My daughter, age 40 , was diagnosed with Stage1-c Ovarian cancer 10 days ago. It was confined to one ovary , measured 5 inches across and had not been palpable on vaginal exam as the ovary had shifted to a " weird" midline position ( according to the OB/GYN ). It ruptured as the surgeon was removing it , however, he did not do cytology after the abdominal washing . He did biopsy multiple sites pre- removal, did a complete hysterectomy and also removed the omentum . The cell type and grade could not be determined at the local lab so the slides were sent to Johns Hopkins . It has been , as I said, 10 days and still no results . My daughter is a pillar of strength and courage ...she has 2 little ones ,aged 3 and 7 ... but, the reality of the potential seriousness of this diagnosis is starting to hit her head- on . Why on earth is it taking so long ... any thoughts ?
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Stage 1-c but no grade
- By KELLSMOM
- Posted October 4, 2009 at 12:36 pm · 21 replies
- In Newly diagnosed
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- By Plonanon
- Posted October 4, 2009 at 12:48 pm
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I think that even if you do the pathology locally, it takes some time for results. Don't quote me on this, but I vaguely remember a discussion with a pathologist who told me that they use some substance on the tumor samples that needs to set, so the results do take some time. I was diagnosed 7 years ago so I don't remember exactly how long it took to get the final pathology information, but I believe it was a week or ten days.
Others here will surely pitch in.
If it is stage IC, that is a lot better than a lot of other possibilities.
Best of luck to you and your daughter.
- By lifeisgrand
- Posted October 4, 2009 at 2:17 pm
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Thank your lucky stars they sent it off. It may take a little while to get the results back but Johns Hopkins has the expertise to make the right diagnosis. Where was her surgery done and did she have a gyn/oncologist? Do come back and let us know how it turned out. Will keep my fingers crossed she gets good news.
- By tex2step
- Posted October 4, 2009 at 4:07 pm
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It is not at all unusual to have a cancer center pathologist look at the slides and help to determine type of cells. My doctor sent mine off and I believe that it took just over two weeks for my doctor to confirm by phone and another 10 days before I received confirmation in writing when requested.
I was told immediately after surgery that it was III-C Primary Peritoneal Cancer, but the slides and second set of eyes confirmed my epithelial serous carcinoma.
Best Wishes to you and your daughter.
- By Rikku
- Posted October 4, 2009 at 7:07 pm
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Maybe it's borderline. If they don't have the pathology yet how do you know it's cancer? and borderline has a far better prognosis. She won't even need chemo.
Good luck, Ic is great.
- By PeacefulZen
- Posted October 5, 2009 at 2:16 am
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My ovarian cancer is also 1C. The type couldn't be determined and was sent off. It did take a couple of weeks. It ended up being two different types...one of which is more common in colon cancer.
It is good she had the surgery and debulking and the removal of her omentum...my doctor did the same. I have had friends who didn't and then later the cancer returned there and then it couldn't be removed.
I am assuming your daughter will have chemo. Make sure she talks to her doctor about the various side effects. There are nausea and pain medications that help with most side effects that really help get through it. With little kids she will need help. I know even though I continued working I had to take 3-5 days off after chemo during the hardest days. Also, check with the insurance company prior to chemo to make sure they will give the amount of pills the doctor prescribes. My insurance company would only give me 9 pills instead of 21. 21 is enough for a week. Finally after 4 treatments the doctor was able to convince them I had to have them. You won't want to have to worry about that when she is tired and feeling bad from the Chemo.
Hair grows back! It's fun to put on fairy tattoos on your bald head and let your kids admire them. Get wigs to match hair prior to losing it. Try to keep to normal routine as much as possible, even if it takes longer to allow for rest periods. I kept playing tennis, poorly, would sit out much of my clinic, but kept going except for my chemo week.
Constipation with chemo is a real pain in the butt! Pun intended! I found Monavie the acaii berry drink gave me energy and also helped with the constipation. Expensive but it helped.
Stay positive! I had 6 chemo's and you just have to get through it and you do. Good luck and God bless.
