Class of 2009 - Sisters in the same time frame
Comments
-
Kathy, I talked to a lady at the Med Onc yesterday and she said the best thing about chemo was no hair. She was a hair dresser and she said it was nice to not have to deal with it. She also said as it grows back in at first everyone still can tell you have been having some sort of treatment. After that it looks like you have a really bad haircut, did you get your hair cut with a week wacker. Then it gets better she said. I just can't wait.
I go to the surgeon tomorrow for the consultation for placing the port. If I can get it next week, then I should be able to get my first treatment. I am ready to get it going, so I can see an end. I want to be posting that I have just finished my last treatment. Maybe I am trying to hurry everything up too much.
Good luck on your last two treatments.
Juannelle
0 -
Juannelle,
I know just what you mean. I think the absolute worse thing about this disease is the waiting! The port placement was no problem. I was actually awake the whole time and talking to the surgeon (he was very surprised). The stuff they gave me that was supposed to make me sleepy didn't even come close. It did take the edge off my anxiety but I wasn't even remotely sleepy. And I didn't feel anything really; in fact I'd have watched if I could have. The surgeon had two students with him so he was training them. Afterwards, the surgeon told my parents that I was a "trooper". Alright then!
Good luck with your port placement and take care,
Kathy
0 -
Kathy, your being awake during the port placement reminded me of a feature this morning on our local tv news program. Interview with an author who wrote about people who are awake in the OR during surgery but are unable to speak or move and let anyone know they're feeling the pain because of muscle relaxers. Horrible thought. I usually don't stay awake long enough to see what the OR looks like. Out like a light and wake up in Recovery.
0 -
Is it too late too join this group? I am newly diagnosed and looking for a group. Would it be better to start a new chain?
Thanks,
Kay
0 -
Hi Anne1962, in March I found a 3cm. lump in my right breast (invasive ductal carcinoma) that was not detected on my mammogram but they could see it with ultrasound. I chose to have bilateral mastectomy. Prior to surgery they did a BSGI on both breasts to see if there was any other areas of concern. The only thing they could see was the original tumor. After the surgery it turns out I had DCIS in my left breast that was confirmed with the post op pathology. This news made me glad that I went for the big surgery and got rid of everything but it also has made me not very trusting of the diagnostic tools we have for breast cancer.
At the beginning of this process two surgeons told me all I needed was a lumpectomy and radiation. I chose bilat because I just didn't want to keep worrying about "things not found" and always having to go get biopsies done for suspicious lumps. Ultimately I was diagnosed stage 3 and had to do chemo and radiation.
All along I was doing what I was supposed to do. Exams, yearly mammograms, yadda...yadda... yadda.....and in spite of all that, this tumor was going along for years undetected (according to my oncologist). Am I bitter? Of course I am. I have two sisters much older than me that each had mastectomy on one side 15 years ago for tiny stage 1 cancers. They're experience is why I was so diligent at getting checked all the time. No one has ever been able to tell my why my cancer went so long undetected, so yes, I'm a little bitter. But as I finish my treatment, I am trying to let go of that attitude and get back into living. The biggest challenge for me now is going to be trusting the machines that are supposed to detect cancer cells in the brain, bones, lungs and liver.....I hope they work.............
0 -
Hi Everyone!
JBurke,
I, too, am large breasted which I think makes Rads somewhat worse. More tissue to complain, I guess. I wore a bra, even to sleep, until about day 25 of TX. Without that kind of support I was very uncomfortable. I also rolled up a soft sock and put under the breast before putting on my bra because that is where my skin was most sore. (Lovely look!) I did finally blister with open skin breaks between days 25 and 30 but it healed up as quickly as it came on. I only used Aloe most of the time because it was so hard to wash Aquaphor off so I felt there was no residue for treatment. BUT when my skin "broke down" I used Aguaphor and was amazed at its sealing-healing power. Most people say things get better when they start the boosts but I felt that phase darkened my skin and affected the nipple more than the whole previous 28 sessions. My axilla is still dark after 4 months post Rads and it took my nipple a good two months to look normal and swelling to mostly go down. I had my first post DX mammogram a couple weeks ago. Good report but my breast has reacted as if I were in the middle of radiation therapy again... swollen, tight, darker, and nipple color change again. This is weird. No sores, thank goodness. But things were just getting back to normal.
Anyway, with all that encouraging news... congrats on making it so far along. The end is in sight!CAROLEH,
You're right to suggest the HRT - Sore Breast story is specious. I took estrogen for about ten years from 1990 to 2000 and was Dx'd with breast cancer in 2009. I don't think think I can give reliable information about what I was experiencing 19 to 9 years ago. Do I think the HRT made my breasts sore? Just asking the question makes me want to say YES! And my mom took Estrogen for 30 years, til she died, and did not get breast cancer. Your mother has not had BC either? How did WE get so lucky?
