Class of 2009 - Sisters in the same time frame
Comments
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So ladies, I am freaking out...I have some brownings discharge when I squeeze my GOOD breast nipple...I mentioned to my rads Onc and he is sending me for mammogram and ultrasound...I feel big time stress again...I was almost done this crap...I don't want to start over again...has anyone else had anything like this? I am hoping it is hormonal or a SE from chemo.
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I am so glad you are getting such fast attention. The anxiety of not knowing is the worst. In my opinion we are all so screwed up hormonally that anything can be attributed to that. It's gotta be something simple! Years ago and years after my last child was born, I stopped birth control pills... my breasts swelled and I began to make breast milk! It was brief but a shock. When do you go for the tests? Good luck!
pam
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Michele- I hope it turns out to be nothing. When do you go for your tests? Good luck and please keep us posted. Sending good vibes your way
Pam- I am kind of wondering about Mary (MAGOB) as well. I miss hearing from her. Hope she is just too busy living life to get to her computer. But miss her posts all the same.
To everyone else: Renee, Juanelle, JoJo, Alicia, Sugar, and anyone else I missed, Hope you are having a great day!
Love you ladies
Jen
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Michele - I feel your anxiety. It is such a worry that something else will happen now that we are almost done with this! I hope it turns out to be nothing but I gotta ask - why were you squeezing your nipple in the first place?
Forgive my ignorance but is this something we're supposed to do?
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Michele, good luck on the tests - I hope they turn out in your favor. The odds are on your side that this is not anything serious. Let us know, ok?
Love to you all,
Shelby
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Marie, I had a big flake of dry skin on the end and I was trying to get it off...the out popped this brownish stuff...I know EEEEWWWW.
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Good Vibes to you micheleboots. I know it's hard not to panic but hang tough and think positive thoughts.
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micheleboots: thinking of you! Hopefully it is hormonal. keep us posted.
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Michelle - I'm sending you good vibes. The woman who sits beside me at work had bloody brown discharge from her breast a couple of months ago and all turned out to be fine so please try not to worry.
I hope everyone is having a great day. Our family is in Niagara Falls for a couple of days for March break. We're having such a nice time and it's good to leave the breast cancer/treatments behind in Mississauga for a few days. I almost feel normal right now. I start rads on Monday.
Sherri
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Thank you all for your care and support. Michele I hope all is well with whatever is happening with your good breast. My saga with BC continues... had so much swelling my drains stopped working and had to go to ER. They said oh, you have such lymphedema! So today it was back to Cancer Center, they looked at me in shock, I said this is nothing. They couldn't wrap me because RSD set into my arm. So I had a lymph massage by specialist and my daughter did a class so that she can do these massages at home and they gave her a tape and a book for step by step lymph massage, they want me to do these massages 3 to 4 times a day. Then I was fitted for a torso, arm and hand of grade 1, will pick them up tomorrow. Then met with my ON Surgeon, to find out my BC has metastasized. So another surgery next week. A pow wow with doctors tomorrow on how in the world they are going to proceed. Cancer Doctors feel that I have to have chemo and rads now, immunologist feel that if it has spread this fast, I need to stop all meds and only deal with cancer. Which means I'm back in a wheelchair and no longer able to drive. I feel tethered by BC, I'm such a free spirit who likes to go and do when we need, to depend on other people for everything again isn't what I wanted in my life, but my children don't need to be left parentless, so I will do what they all decide is best for me to keep going on with life. Has anyone of you ladies had phantom breast feelings, I keep feeling like my breast is itching or that my nipple is rubbing on my clothes but there is no breast there. What is wonderful is that it's warm here finally,80 today. Sherri, I love Niagara Falls, especially the Hershey Store (who doesn't love shopping for chocolate), hope your vacation there is full of fun and laughter. I had to laugh on the Shamwow posts, thank goodness for the humor from you ladies, it makes me feel that I can handle anything thrown my way. I just haven't heard of anyone having to have cancer surgery twice within a two week time span, where they open up your chest all over again. Please if any of you ladies have had this happen to you, how well did you heal after being reopened, did you feel weaker after they reopened your chest? I'm just over-thinking this whole thing, I guess I should just proceed and not think so much. Again thank you all for listening and I appreciate all of you so much for your strength and wisdom,
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(((((((M360)))))))) I don't even know what to say, other than I am sending big hugs and prayers your way.
