2010 Sisters
Comments
-
rachel- I also had a lumpectomy and will be doing rads after chemo. My understanding was that lumpectomy plus rads has the same outcome as mastectomy without rads. I think it is a personal choice in some cases. In some circumstances I think mastectomy is necessary.
jag- You hang in there. It will get better once you have a plan for treatment. I swear it was worse before I knew everything I needed to do. Once I knew, I felt like I was fighting and taking charge. Don't hesitate to ask your doctor for something mild to help you sleep. You need your rest now. You are going to have some hard work coming your way. I have an 11 year old son. He makes this fight easy. Throughout it I have been honest with him. We all know I am going through all these bloody treatments to kill this monster once and for all. I have asked him to help me with several things and I think it helps him feel like he is part of this treatment. He is in charge of making me drink lots of liquids after chemo. He takes his job very seriously, practically floods me! He also gives me the best foot rubs with peppermint cream! God blessed me with this beautiful boy and my dear husband to! I'm keeping you in my prayers..
grannydukes- You just make me smile all over! I tell you, if I ever have a fight, I want you on MY team. You come loaded for bear!
0 -
amyjo49, Oh good Lord, reading your post I felt like I got hit in the head with a baseball bat, I cannot imagine how you must be feeling right now. I'm glad you have a good strong family to support you. Mine have been everything to me during this cancer summer. I'm sending you a big, warm, flannel blanket of a hug. The shock will wear off in a few days, it will soak in, and then, you just start fighting back one day at a time. I started to get my sanity back when I went out and dug in the dirt of my flower beds with my bare hands, plus I just gave myself a bad headache with all the crying. I think I cried because I mourned the loss of my normal life, it will never be normal again. I've, subsequently, lost it a few times, but it comes back.
0 -
Omaz: They did my oncotype test on the very small pieces of biopsy tissue before my BMX. My onc doc said this onco score determines the chance of recurrence, not whether chemo will benefit us down the road. A low score would mean you have a lower risk of recurrence. I have second degree relatives all with BC so my low onco score of 11 was tossed aside in considering chemo. Hope that helps.
0 -
inthepink - The oncotype score was just another piece of the puzzle for me to consider whether or not to do chemo. It was relatively low (17) but other things indicated I had a fairly aggressive cancer. KI-67 was 19% (they consider 20% or greater to be high-risk for recurrence). Also, it was a grade 3 tumor, so all things considered I went for the chemo. There are so many variables for all of us. Like someone said, the decision is about the hardest part - then you get to go to work on ridding yourself of the cancer and finally feel like something is within your control again. It's all just a terrible feeling until you get going. Best wishes to you and all the ladies going through this part of the process!0
-
grannydukes - I just had to smile when I read your post about the doctor doing that to his own mother.
Cheryl - I cringed and winced when I read what your crazy doctor did! OMG, it makes me want to barf! You have such a good attitude about it.
Amy Jo - I was sick when I read your post. I can't believe they could make such a major turn-around on your diagnosis. It's just another one of those things that makes me question them all the time. I'm so glad you found these boards now (I didn't find them until I had committed to my decisions), but these ladies have all the answers, and even better all the questions I wished I had asked my doctors. Stay here and we can all laugh and cry together, and share our experiences that will hopefully help others. So many good threads, so many good ideas and so many super-brave women. God is good and he will take care of us all.
0 -
Rachel, Cathy, and LadyinBama,
Thank you for the thoughts and prayers. I know you are all going through your own trials with all the waiting. I will be praying for you and all my new sisters here. You are all such an encouragement to me.
Good news! I at least slept better last night. Only woke up 3 times and was able to go back to sleep within 5 or 10 minutes. That is a step in the right direction. Today is Sunday so I will be able to go to church today and see all my friends and "family" there. I have a good support group here locally that love me and will do anything I need. I hope all of you have or can build the same type of support where you live. It really does help just knowing they are there.
