Class of 2009 - Sisters in the same time frame
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Sugar, I didn't take it for my first session, and I felt like I was going to crumble into a pile of bones on the basement floor...This time I thought I would give it a shot...can't hurt, right? So far so good.
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Thanks everyone for the warm welcome. It's so nice to be able share ideas/feelings/concerns with others that are going through the same thing. I think this is an awesome site and an awesome group!
Renee: I have said a prayer for you and will continue to pray. I'm sure it is very painful. I hope the cream helps.
Alicia: I will be praying that everything goes well with your husband and that all of his tests are negative. Try not to get too stressed out about it... I'm sure it's hard. Praying for peace and strength for you today.
Juannelle: I don't know what they were thinking by telling women to wait until they were 50, if I had waited that long, I wouldn't be here! I'm glad your day was brightened by the gift of your old school mate. Surprises are always nice.
michelleboots: glad to hear you are getting lots of support from family and neighbors. Hang in there!
Sharon: Welcome to the group, sorry you have to be here though. I will be praying for you.
Hugs and best wishes to all of you today!
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Hi Sherri,
Nice to meet you. I'm glad you joined this group! I'm also glad to see your doctor was able to catch your bc early with his screening program, but sorry that you have to go through all of this. Happy to hear your SNB came back clear!! When I was diagnosed, I walked around in shock for a little while, but came to terms with it quickly. It sounds like you have also. Welcome to the group, there are a lot of GREAT ladies here.
Debbie
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grrr just lost my post...
Debbie thanks for the prayers.
Pam so sorry about your neighbor's child. That is soooo sad ~
I too try to tell myself while this breast cancer could kill me someday. I can't obsess about it ~ "Tomorrow is guaranteed to no one." 
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Thank you all for your good wishes and prayers. On Tuesday I'll know if my cancer has spread and whether I can have my mastectomy or have to undergo chemo first. One of the posts mentioned a port. I had forgotten about that. My husband had one. This is all so scary but I understand that it is not unusual and you can only take one day at a time. There is so much to learn about chemo, radiation and surgery..my head is spinning. I hope you will all forgive me if I ask questions as this unfolds, questions that you are answering now to others, but the information is too much for me to absorb at this time. ie, burning, nausea, etc etc. One of my daughters is with me this weekend. I think we will go to the mall and look for some "big" blouses so I won't have to shop that much after the mastectomy in order to go out in public. Doctor says I am not a candidate for reconstruction at the time of the surgery. Is that common with a radical mast due to IDC? How long is the hospital stay? How do you feel after the surgery and how long will my daughter have to be at home with me before I can take care of myself? How long does one usually have to stay out of work? If I am lucky enough to have the surgery right away, which means the cancer doesn't appear to have spread, how soon after is chemo usually started? So many questions..I'm still waiting to wake up from this nightmare.
My very best to you all.
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Sharon and Sherri - Welcome to both of you!! I'm very sorry that both of you have to be here but glad you found this board. There are a great, wonderfully supportive group of women here. Sharon, try not to worry to much, and wait on the test results. I know that is very hard to do, believe me we all know how hard it is. I waited 9 days for mine, when my surgeon told me he would know in a week and I hadn't received the call. He did make a point to get back very quickly, actually in the same day with the results on my MRI. So hopefully you won't have to wait long. We will be waiting and praying with you and whatever the results we will help you through it. :=)
Alicia - I'm sorry that your husband is having to have more tests. Try to be patient and be positive. Still praying for things to turn out benign.
I still have my burn under my arm it looks a little better. It looks like I have a slight radiation rash as well over my breast (hopefully there will be no itching). I'm still using the creams (I have 3 different kinds). LOL! Can't wait for this to be done... Hopefully the break of a few days for the weekend will give me some relief.
Renee
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Sharon -- did your doctor say why you're not a candiate for immediate reconstruction? It's not really immediate reconstruction so much as immediate Tissue Expander... which then gets filled once a week (or once every two weeks) with saline to stretch the muscle and skin to make room for an implant (either saline or silicone). Also, re: ports -- I have one. Was really upset when I had to have it because I found out I had not been told I'd need chemo until I went for my SNB and second lumpectomy and was asked to sign permission for the port. It was because I was HER2positive that they knew I'd need chemo before they knew if nodes were involved. I have to say, though, now that I'm done with chemo (and still having herceptin) I am GLAD to have it. MUCH better than having to get an IV once every few weeks. It just makes it easier for them to deliver the regular chemo.
