Surgery scheduled...

[suzan w]

I saw a surgeon today and have scheduled a prophylactic oopherectomy/fallopian tube procedure for next Monday...Aug. 17th. This is as a result of the positive BRCA2 test. Everyone I consulted; GP, oncologist, surgeon recommended that I have my ovaries and f. tubes removed. Hopefully it will be an outpatient procedure, laparoscopic...as long as everything looks OK when the dr. starts his poking!!!
I feel grateful to have this chance to avoid another cancer, because of the results of the BRCA test. It should be easier for all of us to have this test...despite what doctor's and insurance companies tell us about our bodies! xo Suzan

[StephN]

Dear Suzan -

Gotta do what is necessary, and this seems so sensible and low risk. All the best for an easy and smooth procedure with trouble free recovery.

Hope you had a good trip recently!

[AlaskaAngel]

Hi Susan,

One more step... decisions decisions... ! I hope next week's operation is simple to get through, and that the changes are gentle for you. You do look wonderful in the photo. Will be thinking positive thoughts for next week.

AlaskaAngel

[Cal-Gal]

Good Luck Suzan!!!! and Thank God for the BRCA 2 test!!!!!

[Soccermom]

Dear Suzan,
I wish you a smooth and uneventful surgery!
If you haven't already done so please feel welcome to log onto www.facingourrisk.org (http://www.facingourrisk.org) (FORCE) if you have any questions ,concerns etc about the BRCA journey.
Suzan, there are specific protocols for those who are BRCA + and undergoing prophylactic oophrectomy. For example, it is HIGHLY recommended that a Gyn/Onc perform the oophrectomy.
http://www.facingourrisk.com/risk_management/oophorectomy.html?PHPSESSID=3e57fb42f718ce7f79715e 0c9f13c9db

I hope that you dont think I am being a busybody! I just want you to be fully informed,


Gentle hugs,Marcia

[Pam P]

Suzan - Sending you best wishes for a smooth surgery & recovery. Glad you can do this preventative procedure to say healthy. Pam

[jones7676]

Wishin' you health and a speedy recovery!

[ElaineM]

Good luck for your upcoming surgery. Heal well.

[vickie h]

Suzan,

We'll be there holding your hand all the way. Best of wishes on a speedy recovery, lots of rest and healing.

Love,
vickie

[Laurel]

Brave, wise, strong Susan. Here's to hoping your surgery and recovery are speeding and uneventful. I admire you proactive spirit!

[Margerie]

I had the laparoscopic surgery to remove ovaries and tubes. I was just a little gassy afterwards (now I know what a colicy baby feels like) and that was a little tender. Was pleasantly surprised to see the incisions were tiny. The biggest incision was in my belly button and I didn't even know it was there until my post op check. Anyway, wishing you a successful surgery with minimal post op pain :)

I am glad I had the procedure. I tested negative for BRCA 1 and 2, but my mother was diagnosed with ovarian cancer last year.

[Believe51]

Well My 'lil Pretty, I thank you for your update, I have been thinking of you and now I know how to rearrange my thoughts for you and your surgery. Healing prayers for your continued proactive response to keeping the beast at bay and a speedy recovery. I admire you so. Sending love and smiles.>>Believe51

[Mary Jo]

Praying all goes well Suzan.....holding you close and asking God to give you strength as you heal.

Love and gentle hugs,

Mary Jo

[Joan M]

Suzan,

Good luck with the surgery on Monday!

Joan

[caya]

Good luck on Monday Suzan.

all the best
caya

[Becky]

Dear Suzan

I had a laproscopic oophorectomy. It was easy and a very easy recovery.

I will be thinking about you.

A gentle hug from me.

[Sheila]

Suzan
Will be thinking of you Monday, hoping the surgery is easy and gentle on you....and the worries behind you.

[harrie]

Suzan, like you I am BRCA2, and I had my oophorectomy via laparoscopy done a month after my mastectomy/recon in 2006. They made (2) 3/4 inch incisions and was done out-pt. I don't even remember any discomfort and a few days after the procedure, I flew home back to HI. That was on Christmas day.

What other recommendations did they make to you for the BRCA2?

Wishing you a quick recovery also. Email me if you have any questions, ok?

[Jackie07]

Good luck, Susan. Wishing you a smooth recovery.

I had had my BRCA status checked also - thanks to this wonderful group. The lab (Myriad) did find a BRCA variance of 'unknown significance'. So far I have not been able to convince my medical provider to do a hysterectomy/oophorectomy because it is a 'variance' of 'unknown...'