Joy blessings and peace to you all.
Amy Jo
0 -
Amy Jo, My prayers are with you and your family. I cannot imagine how devastated you must feel. My arms are around you in a gentle hug.
0 -
Amy Jo
I know you probably didn't ever want to come here but we welcome you with open arms to the sisters 2010. You can believe we are truly sisters you can count on to tell everything to! I'm so sorry about how you had to find out about the BC diagnosis turn around. It's such a shock, but we're here to support you, to carry you when you're down, to make you smile despite some down days and answer your questions ... put us on speed dial!
Blessing to all
0 -
My 2010 sisters: I am almost tearing up now. To see the luv and caring and support here. You are the most amazing gals anywhere. Each of you deserve great praise and I hope you all know how special you are with your kind words and support when you see another sister down. Just want you's to know your appreciated and to say thank to each one of you. Yes Granny I just LOVE how you say it.
Cathy
0 -
Yes, grannydukes. The numbers are stunning. Something IS going on here...I pray for us all everyday too.
amyjo, onward, inthepink49. Glad you found us. May God give you the courage and strength you'll need to fight this. As for making decisions, gather your information, ask questions, get as many opinions as you need, and then follow your intuition as to which choices are right for you.
0 -
Dear Sisters 2010,
I so appreciate all the love and encouragement you all have shown me. I do not know what all the abbreviation mean yet but I am sure I am about to get a Master Degree in BC before very much longer. I have started a notebook of questions and am already at #106.
I have decided to go to my onco tomorrow to find out exactly what all the terms are and what my path reports say and mean. (He said I could call or come anytime I have a question so I am taking him up on it.) He is the one on the team of doctors that tells me everything I ask plain and simple. Once I know everything that is there I can then tell this disease it is not going to dictate my life. My family keeps telling me that they have not ever seen anyone a stubborn and strong willed as I am. I keep telling them that it is not me but God that is in control. I just get the information so I can be prepared for the fight. My youngest daughter reminded me that I do not have to tell God how big my problem is, I have to tell my problem how big my God is. I know some of you may not share my faith or beliefs, but that will not stop me from loving you and praying for each of you.
A question for any/all of you.... Did any of you have a mammogram that did not show any signs of anything wrong? My mammograms still do not show anything!
Huggggggs to you all,
Amy Jo
0 -
amyjo-Oh I love, love, love your daughter's quote. I am going to put it in my favorite quotes file! I had regular mammograms every year and my BC was not detected. I found the lump while bathing. When I asked my BS how long it had been there she said it could have been 5 or even 10 years. I asked her why the mammo didn't find it and she said that 30% (going by memory, might be different) of BC is not visualized on mammograms. Who knew!! As forall the abbreviations, you will learn them quickly enough. I was totally lost at first. There is a thread that will help you. Just type it in the search box and you should find it. It is called: Abbreviations for newbies - updated .I will keep you and your family in my prayers and thank you for yours.
0 -
amyjo - I had a mammo last year, the radiologist thought he saw something about 1 cm in size so they called me back and did it again and an ultrasound and said it was ok. Then in this June I was watching TV and felt the lump, now over 2cm in size. after i was diagnosed the surgeon put up my new mammo with the big lump and the one from last year with the suspicious area and they were the same. It was just not clear in the first mammo.0
-
amyjo49--> Just wanted to add my thoughts and prayers along with the others'! So glad you have your faith and a church home to turn to, both are so important to me as well. We had a missionary fromm India at church today, and after I was prayed over, he reminded me that a headache and cancer were all the same to God. Leave it in His hands and do not be afraid. (easier said than done sometimes!)