- By verlinda
- Posted October 5, 2009 at 10:11 am
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I had my pathology report back in five days, but two months past chemo had to have a partial thyroidectomy. All the doctors were fairly certain all along that it was nonmalignant, biopsies and x-rays showed the same, but no one wanted to risk being wrong. I was fortunate and got those results quickly, too, but the otolaryngoligist had warned me that if anything looked wrong, it could take up to a month to get results.
If results are "iffy," the slides may travel around the country. As someone else said, thank goodness her omentum was removed; my gyn oncologist said cancer cells like to hide out there then spread everywhere.
My tumor was softball-sized. Prior to surgery everyone thought it was the right ovary (I think.) The tumor was on a stalk, which had managed to twist to the opposite side of my abdomen, so figuring out what is where prior to surgery can be really tricky.
The wait is really, really hard. Please come here any time. We're here for you and your daughter. Let us know if she needs chemo, and what drugs they decide to use.
Frankly, with the tumor rupturing, if one oncologist decides against chemo, I'd seek a second opinion at a separate facility just to be sure.
- By Laniphil54
- Posted October 5, 2009 at 7:57 pm
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I was operated on at Hopkins. The pathology is reviewed by a tumor board on Fridays. Mine took up to 14 days or more I was a wreck by the time I got the results that I was 1A and did not have to have chemo, radiation or anything. I was very strong and at the same time very anxious to get the results. You might want to get her a meditation cd or she could call someone from Life With Cancer, the Ovarian Cancer Hope Line just to talk about it.
"Hope Line" for Ovarian Cancer: 877-OV-HOPE-1 . She can email me if she wants and we can talk. My personal email is laniphil54@gmail.com. Take care and tell her to keep a positive attitude to kick it!! Lots of hugs and love, Lani
- By KELLSMOM
- Posted October 6, 2009 at 9:28 am
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Thank you ALL for the kind, informative and genuinely caring responses ! Truly, they brought tears to my eyes as I have felt SOO lost and helpless in the past few days . However, the OB/ GYN who did the surgery called with the results last evening.
Kell has Stage 1-c Serous with serial Mucinosis, low grade Ovarian Cancer . Apparently, this will require chemo assumedly because the very large tumor ruptured as the surgeon removed it , or , is it due to being serous and mucinoid in cell type ? The mucinosis part is very confusing to me and do I understand correctly that the serous types are often platinum resistant ?
What's weird is that I have a Master's degree in nursing and my job ( pre- retirement 10 years ago ) was that of an Oncology nurse . Nursing and motherhood are a bad combo ... I know just enough to scare the living bejeesus out of myself but, emotionally, I am bound by the incredible intensity of a mother's love . I don't think you can be a nurse and a mother simultaneously but my " expertise " ( if any ) may help me advocate for her and explain what is happening :)
I did feel ever sooo relieved that this is a low grade, low stage Cancer and am very grateful for that ! We will see the GYN oncologist on the 12th and I'll let you know what she says . Should we be concerned that none of the peri-aortic lymph nodes was biopsied ?Sorry ... have read in many places that staging is SO crucial and that , oftentimes, low stage Cancers are, in fact , higher when a second look surgery is done .
Finally , thank you again for being here ... like angels in cyberspace :) All my best to each and every one of you in your journeys with this disease .. may we all find peace along the way !! XOX, Lyndon
- By Plonanon
- Posted October 6, 2009 at 10:20 am
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KELLSMOM, I want to reply to two of your questions.
Normally only stage Ia or Ib, grade 0 or grade 1 tumors do not require chemo. Once you are at stage Ic, I think chemo is fairly standard.
Your question about the para-aortic lymph nodes is an excellent one. Correct staging is CRUCIAL, and the para-aortic lymph nodes can harbor microscopic disease which, if it were found, would cause "upstaging."
How do I know this? Because I was stage Ia, grade 1 (diagnosed 7 years ago, considered "surgically cured"), and I recently had a scare. I looked at my pathology report, where I discovered that there had been pelvic lymph node sampling but no para-aortic lymph node sampling, and I found quite a few articles on this topic.
