2013 Sister Warriors
Comments
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I'd put myself in the control freak category, and a couple things BC has taught me is patience and to let go and let others.
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Cuetang, ReneenOH, Rmlula,TMM60 and MShelton, and all other sister warriors, thanks for the welcome. Glad to be among sister warriors that can relate. Thanks also for the kind words. I know I am fortunate for being as well as I am but it is weird when I look in the mirror and see my missing breast or am in pain from one of the fills, I realize--I got Cancer! That makes me feel different when I am out with friends. I refuse to wear anything so I disguise my whop-side with ruffle tanks with cover over light shirts or with scarves that hang over my right side.
. Yeah, the people that knows I have had a mastectomy--I catch them checking me out sometimes. It is just curiosity--especially now that I am getting the fills and blowing up for with the TE. Trying to get use to it--but yeah, there are times I do feel different. I think it is just a Cancer thing as some of you ladies have said. Really trying to get a handle on Cancer and all the changes that happened since the diagnosis in Feb. Wow!! That's the roller coaster but I am in it for the ride. It is nice to have sister warriors in it for the ride with me. Hugs to you all!!!0 -
dwilli4483-- after I returned to work from my bilateral mastectomy, it was interesting to see the reactions of folks at work that knew I had surgery. One or two of them were blatantly checking out my chest. But then again, I realized that in the past few months, there are more folks that have seen my naked chest than all my living years combined...
so to heck with them! Fellow IDC sisters-- have any of you traveled since diagnosis? I'm up for my first flight since all this BC crap started, and am reading about compression sleeves and so forth and am a bit confused now. I certainly don't want to develop lymphedema, so I'm thinking a compression sleeve may be a good idea for the flight? Or is that really necessary? I've combed through a couple of the threads on BCO but like everything else, it doesn't seem like an exact science or consensus to what to do...?
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Cuetang,
I'm having the same dilemma...sleeve or not necessary? I'm going to e-mail my surgeon and ask her opinion. I had 8 nodes removed...3 by the surgeon for the SNB and I guess the actual mastectomy took a few extra out. So I'm not sure what is needed.
Also, just had my 3rd AC treatment today...one more to go...YAY. Then onto Phase 2, Taxol and herceptin. Hopefully that will go as smoothly as the AC has, so far.
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Hi y'all
Cuetang - I would recommend going in for a fitting and purchasing sleeve for your flight...better safe than sorry.
However, before rads flew 3X no problems.
After rads got a sleeve and use for flying, housework, and gym. No LE please
Sometimes they take a few days to receive...if the must order!
(((Hugs)))
Cindy0 -
LittleLuLu - Congrats on only 1 more chemo tx! Yippee brave warrior. Sending healing thoughts for current and future tx to be SEs free:)
My BC team recommended a compression sleeve for LE...7 nodes and rads. Discussed my physical activities & travel plans (flights and altitude Rocky Mts Tahoe) so better to take preventative action. LEDivas has some cool sleeves...got a dragon tattoo...love the book...59 yr girl with dragon tattoo kicking the c-hornets out of her breast! Ha0 -
Thanks Cindy! Made an appointment for a fitting tomorrow, will be slightly clueless on what to get. You're right, better safe than sorry! Now i'm seeing dragons...
LittleLulu-- Hopefully your surgeon will be helpful in answering the sleeve question. Also -- keep kicking that chemo butt!
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I had no node involvement and only the sentinel node removed, but the sleeve was still recommended by my surgeon. I fly a lot for work and work around horses who pull and require me to lift a lot- so better safe than sorry, I think. I will be using it when I fly.
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Hey Cindy, I'm being a nosy Nellie...but why did they take 7 nodes? I thought protocol was to take a couple, and if OK, stop there.
Sending positive thoughts that tx continues to go smoothly for you LittleLulu.
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Hi sisters, I just got the pathology report from all the testing and biopsy. We already knew that I have IDC and suspicions were confirmed that there is lymph node involvement. Definite one possibly two more. I am ER+,PR+ and Her-2 is being redone as it was a 2+. I saw the radio. oncologist today and he led my husband to believe this is no big deal. (I still haven't see the chemo oncologist or my BS for the plan of action.). He, the dr., also wouldn't look me in the eye. What's up with that? Am I making too much of this? I realize there are many pieces still missing, but is this really going to be a walk in the park? What side effects do the receptor drugs have? How do I know if the sentinel node is involved. Sorry for all the questions, but that is what I am left with, and really would appreciate some answers. Thanks, Susan
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Hi Susan, I can't remember your situation--you haven't had surgery yet, have you? It would help to know your details to comment on your drs. How big was the tumor they biopsied?
