Class of 2009 - Sisters in the same time frame
Comments
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echosalvaje- I am totally on the same page as you.
All I hear from people is how strong I am or how great I am doing...
I broke down a lot during rads. I tink it was because I was so tired and worn out. The nurse and the onc would tell me you are doing wonderful. I truly think that mentally the rads was the hardest for me. I blame that on people saying that the rads would be easy compared to the chemo I was on..But I spoke to NO one that had a masectomy and rads or had 7 areas treated.
So going in mentally I had it in my head how easy this would be and boy was I wrong.
I also think the farther out the better we will feel. I know most of my anger is gone and that is wonderful. I think I spent 5 months screaming
Its like a nervous energy that I have now...I cant sit still for too long
I am glad I found these boards because I agree, its hard for people to understand unless they have been through this..
Big Hugs your way..
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Nas14,I guess if they had been watching it for that long and I can see why they didn't do chemo. I went in last December for my regular mammo and there was a spot they wanted to watch. So I went back in July and that spot was gone but there was a new spot that they wanted to biopsy. When I went back for my second mammo in December they sent me to a breast clinic that was already doing digital. So they did the biopsy and it was cancer. I couldn't believe it, that something could come up that fast and they could find it, because mine was .8 cm also. I had a small amount of DCIS also, but nothing to be concerned about. It was all together, so I just had the lumpectomy.
I have felt so good and now I am 1 tx down and have the 3 more to go. I haven't had a bad day yet, I am expecting them today or tomorrow. Time will tell.
Juannelle
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You all always make me feel better about myself... like I am normal or something!
NAS14, Your not doing chemo is tremendously reassuring to me. Seems like everyone I read about here with an Onco over 20 was doing chemo and I was very uncomfortable even though my Drs have repeatedly said I did not need it and I did not want it. Love your attitude and confidence.
Justpayton1, I have been embarrassed to admit how stressful I found radiation. My particular course had me stretched out on the table for long periods of time frequently and I was miserable. I know it was not as bad as chemo but it was not a walk in the park either. I could do better now as I am just less anxious all around but then... there were times I was shaking (from nerves and cold) so much that I thought the therapists would cancel me. But seems like I could always pull it together enough to hold still when the machine fired up.
Caroleh, I dread those awkward moments when you run in to someone for the first time since word got around. I find them easier to deal with when it is one on one, rather than a group setting. I have avoided a couple large gatherings as I did not want to be the center of attention with everyone watching for my and their reactions. Good thing is that now when I go out I tend to try to look my best, instead of my usual "beach community casual," which is beyond casual by most standards. I don't know what I want from people. Certainly NOT pity! Some level of concern, even curiosity is okay. I don't even mind if they say nothing beyond how nice it is to see me. A nice hug is worth a thousand words. It's a minefield, for sure. It did surprise me how much I appreciated cards when I was first dx'd and it was such a safe way to communicate, just required a signature and a stamp. Made me promise myself I would send more cards.
Well, it sounds like you handled the situation with grace and charm!Jaunelle, I hope you have a good week. You have planned for this and have the time off and I hope, to your surprise, you are fine and spend the time shopping or something fun!
Pam
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pj12345 - you are so right about cards! Since my surgery 10 days ago, I've had lots of phone calls from friends, and flowers, but the very nicest thing I got was a card with a hand-written note inside. It was obvious that my friend had spent some time thinking about what she would say, and she said it beautfully, and now I have something permanent to keep, and look at from time to time. Cards and notes are the best!!
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With me, my main source of support came from my e-mail buddies. I sent a mass e-mail out when I was first diagnosed telling them that I needed their support getting through this latest trial. It was the last straw for me after all of the medical issues that my husband & I had over the previous year & a half. They really came through for me in a big way; don't think I could have made it as well without them. I would send out regular updates, & the well wishes & prayers would flood in immediately. I have some wonderful friends here in town, & my DH has been terrific; but my e-mail buddies from around the country really came through in a big way. Usually we mainly keep in touch by passing jokes back & forth, & that really helps take your mind off things, too.
