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New member introduction

lizerpup
Posts: 5
Joined: May 2010

Greeting all

This is my first post but I have been here almost every day reading the board since February 2010. I find this to be the most caring and informative board I have visited. In February, I had surgery for ovarian cancer. I have serous papillary ovarian adenocarcinoma stage 3c. I thought I was handling everything well by myself with only the support of my family but I find I am in need of friends that have a better understanding of what I am going through.

Today I am a quite stressed. I had my third chemo treatment of Carboplatin and Taxol. I was told that my white blood cells were low so I have to go in tomorrow to get a shot. What is stressing me is I was told the results of the biopsy that was done on my breast last week. The results were I have invasive ductal adenocarcinoma in my right breast, which is nottingham histologic grade of 2. I will meet the breast surgeon on the 25th but I am told surgery cannot take place until after the ovarian cancer chemo because of the concern of free radical cancer cells caused by ovarian cancer. The knowledge of have two separate primary cancers is a bit overwhelming.

I just wanted to introduce myself and hope to be welcomed into the group.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Hello Lizerpup,

Sure sounds stressful indeed. The low white cell count is pretty common with the carbo/taxol regimen. My cancer center prescribes Neulasta injection as a standard part of the the carbo/taxol regimen. I didn't have too bad of a response from the neulasta but I know some of the ladies hate it.

Do you know if the current chemo will help shrink the breast ca?

I too have serous papillary ovca, stage IV.

GOOD LUCK!!! Let us know how you make out.

lizerpup
Posts: 5
Joined: May 2010

Nancy591

Yes I was told that the taxol was used for breast cancer and it might shrink it but I would still need surgery. And you were right I was given a shot of neulasta today. I was told it might cause joint pain for about three days but so far, I feel fine. Hope I can say the same thing tomorrow. Thank you for the welcome and it is nice meeting you.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Liz...welcome, indeed, but we are sooooooo sorry you qualify for membership in this "club". Breast and Ovarian cancers are often linked to a BRCA gene mutation. Have you had the genetic testing done? If you have children, it can be an important diagnostic tool for their future well-being.

I have the same type and stage OVCA that you have. Most of us are diagnosed at IIIc - the lucky ones catch theirs earlier, but many (like myself) did not have symptoms until just before we were diagnosed.

I have completed 6 sessions of Carbo/Taxol and am now 2 months into a year of maintenance chemo (Taxol only). My white cell count went quite low during my initial treatment, but I never had to have the shots. Instead, I had to have shots for my low red cells, as well as several blood transfusions. We all react a bit differently to our poison cocktails.

There are a couple of other ladies who hang out here who have experienced the same double whammy - breast and OVCA. I can understand how overwhelmed you must feel. But our motto here is "never give up". If you have read the profile stories of some of our veteran members, you know that we are a tough bunch. Those Steel Magnolia women ain't got nothin' on us!

Carlene

lizerpup
Posts: 5
Joined: May 2010

Hissy_Fitz

I have not had the genetic testing done. The doctor that did the biopsy suggested that I have it done yet the doctor for my chemo suggested that I do not have it done because of the uncertainty of how insurance companies may use the information. So I decided not to have it done but I have informed my daughter, who is grown with a child of her own, so she can decide if she wants to have the genetic testing done. Thank you for the welcome and words of encouragement.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Talk to a genetic counselor. They are much more knowledgeable regarding laws and genetic testing issues. There are federal laws that prevent any insurance company from using genetic testing results against you, and many states have similar laws, as well.

If you have the testing done and you are positive, then all other members of your family need only have single strand analysis - which is much, much cheaper.

Because you have cancer, chances are your insurance will pay all (or at least most) of the cost, whereas your daughter's carrier probably won't. Mine was covered 100% by Medicare.

