All Topics → Forum: Stage I and II Breast Cancer → Topic: Calling all Stage II Sisters!!!
Posted on: Apr 19, 2011 10:59 AM
sanbar8771 wrote:
I just wanted to sent a shout out. I don't see many forums for stage II. Finished treatment almost 6 months ago and I am going crazy. I want to re-arrange my house....buy a new car, even replace all my furniture. Does anyone else feel this way? I feel like I have no control what is going on inside my body so I just eat right (vegan) and excercise daily. Help, I am going nuts. My onco does not need to see me until my 6 month time period. Do I get a scan? As you can see in my sig, I am super duper high risk. Yay...me! But I know not to stress...just be thankful for everyday god has given me.
Julie
Posts 361 - 383 (383 total)
May 15, 2012 06:41 AM Megadotz wrote:
It was about four weeks. The MUGA may mean that they're thinking about Adriamycin as part of the chemo regime since it shouldn't be used if there are heart issues.
I had a port as well and was glad that I did. BTW, it's a good idea to visit the dentist before you start chemo and get a cleaning and any minor work done.
All the best.
May 15, 2012 08:19 AM SelenaWolf wrote:
I started chemotherapy seven weeks after my surgery. Time to heal was the reason; I used the time to get myself physically- and emotionally ready for the onslaught.
May 15, 2012 09:20 AM mumito wrote:
Did any of you get Muga scans after chemo to check for any damage.I only recieved one before.
May 15, 2012 09:38 AM SelenaWolf wrote:
I had MuGA before chemotherapy as Adriamycin was being recommended as part of my treatment plan. Adriamycin can cause heart valve function issues and the MuGA is done to ensure that you don't already have function issues with your heart that may get worse.
That said, I have had no heart issues since completing treatment. I've resumed my regular physical activities (weekly 20-mile hikes and bicycle rides) and have experienced no indication that my heart is anything, but strong and functioning well.
May 15, 2012 09:45 AM mumito wrote:
Good for you Selena, I exercise at the gym every second day but I now have BP issues which I never had before.I am having a bone scan tomorrow to check my ribcage and hips.
Jun 7, 2012 10:05 PM Rowan47 wrote:
Hello all, I was dx Feb 2011 with invasive papillary carcinoma. Was told it is quite rare and usually found in older women, and usually non-invasive low grade....not much research out there. I am 48 years old and my cancer was grade 3, invasive. Had BMX last August (no recon). Am doing really well and feeling almost "normal" again. It is great to find a group for people with similar dx. I too worry about mets etc so is comforting to know I am not alone.
Aug 3, 2012 12:06 PM chinainbk wrote:
Hi everyone
I was diagnosed on 5/8/12 stage 0 and after surgery on 7/13/12 I became stag II 1/7 lymph nodes. I am schedule to start TCx4 chemo therapy on 8/15/12 and I think the reality of all of this has finally hit me. I am not sure what to expect. I hear some people have minor reactions to chemo but I also hear horror stories. I am not sure if I should take time off of work or just try to have as regular routine as possible and take it day by day. Any advice??? so many decisions...... ;-(
Aug 3, 2012 12:32 PM carolinames wrote:
Chinainbk,
I tried to keep to a regular routine and work kept my mind occupied! I also thought I would take time off of work if I needed to, but was able to get through it. I had minor side effects with the TC (more with the neulasta shot) but nothing that I couldn't handle. Good luck and hugs to you! Angie
Aug 3, 2012 08:03 PM bdavis wrote:
China... I was like Angie... I had TC x6 and took infusion day off just because treatment took about 3 hours and then I went out to lunch and enjoyed the day off... I was fine for the nest couple of days and then had a down day (I also think due to Neulasta)... I made it through fine... I even spent 10 days on St John between tx 3 and tx4.
Aug 5, 2012 05:49 PM pamelahope wrote:
Hi all!
I guess I belong here. I am presently undergoing chemo. Finished ac dd and now will have my second taxol on Thursday. After this is my surgery. Treatment seems endless.
I am currently reevaluating my recommendation for radiation. Anyone else opt out of rads who is stage 2b. I guess a lot depends on surgical pathology and whether I have lymph vascular invasion or if a lymph node has extracapsular extention. Is that prevalent in our stage????
