Breast Cancer - Twice bitten

75

By cindyvine

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The Case of Billy B
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Go with your gut feeling!

Breast Cancer again!

The first time they told me I had breast cancer was on the 24th December 2003. It had come as such a complete shock that it devastated me. I'd had a blocked duct removed two weeks earlier and I can still remember the breast surgeon saying, "Well at least you know its not cancer." How wrong he was. Christmas and New Year was spent in deep depression as I thought I was going to die. My gran had died from cancer, so for me cancer equated with death. My operation was set for the 19th January 2004, and after the op I had so many complications, resulting in me suffering from post-traumatic stress disorder. Although I survived the whole unfortunate and unpleasant business, it was not something I would ever have liked to go through again.
In September I had a strong gut feeling. I didn't have a lump or anything nothing to merit my concern, but I just new that there was something wrong with my so-called healthy breast. I tried to find out about getting a mammogram done in Moshi, Tanzania where I live. The hospital down the road had a mammogram machine, but nobody who knew how to work the machine or read the films. In Arusha, 90km away, they had someone to work the macxhine but their machine was broken. During the October break I traveled to Nairobi to have a mammogram at Nairobi Hospital. Unfortunately, they lost the films somewhere between the hospital and the doctor. Obviously, there was nowhere in East Africa I could go to with any confidence.
Searching online for a breast specialist in Cape Town, South Africa, I stumbled upon Prof. Affelstaedt, whom I always refer to as Prof Apfelschnapps. The mammogram and ultrasound both showed a suspect area in the spray of calcifications they'd picked up in China in 2008. The good Prof immediately performed two fine needle aspirations. The results were inconclusive. The Prof suggested a core biopsy.
Having had a miserable festive season seven years earlier with the spectre of cancer looming over my head, I wanted to avoid having to go through that again, so I told the doctor that I'd have the core biopsy after the festive season. I think I just knew what they would find. The first results came back and they were only 70% sure. The pathologist had to stain the cells and then the results came back. 100%! Even though I'd been expecting it, even though I'd gone through it all once befiore, it was still a shock. My mom saw I was upset so took me shopping. The cure for all woes in her book. At first I handled the news that I'd need another mastectomy quite well. They can't do another tram-flap reconstruction, as they'd already used my stomach muscle the first time. This time, I'll be having an implant. As the time looms closer for the surgery, I can feel myself becoming more anxious. The Prof suspects that I carry the cancer gene as bilateral breast cancer in a woman under the age of fifty is not common.
Last time I went through it in a strange country with only my children for support. This time, I'll be surrounded by family and friends. Even though I know it won't be as bad as the first time, I still feel scared. I can feel myself disassociating as a way to cope. Like part of me is here going through the motions, but my spirit has gone to some zone to hang out until this is over. Like I'm an observer watching what is going on but I am no longer a part of it. I guess, that's just how I cope.

Bilateral Breast Cancer is quite rare, and even though they were different types of cancer on each breast, the types of cancer I had was found in only 2% of those with breast cancer, so I guess that makes me special. I'd rather I wasn't that special. My advice, is to get your mammograms and breast examinations done by breast specialists who only look at breasts. Many radiography practices you go to, do a range of radiography, looking at a cracked write before they look at your breast. They can pick up the obvious breast tumours, but nothing that needs a specialised eye.

 

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Comments

VioletSun profile image

VioletSun Level 5 Commenter 16 months ago

Cindy, after you shared the news in Facebook, I often think of you. I am really sorry you are going through this! I just hope that things work out well for you and the cancer will be gone forever from your body. My girlfriend is a 10 year bilateral breast cancer survivor, and she is in excellent health now; her breast implants look normal, the cosmetic surgeon did an amazing job.

Hang in there, Cindy, on the date of your surgery, I will be sending you plenty of good energy and prayers for strength and a perfect recuparation, and I ask everyone to join!

cindyvine profile image

cindyvine Hub Author 16 months ago

Thanks VS, just feeling a little down this weekend. Will perk up during the week, I'm sure!

The Old Firm profile image

The Old Firm Level 1 Commenter 16 months ago

Hi Cindy, I'm sorry to hear that you have this problem. Hang in there kid.

Best wishes.

Peter.

Twilight Lawns profile image

Twilight Lawns Level 7 Commenter 16 months ago

My God, you are a wonderful person, Cindy. You're going through the trauma of this and have gone through it already, but there is not one note of, "I'm sorry for myself". This is a very positive and uplifting hub because e you have shown how you can cope and I am sure that that strength that is in you will be there for you to draw on.

Fabulously interesting and helpful hub.

Voted up,

Ian

Ingenira profile image

Ingenira Level 5 Commenter 16 months ago

Thank you for sharing your experience with us. My prayers for you.

