Stage II w/Lymph Node Involvement
Comments
-
For those that are ER and PR positive and premenopause...what advice are doc giving regarding removal of ovaries verses tamoxifen
0 -
MEBERT - I just had the conversation regarding ooph vs. Tamoxifen with my onc this week. I saw a reproductive endocrinologist and she was thinking that maybe I should have the ooph. I asked my onc what he thought and he said that 5 years of Tamoxifen is equal to an ooph. At least in my case where my ovaries and uterus are otherwise healthy. I'm 35 and I wasn't looking forward to removing healthy body parts and dealing with all the SE of that decision. My onc and I went back and forth a bit on the Tamoxifen because I really, really did not want to take it. I had read so many horror stories!! But I've been taking it for 6 weeks and so far, so good.
My onc said that in cases where people know they won't remember to take the drug or refuse to take a drug for 5 years, he recommends an ooph for ER+ BC.
0 -
Thank you Pejkug3, you almost described exactly what I was told too by my onc and ob/gyn. I'll be asking a second opinion before removing anymore parts than is really necessary. Glad the beginning of your therapy is going well. Take care.
0 -
mebert - Since I am in my mid-40's, my doctors and I decided that I would take Tamoxifen and check my estrogen levels and uterus throughout the five years. I am still in chemo-pause. If my ovaries return (50% chance) then they will either remove my ovaries when I complete the 5 years of tamoxifen or chemically shut them down before starting me on an AI. If anything pops up in-between the plan will be re-evaluated.
My Doctors do not want to remove ovaries at this time because even though I am done having kids they are not certain what long term effects early removal of ovaries will have on my overall health. They feel if there is a viable alternative to removing the ovaries, they want to explore it first before taking that step, but if it needs to be done they will remove them because they want me on an AI after 5 years of Tamoxifen.
0 -
timbuktu - 20 cells is very small - so small they missed it during the look at the SNB in surgery. 100 cells is also very small, can't be seen without a microscope. I did have a BMX but did not have rads. If they are leaving a micromet, and you are not having chemo, are you having rads? Rads would be your only weapon to eradicate the cluster.
0 -
Mebert - I am assuming you are negative for the BRAC1/2 gene mutation, is that correct? If so you should do some online research about the benefits of oophorectomy. There are studies that indicate removing a woman's ovaries shortens her life span. Apparently even post menopausal ovaries are beneficial in some way!
Pegkuj3 - I am glad you are doing okay with Tamoxifen. I have been on and off it for 6 months and everything seems okay with me, too. I am just wondering if your onc explained how 5 years of Tamoxifen equates to oophorectomy (?). One big difference between them is that oophorectomy results in immediate and permanent sterilization! Isn't that a downside for someone who is 35? Tamoxifen does not cause sterilization. In fact, you are young enough that Aunt Flo may visit you while you are still taking Tamoxifen (and is very likely to visit you when you stop). Why did you consider oophorectomy? Are you trying to get rid of Aunt Flo?
0 -
Kathe - I believe my onc was saying that 5 years of Tamoxifen equals an ooph from a cancer metastisis/recurrence standpoint. He wasn't really in favor of an ooph but when I was resistant to taking Tamoxifen (out of fear of the SE) he suggested an ooph. But he urged me to take the drug because, like you were saying, the ooph was permanent and if I had terrible SE from that - there was nothing he could do to fix it. If I had terrible SE on Tamoxifen, I could stop the drug. He said that some women don't remember to take the Tamoxifen or flat refuse to take a pill every day. And for those women, he recommends an ooph.
I have had a regual period so far. I started Tamoxifen on Sept 1 and I started my period that same day. And my period arrived on Sept 28.
I've been told that it is better from a premenopausal woman to have regular bleeding because it cuts down on the risk of endometrial cancer. The reproductive endocrinologist that I saw said that if I have any irregularities in my period to report the right away.