Pam
Aug 5, 2012 06:16 PM bdavis wrote:
Pam.. I opted out of rads, but had MX instead. I assume with your BRCA + gene you are having a bilateral MX?? After chemo you are having surgery?? I would wait until you get the results from that... I also assume they didn't do a SNB before you started chemo?? My one concern would be that pre-chemo you had nodes involved, and after chemo it is hard to say what was there beforehand... They are probably suggesting radiation because of the size of your tumor. What kind of reconstruction are you planning?
Aug 5, 2012 08:00 PM pamelahope wrote:
Hi! I am totally having a bilateral mastectomy. So far, I have decided against implants. I may consider a Sgap procedure however my biggest priority right now is hopefully not needing radiation and completing treatment. It may sound weird but chemo has made me so bedridden, not as bad with taxol, that any day I can get out of bed and do stuff is good. I don't even care about boobs anymore but I know that may change... I started wondering what I want them for and the only thing I came up with was to look good in clothes!
They did not do a SNB before chemo. What I do know is during my diagnosis, they looked at my lymph nodes during ultrasound and the breast surgeon said it is trying to get to my sentinel node. My PET and MRI showed one node positive 1.5 cm. Because I had neoadjuvant chemo would it show if I had the extracapsular extention or lymph vascular invasion? I understand almost everything about bc now except the lymph nodes, they are confusing.
To help resolve this issue, I wrote a two page letter to my doctors, basically asking if radiation was something I absolutely need for survival.
Hope you are doing well! Pam
Aug 5, 2012 08:45 PM bdavis wrote:
The thing about chemo is that something can be there before chemo and by the time you have surgery, it may not be there. Of course that is what you want, but unfortunately it also doesn't give a clear picture of diagnosis. Before my SNB my BS thought I was node negative, and even after SNB the preliminary report said I was clean and in the end I wasn't. The standard of care says that 3 or more positive nodes (even with MX) need radiation. I had one micromet (.38mm) and asked 4 doctors who all said I didn't need radiation if I had MX... BUT.. heres the thing. Let's say chemo missed something regionally (locally I am taken care of with the MX), the only other way to combat rogue cells is with radiation. So I worried, even with a micromet, that I would have a MX, no rads and get a regional recurrance. I am trusting the chemo did the trick. I had clean margins so I wasn't worried about other invasions (vascular). Is there a specific reason you are worrying about radiation? I know I had my list of reasons, but would have done it had been recommended... and it was recommended with just my lumpectomy. My reasons for having MX were beyond my fear of radiation, more of a need for peace of mind.
About recon, I had GAP and DIEP in New Orleans and love my decision. And if you need radiation, the docs in NOLA have experience in adding a little extra fat to accomodate for radiation shrinkage. I would be hapy to talk with you if you are interested.
Aug 5, 2012 08:51 PM wildrumara wrote:
apamelahope - I too had neoadjuvant chemotherapy and did not have SNB before surgery. All my imaging studies showed no evidence of enlarged lymph nodes. During my BMX, a SNB was performed and I had 3 sentinel nodes, 2 of which just crossed the threshold of being positive. Because I had neoadjuvant chemo and still had positive lymph nodes, my surgeon did an ALND for a total of 20 removed. The two sentinels were the only positive nodes. My friend, who is a pathologist at the hospital where I had my surgery, said that pathologists often see "dead tissue" in the nodes of patient's who undergo neoadjuvant chemotherapy, if those nodes were once positive. They can often tell when nodes were positive before chemo as this particular necrotic tissue is present under the microscope. I know at the hospital where I had my surgery, the pathologists often state that in the path report...."necrotic tissue found in nodes", or whatever.
As far as radiation goes, having the 2 positive nodes put me in a "gray" area regarding radiation based on a few of the latest studies out there. I had two consultations. One RO said did recommend radiation for me because of the two nodes being positive, and the other said it he would not....that the risks outweighed the benefit for me, especially considering my pathology report with smallish tumors, no LVI, great margins, and ALND. It took me a few weeks of research, communicating with women on these boards, and talking and e-mailing one of the ROs a few times to come to the decision that I would NOT do radiation.
If you have any other questions, please feel free to private message me.......I can give you more details regarding my decision regarding radiation and my plastic surgery choice, etc.....
Aug 5, 2012 09:13 PM pamelahope wrote:
Thank you for taking the time to speak to me. My specific reason is I have a blood clotting disorder and so far I have only clotted in veins, if I have supraclavicular I may up my stroke risk. Studies don't support increased stroke risk for people that get supraclavicular radiation, but people with clotting factors are not included in the study. I want to emerge from this as unscathed physically as possible, as far as veins, arteries, heart and lungs.
