Lumpectomy Lounge....let's talk!

Molly50

Tsoebbin, rads are not that bad and if one AI doesn't sit well with you there are other choices. Peachy, what a sweet post by your DH.

Lovinggrouches

Peachy, I lived in North and South Carolina near my mom's family until 4th grade, when we moved down to Louisiana to be near dad's family in Oberlin. It's a town on highway 165 between Lake Charles and Alexandria. I got married and moved to Starks, right near the Texas line before you get to Orange Texas. Do you miss Cajun food and crawfish? Lol!!!

mustlovepoodles

Went with my 23yo DD today to see the breast surgeon. She, unfortunately, has inherited the PALB2 and Chek2 gene mutations from me, and we have a terrible family history of cancer (19 in just the 1st & 2nd generations on both sides!) So, I went with her to find out what kind of surveillance the doctor would recommend.

The BS took it VERY seriously. She talked to DD in a way that was respectful, but she held nothing back. My DD is pretty pragmatic, like me, so she'd rather know everything than not know. Since she is young and has very dense breasts, they aren't even going to attempt mammograms. She had a baseline ultrasound while we were there and will have a baseline MRI next week. Then she will have one or the other every 6 months, forever. The doctor talked about future decisions, such as PBMX and Tamoxifen, but feels it is really really early to even consider those things. I was kind of surprised when she suggested that DD may need to make those decisions around the age of 35, though. That's a very short 12 years away.

I thought DD handled the whole visit very well. We went out for Girls' Day afterward and got cocktails with lunch (we NEVER do that!) Then we had mani/pedis, went shopping for jewelry, came home and picked up the guys, and then went to a Greek festival and ate our fill of Greek food for supper (so much yum!)

Peachy2

Poodles, so sorry that your daughter has to deal with such serious medical decisions in the future. Knowledge is power, though?

LG, I do miss LA food, especially this time of year when my FB feed is full of pictures of friends' crawfish boils. Once I told my husband that all I wanted to do was go sit on someone's carport and eat a big pile of crawfish and drink beer, and it was a cold and miserable spring here. He offered to invite friends over so we could eat boiled shrimp in the garage. Not the same thing. Not even close! I finally have a good source for andouille here so I can make good gumbo.

PontiacPeggy

Poodles, You handled everything perfectly with DD and sounds like your BS hit the right note. And ending a rather difficult morning with a 3 martini lunch and jewelry shopping was smart! At least DD won't be blind-sided down the road. I'm glad that she is going to be continuously monitored.

HUGS!

Lovinggrouches

Poodles, at least in this day and age, the knowledge we have allows the young ones to be able to know their risks and possibly avoid what we have been through. My prayers are that the moonshots program will really accelerate the research and I'm hoping to know for sure one day soon if my VUS of PALB2 will be discovered to know for sure if I have higher risk or not of recurrence. If only all of the genetic research companies would share their data!. If I had brca1 or brca2, they would have pushed for mastectomy. palb2 helps brca2 repair DNA and if proven to be almost as high risk as those 2, I fear that I haven't went far enough in treatment, although mastectomy was never even talked about for me. Hugs!!!

Lovinggrouches

Peachy, shrimp just AINT the same as boiled crawfish!! Lol! Thank goodness you can at LEAST make gumbo LOL! I could probably live without crawfish, but not gumbo!!!!!!You can mail order stuff now and can actually get stuff shipped to you like sausage and stuff but probably not crawfish lol!!! I bet not many people have ever heard of a turduckhen lol!!!!

createdonpurpose

tsoebbin-happy that your healing is progressing so well! I'm havin a heckuva time with pain over here, without round the clock painkillers I'm in tears (and I never take meds!) Tomorrow I'm going to attempt a short walk. Maybe some fresh air will help! At least the surgery is behind us!!

Lovinggrouches

Created, I sure hope the pain gets better soon! HUGS!!!!!

LovesToFly

peachy that is so lovely!

I haven't been around much, sorry I am trying to enjoy this "normal" time between chemotherapy and radiation, and also things have been crazy at work. I didn't read everything and cannot remember names but:

My kids are 7 and 13, I was OK alone with them (then 6 and 12) after my surgery, because the 12-year-old was able to do things that were required, but also it wasn't like I was trapped on the couch or anything like that. Having support for a few days will be helpful, but I could not find anything awful after my lumpectomy me except how tired I was!