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Nancy, I also sent out mass e-mails when I was diagnosed. The list included all the women golfers at my club, some rv friends, and family members around the country. I sent updates on my schedule for tests and surgery and updates on results. After the surgery, my dh sent out an e-mail when he came home from the hospital. It saved making so many phone calls. I enjoyed all the supportive e-mail replies. I also received quite a few get-well cards from friends and family. Those were much appreciated. Our neighbors set up a schedule among themselves to provide us with wonderful meals the first week. The dinners were usually ample enough that there were leftovers to either freeze or refrigerate for later meals. One neighbor is a chef and his dinners were better than going out to most restaurants! All in all, I was grateful for the kindness showered on me. I was on prayer lists all over the country!
We humans have a big capacity for goodness as well as a capacity for the negative qualities including evil.
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I am having a hard time right now because all the cards and phone calls have stopped.
When I 1st got my dx cards came pouring in and the phones didn't stop ringing. Now its almost like I am old news.
For the 1st time since my dx I feel like I am totally alone. I see my onc tomorrow for the 1st time since I finished rads. I am nervous about that.
It's almost like the people around me have moved forward and I am stuck behind waiting for a direction to go.
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You're not alone, justpayton1. You have a lot of supporters here on bc.org including me!
This web site is such a positive force in my life. I check in daily and read several forums including this one. Most of the time I post but not always. Being able to express myself to other bc sisters seems to be enough sharing so that I can go along with other relationships and not feel a need to share the same thoughts and feelings with those who can't really understand my state of mind. It's true we have to walk in another person's shoes to truly understand what they're going through. A very dear friend of mine went through quite a few years with a dh afflicted with Parkinson's disease. At one point she had to put him in a nursing home because she couldn't handle him physically any more and couldn't afford round-the-clock care in the home. This caused her much guilt. I empathized but only another person in her shoes could truly understand what she went through.
Hugs and blessings to you.
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Good AM Justpayton1,
There needs to be name for the anxiety we all feel when the intense phase of treatment ends, like postpartum depression after pregnancy. Don't we all experience it? You think you will be so glad when it is over and then you discover the frequent treatments made you feel as if you were doing something and now you are doing nothing. It's true ... people, supporters, friends, all do not realize the life sentence a breast cancer diagnosis is. There is just too much media hype about "curing" breast cancer and cancer free outcomes. If you try to tell people it is not that way they act like you are being melodramatic. And all the recent news about "over treating breast cancer and over diagnosing it" makes it seem like we are making a big deal out of nothing.
This site is the only place I feel totally understood and totally understanding. Thanks to everyone for being here!
Pam
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carolehalston- I truly feel I found this site at the right time. I think we all have moments that we just need someone that has been there. The 1st night I read through the discussion boards for a good hour. All the feelings that I felt were right here and I wasn't going nuts. Thank - you for your words and support.
pj1234-Good Am to you also.
Somebody asked me a few weeks ago, How long until your done? And I replied never. The thought will always be there. Not every moment or everyday but it will be with me for the rest of my life. I don't dwell on the fact that I have BC but I resent feeling like I need to "get over it'
Its like the dx sent me spinning and I am finally coming to a stop. I just need to get my balance for a few minutes before I move on....
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Well I just came from a 2 hr appointment with the Oncologist. I start chemo most likely next week. They will call me tomorrow to let me know what day they can get me started. UGH ! I have to have a heart scan this week. They are going no port. So hopefully my veins hold up. I am really nervous and at the same time just need to get moving on the next step. I need to know in my mind I am doing everything I can to try to prevent this from coming back. (Oh and it is the usual cocktail 16 weeks, every 2 weeks the AC and the T)
Hugs girls...
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JustmeAlicia,
I know it must be scary to face this next phase in your fight. I hope you find support and comfort here with your sisters who have gone through it before you and from those of us who did not have chemo but are with you in spirit. Just tell us how we can help!
FIGHT LIKE A GIRL!