I think this is something you need to discuss with a gynecologic oncologist, and perhaps with two gynecologic oncologists. If you would like me to e-mail you some of the articles I found about para-aortic lymph node sampling, please let me know where to send them.
I hope the stage IC, grade 1 is correct. That should give your daughter an excellent chance of being healthy.
- By Shamrock2009
- Posted October 6, 2009 at 12:09 pm
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Hi Lyndon,
Usually a Ic diagnosis means chemotherapy treatment after surgery. Make sure your daughter is seen by a GYN Oncologist or a medical oncologist who specializes in GYN cancers. And as Plonanon said it is a good idea to have 2 opinions.
As far as your question regarding platinum resistance in mucinous cell type I believe it is higher and also for recurrent low-grade serous ovarian cancer. if these mixed cell types- mucinous and serous--along low grade have a significant resistance to first-line chemotherapy that would be a question for the oncologist
I am also an oncology nurse and it is good you can be an advocate for her as I have been for myself.
I found this information and think it is about the best on the internet regarding descriptions of cell types.
OvCa Cell Types:
Ovarian cancer is not a single disease. There are actually more than 30 types and subtypes of ovarian malignancies, each with its own histopathologic (diseased tissue) appearance and biologic behavior. Because of this, most experts group ovarian cancers within three major categories, according to the kind of cells from which they were formed:
1. epithelial tumors arise from cells that line or cover the ovaries;
2. germ cell tumors originate from cells that are destined to form eggs within the ovaries; and
3. sex cord-stromal cell tumors begin in the connective cells that hold the ovaries together and produce female hormones.
In addition, some tumors that are adjacent to ovarian tissues may be viewed as ovarian cancer. For example, extraovarian peritoneal carcinoma (intraperitoneal carcinomatosis)—cancer of the membrane lining the walls of the pelvic cavity next to the ovaries—is a tumor that is thought of and treated as if it were advanced ovarian cancer. The prognosis, or probable outcome of the disease, in patients with this condition is not very different from that in women with advanced ovarian carcinoma.
Common Epithelial Tumors
Common epithelial tumors begin in the surface epithelium of the ovaries and account for about 90% of all ovarian cancers. They are divided into a number of subtypes—including serous, endometrioid, mucinous, and clear cell tumors—that can be further classified as benign (noncancerous) or malignant (cancerous) tumors.
* Serous tumors are the most widespread forms of ovarian cancer. They account for 40% of common epithelial tumors. About 50% of these tumors are malignant, 33% are benign, and 17% are of borderline malignancy. Serous tumors occur most often in women who are between 40 and 60 years of age.
* Endometrioid tumors represent approximately 20% of common epithelial tumors. In about 20% of individuals, these cancers are associated with endometrial carcinoma (cancer of the womb lining). In 5% of cases, they also are linked with endometriosis, an abnormal occurrence of endometrium (womb lining tissue) within the pelvic cavity. The majority (about 80%) of these tumors are malignant, and the remainder (roughly 20%) usually are of borderline malignancy. Endometrioid tumors occur primarily in women who are between 50 and 70 years of age.
* Mucinous tumors make up about 1% of all common epithelial tumors. Most (approximately 80%) of these tumors are benign, 15% are of borderline malignancy, and only 5% are malignant. Mucinous tumors appear most often in women between 30 to 50 years of age.
* Clear cell tumors account for about 6% of common epithelial tumors. Nearly all of these tumors are malignant. Approximately one-half of all clear cell tumors are associated with endometriosis. Most patients with clear cell tumors are between 40 and 80 years of age.
Rare Tumors
In addition to the above, rare tumor types such as Brenner tumors, undifferentiated tumors, and transitional cell tumors also are seen.
* Brenner tumors, which comprise roughly 2% to 5% of epithelial tumors, are largely noncancerous tumors.