What is your diagnosis Sharon?
Cheers,
Lilah
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Sharon ~ I had bilateral mastectomy with tissue expanders put in place. Then like Lilah said you get filled every 2 weeks or so and then have implants put in when you are stretched/and or done with chemo. I started chemo about 5 weeks after my surgery. I was in the hospital for 2 days.
Hang in there ~
Alicia
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Good evening everyone, I hope everyone is having a restful weekend.
I have finally had a productive day. Got the Christmas decorations down and only need to make two more trips up the stairs to get them put away. I have also been doing some general cleaning, putting stuff away. I have been watching those shows on TV about hoarders and I think I was on my way. It might have taken me 20 years to get as bad as some of those people on TV, but I do hate to get rid of stuff. I think the difference in those people and me, is that I have a place to put my stuff.
Good night all, take care and peace to all.
Juannelle
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Sharon, I was told that reconstruction wouldn't be done for me until I was done radiation...I guess they want nothing in the way of the radiation...as well radiation could damage any work done...I don't mind...I am one for doing one step at a time..
I had mastectomy on my left side...I was only in the hospital for one night, thank god as it was under construction and very noisy...it was not painful at all and I needed no meds for pain. I did take it easy for a few days after...I didn't go back to work after, as my Doctor told me I could not. I wish I had, as it would have kept my mind busy...I didn't start chemo until 2 months later...a long time to sit around. I didn't get a port, I have a PICC line in my arm. I am only getting 6 treatments. If I was getting 8 or more then I would have gotten a port.
I hope that answers a question or two...but as you know we are all different. And treatments are different from place to place...take it one day at a time and try not to worry...I know easier said than done.
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Yeah I got the port because of the Herceptin -- which I have to get for a year. If I had only had to have 6 treatments I would not have needed one.
Also, for what it's worth, some on this site have had radiation after TE expansion... check out the Exchange City thread for more info. There's also a new thread about TEs called BREAST IMPLANTS 101 which has good info about that.
As for chemo, what you are treated with and how long and how much is entirely dependent on YOUR diagnosis... and there are many factors involved. Have you met with an oncologist yet Sharon? The best person to answer questions about chemo treatment is the oncologist; best person to answer questions abuot surgery the Breast and Plastic Surgeons. I did not need radiation because I chose to have a mastectomy. Some women who have MX, however, DO need radiation (I think if the tumor is close to the chest wall but there may be other reasons as well).
Cheers,
Lilah
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Juannelle- Your post to Vivian gave me also so much information, I got my notebook out and took notes. Thank you so much.
Pam - I too am so sorry about your neighbor, the loss of a child effects a whole community. My prayers go out to you and the family.
Lilah - I too am HER2+ and they have not mentioned chemo to me as of yet, I had a port in years ago, not looking forward to another I'm hoping not. Today I got a call from my GP (on a Saturday) to see how I was doing. She has been worried that I haven't had MX yet. She said they are worried about it now in my arm near the elbow, so when I meet with the surgeon next week they will do a fine needle aspriation on it, and take the mass out when they do the MX. The Oncologist and my reports say that my tumor is next to my chest wall, I knew that from mammogram and ultrasound though. Maybe that is why they said after all doctors spoke that they want to do radiation and will watch my reaction and infection levels?
Here is a stupid question, forgive me but how does Claritin (if it's the over-the-counter for allergies) help with bone pain from chemo? Is it a different type of claritin?
Hoping that everyone is having a restful weekend.