Love and hugs, and PEACE,
Shelby
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M360 I am so sorry you are having o deal with so much, my thoughts a prayers are with you.
I loved the Shamwow, too funny
Sherri have a great time in Niagra Falls we love it there.
I am doing well after my thyroid surgery, will not get the pathology back until next week, it will be a recovery week for me. My calcium levels are low but stable, Endo has me taking Viactive w D says it is very easily digestable. Having to learn about what meds can be taken when.
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So sorry to hear M360. Will this be your first time doing Chemo. and Rads.? I know that you will be do great.
Sherri-Niagra Falls sounds so nice. I hope it warms up for you.
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M360, sending you gentle but big hugs..
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M360 ~ I am so sorry you have to have more surgery. Be strong and fight the fight one day at a time.
Hugs ~
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M360~ I am so sorry for what you are going thru. I am praying for you and sending you big gentle hugs! Please know you have much support here.
Hugs~
Jen
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m360, sorry to hear about your problems. Keep strong and do it one day at a time. I know it is not easy, but we are here for you.
I have been so far behind on posting. I am working some long hours and 6 days a week. For some one that works only 4 days a week, this is a lot more work. I am doing really well from radiation, didn't have any major SEs. No burning, swelling, blistering or fatigue.
Jen, hope your arm is feeling better.
Sherri, glad you got to get away for a couple of days. I am still waiting on the time to be able to go on vacation.
alicia, hope you are feeling better and enjoying your Shamrocks.
I will try to get all caught up this weekend. Have a good weekend everyone, Pam, michele, pauldingmom, carollynn, shelby, marion, mariek, carol, renee, and lilah.
Juannelle
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Michele, Alicia, Jen, Juannelle, Shelby, Carollynn, Paulding Mom, Pam, and all the other women who have been so supportive during these days... Today I went and got a wonderful surprise the woman who put together the fitting and what I could wear on my arm and hand, out of the kindness of her own heart, said to me I'm giving you two sets free of charge. I cried. I want to help you through this hard time without all this cost because your insurance doesn't cover this type of hand and sleeve. I knew the hand alone cost over $130, the sleeve more, and she said, just keep fighting a good fight. I cried, and cried, then she cried. These such things make me truly believe that I can't give up or get frustrated. My big pow wow with doctors took place this morning and they all felt that I had to go full force into treatment and whatever happens to my body we will deal with it as a team as things happen, but that to not move immediately things would get so much worse, the cancer is moving fast as they said. My tumor which was removed along with my breast doubled plus 1/2 more in the last two months, and then it metastasized. So surgery is scheduled for the 23rd, along with them surgically putting a port in my stomach, after that will talk about radiation, and if blood levels get better than what type of chemo can I possibly take, that's the big thing with all my doctors right now. No Enbrel, or other medication til cancer is under control. They will give me steroid injections to control things that have gotten way out of control and to help me stay strong. Something I don't want but have no choice of. I do feel strong today and am ready for the fight of my life. Juannelle, today when I was driving home from the hospital I thought of you and all the other women who work and drive daily with all of this (I truly am in awe of all of you), I said if my sisters can do it so can I. All of you have given me such belief in ones self and that we are all stronger than we think at times. Have a wonderful weekend my dear Sisters In the Same Time Frame, I am blessed to have found you all and I will never forget any of you and your personal struggles and the unbelievable ability to say, guide and believe in me when at times I didn't think I could do this. Thank you Thank you, and God Bless You Everyone.
P.S. I'm now 111c and the size of my tumor went to what the doctors said was larger than 3.9 but it was so deeply inbedded into the tissue and under my breastbone.
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M360, ther are no words to express the strength and hope all of us give each other. I will keep you in my thoughts and prayers.
Juannelle you are a strong woman I hope your strength maintains and am glad you are not experiencing any side effects.