* Undifferentiated tumors are epithelial tumors with "primitive," unspecialized characteristics. The cells in such tumors are difficult to identify microscopically. Roughly 15% of all common epithelial tumors are undifferentiated tumors. Undifferentiated carcinomas are high-grade, solid tumors (see also Tumor Grade).
* Transitional cell tumors are generally high-grade (poorly differentiated, more malignant) tumors. Tumors that have primarily a transitional cell carcinoma pattern may have a better response to traditional chemotherapy than papillary serous carcinomas.
* Borderline ovarian tumors occur in 10% to 15% of cases. They have a low potential for malignancy, although they may be composed of a serous, endometrioid, mucinous, or clear cells. Borderline tumors generally arise on the ovarian surface and do not invade the ovary itself. For this reason, borderline tumors often have a better outcome than invasive ovarian tumors.
Endometrioid, clear-cell, and mucinous tumors often are low-stage lesions, whereas serous, transitional, and undifferentiated tumors tend to be high-stage lesions (see also Ovarian Cancer Staging).
Germ Cell Tumors
Germ cell tumors are formed from egg-making cells within the ovaries. They represent approximately 3% of all ovarian cancers in Western countries. Germ cell tumors tend to occur in young women, with a peak incidence among individuals who are in their early 20s. Like testicular cancer, these tumors usually are very curable. In addition, they are associated with specific markers (proteins) that are released into the blood, such as beta-human chorionic gonadotropin (ß-HCG) and alpha fetoprotein (AFP). After germ cell tumors have been treated, the physician may conduct blood tests for ß-HCG and/or AFP, to determine whether the cancer is recurring (returning) (see also Treatment of Ovarian Cancer).
Unlike patients with common epithelial tumors, 75% of whom are Stage 3 or 4 at diagnosis, between 60% and 70% of patients with germ cell tumors are Stage 1; most remaining patients are Stage 3 (Stages 2 and 4 are relatively rare for this tumor type)
Germ cell tumors are divided into dysgerminomas and nondysgerminomatous types.
* Dysgerminoma is the most common germ cell tumor, representing nearly one-half of all cases. This tumor has been likened to the male testicular cancer known as seminoma. A vast majority (some 80%) of dysgerminomas affect women younger than 30, and roughly 20% of such tumors are diagnosed during pregnancy.
* Nondysgerminomatous tumors are less common than dysgerminomas. Tumors in this category include embryonal carcinoma, a very malignant, primitive form of carcinoma; immature teratoma, a tumor made up of different tissues that are not normally found in the ovary; choriocarcinoma, malignant tumor of the placental epithelium; polyembryoma, a tumor formed from embryonic cells; and mixed germ cell tumors, tumors containing a variety of cell types.
Sex Cord-Stromal Tumors
Sex cord-stromal tumors represent about 5% of all ovarian cancers. They are formed from cells of the sex cord or mesenchyme (early connective tissue) within the embryonic gonad, and they may contain gonad-related cells (e.g., granulosa cells, Sertoli cells, thecal cells) as well as fibroblasts, which are immature, connective tissue-forming cells. The most common tumors in this category are granulosa stromal cell tumors and Sertoli- or Sertoli-Leydig cell tumors; other related tumors include lipid cell tumors and gynandroblastomas.
Granulosa stromal cell tumor is the most prevalent tumor in this category. It is more common in postmenopausal women, and it may produce symptoms such as vaginal bleeding and an elevated blood level of the tumor marker inhibin, a peptide hormone that prevents the release of follicle stimulating hormone (FSH). Perhaps because of this, individuals who have granulosa cell tumors often are diagnosed at an early stage (see also Ovarian Cancer Staging).
Sertoli and Sertoli-Leydig cell tumors are very rare. Most patients with these tumors are young; the average age is 25 years, with only 10% of individuals being over age 50. Pure Sertoli cell tumors and pure Leydig cell tumors are benign; however, their malignant potential is determined by their grade (see also Tumor Grade). Well-differentiated Sertoli-Leydig tumors usually behave in a benign manner, whereas poorly differentiated tumors tend to be malignant.