[suzan w]

Well, Jackie...first of all how would anyone know what a 'variance' of "unknown" is without taking a closer look??? Have you had a pelvic ultrasound (vaginally done with probe) on your ovaries?? I don't see why an unknown variance wouldn't be treated like an unknown 'lump' and have a biopsy? How about a repeat of the test? Seems like it should be either positive or negative...
Maryanne...no other recommendations as far as the BRCA2 result being positive. I have not talked to my oncologist to see if she has any recommendations other than the ovaries and f. tubes taken out. The reason I haven't talked to her yet is that she did not want me to have the BRCA tests done in the first place...and I had to circumvent her to get the testing done!!! Not sure if I ever want to see her again, but when I get over my snit I will probably set up an appointment!!!
xo Suzan

[Soccermom]

Suzan,
just me butting in again..
Maybe its good your Onc is such a "prig"...you REALLY need to see a BRCA saavy Oncologist from now on. I will put out some feelers for one in your neck of the woods!

Marcia

[Jackie07]

Suzan,

You have really become an expert. I just had another ultrasound done Tuesday. The Ob/Gyn who saw me pulled the machine inside of the room after taking my medical history. She said everything looked fine (ovaries not swollen nor...) and agreed with me to have a follow-up scheduled with the specialist whom I had seen in April (The one that had wanted to charge me $5000.00 for the genetic testing.)

Those who discourage us to undergo prophylactive procedures think that we are paranoid - while in truth we are just brave soldiers who want to be prepared beforehand to avoid needless casualties.

However, since hysterectomy and oophrectomy involves much more issues than a simple mastectomy, I will take my doctors' advice for now while it's still deemed a 'variance of unknown significance'.

[Jackie07]

Didn't remember my postings on this thread at all. Pulled it out (through a 'Search') because the title of the thread - 'Surgery scheduled'. Marcia had told me be sure to post it on the Board, so here it is:

My hysterectomy/oophorectomy is scheduled this coming Thursday (January 14.) It's going to be an Laparoscopic Abdominal ... with an opening below [on?] the belly button and two openings on the sides for the ovaries.

Thanks to all the discussions here on the Board, I had requested for a genetic testing and started to research the topic early last year. Incidentally, my 2nd Brother who is ten years my senior had had a big piece of colon cancer (Stage IIa) removed in the fall and completed chemo (optional)before the New Year. Since my Mother has had surgery and chemo for Non-Hodgkins Lymphoma 11 years ago, my oncologist agreed that I should take precaution.

I've had many surgeries before - from the 'head' (brain) to the 'chest' (breast), now down to the abdominal/pelvic region(uterus and ovaries.) Somehow this one worries me a little bit because of the mobility issue. (I was so 'out of it' - semicomatose and left-side paralysis - after the brain surgery, that one did not bother me at all. :)

I'd like to know from others details of their recovery from hysterectomy and/or oophorectomy. What are the things to avoid and what to watch for. My husband has said he will take care of me like he used to - "Haven't I taken care of you all these years?" - he pressed me. But both times my family member (Oldest Brother in 1990 and 2nd Sister in 2007) came and took care of lots of the cooking (My late Mother-in-law prepared lots of food for us back in 1990 and my church members brought me food in 2003) and cleaning. And so far (these past several weeks, months, years...) he has not shown any enthusiam to take over any of the housework... (He's depressed having to live with a 'chronically ill' wife with never-ending episodes of surgeries...)

My Chinese church members will bring me meals for at least a couple of weeks this time. And I've bought a couple of bags of sweet patato to make sweet patato rice soup... I can peel and pre-cut and then store them in the freezer. Before the day of the surgery, I am going to cook a big pot of rib soup with Daikon (a white turnip shaped like an oversized carrot.) I'll cook and freeze some spagetti sauce and noodles. How about making some beef stew in the slow cooker...

Now I'm getting excited for having the surgery... :)

[ammebarb]

Hi Jackie. I had a total abdominal hysterectomy with oophrectomy a year ago last October. My diagnosis going into the surgery was complex hyperplasia with atypia, but final pathology revealed earliest stage endometrial cancer. You won't have the same big incision I had, but the internal healing will be similar, I'm sure. I was very nervous before my surgery, but discovered that I had used a lot of emotional energy for anxiety when I needn't have. There was good pain control, straightforward healing, and a lot of relief that the bad cells were gone! Recovery is a process and I found that I had to be very patient, follow my Dr's. orders about lifting, bending, driving, etc. There is a wonderful site called Hystersisters that gives a lot of information and lots of loving support, if you are interested. They are fond of saying that you have one chance to heal properly, so you should pamper the princess for the recuperation time! I'll be thinking of you as you have your surgery and will look forward to hearing how you are doing as you recover. My best wishes for a textbook surgery and spectacular healing!