Carlene

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

This is a really good place to come and chat to other ladies in similar circumstances as yourself. The advice that comes from these boards are so helpful. I'm sorry that you have this second cancer looming. I have Primary Peritoneal Cancer which is from the same tissue as OVCA so that is why I come on these boards. However I was tested positive for BRAC 2 and am waiting to go to the breast institute for a consultation.

You mentioned Nottingham? Is that where you are from?

I know you are going through a difficult time, just hang on in there, your doctor will do everything he/she can for you.

Take care and keep posting. Tina xx

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

I received this yesterday from OncologyStat, and thought some of you may find this valuable as it shows how very different BRACA-positive OVC is to other types of ovarian cancer (called EOC here), and because it suggests additional effective treatments for BRACA ovarian cancers;.... although hard to understand with all the medical jargon:

Increased Incidence of Visceral Metastases in Scottish Patients With BRCA1/2-Defective Ovarian Cancer: An Extension of the Ovarian BRCAness Phenotype
J Clin Oncol. 2010 Apr 20;[Epub Ahead of Print], C Gourley, CO Michie, P Roxburgh, TA Yap, S Harden, J Paul, K Ragupathy, R Todd, R Petty, N Reed, RL Hayward, P Mitchell, T Rye, JH Schellens, J Lubinski, J Carmichael, SB Kaye, M Mackean, M Ferguson

TAKE-HOME MESSAGE
In this retrospective analysis, BRCA1/2 mutation carriers with relapsed ovarian cancer were far more likely to have visceral metastases than were those with sporadic tumors, suggesting distinct tumor biology and the need for BRCA testing in patients with ovarian cancer who develop visceral metastases.

STUDY IN CONTEXT
Compared with patients who have sporadically occurring endothelial ovarian cancer (EOC), those who are BRCA1 or BRCA2 mutation carriers tend to be younger at diagnosis, have a history of previous cancer (especially breast), and have a family history of breast and ovarian cancer. Their tumors are also more likely to be histologically serous and highly platinum sensitive. Early studies suggest that BRCA1/2 mutation positivity also indicates the potential for response to therapy with the poly(ADP-ribose) polymerase (PARP) inhibitor olaparib.

Metastases outside the peritoneum, extending to viscera, are uncommon in patients with EOC. However, Scottish investigators discovered a positive association between hereditary BRCA1/2 mutations and visceral metastasis while evaluating patients for inclusion in phase I trials of olaparib. To determine whether this was a chance finding, Gourley et al conducted a case-control analysis, comparing the incidence of visceral metastases in BRCA1/2 mutation carriers who had relapsed disease with that in noncarrier matched controls. The results were then validated in a second group of patients who were enrolled in the phase I olaparib study.
The investigators identified all patients who were BRCA1/2 mutation carriers and diagnosed with EOC or primary peritoneal cancer (PPC) before May 2008. The Edinburgh Ovarian Cancer Database was used to identify matched controls with nonhereditary EOC. Clinical notes were reviewed. In total, 79 patients with EOC or PPC and BRCA1/2 mutations were identified. After exclusion of patients with insufficient data, carcinosarcomatous histology, absent BRCA1/2 testing results, previous breast cancer, or disease in remission, 19 patients remained and were matched to controls. All patients had received previous platinum-based therapy.
Of the 19 BRCA1/2 mutation-positive patients, 14 (74%) had presented with visceral metastases, compared with only 6 of 38 patients (16%) in the BRCA1/2 mutation-negative control group. Sites of visceral metastases included liver (53% vs 5%), lung (32% vs 3%), and spleen (32% vs 5%).

Additional analysis was performed after excluding patients who had metastatic events occurring after the minimum follow-up period. Visceral dissemination appeared to be a later event in the control group, as most of the cases were excluded after this correction was made. Visceral metastases were reported in 11 patients (58%) among the BRCA1/2 mutation carriers, compared with only 2 patients (5%) in the nonhereditary control group (odds ratio [OR], 21.00; 95% CI, 2.64-166.80; P < .001). The viscera was the first site of progression in 47% vs 5% of patients, respectively (OR, 9.00; 95% CI, 1.94-41.65; P = .005). In a competing risks model, the 24-month cumulative incidence of visceral metastases after first progression was 68.4% vs 16.8%, respectively. The incidence of visceral metastases at any time was higher in patients with mutations in BRCA1 (92%) than in those with mutations in BRCA2 (43%). Survival after first progression was similar in BRCA mutation carriers and noncarriers (P = .498).

