Ladies in their 40s
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Stenokim, my pathology report just said ER+/PR+. It didn't have a percentage. Nor did it have KI-67, so I don't even know what that is. The tumor in my 1 node was actually a tiny bit bigger than the breast tumor, so he took a fairly large area of nodes which ended up being 15 (they don't know exactly how many they are taking until the pathologist counts.) I'm glad you are seeing a lymphedema therapist. Mine has helped tremendously with my cording issues, and she has taught me to re-direct the lymph flow to make my unaffected side kind of "take over." As far as SE's, I've had very few so far, thank goodness. Lost my hair, but otherwise feel great!
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Hi! I was diagnosed last March at 44. Had my BMX in April. I went through 6 rounds of chemo and 33 days of radiation. I'm still on Herceptin every 3 weeks and started tamoxafin earlier this month. BC doesn't run in my family so it was quite a shock. I have an extremely energized 8 year old daughter. I'm fortunate to be a stay at home Mom but needed lots of help last summer to entertain her. I got lymphedema from having some lymph nodes removed so that's what I'm having to deal with for the most part now.
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Mac, KI 67 is the rate of the cell growth. A score under 10 is considered low. The KI 67 is one of the genes that is tested in the oncotype, though mine was also tested during pathology before oncotype, along with the percents on Er/pr. I'm so glad SEs have not been too bad for you. Is your lymph edema in your arm? And when you redirect the fluid, how long does it last (stay away) before it's back again?
Mcgis, nice to meet you. I was the first in my family to ever have BC. Grandmas, great grandmas, aunts, all lived into their upper 80s, early 90s with no BC. Guess it had to start somewhere, lucky us.
. Hope the tamoxifen is working well for you. I've had no side effects so far, fingers crossed. 0 -
Stenokim, I don't have any lymphedema yet. Since I was getting therapy for the cording, she just showed me how to re-direct the lymph flow through my body to maybe help avoid it later on since it can come up at any time. She said to do the exercises occasionally, and more often if I notice any signs of lymphedema in my arm.
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Thanks Gonein40. I really appreciate this site and learning from others experiences, it is so helpful.
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Macintx, what sort of physical therapy are you doing for the cording? Is it only in-office stuff or are you doing exercises at home? I've got a moderate case of cording from my first surgery 2/26. My surgeon suggested heat compresses under the armpit. I meet with a physical therapist next week.
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oranje mama....I'm in the same boat as you with Aetna. I too was thankfully covered for the genetic test for being diagnosed at 41.
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The OT does manual massage, stretching, and some sort of manipulation of the tight areas from my armpit down my arm to the wrist. I also do some stretching exercises at home. I have gone from being able to raise my arm only 90 degrees when extend out straight to almost being able to raise it to touch my ear! There is still some tightness and a few twinges of pain when I extend and turn it certain ways, so one or two more sessions and it should be worked out completely. It was definitely worth going to therapy!
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just checking back in to let you know that genetics results were negative! So I'm going for the lumpectomy. So relieved that I can not pass this on to my daughters. By the same token, it remains a total mystery why I have this cancer now.
The great thing about the consult is how the counselor explained what a negative result means going forward. There were several implications but the big one was that if I am cleared in 5 years, this ends. Don't need to keep following up with MO or BS. It will be over. Sounds so good. Hoping I get there.
And the other awesome news today is that I. Am. Done. With. Chemo. Woo hoo!
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Oranje, congratulations on the wonderful news! You must be flying high today! Looks like I'll be doing the same chemo/targeted cocktail as you, starting in a few weeks. Any advice? What were the worst side effects?
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Everforward, there are a couple of boards under Chemotherapy that I've found really helpful - there is a Taxotere, Carboplatin, Herceptin board with very knowledgeable ladies who have been there done that. Then there are monthly chemo groups that are really supportive since you are going through the same stuff (albeit different regimens) at the same time. One thing you can do (I still do this) is lurk on another chemo group thread a month ahead of you to get a glimpse of what may be coming.