Zsuzsy Bee profile image

Zsuzsy Bee Level 3 Commenter 16 months ago

My thoughts are with you Cindy. Glad to hear that you'll have family and friends around you this time around. Your friends here at Hubpages will be rooting for you and will be with you in spirit also. Maybe that will give you a tiny bit of an uplift. I'll be wearing my pink shirt on the 11th of Feb with you in mind.

take care

regards Zsuzsy

alekhouse profile image

alekhouse Level 4 Commenter 16 months ago

Cindy, I'm flabberghasted. I had know idea that this has happened to you again. Guess I didn't see your message on facebook. I've been through this. Once with a lumpectomy and two or three scares with suspicious looking cells in the well breast. It's always a scare.

I know you'll come through this again...many many prayers for you. Happy that you're surrounded by family and friends...the support with be a great comfort to you.

Love you...Nancy

KCC Big Country profile image

KCC Big Country Level 2 Commenter 16 months ago

I'm really sorry to hear this, Cindy. But, I have to say, you're one of the toughest ladies I've come across on HubPages. You'll find the strength to endure this. Thank you for sharing your story. I'll keep you in my thoughts.

Shalini Kagal profile image

Shalini Kagal Level 4 Commenter 16 months ago

Oh Cindy - how brave of you to share this. Here's to strength and health and all the love and support you need! Take care!

cindyvine profile image

cindyvine Hub Author 16 months ago

Thanks for the words of support! It really means a lot to me. Hopefully on the 11th Feb there'll be a sea of pink as everybody steps out for Breast Cancer Awareness. Was doing some research today and found that there's a inherited syndrome called Cowden's Syndrome where you can be susceptible to tumours on the thyroid and bilateral breast cancer. Seeing that my doctor wants to go further with this gene testing thing, maybe he should get me tested for that gene.

creativeone59 profile image

creativeone59 Level 4 Commenter 16 months ago

Thank you Cindy, for sharing such pesonal information with us, we all need to know that the people we love, are going through traumatic things so we can come together and pray for one another.May God cover you with his blood and heal you by his stripes, in the name of Jesus, I pray.Amen.Read Psalms 116 and feel comfort with his words. God bless you and keep you. much love. creativeone59

eovery profile image

eovery 16 months ago

Take care Cindy,

Keep on hubbing!

Triplet Mom profile image

Triplet Mom Level 3 Commenter 16 months ago

Thank you for sharing something so personal. I am sorry to hear this and hope that you are doing well.

rmcrayne profile image

rmcrayne Level 4 Commenter 16 months ago

Cancer is a lonely business. I'm glad your support system is fortified this time.

Could I send you a video link to an easy energy healing technique? It's soothing and almost meditative.

cindyvine profile image

cindyvine Hub Author 16 months ago

Please send me that video link, today I'm feeling stressed!

2patricias profile image

2patricias Level 5 Commenter 16 months ago

Hi Cindy,

I've been thinking and praying about you since your Forum request to wear pink on 11th Feb.

Pleased to read that you are surrounded by loving family. Please know that people you've never met are also thinking of you.

travelespresso profile image

travelespresso 16 months ago

Oh dear Cindy. What can I say? Sorry to hear that you are going through this. I hope it goes well for you. All these words seem so wooden but my thoughts are with you.

Hello, hello, profile image

Hello, hello, 15 months ago

I am so, so sorry, Cindy. My thoughts and good wishes are with you. Please let us know how you are getting on. Wish you speedy recovery.

2besure profile image

2besure Level 5 Commenter 15 months ago

OMG! Twice...you are so brave! You beat this terrible disease before. My prayers are continually with you. If God be for you, it is more than the world against you.

tonymac04 profile image

tonymac04 15 months ago

I have dedicated my latest Hub to you. You are one very special person and I am sending you all the positive vibes I can.

May it all go well, dear lady.

Love and peace

Tony

Micky Dee profile image

Micky Dee Level 4 Commenter 15 months ago

Very beautifully written. My friend and nutritional adviser has had the same cancer. Hers has been in remission for years. I'm praying for you. God bless you dear cindyvine.

Beth100 profile image

Beth100 Level 5 Commenter 15 months ago

Cindy, I am very sorry to have read this, yet I am grateful that you have shared this personal moment with us. Thank you. I am glad that you have your family and friends to support you through this period of time. I will be wearing pink in your honor as well as for all of those (and us) who have been touched. You are in my thoughts. Well wishes for the best for you. {{HUGS}}

susansisk profile image

susansisk 15 months ago

Good luck to you Cindy. You will have a whole world of friends praying for you.

cindyvine profile image

cindyvine Hub Author 15 months ago

Thanks so much guys, op went well, just the pain!