People have different reactions to the receptor drugs--some horrible, others none at all.
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No surgery yet. Do know my BS is partial to lumpectomies as she discussed this during my first visit! The tumor is about 2.4 cm. One node had a positive tumor in it, the other two were found on one of the extensive tests I went through yesterday, so I don't know much about them. Something about a dissection was mentioned, which I assume involves surgery, possibly during during lumpectomy? I had CT, bone, chest X-ray, MRI, (don't want to do that again)' blood work , which I wasn't given a copy of, that said something to do with Ca25-29 as well as other stuff. I am happy to say that the cancer hasn't gone to my other organs! I know I am in a bit of a fog, but I don't think I am out of it. I guess I'm having a hard time believing this will be a walk in the park.
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If they found other suspicious areas through screening tests, then they would want to biopsy those sites in order to determine if they are cancerous as well. If you have multiple sites of cancer in the breast, it would be more likely to need a mastectomy. I had multiple sites in my screening tests, and rather than have those other areas biopsied (to see if lumpectomy was still an option), I just told my BS to remove the breast. As it turns out, the other sites were also cancerous, so a mastectomy was imperative in my case.
With lumpectomies, radiation is the usual protocol. I'm having a hard time following what nodes were taken from you (did you have a sentinel node biopsy? Usually they do that at the time of surgery, but you've had node biopsy already [?]), but generally, if nodes show up with cancer, they assume it has left the breast area and would want to treat with chemotherapy.
Your doctors may be waiting on all the information to tell you what they think would be the best treatment plan would be. Pathology is done on the tissue that is taken from surgery, so they won't know for sure what you are facing until post surgery.
I hope that is helpful to you. I don't mean it to sound scary.
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No, you don't sound scary at all! I appreciate your giving me the information. My biopsy indicated node involvement and the cytology report indicated adenocarcinoma. The CT confirmed as did the MRI noting several nodes. I haven't had a sentinel node biopsy and just found out where that is located. As for hormone therapy, it scares me a lot. Tamoxifen was not my mother's friend. She died within eight months after her BC dx.
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Sorry to hear about your mom Sgc728. Sounds like her BC was found at the most advanced stage; tamoxifen wouldn't have been much help at that point (or was she receiving other treatments?). I am on tamoxifen, and also am having chemical ovary suppression (going for as much estrogen elimination from my body as possible). My only SE is hot flashes, which are not bad to deal with. I am being woken a couple times at night, so not getting the best quality sleep. But, this is relatively new--still working through things.
MRIs can have a lot of false positives, just so you know. And, it's a screening tool--the only way cancer can be determined is through biopsy (or found through surgery). All of this is a lot to keep in your head. If you haven't read this section, I'd recommend you do so, and refer back to it as more information about your situation is provided: http://www.breastcancer.org/symptoms/diagnosis
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Sgc~~My Aunt June ( my favorite) had breast cancer in 1993 at age 67. She didn't get regular chemo, but some kind of shot that she drove to the hospital for everyday for a year. She took tamoxifen for 5 years and never once complained about any discomfort. She just passed away last June from a stroke. She was 19 years cancer free.
They won't know the full extent of BC until they get the path report after surgery. There could be more involvement or less. The hardest part of this whole battle for me, was waiting on that path report.
You'll get through this and come out the other end of the battlefield stronger than when you started.
Blessings
Paula0 -
Hi y'all
(((Sgc728))) - ugh...waiting for all the pieces and having just enought to make the mind race ahead. Not sure how node dx was done, but usually it is done with surgery lxormxorbmx.
Often if T is large MO will give rounds of chemo to shrink and stop cancer in its tracks...chemo has come along way so don't scare yourself...there's a fighter in you warrior.
I'm taking AI for HT and doing fine. I had a major panic attack in MOs office they day I went in to discuss HT and receive RX. Feeling better about it now...motivated...I think before I was just shell shocked from dx to last rad. Strokes on both sides...didn't want to start with tamoxifen.
Sending calm confident peaceful thoughts:)
Renee - 7 nodes. SND hoped for 1 or 2, but 5 turned blue and my pre-op MRI showed 2 other suspicious nodes ...which didn't turn blue but are gone. Post-op MRI showed all good so BS did good. Rads zapped half my under arm good so shave only top 1/2...no more hair so increase risk for LE and I'm active. Preventative measurement...
Your exchange is close yippee!
Cuetang&TMM - happy flying, happy travels...there one really cool sleeves out there just depends on your mood and discretion ...ha!
Stand strong warriors!
Cindy0 -
Sgc728-- it's definitely a rough time when you're just getting all the puzzle pieces and can't quite put it together just yet. Hang in there! As for hormonal therapy I've been tamoxifen for close to a month now and so far so good, just some minimal joint stiffness at times.