The validation study included 24 eligible BRCA1/2 mutation-carrying patients, each with 2 noncarrier matched controls (except for 3 patients with 1 each matched control). In this analysis, 63% vs 11% of patients, respectively, developed visceral metastases (OR, 25.00; 95% CI, 3.04-205.80; P < .001). In the 2 groups, hepatic, pulmonary, and splenic metastases occurred in 46% vs 4%, 13% vs 2%, and 17% vs 2% of patients, respectively.

In this study, patients harboring a BRCA1/2 mutation who had a relapse of ovarian cancer had a significantly higher chance of developing metastases to visceral sites than did those with nonhereditary disease. This was especially evident among patients with BRCA1 mutations. The results suggest not only that defective BRCA1/2 is associated with increased risk of distant metastases from ovarian cancer, but also that BRCA1/2-related EOC represents a disease entity with distinct biology from that of sporadic EOC. BRCA1/2 genetic testing should be carried out in patients who develop visceral metastases to determine whether platinum-based therapy, or perhaps inclusion in trials of olaparib, would be suitable.

Conclusion:
Although sporadic EOC commonly remains confined to the peritoneum, BRCA1/2-deficient ovarian cancer frequently metastasizes to viscera. These data extend the ovarian BRCAness phenotype, imply BRCA1/2-deficient ovarian cancer is biologically distinct, and suggest that patients with visceral metastases should be considered for BRCA1/2 sequencing.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Thank-you for your research. It is really wordy and complex, but I think the positive message I have read is that if you have a BRCA gene mutation your body is more likely to respond to the platinum chemo regimes? Therefore the chemo is more effective at attacking the cancer cells.

I would appreciate anyone elses' take on this.

lizerpup
Posts: 5
Joined: May 2010

Tina

I am from the United States. The pathologist used the nottingham histological grading system to grade the breast biopsy. There are three possible grades. Low grade(1), intermediate grade(2), and high grad(3). I was grade 2. I guess staging is done at the time of surgery. Let us know the outcome of the consultation. It is nice meeting you and thank you for the warm welcome.

cancer survivor x 4's picture
cancer survivor x 4
Posts: 183
Joined: Sep 2009

Good Morning Lizerpup,
I find myself having to have this discussion quite a bit lately. I had breast cancer 3 times before I had ovarian cancer. To the best of my knowledge, you can not get breast cancer from ovarian cancer, but you can get ovarian cancer from breast cancer. I know, it does not make any sense. I have had 4 different primaries. You probably have 2 different primaries. I have had 3 partials done on my breasts. 2 on the left and 1 on the right. When I had surgery for the ovarian cancer, they tested the cells. They were not from the breast. This has gone on over a 20 year period. It started when I was 28 and I am now 47. I am now cancer free and NED. 2 years for my breasts and 1 year for the ovarian cancer. I know it is overwhelming and it's like "damn, what did I do wrong". When I tell people that I have had cancer 4 times, they look at me and I don't think they believe me. I am carrying the BRAC gene. It attacks your female organs. My mother died from ovarian cancer and my beautiful, 89 year old grandmother has had breast cancer 5 or 6 times. I forget how many times she has had it, but she is fine and cancer free. Take a deep breath and attack each thing in order of importance. I am a survivor and you will be to. Be positive and keep your faith. Thank-You, Paula
Everyone is welcome to this group.
Also, I think the chemo you take for ovarian cancer, Carbo/Taxol, is the same chemo you get for breast cancer, if that is the case, it will help you and give you a head start and mayby you will only have to have surgery on your breast and be on your way.

