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Vanessa

Breast Cancer and Scleroderma

31 posts in this topic

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))))

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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.

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Hi Vanessa

 

One of the most positive things to come out of your diagnosis is that you have found really true friends and a staunch new love, who is now proving that he is prepared to love and support you through such a difficult time. You must be quite a special person to have inspired such loyalty and devotion.

 

As I said in my previous post, two of my friends have undergone very successful mastectomies and reconstructions and in fact one of them (who has very few inhibitions! :wink: ) uses her reconstruction as a subject for discussion at dinner parties and is not averse to showing her 'battle scars' at the slightest provocation!! :lol:

 

I will be thinking of you and wish you the very best of luck with your surgery.


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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Hi Vanessa,

 

It sounds to me like you have everything in place for having a good surgery. I'm sorry you need to have a mastectomy (that must have dashed a few hopes) but if it were me, the less worry afterward, the better.

 

I love it that your family is being so supportive, and that you are putting your pre-surgical time to good use by doing exciting and enjoyable things! Here are some extra flowers and hugs, just for you.

 

:flowers::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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Hello Vanessa,

 

I, as well, am very sorry to hear about your diagnosis. But I'm also glad to notice that your family and friends are showing such a huge amount of support, that is the most valuable thing in life at this point, I guess.

 

You showed your concern on how your skin would heal after surgery. I know a scleroderma patient with 90% of his skin being affected by sclero. His body sometimes developes ulcers by itself, which might stay open for years. However, whenever he had had a surgery or something outside from his body which has caused a wound to his scleroderma-skin, those wounds always heal properly. That is quite interesting I think as well as a bit weird, but after living with this for 14 years I've noticed that scleroderma is far away from normal anyway.

 

Take care and good luck with your treatments,

Emmi

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Vanessa,

 

Your last post has me in tears. I am so sorry you have to have a mastectomy but it makes my heart happy to hear about all the wonderful people and support you have around you. Thanks for sharing your story. I have not had a mammogram in over 5 years. I am making my appointment on Monday.

 

Best wishes and good thoughts coming your way!

XX


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hello Vanessa

 

I am so sorry you are having to deal with this. You have great support around you and I am sure you will enjoy your trip to Jamaica.

 

Take care. :emoticon-hug:


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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Vanessa, I'm so sorry to hear that you have to deal with a full mastectomy but it never ceases to surprise me what the medical staff can do. My own sister went through exactly the same operation in January last year, she has been given the all clear at her recent checkup so was over the moon with joy.

It makes a big difference when you have such a supportive network of friends and family so use them when you need to to lean on.

 

Best Wishes

 

Buttons

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Hi (again), Vanessa,

 

This will be echoing what so many Ladies before me already mentioned, yet I feel compelled at this juncture.

 

How very fortunate you are to have the loving daughter, plus a new love in your life...very special.(You must be VERY proud :wub: of your daughter)! What an especially important time for you to have such support and from them BOTH...Obviously, you are quite a special Lady.

 

How awesome that you opened up your home to someone in need and yet, the rewards seem to be coming (back) to you many times fold...through this person...also. We can never have enough friends, yet those who really care uncondtionally...are truly the keepers in life.

It seems as though you touch the lives of everyone you come in "touch" with, Vanessa...I will continue to hold you in my thoughts.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thank you once again for all your kind support, dear friends.

 

And take note of Barefut - Check those breasts regularly.

 

It is a beautiful day here. I have just tucked into a delicious plate of eggs and bacon and buttered toast and am going to sit down with three girlfriends and a cup of tea to watch X Factor on catch up.

 

Bliss

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Vanessa - ahhh life's simple pleasures!

 

Just wanted to let you all know I had my mammogram on Tuesday and all looked good. However, I am also having a sonogram to check for inflammatory breast cancer as I have had some tenderness and swelling and an unusual shaping to my left. Saw my family doctor and got some bloodwork done as well. That was also yesterday and I have not yet heard back from them so slow news is good news.

 

Inflammatory breast cancer will not show up on a mammogram so a sonogram is the next step and then MRI. I'm sure its probably just sclero related tenderness but since I have been on Cellcept for nearly 5 years it puts me at risk. Better safe than sorry and inflammatory breast cancer is something you do want to catch early. So something to think about girls.

 

Take good care all!


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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