Traci-after everything, surgery and chemotherapy, I still often wonder if this is real, and question if I really need to be doing all this. But I know it's real, and I know I do. I do not want to do radiation, it sounds horrible to me, and because I am very large breasted I'm quite worried about skin reactions, avoiding skin on skin is going to be tough! I certainly don't want to do hormonal medication, I am only 42 years old and not ready to go through menopause or anything like it (not because of my fertility, because of the side effects). My doctor has been very clear to me that these two treatments are very important to reducing my chances of a recurrence, so as much as I don't want to, I will be doing both of them. I have already started tamoxifen and in a few months I will add ovarysuppression, and radiation is coming up in two weeks. (that said, if ovary suppression is really awful for me, I may scale back to just tamoxifen).

So far tamoxifen has not been bad for me. I have sweats at night, but I would probably be still having them anyway because they never stopped after chemo. I noticed that I have been feeling a tad headachy, and sometimes for an hour or so will feel kind of tired and foggy, and that will then lift and I'll feel fine. I'm not sure if those symptoms are from the tamoxifen, left over from chemo, or just me not feeling awesome during change of seasons because I usually don't.

ejmann44

Thanks for talking about the surgery and the after. I am lucky to have kids that know how to do laundry and cook so I will be fine. We are spending the weekend doing laundry and picking up the house so we don't have to worry about things as much come Wed. My husband is the cook in the family so that is not a huge change for us. Luckily I was already working to make them more independent in their schoolwork. We use a curriculum with detailed instructions so they should be able to do some work. We live in FL and school all year, taking time off when we want to enjoy the better weather during the winter.

I have a lot of research to do on the hormones. The 3 women I know that had breast cancer recently all turned down the hormones. Not sure why. I also need to find an alternative to birth control. I take the pill to control my periods and can't leave the house if I go off of the pill. Now my BS said I have to stop taking them. He said I could finish this pack which I am going to do because I can't imagine surgery and one of my crazy periods at the same time. Did anyone else face the same situation.

LovesToFly

I did have to stop my birth control (mirena), however I wasn't getting my periods on it, and my periods are not heavy off it. So I'm sorry I don't have much advice. My periods have stopped From chemo. I've heard they may or may not come back on tamoxifen. I know a lot of women do not do hormonal therapy, I think it's because of the side effects. Also I think that if cancer has a lower hormone responsive percentage, then the benefit is also lower. As my oncologist said, "my cancer loves oestrogen". 95%er+.

Anybody heard from Sloane lately? I notice two weeks ago that it had been a while, I actually sent her a message on Fitbit but she did not respond. She hasn't been active there either.

Grazy

LTF - I remember she said she was going to France for 5 weeks - I only remember that because she was going to be away for so long and I wondered how people can pull that off!

LovesToFly

Ooh I forgot about that. Phew...I was worried!!!!! #chemobrain

Grazy

LTF, glad to hear you've been enjoying "normal" life in between chemo and rads! Enjoy the respite.

mustlovepoodles

Oh gosh. DD had some kind of anxiety attack on her way to work. She she told me that she felt funny, began to have tunnel vision, and pulled off because she knew something was coming. After she sat there in a couple of minutes it cleared and she went on to work

I don't think she had a seizure; she has had similar episodes. She has a long history of anxiety anyway and I think this was an anxiety attack, but a bad one. If it happens again today I'm going to call 911 just in case it's a seizure.

iammags

Created- Why aren't you taking the pain meds? You don't have to suffer. You shouldn't be in so much pain and misery. If you are in tears please call your MD and tell her about it.

LG- That is a very generous thing that you're doing with the donations. Good for you. I've lived in California for my whole life and I know what a turduckhen is Not sayin' I'm gonna eat one, but....Now beignets, I'll eat those my the thousands.

Lovinggrouches

Mags, I have never had a beignet. I have always HEARD of them, but no place that I know of here sells them. Maybe I will get to try it one of these days. A turduckhen is good!!! Created, use the ice packs on and off. Sure helped me the second surgery I had. I was so out if it for the first, that I forgot to use the ice and regretted it the next day. I reminded the hubby for the second surgery, that if I forgot- to fill the bag and hand it to me lol

createdonpurpose

iammags-I am taking the pain meds. I just meant that I can't be without them right now. Somehow last night I ended up rolling onto the surgical side while sleeping...all of the fluid pooled to that side and it was awful! (Not sure how long I slept that way). Good news...this afternoon the pain has lessened considerably..fingers crossed that I'm over the hump!

mustlovepoodles

Created, put a small pillow or folded up towel under your shoulder to keep you from rolling over that way.

HappyHammer

Oh goodness, Poodles!  So sorry to hear abt DD, but, your family has had so much happen in such a short time- all, anxiety producing!  Sounds like you have a good plan if it happens again...don't want to take any chances.  Take care!

Kokomo26

mustlovepoodles...sorry to hear about your daughter's.medical news and then her anxiety attack..I can totally understand for scary it was for her. Wishing her peace and healing vibes to deal with so much.

