Go To Main TNBC Website


  New Posts New Posts RSS Feed - My next steps
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

My next steps

 Post Reply Post Reply Page  12>
Author
cynbatt View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2009
Location: United States
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote cynbatt Quote  Post ReplyReply Direct Link To This Post Topic: My next steps
    Posted: Feb 25 2009 at 4:58pm

I am a 52 year old healthy female who had a total hysterectomy 3 years ago since my mother passed away from Ovarian Cancer at age 52 and I have a variant result for BRCA1 gene testing. BRCA V1736-G. My sister was diagnosed with Stage 0 BC at age 40 and went through chemo and rad and had a total hysterectomy. She did not have the same BRCA variant as me. I have had annual mamos and NOTHING! On Jan 27th almost one year since my mamo, I found a lump and it is TNBC. 

I have been very pushy to get things going. My biopsy was Feb 6th and I started chemo on the 19th. I am getting Carboplatin and Taxotere every 3 weeks 4x and changing to AC and Cytoxin every 2 weeks for 4x.  So far, first chemo was ok.
 
I will need surgery and with the family history, looks like a double mastectomy. Not looking forward to this and so far the plastic guy did not win my business. I will be seeing others.
 
My concern is that my tumor hurts. It started out at 2.7cm on ultrasound, 3.3cm on MRI and the oncologist says 4 to 4.5cm. I am doing chemo first and then surgery because my mom had such a difficult time with her surgery first for ovarian. I felt I would be healthier to handle the chemo first and I am. Hbg almost 15 and all blood tests look good.
 
It appears that I may have at least one node affected according to the biopsy report. Apparently the one node is 1.4cm x 2.2cm and there are increased sizes and number of nodes on my affected side (left breast).
 
I have been told this is Stage IIa? Guess we will not know until the surgery.
 
I am amazed at the spport for women with cancer. My mother had nothing like this. I am still working and intend to until my surgery. The support of my family and friends is overwhelming. They are all so kind.
 
I have had many diagnostic procedures but not a PET scan. I had a CT scan last Friday after my first chemo. Should I push for the PET scan? Will I need it later?
 
I have read that this cancer responds well to Chemo so I fully expect a good outcome from that perspective. My concern is recurrence but my Oncologist told me that we are not going there now.
 
I looked at all the clinical trials and it is difficult to identify the right one. I am sure the oncologists have access and know that my doctor found this combo that appears will work for me.
 
I am angry that I did not find this sooner and feel that the mamos were a waste. I also saw the difference with digital imaging.
 
I will continue to push. My tumor hurts and aches at night. They gave me Ativan when I said I needed something to help me sleep BUT it doesn't work. I also think my eye site is getting worse and I have needed reading glasses only my whole life. I am also concerned that I am starting to get those mouth sores and I have been rinsing with baking soda.
 
Anyway, I am still pretty positive at this point and picking out wigs tomorrow with my girlfriends.
 
I welcome your thoughts on my situation.
Back to Top
Nancy View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 23 2007
Location: Altoona, PA
Status: Offline
Points: 3809
Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2009 at 6:15pm
Evening cynbatt,
Welcome to the site, and sorry you had to look for usWink
 
I will tell you that my daughter Lori's tumor also hurt, but once it was gone no more hurting. It was hurtingbecause it was growing. Lori had the mastectomy and then adjuvant chemo and rads. Lori just wanted the beast out of her. Lori was Stage IIA also. Her tumor was 5cm and another behind the nipple. Node negative.
 
WOW! . That sounds like the "works" as to chemo, to me. Also appears that you have everything under control. These docs are your employees and if they don't do what you want them to do, you fire them.
 
You will need all the tests you can have as that is your baseline for later. Lori had every test there was, and that was because her husband was her "cancer secretary", and they wanted to make sure the little beasts were not any where else in her body. They were not.
 
Did you have a bone scan and a MUGA? The A is very hard on the heart and you should have a baseline so they can compare after the chemo. Lori even had a brain scan, and her surgeon questioned why. Well, we have had women who at first dx had mets. Guess that would answer his questionBig%20smile Lori had a scare about 4 weeks ago, and it is a good thing she had the bone scan and MRI at dx, as they then had that to compare with the one just done.
 