Pam
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I see on the posts that many woman gets various tests to see if the cancer has spread. I've gotten none and was told the MRIs show too many false positives and radiation would take care of any additional cancer in the breast. Regarding other scans, was told that cancer would not show at this time as it would be too small, if there. Can anyone tell me if this is good that they don't feel I need further tests? Their reasons seem logical to me but than I start fretting when I see that others get them. I've been told that they feel that I no longer have any cancer in my body which makes me feel great. Waiting on results of oncotype DX to determine if chemo is needed before radiation.
This site has been so great in my education.
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Thank you Pam !
Webstertoo.. I asked today for a Pet scan and they told me not necessary as well. Not sure what to think... ?! I will take it as a good thing ~ I believe they feel it is micro if it is anywhere.
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Hi Webstertoo.
I think it is pretty standard to do a lot of screening tests during the staging phase. So prior to my surgery I had CT scans of chest, abdomen and pelvis. Because of chronic knee problems my knees looked suspicious on the CT so I had follow up x-rays of my knees which confirmed arthritis and a MRI showed torn meniscus in both knees. No mets
A spot showed in my lung so I have had two follow up CT scans and only because the radiologist keeps suggesting it I will have a PET scan in December. I don't think the pulmonologist or the oncologist thinks it is necessary but they are going along with the radiologist. I had a bone scan looking for mets in the beginning too. All clear. And a bone density test prior to starting Arimidex. I think all of this is pretty standard... except for the upcoming PET scan. My oncologist runs a CBC and a CA 15-3 every 3 months since I finished rads. At 6 months post DX I had a digital mammogram and will have a repeat at one year. Except for the lung thingee, I think this was all pretty standard. Anyone else do it differently?
Pam
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Webstertoo and all,
I too wondered why I wasn't having any of the additional tests which I read others were getting (e.g. PET scans, etc). I used the www.nccn.org site. I registered first as a patient, but found the info not detailed enough. So I registered as a doctor. I found the Practice Guidelines in Oncology for breast cancer. This is like a Bible for physicians. Everything is based on research. It is a 121 page document. Each Stage and marker (i.e. HER2) has different pathways. So I just printed off the pages that applied directly to me. None of the "extra" tests were recommended for my situation, so I am trusting my oncs because they are following the guidelines. It took me awhile to find my way thru this document because it is a flowchart that refers you back and forth for treatments and is heavily footnoted. Sometimes the footnotes contain vital info. You might want to try the patient portion first to get an overview.
I don't know this for a fact, but insurance companies might also refuse to pay if tests are outside recommended practice. There are other guidelines, but I have only had time to look into this one as it is the "gold standard" of care.
I'd rather be reading a good novel than all this cancer literature!!
Take care.
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Pam,
I did read something about a post treatment letdown and some research about it. I have read so much at so many different sites, I can't tell you where I read about it. I know it talked about people feeling abandoned after such intense medical care for a prolonged period. It is a NORMAL reaction, but is just beginning to be addressed by doctors. Also it mentioned about suddenly not doing anything tangible for prevention and how scarey that feels.
One thing my oncologist mentioned is that the Arimidex is the most effective treatment I would be getting (after the surgery). So just taking the little pill everyday is a huge preventive factor. It just seems so innocuous (sp?) Of course if one has SE's to the pills, then it may not seem so innocent.
Also get some of that Florida sunshine... the Vitamin D is a boost to the immune system. We have had rain, rain, rain almost all of October.
Hang in there.
Kay
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Hi Webstertoo, I really think u should get a second opinion b/c u have (had) a positive node which means that the CA has moved. I had 2 pos nodes (both sentinel) and had abdomen, lung, brain and bone scans. While its true that PET scans have a lot of false pos the individual cat scans are beneficial and if there are mets - they need to be caught early. Its worth it and so r u! Valerie
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Thanks for all the feedback. It's good to know that others aren't getting the tests. My lymph node involvement was .1 cm but will continue to ask questions.
