Lumpectomy Lounge....let's talk!
Comments
-
ChiSandy, I see that you have been on Femara for about two years. How are you tolerating the side effects
0 -
The side effects aren't as bad as I'd been led to believe. Night sweats stopped pretty early on. Joint pain is mostly wrist from RSI (typing), foot (prior injury), but no knee pain, because I have implants. Hair isn't thinning any faster than before I started taking it. It caused higher LDL, but a low-dose statin took care of that. Just about the only bummer is the lowered metabolism, leading to weight gain (and carb cravings). Been on it now for 2 yrs, 2 months.
0 -
That is so true. When I was 31 years old, I had a cervical cancer diagnosis, but my ObGyn acted like no big deal, remove cervix, it's gone...and it was. I was young for a hysterectomy and only had one child, but to save my life and be around for that child, NO problem, take that cervix and uterus (I still have my ovaries.) But now with the breast cancer, I don't feel the same. I mean, I don't constantly worry about it coming back, but I do worry about it...dammit. Agree..."Ain't got time for this."
0 -
My guess is that you will have a crappy few months and then be able to resume your life—neither having nor needing “time for this." Hang in there! We're here if you have questions or just need to vent. Eventually, you'll be one of those answering the questions.
0 -
I know I ain't got time for this crap either! I was talking to my daughter this morning long distance and telling her how a whole year is going to be wasted on this breast cancer crap. I too worry - is it going to come back? Having the two worst woman diseases - heart and breast cancer - for me it's which disease is going to kill me first? It was bad enough to be the youngest woman in my family history to have a (mild) heart attack,bypass, and the only one in my family history to have breast cancer. Ugh! I use to think I was so healthy! What happened?
ChiSandy - I see you are taking Femara (letrozole) for your hormone therapy. It is what I'll be taking soon. Have you had any side effects from it?
0 -
Blair2, I am sorry you have two diseases to deal with. I hope this forum brings you some comfort. People I know who've had a bypass have done very well for a long long time.
I am a newby. Diagnosed Jan. 9 and got the news by telephone in Mexico from a locum doctor. My doctor is on mat leave so no continuity. Have been hiding under the bed but gradually I'm telling people. My lumpectomy is Monday Feb. 26.
I am worried that the biopsy after surgery may show worse results. This happened to my friend now in chemo. My surgeon told me I am Stage 1 but it doesn't say this on the pathology report. She also said no chemo, but I haven't had an Oncotype test.
Can anyone tell me if there is often a difference between biopsy report and surgery report?
0 -
Hi DearLife,
I had a difference between surgery and biopsy - I got downstaged. The original mammo & u/s estimated the tumor bigger.
What you'd have now is clinical staging, based on imaging and the doctor's examination of your lymph nodes. As far as I know, staging is not in the pathology report. But it should say hormonal status and the type of cells.Lymph node status can change staging too of course.
If you like, I can find the link for you in the BC Cancer agency guidelines which will determine if you qualify for provincially funded Oncotype0 -
Thank you Moth. I would be very grateful for the guidelines. My surgery will be at BCCA in Vancouver.
I have been reading the forum and am so impressed with the kindness, knowledge and sisterly spirit shown.
Bless you all
0 -
DearLife, it's a great resource! Can't imagine having to go through all this without having all this info & support!
The oncotype guidelines is on this page but I can't find a way to link you to it directly. It's on Table 4 in Section 6.3.2 http://www.bccancer.bc.ca/health-professionals/cli...
I see you're Grade 2; in that case their criteria is your tumor needs to be T1b or bigger (T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension; T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension; T1c Tumor > 10 mm but ≤ 20 mm in greatest dimension)
I'm at the Fraser Valley center
I'm guessing you will be having the sentinel lymph node biopsy as well?0 -
Thank you, ChiSandy. I've been lurking on this forum for a year and have seen a lot of your posts and others' helpful posts and really enjoy them. If I have to be a member of this club, glad to be with you ladies who I have been <cough> stalking...thanks!