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M360 -- after being diagnosed I had a lumpectomy June 2, 2009, at which point they thought I only had DCIS. Then the pathology report came back a week later: invasive cancer. (This IDC, by the way, was NOT seen in the MRI I had prior to surgery). And my BS at the time scheduled a second lumpectomy and SNB for two weeks later. On the morning of June 23 I show up at the hospital for my second lumpectomy and SNB and find out they plan to install a chemo port. BS had not said anything about chemo in fact he had said: "NO CHEMO, JUST another lumpectomy and then radiation" when I had seen him two weeks earlier. I insisted on talking to him before I signed consent forms. Hours later when I was finally in pre-op he comes to my bedside and says: "Oh there was a secondary pathology report that showed you are HER2-Neu positive, which means you have to have chemo regardless of results of SNB." I was devastated. I am 20 minutes from being put to sleep and he is basically telling me "oh by the way, you have to lose your hair and go through something horrendous" (well those weren't his words, just what I heard) -- he claimed he had not known until that day but when I obtained a copy of the secondary pathology report it was dated a week before. So I am guessing he didn't look at it until that day. So this is to answer your question about HER2 positive -- it's my understanding (and this was later confirmed by my oncologist) that you DO have to have chemo when HER2 positive because the treatment for HER2 is Herceptin, which is not chemo (a drug you get for like a year, once every three weeks, delivered in the same way as chemo)... but studies have found that Herceptin is more effective if delivered with regular chemo (in my case 4 rounds of Andriamiacin and Cytxoin every two weeks, dose dense, followed by 4 rounds of Taxol every two weeks, dose dense; the herceptin was started when I started the Taxol).
So, getting back to June 23. After all that happened that day and after meeting my oncologist a few weeks later, who I love, I found another surgeon. And chemo was not the horrific experience I thought it would be. It was challenging. And I grieved the loss of my hair but then I reasoned it would grow back and I would be surviving cancer and so I got past that. And then my new surgeon told me it would be better if I had an MX on my right breast (the second lumpectomy result was three clear margins and one that was "close" so I needed to do something more there, according to standards of procedure) and now I have had that too and I thought that would be the end of all the joy in my life and it has not been. I still sometimes wake up thinking it all must be a terrible mistake, but joy is still here in my life and now I feel I have a really great chance of surviving for a long time. I tell you this to say: I know how you feel, I know it's terrifying and awful, but the best thing you can do is gather the information and make the best, safest choice for your survival. This site is best for giving you an idea of what on earth to ask your doctors as you go forward. My first BS did not even tell me how in pain I would be from SNB nor did he give me ANY information about the potential for lymphedema I would have for the rest of my life (nor any info about exercises to help restore strength and motion to my right arm). I had no idea I even needed to know all of that and because he did a perfectly lovely job on my first lumpectomy, I thought he was a thorough surgeon and assumed he would have told me everything I needed to know, but he did not. You live and learn.
And even though after my Right MX the pathology report on the tissue was that I had no cancer at all (so my joke is: good news is "no cancer," bad news is "they had to remove my breast to figure that out")... I am so happy to be cancer free I just don't care. And the new breast will be fab (and I'll get a lift/reduction on my good breast too) so I look ahead with anticipation to something good coming out of all of this in the end.
Cheers,
Lilah
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Edited to redact a post with personal information.
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M360, I am not sure why the Cleratin works, but it does for me...last treatment I could not walk or sleep...this time I am tired, but that is about it...NO BONE PAIN...AMEN. I did talk to my dr. and she could see no problem taking it...But I would still talk to her first...
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Lilah,
How comforting your story must be to someone beginning your journey. How wonderful of you to share. There is no substitute for this site and the insight all you women can provide.
Groundhog,
It sounds as if you have wonderful people around you who are going to look out for you in every way. You are going to make it just fine. And what is it about men and recliners?
Your "library" is just what is called for here... pure escapism. Wishing you the best.Pam
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Groundhog -- I know what you feel! Before my surgery I did EVERYTHING I could think of that might need doing for like the next 6 months.... irrational really since I was really only laid up about a week or so. I don't have a recliner and wish I did... getting up and down from bed was really tough the first few days after I was home (and I only had a uni MX). I used my good side to lever myself up and don't know what I would have done without it. You might look at the cost of renting a lazy-boy (instead of buying). The good news is that whether you have a bi or uni MX they encourage you to get moving (I had exercise class in the hospital the day after my surgery and was told to do these exercises 5x a day!) The exercises helped a lot with motion and now are helpful with post-fill pain... as the muscle is gently stretched. I was driving after a week (might be two weeks for a BMX) and now am a month out and gaining strength every day. You mainly have to avoid weights (I was told nothing more than 5 pounds for awhile) and things like pill caps can be maddening if you have the child proof kind (I recommend decanting to easy open containers or, as I did, leaving them only partly closed so you can reopen easily).
