New member introduction

Liz...welcome, indeed, but
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

Tina Brown said:

Welcome Lizerpup
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

Welcome and hugs.
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.

lindaprocopio said:

Welcome and hugs.
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.

Hey Linda
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.

Breast/Ovarian
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

Welcome
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

Welcome
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 said:

Ask away!
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

Hello
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 said:

Please start a new thread
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

JODIE: call Susan B. Komen Fdn. for $$ help.
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.