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

So sorry to hear about your news, but you have come to the right place. No one "gets it" better than the women here. We have hope and strength and tips and caring and prayers. I, personally do not have OVCA but take care of my mother who does. I swear I would trade places with her in a heartbeat. I do hope you have caring people around you as that seems to be pretty important for the people going through this, I think it helps them at times when it's challenging to know there's fans on the sideline pushing hard for you. Please come often and check in..you will find amazing advice and friendship.

kayandok
Posts: 1223
Joined: Jun 2008

Dear Lizerpup, I don't know anything about having two primary cancers, but wanted to welcome you to the board. I will be celebrating 3 years of surviving OvCA stage 3C grade 3 in June. I consider myself blessed. These women are the best, and I could not have made it without them! You have a lot on your plate, take it one step at a time, and try not to think too far ahead, it will stress you out more. Please keep us posted on your progress.
Warm hugs,
Kathleen

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

Hi Liz and welcome to the board, you will find many brave teal warriors here. Some who have had cancer for years (like myself 7+yrs), others that have been in and out of remission and others that are in remission. Each one will give you the support, encouragement and knowledge you need in this journey. Hugs ♥ Prayers Bonnie

msfanciful
Posts: 580
Joined: Nov 2009

Welcome to our wonderful group,

Of course wish it could be under better circumstances.

For you deal with 2 types of cancers at the same time can be very overwhelming, however; as you can see we have a phenomenol panel of women who are very informed and very willing to help in anyway they can.

They have gotten me through all phases of this disease.

Take care and continue to let us know how you are doing.

Sharon

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

Just wanted to chime in with a welcome too.. sorry you have to be here but so glad you found us. Hugs ♥ Prayers Bonnie

MK_4Dani
Posts: 318
Joined: Sep 2009

You have come to the right place. This board helped me every day! You will get question answered from the people who have "been there done that" and all the encouragement you need. Welcome
Mary

Jodie VanZant
Posts: 4
Joined: Aug 2010

Hello all,
My mother currently has ovarian cancer (Stage 3c) and 20 years ago had breast cancer, between the two she had the BRCA gene test and came up positive for the BRCA1. I had uterine cancer in 2002 and had a partial hysterectomy (they left 1 ovary), my twin sister had breast cancer and had a lumpectomy. I then was tested for the BRCA1 and also came up positive, two days later they sent me in for a mammogram and it came back abnormal, I have another appointment this wed. I was told if the results from this test came back abnormal then they are going to schedule me for a bilateral mastectomy and oopherectomy. I do not have insurance so i am terrified what to do.

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

You should start a new topic thread as this one is getting a little old and your knowledge and experience may get lost in this one. Click on "start a new topic" from the Discussion list. Then we can welcome you rightfully. Saundra

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

Jodie, I just wanted to say that when I had a lymph node light up in my arm pit, my oncologist was HOPING that it would be a second primary cancer (breast cancer) rather than a metastises of my endometrial cancer. He said having 2 primary cancers, when the 2nd is breast cancer, is SOOOOO much better than a recurrence of the same cancer. I remember thinking "How bad IS this that finding out I also have breast cancer would be GOOD News??!" His exact words "Breast cancer is usually so very curable; whereas if this is a recurrence of your endometrial cancer, it will be an incurable one."' As it turned out, the needle biopsy of the nodes showed that this is a recurrence of my uterine cancer, although it was noted that uterine cancer recurs less than .3 of the time in underamn nodes. I realize this doesn't make having 2 primary cancers any easier, but I thought it might give you a different perspective of it anyway.

There is tons of funding for breast cancer patients. (We with other cancers are jealous of that, in fact! HA!) Ask your local American Cancer Society, and check out the website of the Susan B. Komen Foundation, as they may also help you financially.

vj1's picture
vj1
Posts: 151
Joined: Jun 2010

You have reached the right place for support and understanding. Our prayers are with you. Keep in touch.

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