Since you have a variant with the BRCA mutation, I feel you are very wise to have a double mastectomy, and you said that you had a complete hysterectomy. Did they also take the ovaries at that time?  Don't mess with this cynbatt. First dx, you do everything in your power to keep it from ever coming back.
 
I have heard women say that if it comes back they will have the other breast removed. Well, if it comes back the second time it is much more difficult to treat. I say get it right the first time.
 
Have they done a test on the tumor to see what chemo is best for you? The resistance test?
 
We have many resources in the TNBc news forum, and Pam has posted many of the trials. Everyone has a concern as to recurrence, but TN does respond very well to chemo.
 
I fully agree that mammos are a complete waste. So, you had the digital imaging. I just posted that to someone yesterday. They say it picks up even the tiniest tumor.
 
Now, you need to tell your onc that you want the prescription for the "magic mouthwash". That will take care of those mouth sores. I am going to send you a private message with my email address. I want to send you all the directions for retrieving our tips, and other information.
 
Gads...sorry this is so long, and someone else probably already posted to you.Wink
Many hugs,
Nancy
 
 
 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
Back to Top
Fear Nothing View Drop Down
Groupie
Groupie
Avatar

Joined: Feb 03 2009
Location: United States
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote Fear Nothing Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2009 at 6:15pm
I'm really sorry to hear of your diagnosis, but am happy you've found this website. I too am new here, but am a previous colon cancer survivor- so even though I'm only 33, I'm getting to be a pro at keeping my chin up and remaining positive. Sounds like you're incredibly blessed with a great support system- that is the key to being lifted up when you need it the most.
 
I had a bilateral mastectomy two days before Christmas. Obviously it wasn't a walk in the park, but I personally was prepared for the recovery to be worse than it actually was. I am doing A/C followed by taxol, but from what I understand, the side effects are very similar.
 
I just had my second chemo treatment last week. I would have lost my hair a few weeks ago, so I decided to cut/shave my head at home. Sure enough- just one day after I shaved my head, my stubbles were falling out everywhere. For me, I think the anticipation of losing my hair was worse than actually losing it. There are days when I'm very ready to have my hair back, but all in all I'm okay with it. I did buy a great wig- looks SO much like my real hair and I love it... haven't even worn it once. I'm comfortable in hats & scarves. I think it's just a matter of finding what's right for you. Sounds like you have really great friends to make it a more positive experience with you. I think you're in good hands!
 
I'm sure you'll be flooded with support on this website- these women are amazing and SO knowledgable. Best of luck to you!
 
Fear Nothing
Back to Top
Guitargirls sis View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 06 2009
Location: United States
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote Guitargirls sis Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2009 at 6:30pm
My only advice is measure that sucker during chemo and if it continues to get bigger get the mastectomies sooner rather than later.  My sister's breast wasn't evaluated until the end of chemo (she had stage IIa) some 16 -20 weeks later and by then it had spread to her armpit and the entire breast was involved.  Measure as you go (ultrasound and manually exams are probably the easiest).

Betty took percocet for the pain and it helped her sleep.  Ambien was crap...
Back to Top
krisa View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 21 2008
Location: Portland, OR
Status: Offline
Points: 1090
Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2009 at 2:21am
cynbatt,
several women I know have part of the chemo regime, stop, wait a month, have surgery, heal and then continue with chemo.
you are doing a wonderful job researching and knowledge is power.
i remember when i was diagnosed and everyone i came into contact with (medical people/ and articles about bc) said not to rush my decision because breast cancer takes time to develop and has been there for a long time.  maybe with other types of breast cancer, but not TNBC-it waits for no one.
Heart
Back to Top
cynbatt View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2009
Location: United States
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote cynbatt Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2009 at 3:58am
Nancy,
 
I think I am starting to understand the website and THANK YOU! I was not sure about what to do since my next chemo s 2 weeks away (FIRST WEEK FINISHED AND I WOULD MARK EXCELLENT).
 
I have a big business meeting this Sunday retuning Wednesday and taking the train to Washngton DC. It's the Federation Meeting of Hospitals and I WILL be there. I feel good right now. I am one of the vendors coverng corporate accounts and will see several of my collegues and customers and am determined to make this meeting.
 
