• Frida…

Thanks for sharing all the story, with us, Sue.
I am glad for the amount you have already raised. I have a question: What will that money be for? To help women without money for their treatments? Sorry, I don’t know.
I have some other questions, because I’d want to know more about the subject: You had said there were no genetical factors, but they were, right? Only from your father’s side (and more distant).
You mention in this blog that you felt itching. So you did feel something, even thought there was no lump at all. Was that like a warning side for you?
I pick up from here that not all cancers then are estrogen related; they may simply happen, though family medical history is important (from either side: Mom or Dad).
Why did they have to do a complete mastectomy is something I don’t understand. I had the impression they only did that because of an advanced cancer (to try to prevent it from spreading?). I thought Chemotherapy and Radiation Therapy came first (I know radiation therapy is PRETTY aggresive) and only if they didn’t work doctors proceeded to do a mastectomy.
My Gynecologist told me screening for Breast Cancer is very important; more important even than cervical because cervical spreads and grows very slowly and can be stopped easily, (plus all women are getting Papanicolau Smears for many years now) whereas Breast Cancer spreads SO FAST and not everybody gets or used to get Mammographies or Mammograms. From what she said this idea remained in my head, clearly: Anything related to breast cancer means IMMEDIATE aggressive intervention because of its high risk of spreading. It seems to be a lot more dangerous (at least, to me). Lymph nodes are pretty close, so maybe that is why?
Could you please reply to my questions?  Maybe others have them too?
Hugs!  And thanks a lot for sharing.

Saturday October 6, 2007 – 10:05pm (CDT)

• Frida…

I just read about Paget’s Disease of the Nipple.  It seems to be a rare form of breast cancer, SO THANKS A LOT FOR TELLING US.
Wow!  I also found this (a very unlucky story, I’m glad that didn’t happen to you!):

THIS WAS WRITTEN BY A WOMAN WHO SUFFERED FROM THE DISEASE BUT WAS GIVEN AN INCORRECT DIAGNOSE AT THE BEGINNING. HER DOCTOR MISTOOK IT FOR A COMMON DERMATITIS, IMAGINE THAT!
“Ladies, take note:
This is a rare form of breast cancer, and is on the outside of the breast, on the nipple and aureola. It appeared as a rash which later became a lesion with a crusty outer edge. I would not have ever suspected it to be breast cancer but it was. My nipple never seemed any different to me, but the rash bothered me so I went to my doctor for that. Sometimes it itched and was sore, but other than that it didn’t really bother me. It was just ugly and a nuisance, and could not be cleared up with all the creams prescribed by my doctor and dermatologist for the dermatitis on my eyes just prior to this outbreak. They seemed a little concerned but did not warn me it could be cancerous. Now I suspect there are not many women out there who know a lesion or rash on the nipple or aureola can be breast cancer.
What are the symptoms? Mine started out as a single red pimple on the aureola. One of the biggest problems with Paget’s disease of the nipple is that the symptoms appear to be harmless. It is frequently thought to be a skin inflammation or infection, leading to unfortunate delays in detection and care.
The symptoms include:
1. A persistent redness, oozing, and crusting of your nipple causing it to itch and burn. ( As I stated mine did not itch or burn much, and had no oozing I was aware of, but it did have a crust along the outer edge on one side).
2. A sore on your nipple that will not heal. (Mine was on the aureola area with a whitish thick looking area in center of nipple).
3. Usually only one nipple is affected.
How is it diagnosed? Your doctor will do a physical exam and should Suggest having a mammogram of both breasts done immediately. Even though the redness, oozing and crusting closely resemble dermatitis (inflammation of the skin), your doctor should suspect cancer if the sore is only on one breast. Your doctor should order a biopsy of your sore to confirm what is going on. They will take a sample of your breast tissue in that area to test for cancer. If the cancer is only in the nipple and not in the breast, your doctor may recommend just removing the nipple and surrounding tissue or suggest radiation treatments.
Had my doctor caught mine right away, instead of flaking it off as dermatitis, perhaps they could have saved my breast, and it wouldn’t have gone to my lymph nodes. This message should be taken seriously and passed on to as many of your friends as possible; it could save someone’s life.
My breast cancer has spread and metastasized to my bones after receiving mega doses of chemotherapy, 28 treatments of radiation and taking tamaxofin. If this had been diagnosed in the beginning as breast cancer and treated right away, perhaps it would not have spread. I did try to spread the word through Rosie O’Donnell show on breast cancer awareness, but it failed to trigger importance enough to announce on her show last year. This is sad as woman are not aware of Paget’s disease. If by passing this around on the e-mail, we can make others aware of it, and it’s potential danger we are helping women everywhere.
Please, if you can, take a moment to cut and paste this information into an e-mail and share it with a friend. It only takes a moment yet the results could save a life.
Please pass this on to as many people as you can”.
Thanks again for telling us, dear Sue.  I had never heard about any of this.  Take care and hugs!!!  🙂