I'm through having children - I've had 5! I considered an ooph out of fear. Fear of recurrence, fear of mets, fear that keeping my ovaries would enable my cancer to spread or redevelop. But getting solid information made me more at peace with taking the Tamoxifen and avoiding additional surgery to remove otherwise beneficial and healthy body parts.
My onc was rather concerned when I "pushed back" on taking the Tamoxifen. He was never really insistent with me about any other line of treatment but this one he was.0 -
You are so young to have 5 children-- I had my youngest child at your age! You must be a very strong person to get through treatment and raise a family of 5 at the same time. I think you did the right thing by going with Tamoxifen. I had ovarian surgery +Lupron therapy (chemical castration) when I was 31 and went into instant and complete menopause for 6 months. The surgery was no picnic, but the hot flashes were almost unbearable! I went back to having normal periods, kids, and more periods all the way until I started chemo this year. Since I am 50, I am likely not going to have another period -which is okay with me;-). The hot flashes are back, but they are so much more tolerable now.
Mebert - One advantage of Tamoxifen over oophorectomy is that it does not inhibit estrogen production. Estrogen protects you from osteoporosis and heart disease.
0 -
Kathe - what you are describing is exactly why my onc really encouraged me to take the Tamoxifen over have the surgery. The reproductive endo doc that I see said, "well you'll have to do through menopause at some point anyway..."
True. But not at 35.
My kids range from 7-14 years old. The youngest two are twins. I was a bride at age 19 (two days after I turned 19) and we celebrate our 17th anniversary in a few weeks. He's a keeper. If I knew then all that I know now, I would certainly do things a bit differently!0 -
I had 1 cm cancer to the right of my right breast, 14 of 27 lymph nodes positive. Diagnosed as ILC. I will see Oncologist Oct 31. ILC didn't show up in MRI or CT but they said ILC does that. It hides and they were sure they would find masses in my breast after double MX but there were none in my breasts. I don't have any idea what to expect for treatment except that surgeon said I would have to have chemo and rads. From what I read, I am Stage IIA. Glad I found this thread.
0 -
jkelso54, I had nearly the same diagnosis, only mine was 2 c. ILC with 6/ll nodes positive, grade 1, stage II. Just had a PET scan and it was negative so hopefully it's localized. I, too, am heading quickly to chemo/rad and my choice, bi-lat mast and reconstruction. With ILC, you just never know. There is an ILC specific forum here, so I hope to see you there, too. Cheers and hugs. We'll make it (I was dx 9/29/11, right before you.)
Claire
0 -
TonLee... Thank you for your apology
Timbuktu... I had a micromet and had chemo, no radiation... even though a micromet (which is larger than ITC) is small, it is still a form of cancer travelling and chemo is the best defense.
Mebert ... I JUST today had the conversation with my MO about oofrec... I had a 1.9cm 98% ER+ tumor BRCA neg... and both my gyn and primary casually said to take out the ovaries... but there are definite side effects that could affect my quality of life... so I asked my oncologist whose opinion I value more, and he said NO... do not take out the ovaries... I am 48 years old, BRCA - and have no other reasons to take them out.. He said the tamoxifen will combat the ER + status. So I was super happy to hear this... I did not want them out.
0 -
Hello all,
I had ALND surgery yesterday and just now my BS called. She took out 15 nodes. All were clear. She was really excited.
I feel like I "should" be happier but in a way I feel like crying. I know 1/17 nodes is so much "better" than 1/2 but ... it really doesn't change anything. Doesn't change my treatment plan and now my arm is worse off than it was. I feel like an ingrate because I'm not jumping up and down at this "great" news.
Well, I just wanted to whinge for a minute ... I guess I'm tired.
On the upside, I was so scared about the drain but I'm amazed -- I haven't fainted or anything! My DH has been dealing with it only because I can't move that arm much yet, but maybe by tomorrow or the next day I can do it all myself. Just like everybody told me, it really isn't that gross.