Upon my return, I am getting my head shaved and getting over the shock ONCE! Today, Friday, I am calling to make sure my chemoport is scheduled and will inquire about the other tests you mentioned. I want every baseline comparison I can get. I have NOT had the chemo resistance test yet and will be asking. I believe my oncologist mentioned it BUT not when. I will make it a priority! Oh and the MAGIC MOUTHWASH is on the list as well!
 
BTW, It sounds like Lori is doing well and I am keeping her in my personal prayers. I will ask my family to light candles for all of us!
 
I did have a clean chest Xray and Bone Scan but will make sure I get all of the rest. I KNOW I have to keep this straight and remind them! Should I get another oncologist from a different group? It is so confusing and I do not want one to try to overpower the other and get in the middle. I WILL have discussions with several Plastic Surgeons and LOVE my General Surgeon. I have fairly large breasts naturally and no where to pull skin for reconstruction so I am concerned. I do not want them to cut my back. I had a bowel resection prior to hyesterectomy (and YES Ovaries age GONE!). I know my D cups will be smaller but am concerned that I will not keep a feminine physique. I was a competitive bodybuilder in teh 80's, when they were looking for the feminne physique, not overly muscular but symmetrical and good on stage. I won Ms PA, Ms Nations Capital, 3rd in the US and so on and I consider those my famous years...a long time ago. NEVER did drugs! Just enjoyed the sport and actually ran many contests for women and men afterward. It was a fun time to be in magazines and do a few talk shows but always a controversial winner since I was NEVER the most muscuar. Oh well, I did enjoy it and moved onto a verysuccessful career that  love just as much.
 
Anyway, just remembering some of the past good times and really getting off the subject. Please accept my apology. I guess I hope that someday, someone can read some of my thoughts since I do not keep a diary or anything like that. I wish my mom did. I still have her checkbooks wth her signatures and that's been since 1992. I have a lot of her personal things and may even have her wig too.
 
Oh well, off to work. THANK YOU for responding to me.
 
I do hope you have a great day,
cindy
Back to Top
cynbatt View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2009
Location: United States
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote cynbatt Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2009 at 4:09am
Thanks fpr your reply!
 
Yes we found a wig last night and my friends said I had to name her. I have very long, dark brunette, Curly, NO PERMS OR DYES and will be donating it!
 
My new wig is short ( I have never had short hair), curly, a bit lighter with red auburn colors and cute and we named her "Muffy". She is on the rocking chair in the living room and looks like it may be the type of wig that may not be too hot BUT not too short. We all like it and I hope when my hair is shaved next Wednesday, it will be great.
 
Anyway, only one scarf and turbin so far. I will have to wait to see what else I need.
 
The Mastectomy has me very upset and nervous. Due to a previous bowel resection in 2002, they cut the same area for my FULL hysterectomy and I looked awful. The scars were not good and I was very pset and saw a plastic guy who fixed the scar. Now I really need to see more plastic surgeons on this one and make sre they can reconstruct me. I know it can be done and will not make the same mistake as my hysterectomy.
 
I do hope youare doing better and truly appreciate yor response. How do I put my info at the bottom like DX 2/6 Biopsy TNBC 2.7cm (now MRI 3.3 cm a week later etc) Chemo Carbo,Taxotere 3wks x4 and AC,Cytoxin 2wks x4....etc I am not clear on all of he abreviations and wanted to compare those similar tome.
 
Thanks again for your response and I do hope you have a great day,
Cindy
Back to Top
cynbatt View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2009
Location: United States
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote cynbatt Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2009 at 4:12am
I AGREE!!! I took a bath in the jacuzzi last night and thought it felt smaller BUT it hurts and I can't tell. I have a friend and his son is a Radiologist and I plan on getting some advise TODAY. I have several folks who arein the medical field but it gets so confusing with oo many "cooks in the kitchen" that I need to be selective
 
I am all over this today.
 
Thanks for your response and have a wonderful day,
Cindy
Back to Top
cynbatt View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2009
Location: United States
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote cynbatt Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2009 at 4:22am
THANKS for your reply. I feel like I am getting help BUT 3 weeks between chemo and Dr visit is not scoring well with me. I may identify a POINT person for the review part to help me. Thinking about who that may be but not determined yet. I am on a mission now.
 
