quickly as possible and with the top people. I hope it goes well for your sister....

sending more dust. Take good care of yourself. CRY, SCREAM, FREAK OUT ---- its all normal and healthy!
 
Allycat, I am so sorry that you and your family is going thru this. Sending tons of dust that it turns out the be nothing more than a benign cyst. Please vent here anytime you need to. We are here for you...hugs.
 
How terrifying! I hope everything goes smoothly for her.

I would talk to her and lay out the different scenarios:
- If she doesn't get treatment and has a child, she has a good chance of leaving her child motherless. That is selfish.
- If she gets treatment, there is a chance that she will still be able to have a child (saving the ovary, harvesting egg, some medical solution I know nothing about).
- If she gets treatment and is infertile as a result, she can adopt a child, as she herself has said in the past. An adopted child is not second best - a child is a child.
 
Ally

CA 125 is only mildly elevated here. It lacks specificity particularly in pre-menopausal women, and can be elevated in other conditions such as endometriosis and pelvic inflammatory disease, as well as other cancers. Does your sister have a history of any of these?

RMI is a measure of the likelihood of ovarian Ca based on US characteristics, menopausal status, presence of acites and CA 125. It's not foolproof. RMI above 200 is suspicious of malignancy. I punched the numbers in (I assumed no acsites and the poorest US characteristics) and got 130 ie likely benign.

If this is Ca she will need a hysterectomy and bilateral oophorectomy. Oocyte banking hasn't got great success rates (freezing embryos is better) and she would need a surrogate. But I'm not convinced that this is Ca from what you've said. In her situation, I would have the multi loculated ovary out now, but wait on histology before touching the other. The low risk option is to have everything out, but she is super keen on kids...

Biopsy is not a good idea due to the risk of peritoneal seeding.

Unfortunately, all comers prognosis for ovarian cancer is poor, but most ladies do present late. Stage 1A (ie very early) prognosis is actually good. I know it's really hard, but try not to research too much into his until the diagnosis is made. You're showing great restraint so far. Big hugs.
 
Ally, not much to add here except I wanted to send my thoughts hugs and prayers for all of you in this difficult time. Hang in there and praying for the best outcome xo.
 
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