Cheers,
Lilah
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Lilah, THANK YOU, THANK YOU, THANK YOU, you have given me such confidence and belief that no matter what I can overcome this all. From all that I have read on this site, I got a second opinion. All your infomation helps me to ask questions that I would have never thought of otherwise, and to take a recorder with me so that I can really hear their answers and relisten to what is being said because in the moment I don't hear somethings. They have already planned to take out the glands in my elbow area but want to see if this golf ball that has formed there is also cancerous. Never once considering my problems with lymphedema. I do lymph massages, and have my sleeves, so I'm prepared. Lilah I was told my swelling would never be controlled, but it has, and Lyrica controls my nerve pain. My worry, will it all come back? I'm someone who feels going in with knowledge is half the battle. The knowledge and experiences I have heard from all the women, truly helps me prepare myself not only with the battle with BC, but also how to get my family and home ready for after surgery and during treatment. Doctors don't tell you all this, it's all of the women who have come before me that have given me information and hope, which I had none. I really felt, I'll wait and take my chances. I really didn't think my body or mind could handle any more surgery and radiation, if chemo, what it would do to my stomach. I had asked for a break from doctors for six months, weeks before I knew I had BC.. All I know for sure is I care about each and everyone of you women here. I know now that I can make it through this, which I didn't last week. It is because of all of you. I sit here crying, thinking how strangers can give me such hope and understanding. Words cannot express my gratitude.
Lilah I've come back to ask you one more question. In my path report it says est+ in nearly 100% of tumor cells, prog+ nearly 100% of tumor cells, HER2 staining was 2, FISH test is needed to confirm. FISH test showed 2.4, amplification is anything above 2.2 then they wrote negative, but the Oncologist said it was written up wrong I'm HER2 positive by the path reports acutal data, not the write up. Knowing your ratio was yours over 2.2? Wondering if they made a mistake?
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groundhog
Go For the New LazyBoy!
I lived and slept in my recliner for 6 weeks! I could not lie flat and had a hard time changing positions. I would try the bed but wake up and be stuck there until I figured out how to move with the least amount of pain...
I still sleep in the recliner after fills. I am finally done with those, but know I will probably end up there again after my implant surgery.
Kimberly
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Groundhog:
I'm with musiclovermom!! I am so thankful that I had a recliner after my BLM with TE placement. I too had a difficult time transitioning from one position to another. I did sleep in the recliner many nights. I found it much more comfortable than a regular chair or couch or even bed. I could just elevate my arms with extra pillows on the armrests and was sitting upright enough to get in and out without too much trouble. I would definitely check into a rental or invest in one. Take care, TCK
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Groundhog,
Your husband will think the recliner is for him and you will get the benefit of it! Go with the recliner! I don't think there is anything more crucial than being able to sleep in your recovery. A recliner would be such a help. Maybe you could even borrow one?
pam
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groundhog, you will get prayers here. You are strong and will get through this. You have a plan and that is good and you sound at peace.
M360, if you need more information PM me and I will try to give you more. I do think that post covered most of it, but if you have anything specific that you want to ask please let me know. We are all different, but we all have some of the same SES, no matter what.
Well, I have got to get ready for work tomorrow. I don't have any doctor's appoints next week. woohoo
Juannelle
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M360 -- the ER and PR numbers are hormone receptors. I was negative for those. Because I was negative for those, I did not have a FISH test. So I don't know what the FISH numbers mean (sorry). I had a K67 number, which is a measure of aggressiveness, and mine was around 42 (if I recall). If you are not sure you can trust your oncologist, it is okay to get a second opinion about the numbers. I do know that sometimes they start out saying the HER2 is inconclusive and then further tests show something more conclusive. In my case, after the initial biopsy, it said I was negative for ER and PR and made no mention whatsoever of HER2; that came up after first lumpectomy, when they had more information to go on. I have since learned that stereotactic needle biopsies are not great at detectiing HER2 because it's often too small a sample. It also did not detect the invasive cancer. So this is all to say that information is gathered over time from a variety of sources and you have to trust your oncologist to know what he/she is doing. And you can always get a second opinion (even if you do trust him/her).