Thanks again and have a wonderful day,
Cindy
Back to Top
CarynRose View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 04 2007
Location: Robbinsville, NJ, USA
Status: Offline
Points: 960
Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2009 at 4:53am
Cindy,
 
I just want to chime in here.  First, neo-adjuvent chemo (before surgery) is the latest, and they think,  more effective method of administering chemo.  It shrinks the tumor so there is less to remove at surgery and it also gives us an indication of which chemos work best on you in case you need some more later.
 
Second, It ain't your mother's chemo anymore.  There are many, many things you can do to ease the side effects -- pre-meds, drugs, and naturopathic supplements. I highly recommend using a combination of all of them as well as Reiki and acupuncture.
 
Third, follow your gut. It will take you to the right place.
 
And lastly, we are here for you.
 
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
Back to Top
billie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Mar 30 2008
Location: United States
Status: Offline
Points: 345
Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2009 at 5:53am
Hi guitargirls sis,
         I am sorry that I did not get to talk with you when you was on line yesterday.I saw that you was on and I actually started talking about the oppurtunity for the member to be getting the oncotype testing done that was actually suggested by her dr.So please do not ever feel that what you have to say or contribute to this foundation goes unread.Maybe just maybe,some of these arrogant dr.s out there are starting to stop and ask for help in the treatment of this beast.What a blessing that would be.
 
        Josie 33 is also a sister whom is going through treatment right now.There are several of us sisters that are members on this foundation.I could feel your anger in your posting yesterday,and believe me ,I think that you have every right to feel that way,my wish is that I could find a way to help you get through your pain.I love my sister so very much and I can only imagine your pain.But please come back and take the time to tell the new ladies what they must do to stand up to these dr.s that think that they are God.
 
         The knowledge that you have gained through you and  your sisters journey is priceless and if you can help to guide just one of the new ladies through her journey to make sure nothing like what happened with your sister is not repeated ,would be priceless.
 
       So please come back and share with us.We are always  here for you any time you need us.Lots and Lots of Hugggggggsssssss    Billie
Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer
Back to Top
cynbatt View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2009
Location: United States
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote cynbatt Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2009 at 5:48pm
I think I need more opinions. I am not happy that my oncologist never scheduled my chemoport and is off until Thursday and oh by the way, my surgeon is also booked for 3 weeks. Sure I have been told I can wait but my gut says this guy looks at me like another number.
 
I have a friend in an oncologist office and plan to talk to them I am sure these guys look at the NIH sites to figure out the best plan but it's been a week, I feel fine and I feel like I am ready to get more Chemo BUT I do not get it for 2 more weeks. I the chemo resistence test a blood test? Can they tell after a week?
 
I have no doc appts and no check ups until my next treatment.
 
Do the oncologists usually stick together and support what ever the other one said? Can we find ot what their personal stats are for their patient outcomes? Is it posted somewhere?
 
I am a bit frustrated and NO chemoport.
 
Thanks for listening....Cindy
 
 
2/6 dx TNBC Grade 3 Stage IIa? BRCA1 V1736G
Mass 2-3cm / Axillary lymph 1.4x2.2cm
2/19 Carboplatin/Taxotere every 3 weeks x4
followed by AC/Cytoxcin every 2 weeks x4
To be followed by surgery
 
 


Edited by cynbatt - Feb 27 2009 at 5:49pm
Back to Top
sibu View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 27 2008
Location: FL
Status: Offline
Points: 660
Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2009 at 6:00pm
Hello Cindy and welcome!

Just wanted to jump in with my best wishes and support...don't have time to catch up on this whole thread right now but plan to later. Like Pam, Billie, guitargirl's sister and many others, I am from a BRCA family who has lost loved ones to this dreaded thing.

Know there are many out here reading and sending love and light, even if we aren't all writing.

Hugs, Donna
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07
Back to Top
sharon C Herber View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 28 2009
Location: Ann Arbor MI
Status: Offline
Points: 9
Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon C Herber Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2009 at 8:32am
Hi--I'm the same person as Sharon in Michigan, but had to re-register to respond on the computer i use on the road. I am at the moment on the way to a short job in Israel. Anyway,I just wanted to say something positive about the pain, hard to believe, I know. I did neo-adjuvant in 2005, much the same regimin that it seems you are on. My onc told me in the beginning that pain is often a sign that the chemo is working. That was true in my case. The tumor shrunk from 2 cm+ to almost nothing after one dose of AC. In the end I had complete clinical and pathological remission--nothing but dead cancer cells when they finally did the mastectomies and lymph excision. So if the neo-ad is shrinking your tumor, it is well-worth continuing.