In general, sex cord-stromal tumors are associated with hormonal effects such as virilization, the development of male secondary sex characteristics (e.g., a low voice, facial hair); precocious puberty, early sexual maturity; amenorrhea, absence/stopping of the menstrual period; or postmenopausal bleeding.
Source: http://74.125.113.132/search?q=cache:Tw7q01Bc8yMJ:www.oncologychannel.com/o variancancer/types.shtml+ovarian+cancer+cell+types&cd=1&hl=en&ct=clnk&gl=us &client=firefox-a
This source has info regarding staging and grading at Johns Hopkins:
http://www.ovariancancer.jhmi.edu/prognosis.cfm
- By 99to1
- Posted October 6, 2009 at 1:07 pm
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I was diagnosed with a very similar type of tumor at 34--I don't have my exact results memorized but I do know I had an epithelial mucinous tumor--"the best kind" to have as my doctor put it!
I had chemo after surgery. It was easier and harder than expected. There are lots of different drugs to combat side effects now--make sure to ask for different combos if one isn't working (didn't find that out until treatment 2 :( ) Also--some drugs like Zofran (for nausea) are CRAZY expensive--but your doctors office can sometimes hook you up with samples.
I usually felt really crappy for a couple days after chemo and then would start to rebound. I'd be feeling fine just in time for the next round! You do get more and more tired as the treatments come.
Also--don't get suckered into buying an expensive chemo wig--they look good but they are super hot and uncomfortable. My favorite wigs ended up being cheap colorful ones I bought at a costume shop.
It sounds like you will be a tremendous support to your daughter and as a nurse you know that the patient has to really be their own advocate to get what the want and need. Keep notes. It helps to remember what isn't going well and what is.
The good news is I'm 4 years cancer free---feeling great and so glad it was caught early.
Best of luck to your daughter and stay strong.
- By God_Is_Faithful
- Posted October 6, 2009 at 7:36 pm
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mine took about 3-4 weeks before i got the pathologist report. my surgery was done at University of Maryland. it was frustrating to wait, but i see it as it gave me more time to pray. Mine was only confined to one ovary.
- By lifeisgrand
- Posted October 6, 2009 at 9:17 pm
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At least you know what you're dealing with now. And yes chemo is recommended because of the rupture into the abdominal cavity. Serous is the most common type of ovarian cancer and originates in the fallopian tubes. I am not sure what they mean by serial mucinosis. There is a mucinous cell type but I am not sure that is the same thing as mucinosis. From what I've read, at the low-grade end they do well. If you need a good reference guide on ovarian cancer search here for my post titled Ovarian Cancer Primer. It has been my bible for all things related to this disease. I got a used copy on Amazon for $2. Tell your daughter not to fear the chemo. It is not as bad as you think it will be. At stage 1C she has her whole lifetime to look forward to. She's one of the "lucky ones". Praise the Lord :) God bless and don't worry... it will be fine.
P.S. I got a chuckle out of your comment about nursing and mothering at the same time. It made me recall the time when I had my toddler in the ER for sutures and the doctor looked at me and said you need to leave the room and I told him, no it was okay. Then he said it wasn't a request... one patient at a time is all I can handle... LOL... he was sure I was about to pass out from the color in my face. He was right, it was better I didn't witness them sewing my baby back together. You will be fine too. I know you want to take this on for her but she will be okay. Just make sure she continues her follow-up.
- By KELLSMOM
- Posted October 8, 2009 at 7:08 am
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You all are amazing ! Thanks for the prompt, detailed and loving replies ! I never could have or would have imagined how heart wrenching this diagnosis would be . Typically the kind ,tenderhearted type ... the last week has found me flying off the handle emotionally ... snapping quickly at people , crying at the drop of a hat , journalling so frenetically it seems as if the pen is possessed ; LOL ~ a quagmire of emotions !!
I quite simply hate the diagnosis but KNOW I should be so, so grateful for the low grade, low stage . I have never seen myself so labile and have honestly never felt such gripping fear in all of my life . I feel so much better to be with her, to see how incredibly strong and optimistic she is ... But, when I hear her talk of alternatives to doing chemo, even though I am a proponent of alternative modalities and did my Masters on Psychoneuroimmunology ( the mind-body effect )... it just scares me to death !