By the way, I noticed you are in VA, are you located in Northern VA? We have a group of ladies that get together for lunch once a month and you're more than welcome to join us!0 -
Good Afternoon Renee, Soteria, RMlulu, and Cuetang, You all rock! Thank you all for responding. Yes, I do have just enough information to be dangerous! My mom had too little intervention, too late. However, she died peacefully, exactly how she wanted it to be! Her BC was missed and by the time she had an obvious problem, it was too late. You are probably correct in thinking the advanced stage was not receptive to the Tamoxifen. Glad to hear the MRI isn't definitive. This waiting game could really drive one crazy. I am still trying to practice patience, but I am an instant gratification type, guess I'll have to get over that in a hurry. LOL. Glad to hear that the hormone therapy isn't too bad. I foolishly thought I didn't have any hormones due to complete hysterectomy at 45. ( I had 5 separate different types of tumors in my left ovary and all were benign!). Ok, I'm an English teacher, not Biology, but still feel a bit dumb! I haven't had a hot flash in over 5 years! All in all, I know inside that I will be fine. I never retreat or surrender!
Cue tang: I live iin southern Virginia, about 1 1/4 hours from Va. beach. Wish I could join you!
Thanks again for being here for me. You have made all the difference.
Susan0 -
OK, no one told me about needing a compression sleeve to travel! Hope I didn't really need one because I had to fly aross the country for business last week and will be flying home on Saturday and.....no sleeve. I feel OK, though (except for my breasts still being a little sore post-op)--no arm pain or swelling or anything. I only had two nodes out, though, although it sounds like people can still have issues. Oh well, nothing to do about it now, I guess! Hoping for the best.
Haven't been on the board too much the past week or so because work has been so busy--I am soooo looking forward to getting back home. And to starting rads on Monday I want to get it over with!
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Nayma - relax...I flew 2 weeks after lx home to TX 4hrs. Just tried to spend some time with arm evelavated above shoulder heart when you can. Ie like after surgery
After rads consider sleeve especially if your underarm is zapped. Discuss with your BC team.
Good Luck with rads...you will rock zip zap!0 -
I was just diagnosed on 5/15 with IDC left breast with lymph involvement. This seems to be going unbelievably quickly compared to so many I have read about, and I am still trying to wrap my head around it all.
I had a mammo at a mobile unit on 5/2. Thy called on 5/6 to say there was an abnormality and they wanted to do a follow up on 5/8. Went in for another mammo...still seeing the spot (heck, even I could see it!), so they did an ultrasound immediately. They did an ultrasound of the mass and the auxiliary lymph nodes on the left side. Shortly after that, the radiologist came in and told me they were recommending a biopsy, but not to worry...it could just be benign...look on his face told me otherwise.
Core needle biopsy done on 5/13 on both mass and lymph node came back positive for moderately differentiated IDC in both mass (1 cm) and lymph node. The pathology from the biopsy said ER+/PR+, Her2 -, MIB1 25-30%.
Met with breast surgeon who scheduled an MRI on 5/24 to determine if there was anything else there. MRI showed another area of concern, so I had a stereotactic biopsy on 5/28...those were just calcifications, so not multifocal.
I am scheduled for a lumpectomy on 6/18 with radioactive seed placement on 6/17 (with axilary node dissection using radioactive tracer).
I know I will be having rads, but the pathology from the surgery (oncotype?) will help dictate what other treatments are recommended (chemo and/or hormone therapy).
My question for you courageous ladies who have been in this battle much longer than I have is this: does this sound rushed? Have I missed things? Anything else I should be asking? I was referred to my breast surgeon by my PCP, and feel VERY fortunate that she is a good fit for me...she is patient, kind, direct, nationally recognized, etc...but I just want to get some thoughts from those who have/are walking in these shoes.
Thank you!!0 -
MotherT~~Everything sounds right on target to me. There are others on the boards I've read over the months who had surgery within 2 weeks of dx. It sounds like they're covering the bases.
Before surgery they will most likely get Bloodwork, chest X-ray, urine, etc. Depending on stage after final path report from surgery, they may do other scans, ie. bone scan, MRI, or pet scan.
Your oncologist sounds wonderful. I have a female too, and I love her. Like you said, A Good Fit.
Blessings
Paula0 -
MotherT - Welcome and Wow! What an awesome BC team! They are on top of your care...very blessed warrior!
Yeah, no waiting ...you have a plan and you are gonna be fine and do great:)
Catch your breathe. Now go shopping for dove soap, tops with front openings, sport bras with front zip Walmart danskin now 2X larger, stool softener yeah, and something that makes you smile:) do your hair prior...color cut hubby's aren't the best at glam stuff.