The thing I've seen with TCH and chemo in general is that your reaction will be very individual! My MO is full of stories of women who get chemo on Thursday and are back at work (one working 2 jobs no less!) on Monday. That was not me. There are also some women who have terrible reactions, have to stop work completely for the duration, endure hospital stays, etc. That was not me either. I was somewhere in the middle. Day 4 is a total wipe out for me every time (like, don't get out of bed kind of day). I feel pretty miserable on Day 5 too. Days 6-10/11/12 (sadly trending longer each dose) I feel gradually better each day but with a constantly changing array of SEs. I work from home on those days. For whatever reason, I am at my emotional lowpoint on Day 5/6. I think it's the realization that I've been feeling stinky from chemo for a week and I'm not there yet. Also, I have extreme mouth/taste buds issues that seem to peak around that time. Hope I haven't scared you too much! The good news is that chemo is not forever. And believe me, the day you finish you will be in the "room without a roof" (happy)!
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oranje_mama. Congrats on being done your treatments. What a wonderful feeling this must be.
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Thanks, Oranje. Where in DC were you treated? My surgeries were at Georgetown but I'm going to GW (which is easier to get to) for chemo.
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My MO is at Johns Hopkins/Suburban Outpatient center which is off of Democracy Bvld (near Montgomery Mall). I get infusions in her office. I actually live in Silver Spring (1/2 mile over the DC border) so Suburban is pretty convenient for me.
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hey ladies! I took a little break from this website. Dont know why, except life goes on. I really appreciate your thoughts as we are so young and yet not in our 20s or 30s. Thank goodness. I can't quite take on the grandma-ish wisdom of the women who are older, and my peers all have breasts. Healthy ones. I don't like being the outlier in this way. Even my onc continues to think I'm in my 50s and I still correct him after 18 months of treatment. Yes, I feel like the oddball!!
Your thoughts about my daughter needing more psych support are very helpful.
My heart goes out to you with the chemo side effects!!! And the parenting you do sounds TOP NOTCH!!! I laughed at the concert noise you mentioned. Hey, at least we're not alone with that, either.
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My heart goes out to those of you who are facing ovary removal. This may not apply to your situation, so apologies in advance if it no consolation!!! Im second-guessing myself because I do NOT want to speak out of turn, not being a doctor, and all. But,
My gyn convinced me to do a laproscopic salpingectomy, based on very recent studies that indicate ovarian cancer originates in the fallopian tubes for many women. During the procedure, he inspected my ovaties very carefully and decided to leave them in place. Once the salpingos were in pathology, they found only atypical neoplasm, proving that POSSIBLY my ovaries are still healthy. I still have eggs, but can only concieve in a petri dish. What if your doctor might consider this? Or, atleast, eliminate this possibility.
Again, my heart goes out to you!
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Hi happyraccoon,
I took some time off from the board as well. I did have the salpingo-oophorectomy both to reduce the chance of ovarian cancer, and reduce the estrogen. I could not take tamoxifen, so my ovaries had to come off to be able to take an AI. But it sounds like salpingectomy could be a good option for those who do not need to remove their ovaries to suppress estrogen levels.
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Hey ladies, I too am getting TCH. I have 2 treatments left of the Taxotere/Carboplatin. Has anyone else had upper GI issues?Mine have been really bad. I take protonix and zantac daily. I feel like I am going to need a GI doctor when I'm done. Also, is there anyone that had expanders in before chemo and will need to get implants after treatment? I just wonder how long they usually wait to do the exchange.
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I was diagnosed at 44- October 2013. I have no family history. My children are 24, 20 and 8. Yes, big gap! I started my family at 20 years old and breastfed my children - BRAC negative/ MY mammogram was clean and it was an ultrasound that found it. I never felt a lump. I had a double mastectomy in November. My doctors said I would not need chemo BUT then my ONCO score came back at 24 so, I did chemo. I have never had a pet scan. It bothers me to not have had one. I am finished with chemo and taking tamoxifen. I started reconstruction and one breast expander had to be removed about a month after I finished my fills. I get to have it put back in May. My doctor says I don't meet the criteria for a pet scan- don't most people get at least one???? ChristyGA, if my one expander had not failed I would have had them 2 exchanged two months after I finished treatment- depending on my bloodwork and schedules. I am glad to find this page. I don't meet too many women my age with an 8 year old going through this. I am usually very positive but quietly, I miss my old self every day.
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Hi Goldie,
Welcome to the thread. So sorry you have BC. It is extremely normal to miss your old self. I do too. The scar across my chest (as well as shoulder and nerve pain from the double mastectomy, peripheral neuropathy from chemo, and joint pain from Femara) are constant reminders of what happened. However, I'd rather do all of those things and be alive. I definitely learned not to take life for granted.