0 -
Blair2, I've been taking Femara for almost a year and have had NONE of the side effects that you normally hear about such as hot flashes, muscle aches.
However, I have bone density issues (not because of Femara...had them before) and Femara apparently makes bone density worse. So my oncologist is going to prescribe Prolia, a medication that builds bones. I'm in the middle of a dental implant procedure, which apparently is not something that agrees with Prolia, so Prolia will be prescribed after that heals, in two months or so.
As Roseann Roseanna Danna would say, "It's always somethin'!"
0 -
Moth, you got downgraded...GREAT!
0 -
I had osteopenia before even starting letrozole, so I had one Zometa infusion (never again!) and two Prolia shots thus far. DEXAscan shows my osteopenia has actually improved a little. I did get some thumb & forefinger "triggering;" a cortisone shot took care of the thumb and the forefinger resolved on its own. No worse OA than before cancer (hips OK, have artificial knees, L foot had a prior stress fx); been having L wrist issues since a fall last month, but the ortho says the injury and a bone-length discrepancy, not letrozole, are to blame. I take biotin, and didn't have chemo, so hair is no thinner than before letrozole.
0 -
That's wonderful - you must have breathed a sign of relief! I also got downgraded from biopsy to lumpectomy. The biopsy estimated high grade but after lumpectomy the final path report showed intermediate grade, primarily solid architecture and oddly, more lobular cancerization (still in situ). I don't know if that's common or not but I was relieved to no end. The irony is (if that's an appropriate term) is that it didn't change my treatment in the slightest, even if there had been a worse pathology. I still have to do rads and I still have 5 years of Tamoxifen. So, take heart all those who might not be as lucky.
0 -
Thanks Dearlife for kind thoughts. My post surgery pathology report up graded my Grade 2 to a 3. My tumor size was just under 2cm, so it stayed a Stage 1. The only disappointment I had that was somewhat a scare was the fact they discovered a hyperplasia mass in the tissue that was removed from my breast reduction. This was in the opposite breast that was supposedly clear. So, the surgical pathology is a more thorough analysis of your situation, but as Moth said, you could be down graded. Never a dull moment! Good luck to you on your surgery day.
Mo-Beth, ChiSandy - I’m going to get a dexa scan soon, but it’s not scheduled yet. Gosh, I hope letrozole doesn’t give me muscle pain, as chemo gave me severe back pain. This isn’t a typical side effect of chemo, but for me it was. I’m going on 6 weeks after my last treatment, and I still have back pain that I’ve had since Dec 8th. I have osteoporosis, but it had actually improved over the years after taking calcium. I haven’t broken anything yet, and still move well (except now with this back pain). It seems trying to kill cancer cells ruins everything else in your body! A lot of improvements with research and treatments needs to be made. Yes, a lot has improved, but a lot more needs to be done with this evil disease!
0 -
Moth you are an amazing researcher. I will look through all of this and hope for a downgrade (not my usual goal!)
Sometimes I feel like Rosemary's baby with this parasite inside me. I will be glad to see it GONE.
Blair2, I had a breast reduction 50 years ago (!) Nothing to do with cancer, but definitely made me more comfortable. About osteoporosis - my husband had an amazing response to Aclasta. His bone density increased by 56% over 3 years and he is no longer osteoporotic.
I definitely feel like I have cheerleaders thanks to you all.
0 -
Blair, I also had some episodes of severe pain after chemo, but it was caused by the Neulasta shot, not the actual chemo. I've been on Femara for two years, with very few side effects.