0 -
etherize - great news that the nodes from the ALND were all clear. Get some rest and take it easy with the recovery. If you haven't see a physical therapist yet, see if you can get an appointment with one as soon as the drain comes out, oh ... and make sure they specialize in LE. Ask about a compression sleeve too as a precaution.
0 -
Thanks, ProudMom, I plan to go to a lymphedema class taught by a PT.
0 -
Etherize,
I am in a similar place as you. I was doing so well after my SNB several weeks ago, then because two of three nodes sampled proved positive I underwent ALND this past week. My doc called with a very happy "all the rest of your nodes were clear" and I felt relief, then grief at the loss of 29 healthy nodes.
I am so much sorer than the first surgery, and feeling lots of neoropathy, tired of the drain already (tho I too am lucky to have a great DH who wants to take care of the task)....so I am taking it a bit harder than I anticipated. I know it is a good thing to not have the cancer be worse than it is......and I know intellectually that I don't really have all that much to whine about.......but at the same time I am emotionally upset that they traumatized my axillary, left me bruised and injured, and removed 29 healthy, hard-working lymph nodes that I will never get back.
Think I am done with my whine now.......
0 -
selkie: I know how you feel. I had a positive lymph node that was thought to be negative during my lumpectomy, but it was shown to be positive on the pathology report. I had a second ALND surgery and the BS removed eight more nodes. All of those were negative and that was good news, but I was upset to have gone through a second surgery for basically no reason. I found it much more difficult to recuperate from the second surgery, probably because I still had not recovered from the first surgery yet. I hope you will feel better soon.
0 -
Selkie and Elizabeth, thanks for the feedback--sounds like you're going through (or have gone through) the exact same thing. I guess we have a right to have mixed feelings.
0 -
I had a BMX on OCT 14th & am still awaiting the pathology results. Should have them no later than Tuesday when I have my post-surgical appt with my bs. I was in to see the nurse on Friday & she let me know that some results are back.
Mostly good news- Left Breast (IDC) no vascular involvement, clean margins. The not so good news- Left Breast (IDC) found another tumor not visible pre-op surgery testing. Sentinal node & 9 other lymph nodes were removed; 6 out of 10 were positive for lymph node involvement. I am freaking out!!!!
Right breast great news- no cancer in breast or the sentinal lymph node.
If there is anyone out there with multiple lymph node involvement or a "surprise" tumor please let me know. I am feeling so alone & vulnerable right now.
0 -
Rose ... There are lots of women out there with surprise tumors and multiple nodes... Thank goodness you had the MX and all those nodes are out... Chin up... the nodes caught the cancer and chemo will take care of the rest... Vascular involvement or not clean margins would be far more concerning to me... you will be ok..
0 -
Rose,
I feel for you! I went in for my BMX with a dx of DCIS and came out Stage IIb with positive nodes, lymphovascular invasion and extracapsular extension. It wasn't fun to wake up to find out I'd be having chemo and radiation. I'd thought I'd traded having my breasts removed to avoid all that!
Now, 9 months later, I'm doing radiation, just ran a 5K yesterday and I'm hanging in there. You will too! It's all doable, although none of it is fun.
0 -
Wow 5K while doing rads. Way to go girl.
0 -
TexasRose - Just like CarlyC, my tumor had lymphovascular invasion and one of the 2 positive nodes had extracapsular extension. The nodes were also a surprise. Docs didn't see any enlargement on MRI or US - although it was never a guarantee, I just figured I didn't. Sucked when I got that news. Now I am going in for chemo #7 out of 8 this week and I am fine. Worked full time throughout and I've even started running again after I started Taxol. Hang tight, I know exactly how you feel.
0 -
Hi everyone, I'm new here to the forum and newly diagnosed (within the last couple months). Thought I'd start by saying "HI" and saying how glad I am that I found this forum. It really helps to hear what others are going through with a diagnosis similar to mine.
