Brca1 diagnosis help for my daughter

[Suzannevans]

I was diagnosed with stage 3 ovarian cancer in September 2016. I had 3 rounds of chemo and went for debulking surgery in January 2016. It was inoperable so I continued with 3 more chemo's and have now had 16 of 18 treatments of Avastin. I feel very lucky because my scan shows minimal disease ( ca125 is 16). My oncologist is amazed as he thought I was in this position due to surgery. However, It has been identified that I carry the Brca 1 gene mutation. I have 3 daughters and my oldest daughter also had the gene. I can't change this - really wish I could! She wants to have preventative surgery. Can anybody help?

[Katmal-UK]

Hi Suzanne. Firstly I think your daughter should talk this through with her gp and also the genetics clinic where she was tested. How old is your daughter? I believe there is considered to be an age by which surgery should be carried but im not sure whether preventative surgery will be considered before . I hope your daughter gets the answers she needs xx

[Suzannevans in reply to Katmal-UK]

Thank you for replying. She is 38 and 3 daughters of her own. She had some genetic councelling and wishes to have surgery. I am concerned that this is may not be her best option in the light of recent research. I will certainly pass on the advice given on this site. Thank you again x

[Lyndy]

Hi Suzanne

I am also BRCA 1 with 2 daughters but don’t know yet if they are carriers. If your daughter is under 30 I would advise her to be very cautious about radical surgery. In my view there are developing advances in how we understand genetic risk and how we will monitor the development of disease that may mean surgery is not the best protection against this disease. On the other hand the use of PGD to select a foetus without BRCA when a woman wants to have a family may be a good option.

Be aware that many BRCA women who have had surgery are very committed to this option and will urge your daughter towards the surgical option but they only represent one side of this debate.

I suspect we may look back at removing breasts and ovaries in younger women as a bit barbaric in five years time. Hope that helps xx

[Suzannevans in reply to Lyndy]

It certainly does. My daughter is 38 and has 3 daughters so a lot of what you say applies to her. I will pass on your advice. Thank you x

[Hidden]

This is a subject close to my heart. It sometime seems that there is only one viable point of view, so I do feel it is worth hearing some alternative voices. However, I do think it depends somewhat on whether you already have cancer or not, and whether you have the psychological mindset to live with uncertainty.

I chose not to have a prophylactic double mastectomy. This decision was influenced by the fact that I already have incurable (but thankfully treatable) ovarian cancer, which I have been living with since 2006. For me, major surgery feels like a risky proposition, and probably a sledgehammer to the immune system. I would rather conserve my energies to fight the cancer I already have.

I have annual mammograms, and the occasional MR breast scan. Obviously, they won't stop me getting breast cancer but they should catch it early. I have banked, to some extent, on the chemo I have had, and the maintenance olaparib I am currently taking, to stop breast cancer developing. In other words, I have weighed up the benefits and costs of not having prophylactic surgery, and chosen my own path.

I don't know what I would have done if I had discovered I had a BRCA mutation before I got cancer. I totally understand the desire to be rid of bits of the body that carry risk. I suspect I would have had my ovaries removed, but I am pretty sure I would not have had my breasts removed too.

The landscape is changing. Targetted treatments for genetic ovarian cancer are developing fast. I think it's worth reviewing this, with specialist help, before reaching a final decision.

[Suzannevans in reply to Hidden]

I am in a similar situation and have opted for yearly mammograms. I responded very well to chemo but can't have olaparib until I have had a recurrence. Hopefully not for a while as I still have 2 rounds of Avastin. Your response has confirmed my own thoughts and I will pass on what you say to my daughter. Thank you for your reply it has been very helpful.

[Rachael47]

I first heard about the genetic link with OC 30 years ago, and tried to get tested then as my mother and other family members had had it. Unfortunately it was not available at that time according to my then GP. I was in my mid-forties then, and would willingly had a hysterectomy and the rest of it to avoid what I am now going through. Not sure about mastectomy as there seemed to be no cases of breast cancer in the family.

Quite understand the point about other ways of dealing with genetic disorders coming on stream. My daughter is about to be tested for the BRIP1 gene thing, which I have. As long as she does all the research and knows what she is doing I will support her either having or not having surgery.

[Suzannevans in reply to Rachael47]

Thank you for taking the time to reply. Like many other women I was unaware of symptoms of ovarian cancer until I was diagnosed in September 2016. The brca1 gene mutation was identified in myself last year and in my oldest daughter In December. She is thankful to have this information because it gives her the choice to do something about it now. Like you, I will support her in whatever choice she makes.