Created...I feel so bad for you , having so much pain. Wishing you much better days ahead.

ejmann...good luck with your surgery and recovery.

Peachy2, what a sweet husband and sweet post...

LTF, enjoy your break and dont worry, you did well with the scary chemo and you will ace the rads!

mustlovepoodles

I think this particular anxiety attack was directly caused by the doctor appointment we went to yesterday. The BS was thorough and although DD handled it very well, she is, at the end of the day, only 23. It's a lot for her to process and I think her body just reacted by shutting down. I'm just glad that she had the presence of mind to pull over before she passed out.

This poor girl has really been through the fire. She doesn't remember a time when we didn't have some kind of medical crisis. She was 2 when her little brother was born severely mentally & physically disabled, quite medically fragile. She was 7 when DH had a brain tumor, 9 when he nearly died (the first time!) from septic shock. She suffered a year-long bout of some kind of painful joint condition when she was 10, never diagnosed but the ped rheumatologist told me that he was pretty sure it was going to be something related to rheumatoid arthritis, eventually. How right he was--she was diagnosed with ankylosing spondylitis last year, an autoimmune arthritis, and then fibromyalgia, which is very common with AS. Add to the mix her older brother' multiple bouts of depression, my own struggles with depression and anxiety, and now it seems that cancer has invaded our home through both me and my DH. And now she hears that she is at high risk for BC due to her gene mutations? No wonder she passed out!

Lovinggrouches

Oh poodles, prayers to you all. It must seem like the stress will never end! I figured stress was her problem, and she's so young to have that knowledge, but it's a good thing to know. She will now join us in our never ending worry about cancer. I'm guessing that the worry eases over time, I don't know though- I'm not at that point yet. Hugs!!!!

614

Hello everyone:  Work is insanely busy and I have had to work ridiculousy long hours due to many night programs that I must attend plus tons of work. I am basically working 15 hour days.  (It is graduation time.) That would be fine if I got paid extra for the extra hours, but unfortunately I am on salary.  I am totally exhausted and stressed.  Next week will be just as busy with tons of extra hours too. However, the job is rewarding. I am glad that I have my job so I can't complain. (Graduation is next week.  This week, I had one student give birth, 1 student get arrested, and another student was interrogated and he will be arrested in the next few days.  Another student was kicked out of her house.  I have had many students fail classes/required tests and they will not be graduating.  I have done home visits.  It is amazing what some people must endure and the problems that they cause for themselves due to poor decision making. Teenagers are not infallible althought they believe that they are invincible. I have also witnessed incredible blessings and amazing resilience/hard work from many of my students. I am SO LUCKY that I was born into my family and that I was raised by my parents.  I am extremely fortunate.

It is so hard to catch up after missing a week on this site.

It is amazing to me that the price of medication is so high.  How can anyone afford such high copays?  I am hoping that people who need Ibrance (and all other hormonal therapies) will get some kind of reprieve from the prohibitive price tag.  That (all) medication is essential.

I special order the Teva brand rather than settling for Accord.  I take Anastrazole which is the generic form of Arimidex.  It seems to be very difficult to get Teva and every month there is a problem with the order.  I have to pay more for Teva but it is worth it.  I am one of the lucky ones.  I felt fine after surgery, I had no problems with rads (although the fatigue settled in about 1 and 1/2 months after I finished rads), and I feel fine with Anastrazole.  The problem that I am having is weight gain (which totally sucks).  However, I don't know whether it is due to the Anastrazole or to the medically induced menopause (or both). 

For those of you who are worried about rads and hormonal therapies:  you will be able to do this.  You have overcome a bc dx, surgery(s), doctors visits galore, tests galore, stressful waiting periods, ups and downs with results, curveballs with dx and with tx.  You have persevered.  You will be ok.  If not, then your doctor will let you take a break.  Good luck.  I hope that you will get past your fears.  My thought is that I would rather do all tx that is recommended than chance having a recurrence because I did not follow the tx plan that my Dr. recommended.  Although rads, chemo, and hormonals are scary, they should save your life.  Not everyone has side effects either, and side effects are not always as bad as you envision them to be.

Someone mentioned "Radiation Recall".  What is that?  I never heard of it.

Dear Dorothy:  I am so sorry about your oncotype score.  I wish you the best with your decision.  If it were me, I would have chemo, without a doubt.  I say that even though I was dx with PILC.  Lobular carcinoma does not respond well to chemo, yet I would do chemo in a heartbeat with an oncotype score of 33.  Good luck and hugs. 

What is the "snorkel and nose guard" with rads?  My bc was on my left side so avoiding radiation to my heart was a concern.  I did the "breath hold technique." 

Dear Molly:  Good luck getting your surgery scheduled.  I hope that your "non lump, lump" is nothing serious.  Hugs.  Try not to worry.