I am feeling pretty good, throat and neck sore but getting lots of rest, no problems sleeping!!
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M360 ~ I am confused ... you had a biopsy and then neo-adjuvant chemo (Pre-surgically) Just looking for more information so I can understand your story. I am praying for you and admire your strength. You can do this............ We are here for you. What is your next step? Surgery, chemo? Sorry if I have missed something along the way.
Hugs ~
Alicia
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((((M360)))
All these ladies have a great love and concern for you, that is so obvious. And your message about how we are stronger than we believe is so true. You have touched me with your heartfelt message and I thank God for the privilege of knowing you and everyone; and being able to share our stories and experiences with such special women.
Praying that you have peace and strength. Psalm121
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Alicia, I will try and be short with my story. I wasn't feeling well, no doctor felt a lump etc, I just had this feeling, so I had another mammogram (I had one six months before and everything was fine) and ultra-sound. They found a mass of 1cm. This was in November. I had a fine needle biopsy with guided image (ultrasound), in one month I went from 1cm to 2cm, it was adenocarcinoma, IDC, that was er+, pr+, and my HER2 was 2.4. in the staining for cancer nearly 100% of my cells were positive for cancer. My doctors told me that I couldn't have chemo or radiation because I have blood lupus, and unknown connective tissue disease, along with arthritis as a secondary, IBS, colitis, etc, all from a 1989 virus I caught while on location for work. I have had over 10 anaphylactic reactions to medications and I can go on and on. All this makes for treatment of cancer complicated. I take Enbrel 50mg every 3rd day, which is a TNF blocker and makes cancer spread faster. However doctors felt to take me off was even more complicated than the cancer. I get connective tissue tears, along with fractures after the tears and then I become paralyzed where I have been effected. Stopping all my meds meant, I would be in a wheelchair again most of the day, and I wouldn't be able to drive, if something happened while driving all the kings horses and all the kings men wouldn't be able to put me back together again. So doctors from Cleveland Clinic which I have been treated at, Standford University, UCSF all got together on how to treat. Which they said surgery. But my blood levels were not up for surgery so they did all that the could and I had surgery last week. I was told by one doctor that I wasn't going to be able to beat this, that's when I went and got a second opinion, and they said let's not say that you can't beat this, let's do surgery and take it one step at a time. I had to hold all my medication which caused me to swell, during surgery my veins kept blowing which I told them in advance would happen, on more than one occasion I've had IV's stop during surgery, where I started to wake up. They had to put and IV in my neck, then in my foot, the IV in my neck caused such swelling from my autoimmune problems and (scoliosis in neck) that they had to move it. They did the SNB with radio isotope and when they opened me up the tumor was bigger than they thought because it was embedded in the back of my chest wall and under the bone, it had arms. They not only took off my breast but a lot of my chest wall, and 12 lymph nodes. I immediately swelled and got lymphedema. But I had this before with my shoulder surgeries, and with both hand surgeries and three finger surgeries (I'm paralyzed in four fingers). The swelling caused my drains to stop working, when I went to the ER as per nurse in ON surgeons office direction, they said oh my you're swelling is over the top. Which we all knew was going to happen but when new doctors see this they are taken aback. So I had to be measured for a custom garment and sleeves. My hand, wrist and arm to elbow are only a 2 my upper arm is a 6 so no sleeve would fit and because I also have RSD and Fibromyalgia it flares after surgery so I turn purple and have pain, I can't have the wrapping for lymphedema. I also do not do pain meds. I've been on 1000 mg of Augmentin 3x a day before and after surgery because infection is a big problem because of the TNF blockers. So when I thought they were going to remove some of my stitches they said no, and the ON surgeon said that the reports show that the cancer has metastasized, six lymph glands had cancer and we need to take the lymphs out of at the bottom of sternum and thorax area and down the left arm. I don't know why they didn't take them all out then I think they didn't feel that they would have been cancerous. They can't give me most chemo treatments. They felt that I would have to have six weeks of rads, but some of the doctors were even talking about that they felt that wasn't possible, and Immunologist and Rheumatologist, along with Oncologist, On surgeon, and On rads specialist all sat down to see how to treat. What they felt was open up the chest again, take out more tissue and more lymph glands. I was told that if this has spread elsewhere be prepared for more surgery. I met with the doctors yesterday and my doctor who is top in the field with Lupus/Rheum, said that they will test my blood again and then by time I'm out of the surgery they will come to some directive on how many and what kind of radiation my body can take and that I can't have IV chemo's even with stopping all my medication, but pill form for a while will be okay but I must be watched carefully.