FLWRGIRL,
You are almost 3/4 finished! Hooray! You will be facing the new year with a whole new look! It just seems so cruel that in order to get better the treatments make us sick or sore or bald or blistered.
Annie1962,
I don't recall anyone in this thread having the same DX as you. Yours is a major decision and it would be good if you could connect with others who have gone through it. Maybe if you look in a thread like Surgery you might find a discussion about choosing MX. But please use our group as a sounding board... we are all in different situations but still struggling with wrapping our minds around our conditions.
Watercolor,
Not too late! We are all in the early phase of dealing with our DX. It seems like one becomes a veteran of this disease so fast, sadly, only to keep finding out we did not know as much as we thought we did! I keep planning to compile a list of all our "classmates" and their stats to see if we are representative of general BC statistics. Maybe I will do that... after halloween costumes are finished, closet clean out completed, floors mopped, bills paid, etc etc etc.
Wishing everyone an anxiety-free day!
Pam
0 -
Hey Anne, the BSGI wasn't too bad. They inject a radioactive solution into your vein, then they place your breast into a machine similar to a mammography machine except that they don't compress the tissue as much. You have to be still for about 5 minutes for each view. It comes up slowly on a screen and you can see the tumor really well. It was because of being able to see my tumor so well from the BSGI that we were all so shocked that the one in my left breast wasn't detected.
Please know that the info I gave you earlier was not meant to scare you or be all negative. It was just my experience. You will find these breast cancer threads to be sometimes very helpful. However, sometimes you have to be a bit wary of some of the recommendations people make for treating side effects etc. I think we all mean well but we are also very different. There is a wealth of information here but use it as a guide and always check in with your care provider.
Good luck to you, Mary
0 -
Good evening Ladies:
I hope everyone has had a good day. I know how each day is and how things can change in a moments notice.
I went to the surgeon today and my port will be placed on Wednesday. The Med Onc said I could start my chemo the same day the port was installed, but the surgeon said it makes it a really long day so to wait a two or three days before having my first chemo treatment. So I think I will schedule it for 10/29.
I bought some more scarves and I think I am ready for the hair loss, but I still tear up when I comb my hair. I know it is not all about the hair but that is where I am placing my emotions. You've got to place them somewhere or you wouldn't be able to get through all of this.
I read all the posts regarding not finding the lump until it is so large and then I think that they found mine and it as .8 cm and it was so small. I just don't see how they could be missed when they are so large. Maybe it is because I am 59 and do not have dense breast tissue anymore, and was easier to see. I feel that I am so fortunate, not to be in this situation but for the early dx.
Juannelle
0 -
Wow Juanelle,
You have come so far since making your decision! You sound ready to take on giants! Good for you. We are all rooting for you and know you are going to be so proud of yourself when all is said and done. Will you cut your hair short in anticipation? I don't know what I would do. How brave you have become.
Pam
0 -
Pam, I don't feel brave. My hair has grown lots since my picture was taken and yes I will cut it short. I guess about 10 days after my first chemo I will do the buzz cut and start wearing my scarves. It will really be strange with no hair. My hair is very thick and has a mind of its own. I have always fought it, maybe it will come back in softer and curlier.
I called the Med Onc and told her that I would have my port placed on Wednesday and they want to do my first chemo that day. She suggested several other days, but they just didnt work out. I just don't know what I want, since the Surgeon doesn't want me to have the chemo the same day, just because it would make a really long day. I am so tired of making decisions.
Also I am to take dexamethasone before I have chemo but I am not suppose to take it before surgery, so now I have to all and find out what I need to do. There is always something.
Juannelle
0 -
Hi Juanelle - on to chemo it is! We're all right here with you, sister! Two websites you may enjoy: headcocvers.com and anokhi.com. Both offer fairly inexpensive cotton scarves that are larger. I have found these easier to tie and a little more concealing. Small scarves leave places where your head may show. I have even been able to tie a bow at the neckline in the back, which sort of balances out my profile. I had the nicest compliment the other day - a woman said she thought my scarf was stylish, chemo or not. Woo hoo - fancy me! Which chemo regimen will you be doing? I am almost finished with Taxotere and Cytoxan x4. One more to go. My two cents on the port would be to wait for a few days before starting chemo. Pam, thanks for the good articles. You have been such a good hostess on this thread. So glad to know you. Jen - HOOORAY on the BRAC results! I am so happy for you. Everyone else - I am keeping up with you, and read your posts. Hello and welcome to the newcomers. You are wonderful ladies - take extra good care of youselves, please. XO, Mary
0 -
MACOB - I have decided to have the chemo on Friday instead of Wednesday after my port is placed. The problem was that the person that will normally drive me will be out of town next week and I hated to have my husband take off two days from work to get me back and forth. But he said that he would take off again Friday so I will do it then. I do think he needs to experience one chemo treatment with me. After that my cousin will be back and will drive me back and forth.