Barb A.

[Jackie07]

Thanks, Barb A. I really appreciate it - you have eased my mind tremendously. I will check out the website and immerse myself in cooking... :)

Say, the women on that website are calling themselves 'Princesses' (because of the story 'Peincess and the Pea'?) Are the Her2 women 'Queen' of ... ? Breast cancer is co much more complex than just a surgical procedure. Of course there are a variety of reasons to have hysterectomy... They've got very good, uniformed information organized. Our Her2 Sisters are all very 'different' and seems our website fulfill the purpose in our own way.

[Jackie07]

Just got back home after spending 24 hours in the hospital. Below is what I had just posted on the Hystersisters website:

Just got home - and started having diarrhea. Wondered if the hospital staff had given me 'frozen' juice on purpose. http://www.hystersisters.com/vb2/images/smilies/smileywithcrown.gif Was looking for some sanitary pads - hubby was too shy (and too busy/stressed) to go find some in the grocery story before picking me up. (I have been menopausal since late 2003 because of chemotherapy for breast cancer. Had recurrence in 2007 and went through another 6-rounds of chemo. Even though a second-opinion doctor had told me that there's no need to get rid of my ovaries if menopausal status is confirmed. I thought I would rather err on the cautious side. And my oncologist (through the nurse practitioner) had agreed with me that it's better to have the ovaries out at the same time while I am having hysterectomy.) Luckily I did find what I needed in the storage area under one of the sinks.

The reason why I am having hysterectomy is that I have not been feeling well 'down there'. Had several CT-scans (actually 4 total last year) and then read about the side effect of too many CT-scans. Since I've been infertile forever - three infertility treatments in 1999 only resulted in three uterine fibroids and 2nd sister had had a hysterectomy several years ago because of the problems her fibroids had caused. I made the decision to cut down all the risks - including the uterine cancer risk from taking almost 5 years worth of Tamoxifen. Turning 50 next month - thought it will be a good 50's birthday present.

I must have had a very low pain threshhold. When I woke up from anesthesia in the recovery room - it was the excruciating pain that had waken me up, I guess. A male RN was sitting in a chair next to my bed controlling the dosages dispensed in our IVs. He never even looked up at the patients - never a word when I was hollering for help. I finally got enough courage to ask him if anyone could give me some help - that's when I noticed (and figured out) what he was doing.

I was very curious why the other 5, 6 patients in the room all looked calm and cool and no one seemed to be in the same distress as I was. Before I was wheeled to my room I asked the RN why I was the only one that's feeling so much pain. He replied that everyone is different. I began to think perhaps I'd built up some kind of tolerance because of my previous 4 major surgeries - two for brain tumor and recurrence and the other two for breast cancer and recurrence.

After getting pumped up with pain killer, I fell asleep soundly until night fall. Hubby decided he's going home to have supper and get some rest. I must have fallen asleep again - not quite sure. But I was able to eat a very late supper (10 pm?) with mostly juice and other liquids. By midnight, I was feeling so good (after getting another dose of pain-killer) I decided to walk around the East Wing of the 'North Tower". It had taken me several rounds to finally get a feel of directions and the coordinance of my room (831 on the Eighth Floor). I had passed the same nurses stations two, three times and was cheered by several of the staff working behind the counter and the ones out checking on patients in different rooms. After about 30 minutes, I went back to my room and laid back down. A few minutes later, a night-shift doctor stopped by my room and told me that my surgeon had specifically asked him to check on me. It really gave me a very nice feeling. The young Resident doctor was borne to a Chinese immigrant couple from Hongkong and was born and raised in the States (Chicago and Houston - big cities with very solid Chinese communities.)

The air conditioning in this brand new building (2,3 years?) was 'silent', but there's a noisy 'air filter' staying on. I told the staff that there's no way I could rest with the noise. She said the whole building was quite full and she didn't think it's possible for me to be moved to the quieter ones that do not have the special 'filter system' for cancer patients. A couple of minutes later, she brought me a pair of soft ear plugs. I could still hear the noise, but I was able to finally get some rest.

Around four past midnight, I was still wide awake (in bed) and decided to watch some TV and then 'accidentally found an Internet connection. The staff brought me an awkward keyboard that's made of soft rubber. Took me a while to figure out how to navigate with the big TV screen far away from me. After sending out just one short e-mail to my college choir friends (several of us cancer survivors have formed a small circle within the Chior Alumni Group and called ourselves 'Tumor Relatives' = TR = Tyranoserus Rex = Teddy Roservelt, :) I decided that was enough for the 'night' and went back to sleep. (Was not able to access the full Her2support site because of limited byte size, I figured.)