Some calcifications showed up on my mammogram. I was told I should have them biopsied, but that if it was cancer, it would "only" be DCIS, so no hurry. The biopsy showed dcis with a micro-invasion (which means a few cells have turned cancerous). I had an MRI and it didn't find anything more than what the mammo showed. I had a lumpectomy and they found a 3.5 cm lump of invasive cancer (IDC). Surprise! Also, I had a sentinal node biopsy(snb) at the same time--just as a precaution--the surgeon was confident they wouldn't find anything. Suprise again! 3 nodes had cancer! I didn't have clean margins, so I had a mastectomy (mx), and they found dcis throughout the whole breast. It was just one surprise after another! I had no idea there could be so much cancer, and have it not be seen by mammo or mri! Of course now I wonder what's in the other breast that we can see...
Take care and keep us updated!
0 -
AmyJo: Mine was seen on mammogram, but the radiologist said it was very "subtle" and could have easily been overlooked, especially since I had dense breast tissue, it was hard to see. She just had a feeling that it needed further investigation. It could not be felt by me or anyone else. I feel like her gut feeling was the first miracle I've experienced in this journey.
Rachel: Yes, I had BMX. It was only in one breast, they were pretty sure, but besides my one known tumor, there were other suspicious places in that breast. I just decided to get rid of them both so I wouldn't have to always be worried about it and start from scratch with two reconstructed breasts! Turns out it was just the one place and no cancer in the right breast, but I still don't regret my decision to do mast instead of lumpectomy.
HeartnSoul: thanks for what you wrote on oncotype test. I've been confused about exactly what it does and am going to ask my onc on Tuesday why they haven't done one on me. Maybe because my KI67 score was 23% and I had a positive node they figure I need to do chemo even if I had a low oncotype score and I understand it is a very expensive test.
Hope all you ladies have had a good weekend. Mine has been nice and restful. I find out next week when the chemo starts.
0 -
Hi Everyone -
I was diagnosed July 13th and just had surgery last week. I had a lumpectomy and snb, with two nodes removed. Just waiting and healing right now. Surgery is the easy part so I have heard!
I have been told I will get chemo (rx based on pathology report) and 5wks of radiation. Going to be a long winter...
0 -
LadyinBama: you have to have node negative cancer to be eligible for the Oncotype test. I wish you were. I'm keeping you in my prayers, my little brother is a helo pilot at Ft Rucker right now, so you know I love Alabama!
0 -
phxsunshine-they are doing the oncotype test for women with 1-3 nodes now. I had a micromet in one node and my score was 17. I chose no chemo.
0 -
marjie: Welcome - so sorry you must join us. Another Ontario girl! I have a very good g/f who lives in London and she is coming to visit me on the Labor Day w/e. Small world sometimes. I'm just healing from surgery too. Had a Lumpectomy July 16, and SNB Aug. 16/10. Same thing that Amyjo was talking about (above) happened to me.. first dx with DCIS 1.4 cm so only had a lumpectomy as they said SNB may not be necessary. After pathology showed much larger 5 cm not only DCIS but also IDC. So then SNB required. Also Amyjo I had mine found in a mamo but had a mamo 2 years previous and it did not show then (must have been there for years). All we can do is fight it with everything we have now and join hands and unite here.
Cathy
0 -
hi sistas
i was raised tough.i come from Brooklyn NY.My father died when i was 8 yrs old.tough.i raised 4 teenagers myslef.tough..I helped raise my 6 grandchildren and was working on wall st when the TWIN TOWERS WENT DOWN.I WAS THERE...I am proud to be tough.Dr#1 did the wrong thing by me and i am not a happy camper.any dr who does the wrong thing to someone who has bc should have to do the same thing to his mother.AMEN
I love my sistas.God bless all of you
K
0 -
So this never stops, we keep adding more amazing women to this "club"??? How wonderful and sad at the same time. A great big fabulously gentle Canadian hug to all of you!!! This week I go to the Oncologist's and have blolod work done (Wednesday) to see about whether I am
"up" for chemo treatment #2 on Thursday. Will keep you posted; also will share my experience and hopefully, put some nerves and anxiety to rest for some of you. On another note, is there anything said about wearing nail polish while going thru chemo? I would love to see some colour on my toes (had to remove my polish when I had surgery to install my port). Anything to allow me some tiny sense of "normal" makes me smile.all the best to you ladies, take good care and just breathe. . .
