Confused, frustrated and stressed

Hello,
I’m new to this site but i’m feeling the need to blow off steam. Or probably just chat to straighten my thoughts out.
I spent the morning in a Breast Unit today. I’ve had 2 Mammagrams and 2 Ultrasounds. 2nd Mammogram needed as 1st one wasn’t clear enough (very flat chested). 2nd Ultrasound undertaken for clarification/2nd opinion. I’ve had VERY tender breasts for about 3 months and I found a lump about 3 weeks ago. Turns out the lump is a cyst ( I also have several smaller cysts in a cluster around main one) Plus I have an area of thickened breast tissue. So all is OK!

I’ve now been referred to a Genetic Clinic/Family History clinic. But was given no more information other than that. My breast is still very tender and i can barely touch it. Plus, no one has any explanation as to what will happen at the Genetic Clinic. Can anyone offer their experience?

There is a history of Breast Cancer in my Family. My Mother aged 45, her mother aged 42 and my Aunt was 47 years old all died from BC. In fact I’m the only living female in my family. I’m 38 years old. As there is no comparison for tests for BRAC1 or 2 I imagine screening is an option but testing isn’t.

I have thought about risk reducing surgery! Frankly I’ve been thinking about not much else for quite some time. I’ve got to the stage where I’m so tired of it looming over me! Does that make any sense? I can’t see regular screening as an option as my Mother and Aunts BC’s were so aggressive that they both passed away within months of diagnosis. My Mother in particular had Cancer everywhere: Bilateral Breast. Lymph, Skin…oh i could go on!

Can anyone advise me as to when i start to mention surgery? And to whom? Can discussions about risk reducing measures start at the Genetic Clinic?

I always find this subject hard to think clearly about. I don’t know if I’m being over cautious or well prepared and proactive?

Is anyone willing to share their experience’s?

Hi Marie

Welcome to the Breast Cancer Care chat forums where I’m sure you’ll get lots of support from the many informed users of this site.

You may find useful BCC’s publication regarding breast cancer in families, I have posted the link for you below.

breastcancercare.org.uk/content.php?page_id=691

In addition a chat with the staff on our helpline might be useful, they will be able to discuss with you about genetics and screening and possible options you might have. Calls to the helpline are free, 0808 800 6000 lines open Mon - Fri 9am - 5pm and Sat 9am - 2pm.

Hope this helps. Kind regards,
Jo, Facilitator

Marie
I hope you feel a bit better blowing off steam! It is no wonder you felt angry after spending so long waiting around for so many tests. At least it is good news that you have cysts rather than anything more concerning.

If you have no living relatives, I think there may still be ways to get tests done for the main genes (BRCA1 & 2), and if not, many women go through the same process as me with no gene identified, just an increased risk based on family history.

I am BRCA2 and have gone through the genetics testing, screening- MRI (went through it once and waiting for results wasnt for me), and surgery, so I will tell you my experiences>
I was referred to the genetics clinic by my GP because my sister developed agressive cancer very young (38), and my dad’s family had a large history of it. Later my sister was tested, was found to carry the gene, and so I was tested.
I visited the genetics clinic 3 or 4 times. Firstly to take my own family’s history, and be advised about possible risk, and what that might mean. The 2nd time was to give a blood sample - after they were sure I wanted to take the risk that I would be able to manage if I didnt get the all-clear that we all want - and a bit more info. Next I got the results.
I was devastated at being a BRCA2 person, so the genetics counsellor then came to my house to counsel me the following week.
That is all the contact I have had with them - apart from follow-up letters explaining what was discussed.
The Genetics clinic then referred me to my Family History Unit at the Hospital, where I met my surgeons (Breast and ovary), and my Breast care Nurse, and I then had a few appointments with each of them - finding out what options were available, consequences, risks, etc, and also being counselled/supported by them as to my ability to cope with each stage I went through. At no point was I put under pressure to do anything I didnt want to.
I had my MRI done through my breast surgeon, and could have stayed under her care being screened and monitored if I wanted - but I decided that was too upsetting, so had the surgery a year ago.
In my experience, I discussed risk-reducing surgery from the very beginning of the process - though at that stage it was some horrifying spectre too scary to seriously contemplate. As time went on I gained more knowledge, and, though still petrified, felt more confident about it being the right thing for me.