Saturday October 6, 2007 – 10:19pm (CDT)

• SansSouci

See how many questions there are! And great ones.
1. The American Cancer Society info is here:http://makingstrides.acsevents.org/site/PageServer?pagename=MS07_EA_wheredollarsgo
it’s an interesting page.

2. I didn’t know of any genetic factors, I was never asked about my father!I thought about his family and made the connection later on. I always had a false sense of security! Interestingly enough, 4 women in my school building had breast cancer in a short time of each other–who knows??

3. I had absolutely NO itching or symptoms of Paget’s until after she started cutting and doing the lumpectomies!

4. No, breast cancer is not always estrogen related.

5. That is what made this so difficult for me to accept. Let me start by saying that my friend’s mom had a lump and it was removed and she received radiation. The cancer came back and she had to have the mastectomy!

Things happen, there is no guarantee! In my case, between Jan ’04 and June ’04 there were more microcalcifications which are indicators of blocked ducts, usually linked to carcinoma in situ. The doctor could not get a margin that was clear when she went in for the 3rd time. If it was spreading there was no way they could center the radiation. And because there was no lump and it was early, chemo probably would have been overkill–it can be very damaging. And quite honestly, I cringed at the thought radiation. There were too many areas–it was a crisis waiting to happen. So surprisingly, even without a lump there can be these consequences.

There are so many things to consider. Luckily, because it was caught early, no radiation–nothing to radiate, no chemo–cancer is gone, it hadn’t spread. The oncologists felt I shouldn’t take Tamoxifen because the tumor they found was so tiny and not estrogen related Tamoxifen block estrogen receptors. So you see, here I was in the early stage and still needed “The Full Monty!” So it varies case to case!

Saturday October 6, 2007 – 11:30pm (EDT)

• sugar

I have never heard of Paget’s Disease.       Happy Belated Re-Birthday!!!!
You said you breast looks good, no one would know what you have been through. I curious about the tissue they harvested from your abdomen, how does your abdomen look? ( if I may ask)

Saturday October 6, 2007 – 10:33pm (CDT)

• Frida…

Dear sue,  Thanks for replying to “the reporter”.  Ha.       I read a bit more at the American Cancer Society site (a medical site).        It says there that the recommended procedure in those cases is a mastectomy.
And I think you are right. If they came to me and found something, and it could spread fast or be very dangerous, it’s best to remove all of it (instead of getting chemo and/or radiation). If they asked me what to do, I guess I’d say: just remove it but check the lymph nodes too.
It must be pretty hard, though.  You’re so brave!
I’ve been through many very difficult situations, even medical (my brother died of AIDS, as you know). I went to the 1,000 specialists with him each day, even through a cerebellum biopsy at UCSF (one of the best Neurosurgery hospitals in the US).
However, I have never once in my life been open (I don’t have a single stitch). NOTHING regarding medical procedures on my person. Well, only my eye laser correction (but that’s nothing!).
It must be so scary!  *I almost cry*       I’m a big chicken for that and I am totally alone, imagine!  🙂  

Saturday October 6, 2007 – 10:48pm (CDT)