I, too, worked and travelled through the chem, but I was one of the lucky ones with almost no side effects. BTW I didn't have a port. I know that many need them, but my onc said I had good veins and I wanted as little extra invasion as possible and I wanted to keep swimming my mile per day. So we tried without, and I managed to get through all the infusions with no mishaps. Since I hadn't had any lymphs out yet, we could switch arms every other dose.

I am now 3 years and 11+ month (who's counting?) from dx and still NED..

Good luck. You sound like you are doing everything right.

Sharont


Back to Top
cynbatt View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2009
Location: United States
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote cynbatt Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2009 at 12:04pm
Your message really helped me today. I am a bit down.
 
This morning I went to a local winery and got a nice wine, goat cheese and oil / herb mix for my friends. We picked out my wig and call her "Muffy" and had dinner at Outback. I am leaving for a business meeting tomorrow and returning Wednesday. That will be the 13th day since my first chemo and I am shaving my head and donating my hair. It's long and virgin hair (no perms or dyes, dark brunette). I am going to have the wine and cheese for my closest friends who will be joining me at the hair shop. I am sure it will be difficult. I am then going to a local Spanish restaurant up the street for a "Muffy" Reveal for all of my friends that I have worked with at St Francis Hospital over the years. There are many of us...and we all work for a major company now in differenct capacities.  They are the BEST! Muffy is quite short but curly and feminine looking. I am not going to wait for my hair to fall out, that will upset me too much.
 
On Thursday I am planning a family "Muffy" reveal with 20 of my immediate family members at Hibachi's. I will miss my sister and her family since they are all the way our west in San Diego area but the rest of us will meet in DE.
 
I do feel good today and really appreciate your message. I like documenting the things I am doing and fear my space will fill up on this website. It is helpful to just write it down sometimes.
 
Your travel is much more extensive than mine. I am typically states only with my latest trips to UT, Nashville and FL. I have been to Germany for my company a few times over the years and enjoyed it. I am blessed to have had those opportunities.
 
How do you handle the air travel? I am taking the train tomorrow and am not too concerned but air travel is something else.  I seem to get sich on the airlines even when I am well so I am concerned.
 
Anyway, your message was great today. THANK YOU amd I m so glad to hear that you are doing so well.
 
Take Care,
Cindy
Back to Top
Nancy View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 23 2007
Location: Altoona, PA
Status: Offline
Points: 3809
Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2009 at 2:34pm
Cindy,
 
I want you to know that you can write anything and everything your heart desires here on this site. When I began posting asking for help to help my Lori, I never dreamed it would in fact become a "journal" for her and for me. I wrote about even the tiniest of events, but they were all so very important to Lori, her children and the rest of our family. Even though I have told her everything all of you have ever said that thread will be saved so that maybe one day Lori will read it. She has never gotten on the site.
 
What you will find even more amazing, is the fact that you can go back and read the replies of all the members here, and know they were written to you with love and compassion. You will not "fill up the web space", as this site was begun by a woman just like you....Nancy Block-Zenna who was dx with TNBC, for women and their familes and friends. Although Nancy never got on the site, she wanted a place where those dx and their loved ones could "talk", and share experiences.
 
Write away Cindy, for with each word you wrote, we all become so much closer. Also, on those days when no one else seems to understand exactly what or how you are feeling.,I promise you....these women willWink 
 
Many hugs,
Nancy
 
 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
Back to Top
cynbatt View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2009
Location: United States
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote cynbatt Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 10:53am
Well I made it back from my DC meeting and everything went well. My hair made it but started coming out in strands during my customer dinner. They didn't notice. I am donating my hair tomorrow and will start using my new wig.

OK, saw a new Oncologist today. I have a good friend who works in her office and this doc was young and knew everything about me! She is totally computerized and I like her. Not sure if it's acceptable but I am changing to her practice. I do not usually move to new docs like this but I feel like I can relate to her. I feel guilty but I feel like it's better for me.