0 -
ChiSandy, so you think Prolia helped, right, your bone density improved, you're saying? And no side effects (besides trigger finger maybe?) I'm kind of anxious about the Prolia. And I'm hoping I don't even get trigger finger because I don't want to have to get cortisone shots. I JUST WANT THIS ALL TO BE OVER! Waaaaaaaaaaaa
0 -
Blair, I agree, a lot of progress needs to be made in a cure for cancer. I have an acquaintance who was diagnosed at around the same time as me, with lobular ductal ?. She had a double mastectomy. A few months later, she had a lump. Nothing, they said. A few months later, another lump, stage 4. She does no Internet research. I don't think she even has an e-mail account. Anyway, I'm devastated for her.
We have mutual friends, which is how I know her, and I saw her at a Christmas party and she told me she's paying some phenomenal price for her 'pill form' med of chemo and then when she runs out of money she has to turn to fundraisers for the money and has had to have her doctor write letters to the manufacturer and they have come through so far (she's far from indigent, by the way, which makes that worse.)
So, anyway...what I want to say here is we need a cure BUT who is willing to lay his/her life on the line for that experiment? I know *I* went for the conventional tried and true cure(s) when I got my diagnosis.
(Not that anyone offered me anything experimental...)
0 -
The trigger finger was from the letrozole, not the Prolia. Knock wood, no SEs at all from the Prolia. Pretty sure that's what caused my bone density to improve. I didn't need a cortisone shot for the index finger--it never was painful, disappeared when I got out of bed in the morning and didn't come back till very late at night, and ended up resolving on its own. I had the shot for the thumb, and when after 6 weeks it hadn't improved we set a date for the tendon-release surgery (which I had on the L thumb long before bc). The night before surgery, it disappeared. Went to the hospital anyway but refused to let them start an I.V. till I could see my surgeon (who was running late). He came in, examined me, and said "Thank you for putting me back on schedule--now go have a great big pancake breakfast, since you've been NPO since last night." (There is a restaurant near the hospital that specializes in gigantic puffy gooey apple pancakes). He explained that trigger fingers are often self-limiting, and that unlike cataract surgery--which is "elective"--trigger-thumb surgery is considered a "lifestyle" procedure. If it ever comes back, we can revisit it.
The only difference between my core biopsy & surgical path reports was that the tumor turned out to have been larger than estimated at ultrasound--but the same grade and characteristics as the core biopsy sample; and it was classified T1c either way (so Stage IA). Had it been <1cm, they wouldn't even have ordered OncotypeDX, but since it turned out to be 1.3cm, it fell into the "gray area" for which OncotypeDX was developed. All turned out well--no chemo, short targeted radiation, and now few if any SEs from letrozole. Fingers crossed that I can quit the AI after 5 yrs. Sometimes now I can go a whole day before reminding myself I had cancer. (Checking back here on BCO does bring me back to reality, but often when on the road w/o a computer I don't even check anything but e-mail & headlines). At first, "OMG, I have breast cancer" played on an endless loop in my brain.
0 -
ChiSandy,
LOL about the pancakes and apples, both of which I LOVE!
I've had cataract surgery in my right eye and need it in my left eye. I thought that was only for 80-year-olds! Eye guy says it's because of the sun/tanning booths, he's seeing more and more younger people with cataract problems.
Okay, check, no trigger finger from letrozole yet. Maybe I won't have any SEs from Prolia.
My whole profile is very similar to yours as far as diagnosis, treatment, Oncotype score.
I think I'll only have to take letrozole for 5 years, too, but I'm not sure. I really don't worry about recurrence EVERY day, but when I'm reminded, like when I have to get my blood pressure checked on the left side because my breast cancer was on my right side, I have to tell the nurse, so that reminds me. Then there's the dental/Prolia thing, brings it to the forefront. Little things. I'm not a high-anxiety kind of gal, but sometimes I just freak out ;}
0 -
I do have to get my teeth cleaned 4x/yr to keep my gums healthy and teeth in place. I have one partial (aka "Maryland") bridge--single lower incisor anchored to its adjoining teeth, going on 12 yrs. now. I also have a 40-yr-old porcelain-faced gold crown whose coating is slowly fracturing, though the gold is intact. I do live in fear of needing extractions or anything else that would expose bone.
