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Breast Cancer and Scleroderma


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#1 Vanessa

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Posted 05 December 2010 - 11:14 PM

I have developed breast cancer. It is triple negative, has gone into my lymph glands and is aggressive. As we are unable to have radiotherapy I am hoping that I am eligible for Target surgery, where radiotherapy is delivered at the point of surgery and they would only need to remove the lumps and lymph glands which luckily is practiced at the Royal Free.

I am going to have all my treatment there.

I am keeping very positive and my new love (only 8 weeks) is remarkably totally supportive. I feel blessed to be surrounded by so much love from family and friends but I have to admit to really horrible feelings of disempowerment. I am used to looking after others and although I tell myself that this is the time to allow others to help me I just feel 1 inch high.

Tomorrow I go for a bone scan and due to all kinds of magic and a number of wonderful healthcare professionals all of my other scans and xrays have been completed in record time so hopefully all the info will be with the RF for their Wednesday meeting to decide if I can have the special surgery. If not, they will remove the whole breast, which is okay too.

Has anybody else had this problem?

If so how was healing after surgery?

My skin is very tight and pulls a lot under the arm so I can't imagine how it will heal properly.

I am with the breast surgeon on Thursday to hear the decision.

Please send good thoughts and/or fairy dust.

Love,

Vanessa

#2 Shelley Ensz

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Posted 05 December 2010 - 11:33 PM

Dear Vanessa,

I'm very sorry that you have breast cancer, on top of scleroderma, no less. Unfortunately there seems to be a higher rate of breast cancer in scleroderma patients; see that section on our Cancer and Scleroderma section. The only positive thing about this would be that "you are not alone" as others have also somehow coped with this double-whammy.

Per your request, I am going to send you two types of fairy dust. The first should (if it works this time!) instantly comfort you and put a smile on your face. :fairy:

And the second will help your surgeon make the best recommendation for your particular case. :fairy:

:emoticon-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Sheryl

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Posted 06 December 2010 - 01:09 AM


Vanessa,

I feel so sorry for you getting an addition thing to cope with at this time. My sister had the very aggressive cancer in her breast and needed it removed along with 20 plus nodes running down her side. She had many different treatments. Any ways that was 20 plus years ago and she is still cancer free at this time. She only had a 20% survival rate at that time and things have really progressed medically since then. I also had breast cancer. Mine was caught very early and was encapsulated so I only had to take Tamoxifen for 7 years. I had several cysts removed in both breasts, prior to the cancerous one being found. One doctor said go ahead and remove the breast since breast cancer runs in my family. My surgeon said he took a large enough area around the growth that he was quite certain nothing was left to grow. So, I did keep my breast and that was about 15 years ago. This is a very scary thing you are going to be coping with. Your doctor can give you names of patients that have gone through what you might have to go through. Talk to these people or I can even have my sister talk with you to help you prepare for this major change in your life. We are all here to help each other in any ways that we can. I hope this man sticks by your side, he sounds like a keeper. Well wishes, fairy dust, soft hugs and whispers for strength are being sent your way. We are strong we can overcome all obstacles. We will survive. You can do this.


Strength and Warmth,
Sheryl

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#4 Jeannie McClelland

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Posted 06 December 2010 - 01:27 AM

Oh Vanessa, what a blow~ I'm sending yet more fairy dust (the special high-altitude kind), warm wishes, and will hold you in the Light.

Warm hugs,
Jeannie McClelland
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#5 Buttons

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Posted 06 December 2010 - 01:41 AM

I'm so sorry to hear that you now have to cope with cancer as well as the Scleroderma but I'm sure that your consultants will come up with the best solution for you.

Best wishes

Buttons

#6 Amanda Thorpe

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Posted 06 December 2010 - 02:08 AM

Hello Vanessa

I am so sorry to hear this! You know you'll get the best treatment at the Royal Free though and that your new love is standing by you is testament to what a wonderful person you are.

Take care and keep posting. :flowers:
Amanda Thorpe
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#7 Joelf

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Posted 06 December 2010 - 06:06 AM

Hi Vanessa

I'm so very sorry to read your news. At least you'll be treated at a top hospital and hopefully it's been caught early enough to have a really good prognosis.

Although I don't know of anyone who's had the special surgery you were outlining, I have had two good friends who've both had mastectomies and reconstructions which were completely successful and one of them has been clear of cancer now for almost ten years.

I'm also sending you a large dose of :fairy: and a very large :emoticon-hug:

Jo Frowde
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#8 susieq40

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Posted 06 December 2010 - 01:13 PM

Dear Vanessa,

So sorry to hear about having breast cancer on top of having sclero. I can't even imagine!

Take it one day at a time...and cry if you need to. We are all here for you! I know I start feeling bad about my situation, and I start to think about all the other people out there that have it way worse than me. Warm HUGS!!! Think Positive! And keep us posted.

:fairy: Susieq

#9 miocean

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Posted 06 December 2010 - 02:22 PM

Vanessa,
I share with the others about sorrow regarding your breast cancer. You must be very frightened. Many years ago I had a questionable area and I know how I felt, and thankfully it was a benign cyst.

I can share this with you: a friend of mine, at the age of 30, was diagnosed with breast cancer. She was tested to see if she carried the gene for it, she did, so she opted for a double mastectomy, with reconstructive surgery. Sadly, her boyfriend at the time, couldn't deal with it and they broke up. She got back together with an old flame and they married. She wanted a baby really badly but was concerned that with all the treatment she had, she wouldn't be able to conceive. They are now the parents of a healthy 10 month old!