Of course, one can never really 'sleep' while in the hospital because the staff constantly comes in to check either vital signs or other stuff. In the morning, my surgeon showed up making rounds and talked to me briefly - I really like this young (a 35-year-old with a prominent 'receeding' hairline) Aggie's smiles. His assistant had told me during pre-op that Dr. Fothergill is a highly sought-after doctor - most likely because of the 'state-of-the-art' laparoscopic techniques. He was able to get everything out and said all the tissues looked fine.

I felt very relieved that the surgery was a success and the recovery wasn't bad (except the pain I had felt in the huge recovery room- but thanks to my much injured brain, I generally don't remember trauma/bad experience for very long time.) All together, I had spent just around 24 hours in the hospital. After I had gobbled down my 'liquid' lunch at 11 am in the morning, I was wheeled to the front entrance and rode home with my husband.

It's so nice to be home.

[StephN]

Dear Jackie -
Way to go - and you are home without incident.

I am VERY glad that you have started the year right by getting this procedure over and done with. Now you can forget about all the worry you were having over it.

[Jackie07]

Thank you, Stephnie. I saw on my surgeon's 'order' that the reason for my surgery included 'BRCA' and family/personal cancer history. Seriously, it was because of the recurrence of both of my previous two surgeries (brain and breast) and Mother and 2nd Brother's cancer incidents prompted me to take action. I am really thankful to this wonderful Website that we can call home to and exchange ideas and experiences.

Another reason is my age and the unknown insurance future. My COBRA with Blue Cross Blue Shield is running out in March and we will be eligible for Texas Risk Pool. Guess who's managing the State program? Blue Cross Blue Shield.

My co-pay this time was $750 - much more than any of the copays ($100.00? )I'd had before with my previous HMO. The surgeon used both Laparoscopic abdominal Hysterectomy and LVH (to get the other side of the cervix) My only risk in the abdominal/pelvic region is now the 1% of peritoneal cancer.

Before spring ends, I will request for a PET scan to make sure there's nothing 'growing' on my right soulder and neck area... [might be sooner since the irritation has been getting more and more prominent. Missed the neurosurgeon's call this afternoon while taking a nap. 1/18/2010]

Now I know what 'cancer' means. Yes, it has got too many 'legs' like the crab... You never know where it's gonna strike...

[ammebarb]

Hi Jackie. I'm so glad to know that you have had your surgery and are now home for the recuperation. Be a good girl, and follow those Dr.'s orders! Isn't it good to know that you have cut your risk? Did you visit Hystersisters? What did you think? Mend quickly and well, Jackie!

Barb A.

[Jackie07]

Thanks, Barb.

I did visit their website and had received a booklet from them just before the surgery. I posted a long report on their site after I had been released from the hospital yesterday (see a couple of postings above.) There are 600 new hystersisters registered there. Hard to imagine. But the information provided there is very good and helpful...

Thanks again for the follow-up.

[suzan w]

Hi Jackie, I am so glad to see that you got your surgery!!! All I have left now to remind me of mine are 3 little scars about an inch long...to go with the 3 little scars from my appendectomy!!! Glad you are on the mend!! XO Suzan

[Jackie07]

Thanks, Suzan. Hope you didn't mind my hijacking your thread... Maybe we can encourage everyone who's having (had) the procedure to continue on this thread... :)

[schoolteacher]

Jackie,

Hope you are feeling better today. You are one strong woman.

Amelia

[Jackie07]

Thank you so much. I appreciate it.

[Sheila]

Jackie and Susan

Glad this is behind both of you and you are both recovering....you are great role models for others going through this!!!
Thanks for Sharing!

[Jackie07]

[Just e-mailed an update to my family. Thought I would copy and share it here.]

哈囉 'Hello' [My 2nd Sister's nickname is 'Hello' - named by the daughter of my Oldest Sis 30 years ago. 2nd Sis already has had a hysterectomy about 10 years ago because of a symptomatic uterine fiboid. She's 7 years my senior. Oldest Sis is 14 years my senior.]