• Sans

@ Sugar
The procedure is what many women run for in plastic surgery–a tummy tuck! There is not more belly! There is a scar but it is covered by the usual. Funny! I didn’t know my belly button was going “belly up!” Bye!       They created a new one and I didn’t know!
It was a long healing process, very uncomfortable. I have a large abdominal skin patch on the reconstucted breast because of so much cutting. You can scroll back to Dr. Keller’s link on a recent blog and see some of the reconstructed women. It’s very interesting. He is one of 2 doctors who uses this procedure and is training others.
I just want women to know that NOT all breast cancers are alike, there ARE different stages, types, and Moni, the removal of the sentinal lymph nodes is protocol. They have to make sure it hasn’t spread.
And don’t be scared, if you are ever sick I’ll be there for you!
xoxo

Sunday October 7, 2007 – 12:03am (EDT)

• Frida…

Another comment, sorry.
It really AMAZES me that even today, at hospitals we are still MERE BODIES. Of course it is only natural to have had all those sleep alterations, bad dreams… sounds like a Post-Traumatic Stress Disorder. Quite naturally: Cancer is a deadly invasor! Yet, the psychological impact is still not taken into account. It is not faced, not treated, nothing… as if it didn’t exist. That really surprises me… I am happy for all my volunteer work at the Red Cross Emergency Hospital here. Each and every patient was taken care of in both aspects (crises of all kinds were the everyday thing). Sometimes we even did consultation for GPs, nurses and even Social Workers there. There is a lot of continual stress in that hospital.
I am really glad for our pioneer project there! It’s important. All emergency hospitals here have an active Psychology Department, specialized in Crisis Intervention now. I am very glad!

Saturday October 6, 2007 – 11:07pm (CDT)

• Sweet…

Sue:
I been here a while this evening finishing up all the links, reading the postings and viewing your battle victorious with breast cancer. I know you carry this with you each and every day…and I would imagine the joy discovered on the other side of this health crisis is simply divine? I think one of the most courageous things any cancer surviver can do is open this part of ones very personal journey up to the world to help others. Thank you for sharing..thank you for the insiders view of this all too common problem. YOU DID IT!!!

Sunday October 7, 2007 – 12:31am (EDT)

• SansSouci

Sweetie, I guess I did! I put it off for a very long time, it was too hard to face. So much crammed into a very short time. Moni, Yes it IS like Post Traumatic Stress. I probably should have been going to Dr. Keller’s monthly support groups and I couldn’t get myself over there. I wanted to leave it for awhile. But it never left me.
I became so disoriented a fearful I didn’t want to leave the house, it was too much, just doing normal things. I felt I needed to be coocooned. For quite a whil I was panicking that it was going to reoccur.       Then I had to step back and tell myself to calm down and not MAKE myself sick.  Sometimes we are our worst enemies.
The blogging has helped me tremendously in 6 short months.  It gave me the “right” to write, and it all led up to this.
Thank you Sweetie, it is divine joy. Thanks Moni for leading a forum and Sugar, for the question.

Sunday October 7, 2007 – 12:39am (EDT)

• Frida…Thanks for sharing all of this with us, I hope many more women read it!

I have to say your opening your heart to us, and your full experience lead me to read quite a bit of the Mayo Clinic site. It’s excellent information. I didn’t know a lot of things!       We should be better informed about Medical situations.
For example, I had known about the 0-IV Cancer Stages (like a severity classification?).
You were in stage 0:
“Stage 0 cancer, for instance, indicates a non-invasive breast cancer that is contained within the duct and hasn’t spread within the breast. Some doctors consider stage 0 cancer not a true cancer at all but a predictor of breast cancer”.
So from what I’ve read, you ACTED IMMEDIATELY, which is very important. Also, your doctors took no chances and were excellent in diagnosing.
PS I imagine that removing tissue from the stomach means a very slow, painful recovery. We use those muscles for everything!
Thank you again!  This is SO informative! Hugs!   🙂

Saturday October 6, 2007 – 11:50pm (CDT)

• Lori

I’m so glad you ended this on a happy note :-). You know you’ve had me crying. I’m so glad to know you’re all better. And I’m sure you have touched many lives with this trip down memory lane. Thanks for sharing your story, my friend.