My family gathered for some fun prior and support after. Recovery from LX is easy...just don't overdo and be very careful with the arm...no overhead movements.
Make sure you discuss with your BS when and how you will receive results for margins and nodes! Confirm day of lx so you know. Path comes slowly and in pieces so don't panic if it takes some time.
Sending calm confident thoughts...you got this brave warrior!
(((Hugs)))
Cindy0 -
Welcome Mother T. Glad you found us but sorry you are joining our club. Everything you described sounds typical and normal. You have a firm grasp on what is going on and what to expect.(even if this all probably feels surreal to you.) As Cindy says, prepare for surgery. There is a thread with tips.
728, we all struggled with being patient! Perhaps hormone therapy will be easy for you since you had a hysterectomy.0 -
Cuetang, I also find it easy to show my relatives my chest. Heck there is no breast there, anyhow. I know others are curious since I am whop-sided--getting not to care, though.'
Okay, I just took my first flight from Il to VA, yesterday. I was worried about the compression sleeve too. I am here now visiting my DS, D-in Law and 2 grand kids ages 2 and 6. What bundles of continuous energy--oh but I am getting off the topic. Did not want to pay the price I saw at the bra shops so I ordered a compression sleeve XL off Ebay. Well maybe that was the mistake. The sleeve was okay but it was extremely tight at the top and uncomfortable. So I carried the sleeve in my purse on the plane--not wanting to wear it, but was extremely worried through out the flight. I had a fill of 100 cc's just two days before my flight and kept imaging that the saline was moving about but the PS had told me I would be okay . Maybe I should have asked the BC surgeon, instead. The total flight was a little more than 3 hours.. All went well, I did feel some pressure on the surgery side --maybe it was my imagination, though. Going back in two weeks--can't give any advice to anyone else. If you find out something I need to know before I return let me know and I will go out looking for one that fits well.
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A month after my mother had an abnormal mammogram, she finally had a core biopsy and found that she has a tumor that is less than 1cm. IDC was the only data we have recieved. Now she is at the beginning of the process and trying to make decisions about surgeons, etc., We are thinking about Shands, Gainesville and have found a Dr. Christiana Shaw and Dr. Spiguel (Both seem to be relatively new docs) - We are also looking at Moffit in Tampa and even here in Tallahassee...for post surgery care (Oncology)
Does anyone have any thoughts regarding next steps. She is supposed to see Spiguel on Monday. This is a month now that has gone by, due to a woman's clinic in Orlando taking 3 weeks to perform the biopsy.
More about Shaw (blog post related to her credentials)
Any advice is much appreciated.
She is to see Spiguel because Shaw is tied up for a week. The scheduler said that Spiguel is very aggressive and not sure why it has taken so long.
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Dwilli4483 - your on vacation:)))
check with your BC team about bra&sleeve insurance may cover costs. But do go for a fitting and have a profession measure and assist you in the proper size/fitting.
There may be a fitter in your area ... Call the local BC center and ask.
I had 7 nodes & rads...BC team gave RX.
Remember we're all different
I'd be more concern lifting and playing with the grand kiddos...who can resist...it's what life is all about:)
Enjoy your visit!0 -
I'm sorry to see this wonderful group get bigger, but wanted to welcome those that have just joined us. Tallydiver-- could your mom see both surgeons? It's always good to get a second opinion on things. Additionally, can you request a copy of the biopsy report? You will be able to get a lot more information and be prepared with questions to see the doctor with. I had to get copies of my mammogram film, ultrasound discs and do a pre-op MRI before one of the surgeons would see me. It's different with everyone, but I wanted all my reports from the radiologist.
Dwilli--have fun on your vacation!
I just went and got two sleeves-- lymphediva sleeve with gauntlet and a sigvaris advance sleeve. I have no clue if either of these work but am going to give it a try and i think are as comfortable as it will get for a compression sleeve. I was fortunate that the company brightlife direct is in the city so I was able to stop by during my lunch hour and get fitted and get the sleeves. They do cost a pretty penny! However, I think I'm ready for my flight this weekend. I think we only wear the sleeve on the side with the nodes removed?0 -
This was the response from my BS office. I think I will forego the sleeve, flying from Long Island to SC...
We do not tell patients that they need to wear a compression sleeve and gauntlet after sentinel node biopsy while flying. If you wish to do so, you may. If you were planning a long flight you may want to consider this in the future. While traveling, the most important thing is to stay well hydrated, to move your arm (you may want to even just consider using one of the 'squeeze balls' to increase your circulation) and to be mindful when carrying your luggage 0