We are doing the same chemo but may be changing some things after my next round. She indicates a definite for mastectomy and mentioned probably radiation. I heard that your skin is affected by the radiation so I guess reconstruction will have to follow.

At this time, I feel like a consistent plan for 2 opinions for the chemo but I believe I will not get forgotten. My other oncologist forgot to order my chemoport and I just felt like I was not a priority. His office finally called and scheduled it after I made a big deal about it. I know it's a small thing but he said I was supposed to get it and I expected to get it and now I have a new doc.

Anyway, it was interesting that they cannot figure out if this is Stage IIa or IIIa. I was not aware that my surgeon thought that I may be a IIIa which was a shock today. My new oncologist thinks the tumor is smaller than 5cm so probable IIa.

Anyway, my question is toward the future. After chemo and mastectomy, how doe radiation affect you? I heard you are tired but what about the skin area that is being treated? Does it rot away? Get thin? It sounds like the reconstruction will have to be after the treatment. I will need false breasts to wear or something!!! I know I have time but it's on my mind. Tomorrow my hair will be gone and I am still trying to cope with it but my friends will be with me and then I will have dinner with my family the next night to show them my new look. I know I can do it but this is tough!!!

Snow here at home and very cold. I can't wait until spring.

Thanks,
Cindy
Back to Top
kirby View Drop Down
Senior Member
Senior Member


Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1030
Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 11:20am
Cindy,
 
Good for you for changing onc.'s. This is someone you will have a long relationship with and trust will be very important. Already having doubt over the port issue could affect later trust. Being able to relate is extremely important.
 
My onc was out once and had me see either nurse pratitioner or another onc. prior to chemo. My girlfriend that attended with me really liked this woman however I found her patronizing and told everyone I will skip a visit rather than have her again. I want a real straight shooter !
 
Be glad you switched early on. I never had a port but only had 4 chemo tx.
 
After having been thru chemo, rads was a walk in the park other than the inconvenience of daily appts. I don't know that I felt any side affects, other than I was always tired but attributed that to chemo. [ I did eventually get dx for a thyroid problem]. The skin did feel different. Actually firmer. Wished the other felt like that too ! I don't remember how long that effect lasted. Both breasts are the same now. I did use aloe vera gel & vit. E twice a day. The first application immediately after rads.


Edited by kirby - Mar 03 2009 at 11:26am
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
Back to Top
fighting back View Drop Down
Newbie
Newbie
Avatar

Joined: Mar 03 2009
Location: United States
Status: Offline
Points: 4
Post Options Post Options   Thanks (0) Thanks(0)   Quote fighting back Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 2:14pm
As I read your post, I felt as if I would was reading something I wrote. I am 33 years old and was diagnosed with Triple Negitive Cancer on December 19 2008. After waiting for genetic testing I had a surgery twice to remove all the cancer cells. On Tuesday March 9th I'm starting chemo therapy. I'm starting with Ac for 8 weeks, and then Taxol for another 12 weeks. I know it's going to be a long road, but I cant wait to start moving forward.
 
Did you get very sick after your treatments? I am also worried about losting my hair, but really don't feel as if I'm a wig person either. This is the first time I have been on this website, and I believe it will be very helpful during my treatment process. Thanks for write and letting me know I'm not the only one in the crappy boat.
Thanks for writing,
Mandy
 
Back to Top
lkleibham View Drop Down
Newbie
Newbie
Avatar

Joined: Mar 03 2009
Location: United States
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote lkleibham Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 2:33pm

Smile hi, I remember when I my hair started to fall out, I didn't want to wear a wig either.  I am a hot person, I love hats , mainly ball caps, and garden hats.  So do what you feel comfortable in.  I was also hat all the time, and a wig was out of the question.  I had my husband help me shave my hair, boy did i feel better once I got it all off.



Edited by lkleibham - Mar 03 2009 at 2:34pm
diagn. 2-19-07 IDC,
Left Breast lumpectomy
Grade III, 5 cm; no node involvement, ER;PR; Her2 NEg.
Genetic test Brac1 & 2 Neg.
Chemo finished 6-28-07 Rad. finished end august 07
Back to Top
 Post Reply Post Reply Page  12>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.