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Vanessa

Breast Cancer and Scleroderma

31 posts in this topic

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

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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.

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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

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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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

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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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

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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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

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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


ISN Artist

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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

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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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.

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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

ISN Support Specialist

International Scleroderma Network (ISN)

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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.

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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


Kay Tee

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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!

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