Teklya
0 -
Amy Jo - I am so sorry to hear about the issues you have had. That truly sucks. All of this truly sucks. I dont understand with all of the technology they have these days how doctors can be so wrong in their diagnosis sometimes. My thoughts and prayers are withyou with all the hugs you need. Stay strong, ask all your questions and make sure you get all the answers from your Onc.
Hugs to everyone out there. Seems like it has been rough lately for alot of us. It is all mindboggling at this point.
Jen
0 -
Teklya - I was wondering the same thing. I've heard of some girls wearing clear nail polish and it helps. We will have to ask our onco about that too.
Sista Granny: gonna re-name you Grannytough HUGS - We love YOU.
Cathy
0 -
Crap. My Ki-67 score was almost 70% (can't remember exactly, just that it was high 60s.) Plus I had high grade DCIS with comedo necrosis in addition to my IDC, and I'm Her2+. I feel like I'm a ticking time bomb, even after chemo. Sometimes ignorance really is bliss. I hate this damn disease.
1 -
Teklya--> Depends on what type of chemo you have. Some can cause a lot of damage to the nails, and you wouldn't want them covered so you can't see what's going on. Clear nail polish, though, might minimize damage. Having said that, I'm starting Taxol tomorrow (a chemo that causes nail damage), and I'm not going to remove the polish (colored) I have on my toes, but I am putting the clear stuff on my fingernails.
Tina
0 -
Amy Jo,
I'm so sorry you're going through this. Two of my very dear friends are stage IV and have been living very well with their treatments! Try not to despair, there are so many great protocols.
Once you've had some time to adjust to this awful blow try to stay positive. An empowered attitude really can help!
We're here for you!
0 -
BarbaraA: That is awesome, thanks for correcting me so fast! I have a friend who was diagnosed 4 years ago and she did not have the option, how far we've come in such a short time. Yay!0
-
ladyinbama- I was node positive and my insurance paid for Oncotype test. I think the new thinking is if you have 3 or fewer positive nodes, it is not an automatic chemo, so the Oncotype is helpful in making the decision. It may also be based on the size of your tumor. It does give a lot of good information as they test 21 genes. I think you have to be HER2-. I am very glad I have the Oncotype information. As I ended up in the lowish range, but had a micromet in one node, I chose a milder chemo (CMF) as it was my decision to have chemo. They have to keep your tissue "on file" for pathology, so they should still be able to run it. I would discuss it with your Onc.
grannydukes- I wasn't down at the Twin Towers, but was on the Upper West Side, and to this day I remember it all, especially our tired, sad Firemen's faces for weeks and weeks looking for survivors. No doubt you are here for a reason. Lucky for us we get your "take no prisoners" spirit!
Lady Madonna- I don't even know what a Ki-67 is, but it doesn't sound like you are happy about the score. You have a most amazing, positive attitude and I know you are going to beat this monster. Just keep on being you!
tmarina- My little rebellious sister! Enjoy your bright toenails, I hope they are fire engine red! Heck, after all you have been through, what's a little nail polish going to hurt! I'll be thinking about you tomorrow and as always, keep you in my prayers.
0 -
Phoenix: Hooray for your brother. I admire our military. My dad was Army, my first husband Navy. Ft. Rucker is a cool place.
The KI67 shows the rate of cell turnover or something, it's supposed to indicate how quickly it is growing. The radiologist, who did my first biopsy and diagnosed me, said "they" like the score to be below 15, but she said my 23 "wasn't bad." For what it's worth ...
0 -
Below 15 for the KI 67?!... wow! No wonder they glossed over mine! Oh well, it's old news now. Chemo was automatic with Her2+ anyway. Have to take my own advice and keep the positive attitude
Love to all my sisters!
0