She called the other night and told me that she'd read a survey of Oncology docs who, when asked whether they would, themselves , take chemo responded ( 98%) ...NO ! I could only tell her that I understood that BUT , I bet that were they ever faced with such a decision in reality , they would do it anyway !
It's interesting , to say the least , to see all the stages of grief playing out in ALL of our lives .... denial, anger, bargaining, fear , depression , acceptance~ Since we are all dancing in and around the different feelings with varied intensity and at varied times , this family is an emotion fest !! We each , in our own way , are seeking to assure ourselves that Kell will be okay .. I keep repeating over and over , " Replace fear with faith .... "
Ah, well , today we will have a girl's day ~ just Kell and me. We'll do oatmeal facials and put sliced cucumbers all over our faces , do each other's nails and maybe do a mayonnaise treatment on our hair. Then,we'll snuggle up and watch "August Rush" . I do believe that we need to savor the little things for , one day we will certainly realize that THEY were the big things !
Monday , we will see the oncologist and have a long list of questions . Thank you , dear friends ... you are true heros and angels . Thanks for listening to me rant and helping me stay focused . Blessings and hugs to you ALL :)
- By Plonanon
- Posted October 8, 2009 at 7:34 am
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That poll of oncologists sounds a little hard to believe, but even if it is true, it isn't really relevant.
Best of luck to you both.
- By lifeisgrand
- Posted October 8, 2009 at 12:34 pm
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I agree with Plonanaon... if Oncologists didn't believe in the medicine they treat patients with then why are they in that business. I won't say stay off the internet because it really ticked me off when people said that to me but I will warn you to not take everything in context. Be able to weed out the good information and let go of the bad. Use reliable reference sites like National Cancer Institute, Johns Hopkins, etc. Even on this site, just because we are touched by this cancer does not mean we always know what we're talking about. You need just the right amount of good information to make informed and knowledable decisions on your care at the time you need it. Don't look to far into the future and don't dwell on statistics. That's all they are... a picture of what has happened in the past. Some statistics are important and will guide our care and help us make decisions. In the end our outcomes are what they are, good or bad and you move on. There are no guarantees, only hopes. We are each unique and the outcomes will vary for all of us.
- By cdbart
- Posted October 8, 2009 at 2:39 pm
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I am 1 A. only difference is the tumor was much larger but it did not rupture. I was not grade because the stained cell came back with a rare cells(Brenner Tumor They don't grade those because they don't know enough about them)
I had several opinions because the frozen cell showed nothing. One of the opinions was from Mass Gereral and the other was U of Colorado where I had surgery. I figured that since the tumor had not ruptured they got it all. Everyone els agreed that they got it all but that I should have six carbo/taxo treatments as a preventive because they had not done any node biopsies during surgery because at that point there was not cancer but since they found cells that could not be graded chemo was recommended.
I fought hard to make the decision chemo/no chemo. My other option was to have periodic PET scans (My first was clear) and wait and see. WHen I got the third opinion from my internest who taught at John Hopkins and had ask his oncologist friends and they also recommended six treatments of chemo, I gave in and did the chemo. I figured I was stubborn but not stupid. Three top notch Universities told me they recommended chemo.
Chemo was not easy and your daughter will have to accept some help if she decides to go that route. She will have some good days and some bad days. We all react differently. If she chooses chemo, she should work closely with her ocnologist and keep a journal so the doctor can see the effects. By the time you see the doctor you sometime forget the bad parts sorta like child birth. However, I discovered that when squeak loud enough the doctor can do something to help. I have a really high pain tolerence and for a while,I just put up with it . My chemo treatments also got better as the number increased. Different than what I had been told would happen. I just finished my sixth treatment two weeks ago and I am not walking 1 1/2 to 2 miles a day. Had a bad nausia day yesterday but it is gone today and I expect each day to get better since I will not have to be zapped next week so my body can regenerate even more. I am leaving on the 20 of Oct. for 17 days in SOuth Africa. If your daughter wants to talk give her my e-mail.
cdbart@comcast. Believe me when I say, I know what she is going through. I was in tears through out the whole first session because I still was fighting my own decision. I was taking a perfectly healthy body and allowing them to dump poison into to it because maybe there were some rouge cells. Knowing that the treatment was going to make me feel really bad. Today I am glad I made the decision. I want to give my Grandsons the opportunity to know "Grams" for a long time.