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well ladies I'm currently going thru my last of my chemo. FEC-D. I am doing the neulasta shot. OMG is all I can say. And someone please tell me that it gets better. I am looking forward to being "normal " if there is a normal. I am not usually a negative person but when life throws you lemons. Make lemonade
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Hi Gonein40,
So sorry about what you are going through. I had ACT with Neulasta shots, and it was really tough as well. I am exactly one year away from my last chemo infusion. It does get better. Hang in there.
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i was diagnosed stage 2 in 2012 when I was 38, did the full workup (see info below), and found out in February of this year that it has spread to one of my ribs at age 40. My insurance paid for my BRCA testing (which was negative) after it was submitted the second time for approval.
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Angie, how awful to have been diagnosed a couple years ago with no sign of the cancer in the nodes and to go through chemo and a mastectomy only to have it come back 2 years later somewhere else That sucks big time. I'm sorry you're having to go through that.
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Well, I am sorry for the reason we are all here but am happy to find this thread. I was diagnosed just shortly before my 45th birthday. My mom died of metastatic breast cancer in 1979, so I felt like I was always waiting for this shoe to drop. I finished active treatment last August but am being followed for a couple of lung nodules that showed up during a ct that I had during chemo. Sigh. Don't know when I will feel like this is all behind me.
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Christyga, I had bad reflux/heartburn during chemo. Took a double dose of prilosec (prescribed by my MO) and always had liquid mylanta close by. The good news is that it cleared up shortly after I finished chemo. Hope it does for you too.
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Angie, I don't know what to say except that I am so sorry you are going through this! You must have felt like you did not even have to time to take a deep breath and relax before dealing with the next crisis.
LakeGirl2, if you don't mind my asking, have you had the genetic testing?
I am 3 weeks PFC today. It is such a relief to be going to the MO for "just" Herceptin tomorrow. Yay!
I actually found the recovery from my last chemo the hardest. I was so happy to finish, but I think in the last 2 weeks it sunk in that while the poisoning has stopped, the effects will take a long time to resolve. I was fortunate in that my energy level after the first 3 TCH remained high, but the cumulative effect crept up on me with #4, and slammed me with #5 and 6. I feel like I am 85 years old. Muscle aches in every. single. muscle. I want to say that I am noticing a gradual increase in energy level, but that would not be the truth. Truth is, I feel more exhausted today than I did the day before my last chemo. At least GI symptoms are resolving (yay!). I can drink water again (although it still tastes funny). Everything still tastes salty but I can eat a wider variety of foods again. Taste buds are not back 100% though. My favorite foods still don't taste right. It's such a long haul.
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Orangemama - I did have genetic testing. Came back negative which was wonderful news. I decided on a lumpectomy following that but my mom's experience and a gray area oncotype score led me to chemo.
Congrats on finishing chemo. I only did 4 chemos, and I know how I felt when that ended. I had read (and found to be true for me) that it took about as long as I was in active treatment - in my case 8 months- to feel back to normal. So it is a long haul but you'll get there!
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LakeGirl2, it is great to have the information re BRAC1 and 2. But as my genetic counselor said, it's frustrating too, since you don't have any explanation for WHY you got BC.
I think yesterday was my turning point, emotionally, anyway. I had such a hard time the last 3 weeks. But yesterday came, I got my Herceptin-only infusion, still feel like "me" today instead of drugged-up steroid-crazy person that I did post-chemo, and that's a really good feeling. I also saw my MO and BS & got my post-chemo MRI results which were really good. Both docs were really positive and said I had a "great" response to chemo. The mass is now tiny, but there are about 1.5cm of calcifications to be removed too. All in all, I have the feeling of progress and moving on. Surgery and rads won't be a walk in the park, but I feel ready for the next step. Lumpectomy is scheduled for May 8.
And, today is my birthday. I don't have 100% taste buds back, but I'm going out for dinner and hoping that my first margarita in 4 months will taste good anyway!
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Im a new member to post. Age 46, diagnosed July 2011. Lumpectomy, radiation. Low oncotype.. Had mammo yeaterday and almost fainted from fear. Closed my eyes during entire thing.. Brings back bad memories. Mammo clean!
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