That is why when this all started I asked if anyone who had Lupus and Rheumatology problems and took TNF blocker like Enbrel could tell me how they were treated and what complications occurred during or after. There was one woman in England that posted asking the same question here and no one answered her. Her doctors told her what I had been told, that you can't have chemo or treatment with or while on TNF blocker and she was told it would take a long time to get out of your system. These medications are they other reason why my cancer is growing and metastasizing. It was the doctors main concern, they said it would spread like fire if it metastasized. This women who posted who had a similar situation said on her post that they said the same thing. She never responded or wrote back, when I wrote to her about being in the same situation. I was worried that she didn't make through BC. No one besides myself ever wrote on the subject or responded to my posts either. When I asked the doctors what happened when people were treated with chemo and rads and had taken my medications, their response is we don't know, we don't know any doctor who would ever try or chance trying. Well I said before surgery if it's life or death, I would be willing to be the first to try. I had to sign papers with the hospital about all this and that I know what I'm getting into. So that is where I am. I will have surgery next week, it's all scheduled. Then they said we will sit down after those reports come in on all the tissue, and lymph nodes come back from the second surgery. I said, what if they are cancer, then what, they said more scans and more surgery. Right now I can't lay on my back the lymph glands along the back are so swollen and sore that I can't lean back. I have lidocaine creams and patches to put on them so that I can try and sit back or lay down. It's a mess to say the least. I am still walking my 2 miles evey morning, I do bounce on my exercise ball for fifteen minutes four times a day, I get lymph massages three times a day, I do yoga and biofeedback daily, I don't smoke or drink and eat almost a completely vegan diet. I take supplements, and I try to laugh daily no matter what. To keep my mind off all this I bought two orchids, I've never had them or raised them, reading, finding out how to maintain these will keep my mind off all the cancer stuff and treatment. Plus it is another living thing that I have control over, and with the powers to be I feel that caring and keeping these alive will be a metaphor for keeping me going. I love my garden and a new beautiful flowering plant to watch grow and bloom with beauty, is how I want to see life. Maybe it's crazy but I need distraction from thinking too much. So if any of you know anyone who has or is in the same situation let me know please. It's mainly how were they treated for BC when they were on TNF blocker for over five years? I've scanned the internet, and everywhere to find something to present to my doctors to say here this has been done, lets try this. But so far nothing. Alicia sorry this is such a long story, it's not the cancer that is the big thing, it's that I've been sick since 1989 with autoimmune diseases (As I stated before, I've been sent to good hospital for those because no one could figure out how to treat them besides surgeries) and TNF blockers taken at such high levels for so many years kills your immune system. They said that they are not why I got the cancer but it really complicates cancer once you get it. That's my medical life story, now aren't you sorry you asked (LOL). Tomorrow I'm going to take a long walk on the beach with my girls and just be. It's so hard for them, they do so much and are wonderful and supportive for being teenagers. They have chosen to put their social lives etc, on hold and for us to just be a family, playing games, talking, looking through old photographs and laughing, that is one thing they bring to the table both have a great sense of humor. My one daughter told the surgeon, "oh more dots and lines to connect, he looked at her strangely, she said when my moms out cold we go and connect the dots from surgery and scar lines and see what objects and pictures we can create. Then when she wakes up she has a Picasso on her body, we do it in color for a full effect. She laughed, he must have been thinking do they really, but this is her humor about all this. If we can't laugh about it, that's when I know they and myself are in trouble.