I have ordered scarves from several different places. I got some that I will have to tie and others that come tied with a cotton lining and they should stay on better. We have lots of wind in Texas and I didn't want to take the chance of them blowing off. Also I know there will be days when I just do not want to tie scarves on my head.
I will do the TC x 4. If I start next week, then I think I should finish up around Christmas. That would really be great for me.
Also I am going to try and continue working through chemo and rads. Can anyone offer me advice on this. I have disability that I can take, but I am worried about staying busy.
I agree with MAGOB about Pam being a very good hostess, you are the best.
Juannelle
0 -
Well, if I am the hostess, you guests have brought everything to the gathering! You all inspire me while keeping me grounded. I am, in real life, a mild-mannered person with tentative relationships. By that I mean courteous, light hearted, but no deep connections. It's my fault... I was shy growing up and did not learn how to build lifelong friendships until I got old and realized how much other women have to share. How much I have missed!
Having you all to talk with and share the highs and lows of our medical experiences makes it almost worth having breast cancer. I did say ALMOST! :-) So glad I found this site and all of you. Thanks for being here for me.
Pam
0 -
Hey one-L, I'm with Magob about waiting for a couple of days after the port placement. They did mine two weeks after my bilat mast and I think I was groggier after port placement than bilat surgery. It was good to have a couple of days to regroup before chemo getting into the mix. Good luck, Mary
0 -
I know you guys are right about starting the chemo right after the port placement. I will call on Monday and reschedule my first chemo for Friday. I still have vacation left and have some comp time, so taking off from work is no problem.
I shopped for all my chemo supplies today, so I am as ready as I am ever going to be.
I normally only work 4 days a week, but I have to work tomorrow and boy is it something that I really don't want to do. But you got to do what you gotta do.
Juannelle
0 -
Good Morning Ladies-
I've been lurking on the boards lately & would like to join in the group to. I just had my 2nd T & C on Friday. The steroids woke me @ 3am today so I decided to start my day off doing laundry while I still have the energy. At first I was just wired, but now all of a sudden I have all of this energy. My anti nausea meds were tweaked some this tx & now I am feelin' better (for now).
Regarding the hair loss, I am one of those people that is VERY concerned about looks. I was very worried about how I would handle this stage. One week ago my DH wacked it off & then buzzed it all the way down. We didn't cry, although it was a struggle not to. Afterwards, it of course felt strange. A week later & I'm still piling on a bunch of shampoo & looking for something to pull up my hair when I wash my face-duh! I was VERY nervous to wear my wig to work. I work at an elementary school & bought a wig very similar to my style (although its thicker). Many people that did not know my DX just thought I got may hair done, I decided to tell anyone who asked at that time & felt much better after doing so. Kids are clueless though-which is what I wanted. I can't stand wearing the wig though, its very uncomfortable...I rip it off when I get home & switch to a hat. I wore my hat to my Onc. appt on Friday-no strange looks there-I LOVE THEM! Yesterday I venture out with my DH & son shopping & wear my hat out for the first time. Yes, I felt everyone looking at me & but it wasn't to bad. EXCEPT while shopping at a Halloween store, I was so mad that a woman about my age (I'm 44) glanced over @ me & started to laugh & say look at her!!! She realized she screwed up when I turned my head & looked @ her. I couldn't believe it I might expect that from someone young, but not her age. I don't care I'm still wearing my hats. I will also where my scarves if I can EVER figure out how to tie them right. Wig to work for now though.
Thank you for letting me vent. I look forward to getting to know everyone. Have a great day!
Lil
0 -
Dear Lil and Juanelle,
You Texas girls have spunk! I admire your attitude and know you are going to come through this better than ever. God bless us all.
Pam
0 -
OMG Lil-- I can't believe the stupidity of some people. You can only hope that they don't ever have to experience this and face the humiliation of someone's stupid comment. Or maybe you can wish that on them, that would show'em. I don't think most children would ask, they would just accept it and go on.
You know we really would not want to wish this on anyone, but you would like for them to walk in our shoes for a couple of days, especially with the hair loss.
Oh well, what doesn't hurt us, can only make us stronger. Keep your chin up and look'em in the eye, that will at least intimidate them.
I have lots of scarves and have tried tying them, but I have so much hair, that I can't get it up out of the way to experiment with tying them. I guess I will get there soon enough. I have printed out lots of instructions.