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Hi ladies,
Pam-Hope you had a great birthday! I am sorry I missed it
Juanelle- you seem to be doing really well so far with your chemo treatment. I hope you continue to do well with it.
Addressing the post treatment "let down". I have read about that too, and as I approach the end of radiation in the upcoming weeks I have asked out loud and to myself, "what will I do everyday for that hour I went to treatment?" I will almost miss going there, because at least I feel like I am doing something. And not seeing the rad techs or the doctor will be weird for me. I am not one to go to the doctor on a whim, and now I will miss seeing them. That just seems really strange to me, but I have heard it is normal.
Carol-I have had people give me the "you look really good!" comment also. It's like they think you have to look a certain way when you get dx'd with cancer of any kind. And I can think of times pre-BC that I said that, and now I know how stupid I sounded! But, now being on the other side of it, it is just something we have to take with grace, dignity and a grain of salt
as you did!Take care JustMeAlicia, my prayers and thoughts are with you!
Take care all
Hugs
Jen
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Hi All,
I finally for the results of my lab work from my every 3 month onc visit. All was good. For the first time I was tested for Vitamin D level which got me to reading about it. We get Vit. D from dietary supplements in dairy and cereal primarily, sunlight, and oily fish. Over 70, our skin does not convert vitamin D well AND in the northern latitudes in winter the sun cannot provide sufficient vitamin D for conversion. Wearing sunscreen inhibits Vitamin D absorption from sunlight.
Pam
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It ocurred to me the other day that perhaps the "you look really well" thingy is because people do recognise our ghastly journey, feel sad and scared for us, and are just damn glad if they see us looking pretty ok. Mind you, I was in a good mood at the time!
Watercolour - many thanks for the link.
love to all xxxxxxxx
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I agree with London, recently I was complemented on how well I looked... I returned with was I really looking so bad?? (I have just completed Rads in September and did not have chemo.) The reply was that I really wasn't looking so healthy (skin gray and tired looking) during Rads and that they were quite worried about me. However, during the treatments these same people said that I was looking well!! Maybe they feel that WE need the encouragement to get through the tough times! Be well All!
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Hi, All - Just jumping in to say hello. Doing well in the fifth week post -chemo. Just sleeping, eating, and trying to grow hair. It's an aggressive schedule, huh?
Alicia - sending you strength, courage, and lots of love. We'll all be right there with you.
XO, Mary
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Thanks everyone! Congrats on being 5 weeks Mary DONE! woo HOO hope your hair grows quickly. Juanelle how are you feeling?
Hugs to all !
Alicia
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Hey all-- I was diagnosed IDC april 09, stage 2/3 (2 tumors, if put together stage 3, separately stage 2-- whatever THAT means!) had PET scan, then 4 AC and was switched from Taxol to abraxane. finished chemo sept 16, had double mx with NO recon on Oct 1. Rads start Nov 4--thinking I'll pop my first tamox tomorrow...
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Welcome Christine ~ Hope you are feeling stronger now that chemo is behind you and healing well from the bilat mx. Sorry you are here but glad to have you !0
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Alicia, I feel like I have a mild case of the flu. Aches and pains and tired. I did get out for a walk and that felt really good. Then came home and slept several hours. I slept really sound, probably the best sleep I have had in about a week.
My hat is off to all of you that had treatment today. Just remember rinse, rinse, rinse that mouth. So far so good for me, no mouth sores. Of course that could change tomorrow.
Juannelle
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Christine - Want to add my welcome, too. Sounds like you've really been through the mill--& then some. Hope your recovery continues to go well. Be sure to get plenty of rest during rads. It's known to cause fatigue & will probably be worse when you're already in a compromised state anyway.
Pam - Well, whoop, whoop!!! Glad to hear your mind can be put to rest for now at least. You didn't say if your Vitamin D levels were low. I'm guessing that maybe you might not have to take supplements given the area you live & your walks on the beach.
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Juannelle - Good to hear an update from you. Glad to hear you were at least able to get out for a walk today. I'm sure the fresh air felt good. Oh, the wonders some good restful sleep does, isn't it?
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