Also, I suspect because of BRCA 2 my body has increased sensitivity to radiation. I had a mammogram at 40 and experienced itching in my left breast, fast forward to now that is the breast that developed cancer. After my PET I experienced forceful vomiting, I suspect I have an increased susceptibility to effects of radiation.
I am at high risk for other cancers. My gut is telling me not to do it. However, if I need it I will do it.
It is encouraging to hear about your good results with SGAP. I like that procedure best. Even the scars look the nicest.
Pam
Aug 5, 2012 09:19 PM, edited Aug 5, 2012 09:21 PM by pamelahope
Wildrumara, Thank you for the information regarding necrotic tissue and lymph nodes with respect to neoadjuvant therapy. That makes sense. I am thinking my pathology report will determine further the need for radiation. I am glad you got to avoid it.
You too Betsy! Hope I get to join that club....
Pam
Aug 19, 2012 10:23 PM Beaglesgirl wrote:
Pam, I was in that gray area and ultimately my MO recommended RADs. It was not pleasant but with being BRCA+ and 3rd gen breast cancer in my family I went ahead with a DMX, OOPH and Hysterectomy. All I know is that I was bedridden for my chemo too - I didn't want to repeat it and also I am triple negative so chemo will always be my only option if I have a reoccurrence. Thats my experience. Good Luck- what ever you do, make it what YOU feel comfortable with because there is already so much we lose control of but the choices of our treatment should always be ours. ~Laura
Aug 20, 2012 10:47 AM pamelahope wrote:
Beaglesgirl, I love the name of your town! Thank you for your input. This is such a fear based disease now I am leaning toward doing it.
Did you have the supraclavicular area done too? How was that if you did?
Pam
Aug 24, 2012 07:39 PM Beaglesgirl wrote:
I did have the supraclavicular area done, I'd say my axilla and my scar were the most painful. It's slow to burn but when they finally show up there isn't much to do but let air get to the skin and time. It will pass and it was worth it to me to know that I had done everything I could up front. I got fatigue, I already have fibromyalgia so I knew I was pretty much going to be in for a junky time. If you choose to go that route- just have faith in what you are doing. Same as if you choose not to. We have to believe in what do Pam. Bottom line Have faith in what you choose. ~laura
Aug 24, 2012 08:30 PM Rose_d wrote:
Hi all,
I too am struggling with the radiation decision. I had a BMX and finished dd A/C and taxol a month ago, I've seen 2 ROs and my breast surgeon about radiation.
The first said absolutely I should do radiation. Said my age (40), the one positive node (2.5mm) and a very very small amount of LVI all add up to radiation. She apparently put in my chart that she thought the risk of a local recurrence was 25-30%.
The 2nd doc said I was smack in the middle of the grey zone and that it came down to my personality - am I the type that needs to know I've done everything absolutely possible to fight this in order to sleep. She put the odds of local recurrence at 10%, said radiation would bring it to 5%. After mtg her I decided I would do it but felt much more in control than I did after the 1st woman.
Then I saw my breast surgeon. She generally agreed with the 2nd opinion but felt that she would lean away from doing the radiation. She felt my risk of recurrence was 5% and that this might bring it to 3-4% but that it's not worth the Side effects. She thought that the LVI was not compelling - it was apparently so small and localized she thought they easily could have not seen it.
So now I really conflicted. I of course want to do everything but would rather not end up with lymphadema or worse and now that im recovering from my TE exchange which was Monday would rather not have gone through this only to screw it up if it's not necessary.
Would love anyone's thoughts! I see a UPenn doc in a week for a 3rd and last opinion.
Rose
Aug 24, 2012 09:14 PM bdavis wrote:
Rose.. one node, chemo, and MX.. I say no radiation. I had 4 doctors tell me no. BUT I am not 40, I was 47 at diagnosis.. and my one node was micromet (.38mm)
Nov 20, 2012 01:15 PM sanbar8771 wrote:
Hi ladies i just wanted to check in and see how everyone is doing. Im 2 1/2 years ned and doing very well. I hope everyone is doing well too.
Julie
Nov 20, 2012 05:21 PM carolinames wrote:
Good idea Julie! Glad to hear you are doing well. I am one year NED and doing great... can't believe it's been a year. Still wishing my hair would grow faster...but other than that feeling pretty normal again. Normal has been a long time coming!