So Alicia, from the bottom of my heart thanks for caring and trying to understand. It's a lot to comprehend. I hope you're doing better and having a great weekend, and aren't you sorry you asked really! Love M
P.S. I just realized I went on and on and on, I think I really needed to vent but I'm truly looking for answers
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Hello Everyone.
I've been reading a lot of your comments to each other and the support you give is overwhelming.
I was diagnosed April 9, 2009 which turned out to be lobular cancer. After talking to the rad ocon and asking many questions I decided to go for a mastectomy which he and my surgeon areed with me. It turned out that I was estrgoen positive with no lymph node involvement. I am now on tamoxifen (no rad or chemo, lucky I hope) and having some SE, mostly my legs hurt especially when I lie down.
Most of my friends avoid talking about my cancer. Their comments are wow you look great but that don't realize there are other pains, i.e. strain across the breast area and under the arm. However, I fell others have gotten through this so I will too. I also had the misfortune of falling on July 3 thereby needing a partial hip replacement. Some days I'm not sure which of my problems is causing pain, ha. By the was I was 81 when I was diagnosed so I guess I'm lucky it didn't hit me at an earlier age. No one in my family ever had any type of cancer so I was relying on my "good genes" so much for that.
I wish you all well and will check back with you from time to time.
Shirley
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HI ALL
WOW
M360 You have been through too much and it has made you such a strong person , with that and your wonderful family i know when your feeling vulnerable and not so strong that they will pull you through the rest for you ,we are also here to help you through this we know the fears and the burden that you will be going through and we will listen and support you and hold your hand and give you all the cuddles you need all through cyber (those ones are the special ones ) i wish you all the very best with what is in front of you, much love AND THANKS SO MUCH FOR SHARING WITH US
JOJO
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MICHELLE
HI there wow hope there is nothing to worry about its most prob just hormonal they tend to stick around and still taunt us, a big hug to you while you wait for tests and results keep smiling
JOJO
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M360-your story is incredible. You are my new hero. Laugh, laugh, laugh-it does work wonders doesn't it? And Shirley, congrats on getting on with life, even with the aches & pains.
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M360 ~ oh my goodness. You sure have been through a lot. It sounds like you are well informed and weighing all of your options. Possibly the pill chemo will keep the cancer at bay. Be strong and try to be positive when you can. Your orchids sound wonderful and the beach with your girls as well. I am 4 days post reconstructive surgery ~ and spent my day planting some flowers and getting my front porch spruced up. I love to sit out there in the sun and read a good book. And DH just let me order a new sectional set for our wrap around porch so we can lay and read !! I cannot wait for it to come ~ it is beautiful. Anyways blah blah about me. You will be in my thoughts and prayers M ~ hang in there !!! And no I am not sorry I asked ~ I wish I could wave JOJO"s magic wand and make us all BETTER forever ~
Hugs !
Alicia
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Shirley, thank you for sharing your story. I think it helps us all to try to understand where you are and how this is affecting your life. It makes me feel so fortunate to only have BC and have no had any real complications. You are so fortunate to have have such loving daughters, especially teenagers. We do have to keep our sense of humor through all of this. I know when I went to hae my Rad consult, he told me that my margins were not good and I would need more surgery, my cousin and I went straight to DQ and got a blizzard and just laughed, then I got a call and he had made a mistake, typo on path report. My thoughts and prayers are with you.
alicia, can't believe that you are out in the garden planting flowers, you go girl. I did get some yard work done yesterday and it does look better. I usually do all the cleanup in the yard in the fall, but I was sort of buy last fall.
jojo, good to hear from you. How is the weather down under? It is cold in Texas today, 38 deg, which is cold for us. I don't like it, Hope all is well with you.
Hope everyone is having a restful weekend.
Juannelle
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Oh BTW, I took my first Arimidex last night. I will not start my Actonel until the 4/1, that way I can remember when to take it. I am just waiting to see what kind of SEs I will have from it.
Have a great weekend, beautiful ladies.
Juannelle
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JUANELLE,
With your positive attitude and Texas toughness, I can pretty much predict Arimidex will not dare give you a bad time. Don't mean to jinx you :-)
pam
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