跟大家說我去開刀是對的回家以後嘴唇不再乾裂脫皮表示以前
Please tell everyone that I made a correct decision to have the prophylactic operation. Once I had got home, my lips were no longer peeling and dry - which means that I'd had
是有問題的因為過去半年體溫常過99 F(正常體溫是98.6 F.) 醫生
problems before the hysterectomy. The past half year, my temperature often was over 99 F. My doctors did not notice it
沒注意到因為我嘴乾進了診所就去飲水機喝水量到的體溫就偏
because I would be drinking water from the water fountain once I got to the clinic to quinch my thirst - thus the temperature measured was always 'below' normal.
低直到幾個月前我注意了沒去喝水才量到輕微發燒我才警覺到
Not till a couple of months ago when I quit drinking cold water after noticing the low themperature recorded, did they measure a low-grade fever and got me alarmed. Plus I was having irritation in the lower abdomen.
加上下腹始終不太對這兩天胃口好得多如廁也正常了有體力和傑克出去走二三十分鐘路
These past couple of days, I've got much better appetite and good bowel movement. And I was feeling good enough to go outside and walke with hubby for 20, 30 minutes each day.

祝

平安快樂

M&M
******************
http://www.genetichealth.com/CRC_HNPCC_Other_Cancers_in_HNPCC.shtml (http://www.genetichealth.com/CRC_HNPCC_Other_Cancers_in_HNPCC.shtml)


http://nyp.org/health/gyneonc-hnpcc.html (http://nyp.org/health/gyneonc-hnpcc.html)

Dear Sis,

When you get a chance, please send the above links to Little Bear [her son who is a young resident doctor in the Army in Taiwan] and see if he can explain it to you in details.

HNPCC is also called Lynch Syndrome. HNPCC stands for 'Hereditary Non-Polyposis Colorectal Cancer'. We need to find out if 2nd Brother's colon cancer is HNPCC. If so, then Oldest Sis might need to get a hysterectomy also. And be sure to get rid of the ovaries. The part that gets my attention is that it increases the chance of many cancers, including brain cancer - which is what I have (I still have three tumors in the center of my brain located in the right lateral ventricle) and lymphoma - which is what Mom was treated for 11 years ago.

In the booklet I received from Family Risk Assessment Program, it states that:

"...even if the mutations have not been confirmed in [our]family, [we] are still considered to be at high risk of developing ovarian cancer than women in general, just based on [our] family history. Researchers believe that there must be other inherited genetic mutations that can raise ovarian cancer risk. Perhaps one of these unknown mutations is responsible for the cancer in [our] family. (Ovarian cancer risk-reducing surgery: a decision-making resource p.7)

[suzan w]

Hi Jackie! (Kinda like hi-jack...naw!!) I am glad to see this thread pop up again as it shows how important it is not to get complacent with our treatment...that we all keep insisting on the tests we want, and the procedures that we feel are important for our continued health and survival!!!

[Soccermom]

Dear Jackie,
just logged back on after a long spell just in time to see you recovering! I am so happy that you have this behind you now and have reduced your risk of another cancer as much as possible.
I wish you a smooth and uneventful recovery!
Hugs,Marcia

[harrie]

Hi Jackie! I just noticed now that you had a oophorectomy. How are you doing now? Sounds like you had quite an ordeal! How long were you in the hospital?
I had a oophorectomy/laparoscopy done, although in my case they took out the ovaries and tube, left the uterus. My procedure was very fast and easy...outpt procedure. I don't recall any pain at all.
I hope you have recovered nicely.
Maryanne

[Jackie07]

Thanks, Maryanne. So good to hear from you. [Seems you've been gone for a while. How's going?]

I got rid of my uterus because of the 3 uterine fibroids. Though they were small, it did bother me a little. They were the results of three infertility treatments I had had in 1999. No baby, just fibroids. It turned out that my 2nd Sister who is 7 years my senior had already had a hysterectomy before then for a big uterine fibroid. Had she told me about her surgery, I probably would not have tried to get pregnant... She came to Texas in 2007 and took care of me for almost 2 months. [And here I am trying to blame her for my breast cancer - that's how spoiled I am... :)]

It has to be a cultural deal. Orientals are just so private about personal matters - especially the 'bad' news... The news of my second Brother's colon cancer surgery was also shielded from me. When I typed in all the three cancers (Mother has had non-Hodgkins Lymphoma treatment 11 years ago) - I found the term HNPCC (Hereditory Nonpolyposis Colon Cancer) and confirmed my fear that there's increased risk of many other cancers including cancer in the ovary and uterus...

I'm really glad that the information provided by our members (including yours)has drawn my attention. My family doctor wasn't too happy about it because I had asked for too many referrals. As a matter of fact, we are going to switch our primary doctor soon.

Thanks for checking on me. I'm pretty much back to normal now. Will see my oncologist next week about my neck and then see my surgeon on March 1 for 6 weeks post-op.

ps. The surgery was scheduled at 12:30 pm and I was out in the recovery 'ward' by 3 pm. I stayed overnight and left the hospital around 11:30 am the next day.