Glad that what I wrote was helpful!
Cheers,
Lilah
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Wow ladies this has been a busy thread since yesterday! Lilah, I agree with you. My breast surgeon did not tell me the same things that yours didn't tell you. He never explained about what would take place with the SNB or how painful it would be, I cried!!! Mine was only 1 wk after my biopsy and I was still very sore after that and my tumor was right behind my areola/nipple area also. He also never told me to do exercises, nor had anyone show me how to do any exercises. When my path report came back all he told me and my family was that he got clear margins... but when I asked for a copy of it, it was difficult to understand. I went and saw the Medical Onc who told me that I only needed to have radiation and not chemo. He had taken it to the Oncology Board and that was what they had decided from my Path report. However, when I went to see the RAD Onc, he explained my path report and it seems that my Breast surgeon only got a 1mm clear margin. I was quite upset for a while and I have contemplated getting a new one, however he did do a very good job with the surgery, especially with my SNB. The numbness has all but gone away and I have perfect range of motion in my arm even without the exercises. I will be seeing him in Feb and there are a lot of questions I plan on asking him. I also see my Med Onc in Feb and I will ask him many questions too.
It's always good to be well informed and be prepared and I wish I had found this site a little earlier and could have posted and asked more questions. That is one thing that I wish this site would change is the 5 question minimum for their new members. :=)
Renee
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What is the 5 question minimum? I never experienced any sort of minimum when I started here...
Sorry you had a similar experience. I think it comes down to this: the more you know, the more you can ask. It puts you in a better place for handling all the stuff that comes at you.
Cheers,
Lilah
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Sorry Lilah, I think it is 5 posts a day until you reach so many... not questions.
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Aahhhh.... I guess at first I was timid and didn't post much (so I never noticed). Hard to believe isn't it? (Me timid lol)
Cheers,
Lilah
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HI everyone,
I too knew nothing about what was going to happen on my surgery day. I thought they would just put me under and operate. What a (not nice) surprise! I had wondered why I had to be there so early. I'm sure IF I had asked someone would have told me... but I did not know to ask. Had not found BC.org yet
I can't imagine why some doctors keep it a secret. Do they think we would refuse surgery? The one thing I WOULD refuse is the mammotome biopsy. I thought that was totally dehumanizing. Not so painful. The information we share here is so personal and helpful. There is nothing like asking someone who has been there!
Stay warm.
pam
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Hi everyone~
On my day of surgery, I had sort of an idea of what I was in for. My BS told me about the sentinal node injections and the needle localization, but I had no idea how painful it would all be. The SN injections were the worst, the needle localization was nothing. The best part was when I was put under for surgery, that way I didn't know what was going on. I am glad I knew and I think everyone should be told what they are in for before the day of surgery. It is scary enough to have to deal with having cancer, let alone the stress of surgery. The one thing I wish someone would have explained to me more was all the pain and arm trouble I would have after surgery from the lymph node removal. That was a shock, and I am still dealing with some discomfort in my arm and it is still numb.
I hope you all are doing well today! I say prayers for each of you every night my lovely BC sisters:)
Hugs
Jen
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Aw Jen I hear ya. I knew about the pain from the SN injections -- has to be the worst thing I've ever had to experience. I was crying it was so painful. They had one nurse there just to hold my hand while they injected my breast (which was already sore from first lumpectomy). A truly horrible and barbaric proceeding - don't know WHY they can't give you a local so you don't have to feel it (but I imagine it's to do with the circulation of the dye).
As for arm soreness -- you absolutely MUST look up the exercises at American Cancer Society website for post-mastectomy. They are designed to restore motion in the arm and I also was in great pain (and could not even lift my arm higher than my shoulder) until I started: shoulder rolls (10 forward, 10 back), arms raised parallel to floor and then circle (10 forward, 10 back), wall crawl (you have to look at website for this but it stretches muscle for upward motion), chicken (make chicken wings and flap 10 times)... if you do this 3 - 5 times a day you WILL get more motion and less pain.
Cheers,
Lilah
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