I will have a busy week this week getting ready for chemo and all. I am ready, but dread it happening. I want it to get here and then I don't. It is a good thing that I don't have to make many decisions this week, I just don't think I could.
I hope everyone had a relaxing weekend and is now ready for the new week.
Juannelle
0 -
I should join this group too! By the title, I was thinking "graduates" in 2009 - people finished with their surgeries and chemo - not people dx'd.
My surgery is Wednesday, right mastectomy with expander. Lillian, I work in a school too, I'm a Middle School Secretary. I'm a bit freaked out about going back to work lopsided and hairless with middle school kids! I've noticed a ton of teachers and other school employees on this site - makes me wonder if working around kids causes cancer, lol.
Since I have to have chemo I'm not sure if I'll be allowed to go back to a germy environment like a school. Won't know that until November when I start chemo. Chemo girl for the holidays - so fab.
0 -
Hi Coolbreeze,
Nice to see you here. Things move so fast for us BC survivors. I hope the next couple months fly by. Gosh, working and holidays and treatment... you won't have time to catch your breath! Will you be finished by the beginning of the new year? Sure hope so. When I was first out of college I worked as a substitute teacher a couple years.. middle schoolers were the hardest group. You have your hands full.
Wishing you well.
Pam
0 -
Hope everything goes well for you, Coolbreeze. Will be thinking about you on Wed. as you go into surgery. When you feel well enough, let us know how you are doing.
0 -
HI Y'all,
I saw my medical oncologist today for my every 3 month check. She is just great and always makes me so reassured and comfortable. They took blood and will run a CBC and CA 15-3 but are adding a Vitamin D test which has been discussed on these boards lately. I didn't ask for it but am glad she is up to date and willing to run these screening tests. Wonder if she reads this site? It makes such a difference to be comfortable with your doctor! I even got her to look at a mole on my hip-butt... I forgot to point it out to the dermatologist as it was covered by my panties when they did a once-over.
So... bottom line: 8 months post DX and I have had repeat mammogram, CBC, CA 15-3, Vitamin D test. Also CT scan follow up for question of lung spot and dermatology skin check with 2 moles removed (recommended by radiologist) . I'll see the radiologist once more this year but just a look-see, no tests. Could this mean the "Year of the Doctor Visits" is drawing to a close?
I hope!
Pam
0 -
Hello everyone, my name is Debra - I was diagnosed on July 23/09 and had a right side mastectomy on September 9th. Node dissection came back negative while on the table. Path showed 2/3 nodes affected, one cancer and one mets. Next surgery on October 28th with chemo 3 weeks post op, then radiation, then hormonal treatments for ER PR +. Oncologist wants me to now see Gynecologist (as I have severe endometrosis) for consult. re. hysterectomy and tubes removed. What a rollar coaster!. Although this is a club I would prefer not to be a member of, I cannot tell you how happy I am that you are all here.
Gods speed and best wishes to everyone.
0 -
Good AM Asterix1234,
We wish you did not have to join us but glad to be here for you. You are going through the worst right now! You're right, it's like a roller coaster for your emotions. I can't personally say it gets better, maybe we just get used to the ups and downs, but it is just amazing to read women on this site and see them grow in spirit and wisdom. I have learned so much about cancer and the human spirit here.
Please keep us in the loop. We just try to share where we are and whatever we have learned. And listen to our sisters when they need to vent!
Pam
0 -
I figure I belong here too... I was diagnosed with IDC on 8/27. Had a BL Max with TE's on 9/29. Due to start chemotherapy in November. This is a rough road but the support of the great women here make it a bit smoother ride !
Hugs ~
0 -
Beautiful family, Alicia. We have such a diverse group of women here, so many different diagnoses. We all have a different battle but are in the same war. We just need some miracle new weapon to take on all the different kinds of breast cancer! Best wishes in your upcoming treatment.... when you just need to vent, we are here!
Pam
0 -
Thanks Pam... Love that line "We all have a different battle but are in the same war." !!!
0 -
Here is a good article about choosing mastectomy with reconstruction. I think it has a lot of info and a very positive attitude. Sorry, I don't know how to hyperlink it.
0 -
"ADVANTAGES TO CANCER SCREENING EXAGGERATED."
http://www.msnbc.msn.com/id/33408887/ns/health-the_new_york_times/
I totally do not get this! We should not be getting routine mammograms? At all? Are they really talking about DCIS and the question of what to about it? If so, why don't they say so? Do they mean IDC or the more rare forms of breast cancer?
Making this vague statement without giving direction is so harmful, IMO. I know this debate has been going on behind the scenes but for the American Cancer Society to take it public without adequate guidance is unconscionable. That's what I think anyway.
Pam
0 -
Welcome, Asterix1235 and JustMeAlicia. Blessings to both of you. Wishing you a return to a healthy life.
0