As for healing from surgery, I healed very well after my kidney transplant and the incision is quite long. I, too, have diffuse scleroderma.
Please keep us posted on your progress and I wish you the best! :flowers:

miocean
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#10 janey

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Posted 06 December 2010 - 03:45 PM

Vanessa,

I'm sorry to read about your diagnosis of breast cancer, but it's good that you have such a positive attitude. Breast cancer diagnosis, treatment and prognosis has greatly improved in just the past few years and, based on the treatment process that you described, it sounds as though you will benefit from all those improvements.

Of course the support of your new love, family and friends are also a great benefit. You are so lucky to have such support. Please stay positive and let us know how you are doing. You will be in our thoughts.
Janey Willis
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#11 Vanessa

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Posted 07 December 2010 - 04:48 AM

Thank you all you lovely friends.

I have just returned from a complete spin around London - or so it feels.

I arrived at Charing Cross Hospital for my bone scan this morning only to be told that my appointment had been cancelled.
If anybody had been watching me at the reception desk they would have surely thought that I had lost the plot. Faced with a chippy young receptionist who would not let me speak to the radiologist to try and get my appointment reinstated I was getting redder and redder whilst very quietly and politely BEGGING her to let me have a word. I tried to point out how important it was as the surgeon at RF had asked for the report to be faxed today, as the meeting to decide if I can have Targit surgery is tomorrow and they could not reschedule for another week.

Anyway I scooted over to Royal Free and fantastically they managed to slot me in there for tomorrow. I will then return on Thursday to hopefully hear the outcome.

So it all turned out well in the end.

I have developed a taste for sparkling wine since my Cellcept was stopped last week.

Make hay while the sunshine's, I say.

#12 Sweet

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Posted 07 December 2010 - 05:11 AM

Oh Vanessa, I am so sorry to hear this horrible news. I'm glad you are trying to keep a positive attitude, and I'm very grateful to your new love for being so supportive. You'll be in my heart and my thoughts. :wub:
Warm and gentle hugs,

Pamela
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#13 JudithL

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Posted 07 December 2010 - 09:22 AM

Vanessa, I'm a breast cancer survivor but in my case the breast cancer preceded the scleroderma diagnosis so I can't offer advice but I do offer my support and a virtual pink ribbon.

#14 KayTee

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Posted 07 December 2010 - 02:48 PM

Dear Vanessa,

Warmest thoughts are with you along with a sack of fairy dust. I had breast cancer 7 years ago, and although I didn't know I had scleroderma then, looking back I can see the signs were there. All the surgeries and treatments were successful. There are so many wonderful doctors, support personnel and medications available and I know they will all be there for you along with your significant other (bless him).

KayTee
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#15 Snowbird

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Posted 07 December 2010 - 03:08 PM

Hi Vanessa

I'm sorry to hear that you have to deal with breast cancer as well! Oh my, but you do have a positive outlook which is good, stay steady - stay strong! Glad to hear you have wonderful support at your finger tips too! You are in my thoughts.
Sending good wishes your way!

#16 barefut

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Posted 09 December 2010 - 03:53 AM

Vanessa,

Keeping you in my thoughts!

#17 debonair susie

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Posted 10 December 2010 - 05:55 AM

Oh Sheryl...How wonderful a message for Vanessa and all of us to read at this time. This is so great...Congratulations to your sister...to all of you, Sheryl!
Special Hugs,

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#18 debonair susie

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Posted 10 December 2010 - 05:59 AM

Dear Vanessa,

Please know that you will be in my thoughts from now...on.

You've received much fairy dust, so I am sending Huge Soft Loving {{{{ :emoticon-hug: }}}}s, as well as positive thoughts to help comfort you.
Special Hugs,

Susie Kraft
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#19 enjoytheride

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Posted 10 December 2010 - 07:29 AM

It just doesn't seem right that you have two major things going on at the same time. But I must admit to admiring your enterprise and creativity in dealing with the arbitrariness of the medical world. When the right way was blocked, you went left. Right around the blockage. Good for you.
I'm sending warm wishes in your direction. May you always find the way through with as much success. ((((hugs))))

#20 Vanessa

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Posted 10 December 2010 - 10:34 PM

I went for my meeting at Royal Free on Thursday.

The decision is that it is best for me to have a full mastectomy as it will offer less chance of the cancer returning. They will remove some or all of my lymph nodes as well and will see at the time of surgery exactly how far it has spread and have more idea of my prognosis.

My bone scans CT and MRI all indicated that the rest of my body is unaffected so I am having the surgery on 11th of January.

My lovely daughter Samina came (again) with me. I must admit to early discomfort about bringing her along for all of this but when I initially refused her offer she gave me a sit down talking to and explained that she is a 23 year old woman who wants to support her beloved mother.

My partner suggested that if I was to have treatment in the new year we should go for a few days to his native Jamaica so that I may meet his mother and sisters and we have already booked flights.

Although this may sound strange I feel quite okay about all of this and so blessed to be surrounded by such loving and caring family and friends.

It is synchronistic that a new, and I would say the most important, love came into my life at such a time. A man who is standing firm in the face of adversity. A truly first experience in my life.

Also a friend who I made from Fat Club who is an outrageously funny young girl of 32 fell on hard times a few weeks ago as she lost her home just as her job came to an end and this is a horrible time to be looking for work. So I said she could come and live with me until things improved. She has a lovely boyfriend who stays here most of the time too. Anyway she is always around with a giggle or two.
She swept into my bedroom this morning with a cup of hot Java to wake me up as she was setting off for an interview.

She noticed a copy of "Understanding Breast Cancer" on my bed, grabbed it and scowled "No way, Missy. You are absolutely NOT having that one as bedtime reading. 9-5 only for that kind of stuff!!!!"

No prizes for guessing her profession.

Jenny is a nanny.