- By keigan
- Posted October 9, 2009 at 6:06 pm
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i too was recently diagnosed as 1c, awaited 10+ days for final pathology report and staging to find better results than i thought. went for a second opinion sent the slides and got a second pathology and staging and opinion, that also was 10+ days. the wait is difficult but worth the thorough effort. best of luck.
- By Aquamay
- Posted November 2, 2009 at 6:19 pm
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Hello and hugs from a fellow RN,
I wanted to share this info with you and pray your daughter will live well and long:
I was diagnosed with CCC Stage 1A during the emergency delivery of my twin girls, now 8 months old. During my pregnancy a long standing (from age 21 or so) right ovarian cyst became very large and grew to over 6 cm, and was removed at C section. As my OB said at the time: 'it looks very funny - lets get it out if OK with you'. I agreed and she removed it as well as my uterus (bogginess and also had HELLP syndrome, could it get worse?) The path report came back while I was still in hospital - 5 days later preliminary - so, long story short, 4 weeks post delivery I underwent 6 rounds of carbol/taxol (had to stop after the 1st due to side effects like signif. periph. neuropathy) and ended just with carbol (also tried doxy - yuck - and taxet. too).
Was I happy getting chemo - hell no! It stunk, I would endure 20 surgeries to avoid the lousy chemo. But I survived, lost all my hair - every hair on my body 10 days post chemo #1. 6 weeks ago I had prophyl. surgery and had the other ovary, ometum and lymphs removed - all came back NEGATIVE (CT scans, CA125s, etc). Would I change things now knowing what I know? No. Life is too precious, more so than ever now for my girls and family. I did what was suggested for me, and I can tell you: Johns Hopkins is one of The Best. I was treated in NYC at MSKCC (I live here and love them, they saved me/us!) Good luck to your daughter and her babies and all of you - tell her to do what she feels is right, and get at least another opinion - but don't do nothing because you are afraid of the unknown. Live Well And Long From A Fellow Warrior.
- By Diana1
- Posted November 3, 2009 at 9:23 am
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This is my first posting in, oh, more than two years, but Kellsmom, and her fears and her bravery brought me back. I was a 1-C, too, epithileal, but never knew the grade. I'll have to ask. Yes, still going for 3-4 month check-ups!
I just want to tell your daughter, Kellsmom, that alternative therapies are nice, if complimented with chemo. I was afraid of chemo, too. In fact, I had to take psychological counseling just to make myself have it. I read everything on the suggested regimen, everything. There are so many "horror" stories on the web. That just fueled my fears. I even asked my oncologist how long I would have if I didn't have chemo. His response: "Not long at all because I will personally kill you. You have a chance. 80% of the women in that waiting room don't." That did it. I realized how fortunate I was, and went for the chemo.
I did have a systemic reaction to the taxol. The decision was made to go just with the carbo. The point is, they can adjust, they can stop a drip the moment they sense something is wrong. You have a chemo nurse sitting with you the first 10 or so minutes (when reactions may happen), and they know what they are doing. You are in good hands.
After that, carbo was a breeze. Or maybe it's like childbirth -- maybe you just "forget" the side effects. I did. There are medications that help with nausea (and they work), with constipation, and, yes, with nerves. I was a complete ninny. Used to stay in bed for a week after each treatment. Then I looked around, women were going shopping after treatment, dashing to their exercise classes, going to lunch. What was I doing?? Operating from fear. I think that's the biggest hurdle she has to get over.
I am now 5 years "out," and I thank the good Lord that I listened to my doctors.
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