Sunday October 7, 2007 – 12:04am (CDT)

• * Ste…

I have been so moved by the sharing of your story, quite often to the point of tears. You have touched the lives of those of us who have read of your journey……from there we share it and it goes on. Never underestimate the impact you have. You are a strong woman and your inner soul shines through in all you write. ((((((hugs))))))

Sunday October 7, 2007 – 01:29am (EDT)

• Papa …

Painful and tragic experiences often strengthen us so if faced again by a similar nightmare it will not be as intimidating..it as if you are now initiated into a special group who has faced the horrors of life and rised above it..experiences like these make the rest of our challenges look small and petty giving us a more mellow view of life..it is the price we seem to have to pay to enter this stage of maturity.~~Papa

Sunday October 7, 2007 – 12:36am (PDT)

• DaniB…

Sister, thank you once again for sharing your amazing story with me and all. The more I went on reading, the stronger I felt: your experience is so enlightening, hopeful, you managed to transform a tragedy into a useful, even positive human lesson that transcends the ages and even the genders. Should something similar ever happen to me – of course I don’t wish for it – now I’d know how to face it, bearing in mind your strength and undefeatable smile. I don’t know if they organise marches in Italy, but I’ll be able to send a contribution to any worthwhile organisation locally. I thought maybe you could make a suggestion, having a better in-knowledge. Amen.

Sunday October 7, 2007 – 12:18pm (CEST)

• Fuzzy…

I was very affected by your story and thank you so much for sharing it. I had not heard of Paget’s before so among other things, I learned some valuable information from you.
I am so glad this all turned out well for you, I just know your attitude is one reason why you conquered. And sharing as you did will result in other women having the courage and positive attitude to beat their cancer.

Sunday October 7, 2007 – 08:51am (EDT)

• SansSouci 

More- Moni I think it may have been Stage 1 as a tumor was already forming,a small one was found. This is why early intervention is so important, as is vigilance.       I am so moved, awed and grateful for these comments.  Maybe they should be a blog–but they must be saved!       With love,       Sue

Sunday October 7, 2007 – 10:41am (EDT)

• heidi

As the old cliche goes you’v come a long way baby so now keep moving forward and we will move forward with you.

Sunday October 7, 2007 – 08:07am (PDT)

• AB

:0)
I wonder if you can tell this feeling it as a memoirs with no pain. I mean.. I guess at the time was physical and mental.. now maybe it is the elaboration of all what happened… It’s true you’ve been lucky. Even if we check yearly you never know if the doctors will be so accuratr to find it as it is starting. Even if someone takes into consideration each time she goes through a test that it can happen to her too… one is never prepared. Did they tell you about the hard recuperation for the new implant? I have a friend who is thinking to have a new breast after a mastectomy but she is worried about getting rid of her abdominal muscles.       You’re an extremely courageous and generous woman. :0)))

Sunday October 7, 2007 – 06:52pm (CEST)

• Sans …

AB, This is important:

In this procedure NO MUSCLE is taken from the abdomen. NONE! Only fat and skin. No foreign implant! NONE! this is a UNIQUE, RELATIVELY NEW procedure and it is not widely done. It is UNLIKE the old procedures. Look at Dr. Keller’s site and you’ll see. In the OLD procedures they took some muscle; this can cause weak balance and affect the whole body. It weakens one’s core. And the implants are foreign and can cause a reaction.
The beauty of this procedure called the DIEP Flap, is that it eliminates all the side effects of the old procedures. It is a very long procedure because of all the micro reconnections. My recuperation was mainly discomfort, but there was NO muscle loss, I want to make that clear. Muscle loss however small from the core has difficult effects. As for the breast, it is filled with MY fat, and there is no danger of rejection. Dr. Keller is a champion of women. Women fly in from all over to see him! His web page link is in a previous blog. Let me know if you can’t find it. Maybe I shall index it…

Inserting a link to Dr. Alex Keller here. You can see the comparison of different procedures and why his is so superior. Also results of reconstruction. (not mine)
Sunday October 7, 2007 – 01:02pm (EDT)

Addendum: Dr. Keller has retired.

• Tee-b…

Read through this all…the questions and experiences from your friends, and then your “answers” . They were eye-opening and sobering, but SO neccessary–I tend to push the thought of cancer, especialy breat cancer out of my mind because of fear. Thanks for being so brave about this–and I can certainly see why it took you a few years to come to this point where you are so open about the disease and it’s toll on you.