[Millie-c]

Hi Suzanne,

I found out I am brca 1 positive after being diagnosed with stage 3c ovarian cancer in Jan 2016. I have had extensive ultra radical surgery, lost my large bowel, struggled with chemo and had a year of avastin.

I don't want to take the risk of getting breast cancer so have just had a bilateral mastoplexy and breast reduction, ready for further surgery to have a double mastectomy later in the year.

I am more than pleased with the outcome so far. Although it's early days and I am still healing and full of bruises, I am so glad I made the choice to go ahead and do this. It's not painful as such, just a soreness which is very doable.

My sister was diagnosed brca 1 and has had preventative surgery, full hysterectomy and double mastectomy. She has had no problems at all.

It is of course a personal decision and I totally understand there are two sides to the story. Your daughter needs to make her own informed decision and seek help from the professionals while deciding. What I would say is there is no rush.

Take care, and any questions feel free to message me. Hugs to you and your daughter.

Mandy, xx

[Suzannevans in reply to Millie-c]

Thank you Mandy. It's good that you and your sister have had such outcomes. I will talk to my daughter about this. Good advice is to take time to consider all options before choosing what is right for you. Thank you again for your good wishes. X

[Hidden]

One thing to consider, research has already proven that at least 70% and possibly as high as 100% of Ovarian cancers start from Fallopian tissue - For women who are BRCA Positive and are also through having children, removing the Fallopian Tubes (Bilateral Salpingoectomy) instead of the more common Tubaligation removes the tissue that forms the initial cancer cells.

And with the Fallopian Tubes removed, the Ovaries can remain while they still produce beneficial natural hormones - much safer than the HRT.

The Salpingoectomy can be done as a laproscopic procedure, no more invasive than the tubal ligation - approximately 10 minute procedure per side.

The Fallopian Tubes only have one function - delivering the eggs, there’s no downside from the removal.

In five to ten years, removing the Fallopian Tubes may become the standard procedure replacing Tubiligations.

There is still some risk for OvCa. As the cycle from Fallopian pre-cancer cells to the presence of Ovarian cancer may be as long as six and one-half years, so the sooner after child-bearing is complete the Salpingoectomy is performed, the lower the risk for younger women.

The link between Fallopian tissue and OvCa helps to explain the number of women who got OvCa after the Ovaries had been removed.

Your Gynecologist is the expert for more info. I have no medical background and only learned so much about the deadliest Gynecological cancer on the planet after losing my wife to it and becoming an active advocate and educator for Teal Awareness.

If one is available, a Gynecological-Oncologist will likely be more current on the latest information about OvCa.

[Suzannevans in reply to Hidden]

Thank you for taking the time to respond. After reading your posts, I realise how committed you are to spreading awareness of ovarian cancer. I am sad to read that this was because you sadly lost your wife to this disease. I was fortunate that my doctor referred me quickly to the hospital and I had a diagnosis within a couple of weeks. However, it was stage 3c by this time. I am still here 18 months later and have more treatment options available when the disease decides to return. My concern now is for the oldest of my 3 daughters as she has inherited the brca1 gene mutation. Hence my post. I will share your reply with my daughter. It will be helpful. Thank you.

[Hidden in reply to Suzannevans]

My daughter is BRCA Negative, but with all the new info on the Fallopian Tube connections, she is going to ask her Gynecological-oncologist about removing the tubes at her next visit.

You might mention it to all three of your daughters for when they have completed their families.

[Suzannevans in reply to Hidden]

I will certainly do that. Thank you again.

[Sherrym]

Difficult one. I was diagnosed BRCA1 many years ago & advised to have prophylactic surgery. I didn’t & of course, here I am now. Doing great but suffered treatment for stage 3C ovarian.

My cousin had the prophylactic surgery & developed ovarian cancer anyway, on her peritoneum, & within the year!!!! We lost her a year later.

Speak to the experts. Remember any surgery is a massive trauma & we cannot know how our bodies will cope. Is your daughter strong & very fit?

I just don’t know. Again, speak to the experts. Angelina did it & she has access to the best opinions on the planet, I guess.

[Suzannevans in reply to Sherrym]

Much food for thought there! Thank you and will share this with my daughter.

[Bliney]

Did you get a second opinion on surgery? I was also told that my tumour was inoperable but a second opinion at Queen Charlotte's Hammersmith in West London assessed the tumour as being operable and I went ahead with surgery. It may be worth getting a second opinion.

[Suzannevans in reply to Bliney]

Yes I did, at the hospital you mention. And I would not have hesitated to have surgery at the time. However, 12 months later, I am still here and have responded so well to Avastin that scans show minimal disease. I am hoping for a good break before it returns. Thank you for replying.