So, to quickly summarize: My cancer was caught by my annual mammogram. The tumor was not felt by me or by any other doctor. Later, I found they had been watching the area for "a couple years". Boy, I sure wish I'd known sooner, but it's history now. I went through the ultrasound, the biopsy, the MRI, then the MRI biopsy. Found IDC tumor ~2cm with DCIS surrounding and then another area of DCIS ~4cm in the same breast. For the best possible outcome and look I elected to go with a full mastectomy. The other breast also had/has something "suspicious", but they can't find it right now with an ultrasound. Final pathology is in my signature line.
So, here I am a couple months later. I've done two rounds of Taxotere/Cytoxin. So far things are going very well for me. My worst experience is my head itches A LOT. That, and the drain bulb after the mastectomy was like a ball and chain - but I can't complain too much on that - I see that some of you have had four!! I've had the emotional ups and down. Thankfully, mostly up. The worst down was after learning of lymph node involvement (it was initially not suspected). But, like all things, there is a reason. Going through ALL the treatment (chemo and RAD) gives me the best possible outcome and peace of mind.
And, on the subject of peace of mind - I have a question to you all.... After all the chemo and radiation, what other scans, tests, etc are typical and routine (and expected) to look for possible METS? I've asked the Oncologist PA a couple times now and the answer is "the chance that your cancer has spread is so minimal that we're not going to go looking for anything else". I haven't had the opportunity to specifically ask the Dr yet, but I will. I just wanted to go armed with information on what I should expect and demand. As background info to you all - I had 9 nodes removed in the Sentinel Lymph Node Biopsy and 3 of the nine tested positive. The largest deposit was 3mm and had not left the node. Not searching for further spread of cancer just doesn't make sense to me. Even if it's too small to find - at least it's a baseline to go from. And, if they do find something, the earlier the better. So, what's everyone else's experience with this?
Thanks everyone for taking the time to read my post and respond. I look forward to communicating with you all throughout this crazy experience!
0 -
Hi Mnjclark, my name is bev when i was diagnosed in March, my surgeon ordered xrays, bone and CT scans to see if there was anything else, thankfully they were clear, after my bilateral they found a smaller tumour in the other breast so i am thankful i chose that option as they were not detected on mam or scans, i am currently healing as i had an infection and had te removed, then the wound came open again so i now have a vac and am due to start radiation 17th November. You should talk to your Surgeon and oncologist about further testing, i am in Canada so i dont know what the system is where you are. anyway nice to meet you all these lovely ladies have a wealth of knowledge so ask away!!, Bev
0 -
Hi mnjclark. I think your oncs response is a common one in stages 1 and 2. My onc says that my cancer was caught so early and that we treated aggressively, so we don't need to do scans - fear of false positives, etc. I sometimes wish I could have scans of everything, and sometimes I'm glad that I don't have scans to worry about. My onc said that those who scanned after symptoms had similar outcomes to those who scanned regularly.
0 -
I don't agree I am getting bone scans every 6 months and reg onc checks every 3 months.If I have any mets show up they will be treated quickly and aggresively.We all know how this beast can creepback into our lives without much symptoms.
0 -
My onco said no scans unless something is bothering me. It doesn't seem to be protocol to have f/u scans unless required. Most that I have met through my travels seem to be the same..just mammo/us every 6 months. Strange how it can be different for those at similar stage.
0 -
My onc said the same thing...and I find that unsettling as well.
I would at least like to do a bone scan....once my treatment are done I want to push for it.
0 -
I was diagnosed almost a year ago and my MO said no scans for stage I and II due to false positives, that lead to other procedures because they have to check it out... and all those extra tests can be unhealthy in excess too... So after a lot of reading found that was the standard of care... at least here in the US... And then this past summer I had a CT scan only because I was having a DIEP flap and they needed to map out my blood vessels and some abnormality showed up in my uterus... SO... I had to have a D&C, and the abnormailty turned out to be nothing... So I now understand what they mean... could have skipped the D&C. The report did say no signs of metastasis, so nice perk, but still.
0