All-in-all I was a year and a half from referral to genetic clinic, to having my surgery - this pace was set by me as there is alot to think about.
keep in touch
best wishes
Jane

Hi Marie

I think I know how you are feeling. This has consummed me for the past few years also, culminating in risk reducing surgery this year. I now feel I have come out the other side and look back on everything as if it didn’t really happen to me at all, but someone else and I was a bystander viewing from a distance.

I requested testing when my mum was diagnosed 16 years ago but was declined, despite many aunts and mums cousins being affected by BC and ovarian c. When she was diagnosed a 2nd time approx 4 years ago I was seen by Genetics. This was a 160 mile round trip and I only had 2 appointments and was referred to a breast surgeon and gynae to disscuss my options. I was not BRCA 1 or 2 but considered at risk purely due to high incidence in my mums side. I was not counselled by genetics or the breast unit, just told my choices (screening or surgery) and to go away and ‘think’ about it. Certainly no home visits like Jane was lucky to get! I was telephoned by one lady who had had surgery and she told me her personal experience. Sadly I did not find out about this site until after my surgery.

It is appropriate to disscuss possible surgery at the genetics stage, they will need to know you are interested so they can refer you. I have probably sounded quite negative about the whole thing here, but now I have rcovered from the effects of surgery and am now back to work, I am relieved I have done it. I am now awaiting my nipple recon and contemplating ovary removal.

It is so difficult to put yourself through major surgery when healthy and it was so very stressful at the time. I was 38 also when I was seen by genetics, newly single, with 2 kids, 2 jobs, 2 dogs and a horse to sort. My way of coping with these thoughts was to say to myself it is better to have surgery the younger and healthier you are. I will never now know if this surgery was necessary or not, but at least I do not have to hang around waiting to see if I develop cancer to find out that answer. Better to regret having it done than to regret NOT having it done.

Good luck with it all, ask questions and ask again if you do not get answers.

Jackie x

Thank you both so very much! I know what you mean Jackie when you say that it all seems to be happening to someone else and you are simply just a bystander. I think that i’m pretty much set on Risk reducing Surgery. I can’t keep up the pace and stress of screening until something eventually happens. I’d rather be proactive and move on…I’m tired of living in Limbo! Seems like its been with me for too long now. My life has been based around this. Even down to the fact that it was partly why I decided not to have children. Harsh I know! It wasn’t the ONLY reason!

I recently attended a Breast Cancer awareness seminar held by a Breast Cancer Consultant. I was the only person to show up! I stayed and spoke to her at great length. I made the decision not to suggest my preferrence for Surgery. Wanted her honest opinion based on my History and not my emotions. Does that make sense? That said, I was still shocked when she said that I should start to consider Surgery (both bilateral Mastectomies and oopherectomy!) She explained that I’m high risk at 85%. I tried to get directly referred to her by my GP but he was having none of it. He referred me to the Breast Clinic instead! Who as you know have referred me to the Genetic clinic.

It is such a relief to read about both of your experiences. I have never felt that I would be taken seriously until now! All I want is the freedom to be away from the cloud that follows me EVERYWHERE! I’m so very tired of thinking about what will happen in the future. Apart from the Consultant and the support on this Web Site I feel that no one can ever really understand. My Husband does try bless him!

But, having said all of that I now feel I have the confidence to go to the Genetic Clinic and finally say (out loud )that I want Surgery! No messing!

Thank you again so very very much!

Marie xx

Just to add that they managed to find the BRCA1 gene in me without any samples from family as I had no known family history but having 2 x breast cancer this year (age 33) they thought it wise to look… they were right.

Good luck making some tough decisions. I had bilateral mastectomy because both breasts had BC but I will also be having my ovaries removed as a preventative surgery next year I reckon. I’m happy to know what my status is because I feel it gives me choices.

Things are improving with the speed of the tests too, they found the BRCA gene in me after only 3 months!

I called the Helpline today. The person i spoke to was lovely. I’m now feeling more empowered. Will now return to my GP and get a referral to the consultant I saw at the seminar. I feel comfortable with her and I know she is an excellent surgeon.

Vertangie: thanks for the genetic info. The Consultant did mention a company that can sometimes find the gene. So will investigate that further.

Thank you all so much. I have gone from a confused mess to now having several route’s open to me.

xx

marie
I wondered what area of the country you are in, as some places, like the Royal Marsden hospital, have local support groups for family history people ?
Jane

hi Jane,

I’m only 30 minutes away from Royal Marsden (london site). Thanks for information I will look into the support group! That might be exactly what I need right now. I always seem to be looking into something or another.

But, I’d rather be getting somewhere slowly than staying still!

Marie x