Lily Rose profile image

Lily Rose Level 2 Commenter 15 months ago

You are going through my worst fear - I'm so sorry. Because I am BRCA2 positive I had the bilateral mastectomy and had my ovaries/tubes removed, but I still have the fear.

My mother recently completed treatment for her second bout of breast cancer - like you, different the second time (this time HER2 positive, first time HER2 neg). She went with bilateral mastectomy and oopherectomy like I did.

You're in my thoughts and I hope you are doing well. Even though I don't know you personally, I know you are strong because the cancer doesn't give you a choice but to be! If you ever need to vent or compare notes, feel free to contact me.

cindyvine profile image

cindyvine Hub Author 15 months ago

Lily, did they advise you to get tested for the cancer gene? My breast surgeon wants me to get tested for it, my family aren't so keen, they don't want to know if we have it. He also told me he's 100% sure that my ovaries will be the next to come down with cancer. He's talking about putting me on an anti-estrogen for 5 years to try and prevent it. I'm not sure if I like the side-effects though. Don't think my medical insurance will pay for me to get my ovaries removed before the cancer is detected there.

Lily Rose profile image

Lily Rose Level 2 Commenter 15 months ago

Well, I was diagnosed at the age of 37, so that plus my Ashekenazi bloodline raised a big red flag. I was tested right away and did come back positive for the BRCA2 mutation. It wasn't until after my genetics test that my mom's insurance agreed to pay for her to get tested. She's positive, too, for BRCA2. My sister, lucky girl, is negative.

There are some members of our family that also don't want to get tested and although I think that'd stupid it is their prerogative. I would rather have known earlier in order to be vigilant, which is the plan for my two daughters. They are only 4 and 5 and the doctors won't test them until they are 18. I know from my research that there's a 50/50 chance of them having the BRCA2 mutation.

Even if they have the mutation, though, it doesn't mean they will get cancer, just that the risk is significantly greater for it. I'm glad I know that the risk is possibly present because it gives me that much more motivation to raise them well and make sure they grow up with healthy habits and when they are old enough to understand I will be sure to tell them so that they can be diligent throughout their lives to be healthy and hopefully avoid cancer. Hopefully things will be different (a cure?) by the time they are adults! I bought a book for them to have called: Taking Care of Your "Girls"

I don't know how things work where you are as far as insurance goes, but as soon as my genetics test came back positive for BRCA2 (great risk of ovarian cancer) my insurance company was willing to pay for the oopherectomy.

I would think that having breast cancer for the second time would be enough for your insurance company to pay for your genetic testing, and if positive, to pay for the removal of the ovaries. Assuming you're not planning on getting pregnant, you're better off having them removed before cancer possibly comes since ovarian cancer more often than not goes undetected until it's too late; that's why they call it the "silent killer." Not to mention that it would be cheaper to pay for the oopherectomy than to pay for treatment for ovarian cancer.

Do you know what drug he wants to put you on? Tamoxifen? I'm on Femara, which is basically the same thing but for post-menopausal women - having my ovaries removed threw me into menopause at 38!

I've gone on and on, I'm sorry. I wish you all the best and please keep updating your status.

cindyvine profile image

cindyvine Hub Author 15 months ago

Lily he was going to put me on Tamoxifen, but I did some research and I said to him I don't want to take that as its side-effects don't go well with me not having a thyroid, having had a total thyroidectomy in 2006. Anyway, as I'm 49 and unlikely to have more children, he said the best option then is to whip out the ovaries. I see the gynae next week, but think I can wait a year. Two ops in one year is too much, don't you think?

Jess Killmenow profile image

Jess Killmenow 15 months ago

You know all our thoughts are with you, Cindy.

Far be it from me to give advice, but I feel your intuition as as good as any prognosis. All the best,

Jess

cindyvine profile image

cindyvine Hub Author 15 months ago

Thanks Jess, surgery is all over now and am on the mend!

Jess Killmenow profile image

Jess Killmenow 15 months ago

Good news!

cindyvine profile image

cindyvine Hub Author 15 months ago

It's a relief Jess!

Dr.Ope profile image

Dr.Ope Level 2 Commenter 14 months ago

Thank you for sharing this information with us. You are a courageous and strong woman. My prayers with you. Keep strong and keep sharing. I will be following.

cindyvine profile image

cindyvine Hub Author 14 months ago

Thanks Doc for your words of encouragement!

Earthy Mother profile image

Earthy Mother Level 3 Commenter 4 months ago

I read your other hub about the reconstruction and was extremely saddened to read your comment saying it had spread to the other breast. I hope you are still recovering well. I just had a mastectomyon my left boob and did not opt to have the reconstruction - your other hub has given me food for thought though!

cindyvine profile image

cindyvine Hub Author 4 months ago

Earthy Mother, I guess if you've had it once before you need to have regular check-ups. Removing one breast doesn't mean it's gone forever!

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