0 -
DearLife - between my biopsy and surgery, I was upgraded from ADH to DCIS grade III. Surgeon walked into the room to deliver the pathology and said "I'm really glad we did the surgery because the biopsy didn't tell us what was really going on." Best wishes for a speedy recovery.
0 -
- hi Everyone. ChiSandy I sent this private message cause I was a afraid you may not catch my question . But thought there are others out there that may have the same question so I am posting it here also.I am scheduled for a zometa infusion in April and wondering why you said you would never do it again ? I just found out I have osteopenia also and the Ono doc is recommending it. Though I have reservations about it not knowing about it all. What is prolia ? Thanks so much. Love this site and everyone here has helped so much.
0 - hi Everyone. ChiSandy I sent this private message cause I was a afraid you may not catch my question . But thought there are others out there that may have the same question so I am posting it here also.I am scheduled for a zometa infusion in April and wondering why you said you would never do it again ? I just found out I have osteopenia also and the Ono doc is recommending it. Though I have reservations about it not knowing about it all. What is prolia ? Thanks so much. Love this site and everyone here has helped so much.
-
I’ve noticed a hard lump/area where my tumour was taken out via lumpectomy. I only noticed this after radiation. I had 16 regular and 4 boosts and only finished last Wed. Has anyone else had this
0 -
@katiejane yes, a hard lump next to the divot where the tumour came out. The entire breast is more firm, and consistently larger than the other one.
0 -
KatieJane,
Yes, I noticed a hard lump after radiation and I most definitely agonized over it and called my surgeon and my oncologist and tried to get appointments right away and I imagined that my breast was much bigger than the other and that it was hugely inflamed. I was full of dread, I was sure I had IBC. I was kind of a nervous wreck. Then I had a radiation doctor's appointment (I really like my radiation doctor.) She said everything was normal. From then on, I quit worrying and the breast has been healing better (getting squishier) each week.
During that time -- and it doesn't seem like it was too long ago, months really -- there was no lumpectomy lounge here at breastcancer.org, I couldn't find anybody to ask. So I'm going to say probably just check with your doctor, but it's probably nothing, just like mine was nothing
0 -
Hi all,
I have my lumpectomy next Wednesday. I’m not too worried, but I have a question about pain after. I’m concerned that with the “opioid crisis,” there may not be adequate pain control afterwards. With my first lumpectomy, I really only needed pain meds for about 2 days (and I overdid it one day, at that). I’m 14 years older and definitely seem more sensitive to pain now. I guess I’m spooked about horror stories of people with broken bones being told to tough it out and “just take Tylenol” and so on. We live over an hour away from the hospital, so if I had a rough time with pain, it would mean 2 hours of driving to get a written prescription. Did you have adequate pain control at home? Did your doctor send you home with some sort of painkillers for a few days? Just interested in others’ experience...I’ve not seen this addressed in research.
Thanks!
0 -
Astyanax66, I was given a prescription for something that my kids filled for me while I was in surgery. I was given something for pain in recovery and then just took regular Tylenol, mostly at night. I was never miserable or felt the need for more than Tylenol. But each of us is different. I was 69 at the time of surgery. I am small breasted. I did wear a Genie bra for awhile. Each of us react differently and it's possible your experience this time will be different than last time. If the hospital gives you a prescription, fill it. It is always better to stay on top of pain. You may never need the prescription. And you are probably a tad smarter about taking care of yourself post-surgery.
Good luck and let us know how you fare!
HUGS!
0 -
astyanax - Yourbreast surgeon or plastic surgeon should prescribe pre surgery pills, as well as some kind of pain pills. My PS had a prescription for Tylenol with codeine, but I didn’t take but one pill. He also gave me a prescription for anti nausea (zofran) which I used later for chemo. I could open a drug store with all these excess pills!
0