Sunday October 7, 2007 – 08:41pm (EDT)

• Frida…

Dear Sue,
Thanks again for this series of so personal, perhaps painful blogs for you.
You can be sure that at least in my case, I am much more aware and knowledgeable about the subject. I won’t make any more fusses over getting a Mammography (as they are called here). I personally dislike them because I am so petite, the machine doesn’t seem planned for a body as small as mine. Involuntarily, I shake and shiver and the X-ray technicians get impatient, as if I was shaking on purpose! I just can’t help it.
Thank you so much for helping me learn a lot about something so important. I will be very attentive to changes from now on and will punctually get my Mammography (every 2 years until I reach 50; every year from then on). –Go to the Gynecologist immediately if I notice anything different.
Your series of blogs helped me in many ways.
For sure, it takes a while to digest such a painful, scary experience. I can only imagine how it feels when the cancer has spread (to the bones, lungs, liver, breast muscle). Also, when they go to chemotherapy or radiation therapy. The vulnerability. I think leaving the “Why me?” stage must take so long itself. Or the rage: lashing out at others. In the case of my brother, I could understand all of that very well.
I think how can an experience like that doesn’t lead to Depression? Some things are so difficult I sometimes wonder if a depressive reaction is not NORMAL? I have always wondered about that.
But leaving everything aside, I also wonder if this awful experience didn’t change you in other ways? AIDS, even if indirect, changed my life completely, forever.  In a most wonderful way, paradoxical as it may seem. I am not thankful towards AIDS because I lost my brother. But in other ways, I am very thankful for having lived through that.
I became profound, reflective, appreciate of simple things. I met God (in my own personal way). I define myself as spiritual. I guess I grew up a lot.
Did this experience change you in those deep ways?
Hugs!    🙂   

Sunday October 7, 2007 – 07:49pm (CDT)

• Papa

The very touching responses of your readers is a good indication how deeply you moved them and how much they appreciate your sharing your experiences with them..you wrote an outstanding description in vivid details not only what was happening externally but even more important your deep emotional experiences.~~Papa

Sunday October 7, 2007 – 10:00pm (PDT)

• spazz…

Sue, I was blown away by the outpouring of responses! I am so sorry to have been away so very long, I have been totally immersed in being a new wife and raisng three additional teens with my two! I had also never heard of this disease, but I am glad to know of it, in the event I can make a difference with this knowledge.I read back several blogs, but will just leave a comment here for now, because I have so many comments to respond to. Your blogs are always encouragement, creativity, and love all rolled into one!I have so very much missed your blogs and I hope I can manage my time better now so as to keep in the loop! Love and Hugggs! …Kari

Monday October 8, 2007 – 12:22pm (CDT)

• Sweet…

Sue..so, I think your mission of helping others is a success by the comments and insights gained by your story! Thank you…sincere,bonfide thanks,my friend!

Monday October 8, 2007 – 03:41pm (EDT)

• Nicho…

A mind-blowing blog, as is everyone in this series… Reading the experiences of someone who has actually been through this odyssey is eye-opening and emotionally involving. Thank you for making such a personal journey a guided tour. I am sure that you are helping many many people enormously!

Tuesday October 9, 2007 – 08:09am (EST)

• AB

Hi, :0) I read all the website of doctor Keller. It is really amazing!! My friend brought me brochures in which there were only the operations with muscles taken from the abdomen or the back. They warned about the painful recovery and how it was difficult to manage the lack of those muscles.
In Italy the operation is totally free going trough the public system. Private system doesn’t work on such operations because the reimburse to the patient is only 19%. It’s a pity. It really helps a lot psychologically the thought of recuperating physical features. I hope it will be introduced here too. Tx again for sharing. :0)

Tuesday October 9, 2007 – 06:18pm (CEST)

• Haden

I think you are doing so much here–more than you even know. Good Job

Monday October 15, 2007 – 08:40am (VUT)

• Lex

You’re stories and life experiences are a guide line for others here. Especially women. I learned a lot from you. Thx so much for spending your precious time for telling all of these. Mean so much to me. Have I told you that I’m so proud of you? (^O^)v

Friday October 19, 2007 – 02:29am (ICT)