Dear LTF:  Good luck with tamoxifen and your upcoming ovary suppression.  I did 3 months of Zoladex.  I hated the injections.  I opted for an oophorectomy so that I did not have to continue on Zoladex.  I did not want to take extra medication.  I am taking Anastrazole so I did not want to take Zoladex as well.  You can always stop the ovary suppression if you need to.  I was fine with rads.  You will be fine too.  You sailed through chemo.  Rads are easier than chemo.  (Of course, I never had chemo but I believe that is the case.)  Good luck and hugs.  I hope that you can find a way to alleviate your fears.

Dear Created:  I'm glad that your mom sent you meals and that you had your surgery.  I am glad that your mom is supportive and that your husband is coming around too.  I am so sorry that you have nerve damage from your SLNB surgery.  That is terrible.  I hope that your pain subsides soon.  Good luck and hugs.

Dear TBalding:  I hope that your surgery went well.  Feel well and hugs.

Dear Froggie:  My RO changed my boost plan at the end too.  I was supposed to have more boosts.  He decided to do more whole breast radiation and less boosts.  He felt that since I was dx with PILC, bifocal PLCIS, Infiltrating Tubular Carcinoma, and numerous atypias, that the whole breast radiation would benefit me more than extra boosts.  I was concerned too about having less boosts but I trust my RO.  I feel that he knows best and I am happy with my rads tx.  Good luck to you.  I am sorry that you had so many curveballs with your dx and tx plan.

Dear Sandy:  Good luck with your performance.  I wish that I could meet all of you in Hickory.  Have fun.  I hope that your husband has good results from his lung scan.   You are so knowledgeable and you give great advice.

Dear Moondust:  Sorry about your tooth.  I hope that you feel confident with your 2nd opinion doctor next week and that you are able to have chemo since that is your preference.  Good luck and hugs.

Dear MJS: CONGRATULATIONS on your weight loss.

Dear FGodmother:  I was fine after my surgery but I did not have drains.  However, the concern would be lymphedema and clots.  Definitely order a lymphedema sleeve for flying and move around often to prevent clots.  Good luck and enjoy your vacation.

Dear Z317:  Welcome and good luck with rads.

Dear Iammags:  I love your #.  lol.

Dear TSoebbin:  I hope that you feel better from your surgery.  I am sorry about your tooth.  Do not take any chances.  Do both radiation and hormonal therapy.  Listen to your doctors. Good luck and hugs.

Dear LG:  Congratulations on finishing rads.  You are so generous for donating to hospitals for cancer patients.  You are wonderful.

Dear 1 Step:  Thanks.  I am sorry that no one told you that you cannot have dental work if you have a port.  I did not know that either.  I wonder why?  (Many people leave their ports in for one year after tx.) I have learned so much from BCO that I did not know when I went through my tx.  I did not discover this site until almost 1 year after finishing tx.  I never knew about the cabbage leaves or about needing to wear a lymphedema sleeve while flying.  I fould out about the lymphedema sleeve from my support group.  However, I was having my tx in Houston, TX, at M.D. Anderson Cancer Center and I live in FL.  I flew 3 times without knowing about needing to wear a lymphedema sleeve.  Luckily, I had a lymphedema sleeve the 4th time that I went back to/from Texas.   You will handle rads well.  I hope that you don't worry too much.  Good luck and hugs.

Dear Hockeyparnt: I am sorry that you have to have a second lx.  Good luck with surgery and welcome.

Dear Peggy:  Congrats that your neighbors daughter wants to buy your house.  Sorry about the garage.  I hope that your DH's memorial ceremony will be lovely and that you can sell and move quickly.  Having to keep your house in perfect condition is very difficult.  My house is definitely "lived in". I am not Suzy Homemaker.  Good luck.

Dear Grazy:  1/4 finished with rads.  Wooo Hooo!  I'm glad that your mom is ok and home.  I'm glad that your brothers are helping.

Dear Karen:  How did you get 1 year of time off approved with FMLA?  I thought that 12 weeks is the maximum that is approved.  Take advantage of it.  Not being stressed from work is so helpful during tx.  Good luck and hugs.

Dear StellaMaris:  Good to hear from you.  I'm glad that you are doing well. 

Dear BMG:  Good luck and welcome.

Dear Poodles:  I am glad that your are able to go to Hickory.  I am so sorry that your DD must have such serious medical worries from the genetic tests and that she has anxiety attacks. I hope that she is not having seizures. Hugs to everyone in your family.

Dear EjMann:  Welcome.  You are so lucky that your surgery is scheduled 2 weeks after dx.  That is fast.  The waiting was HORRENDOUS  for me.  Good luck and hugs.  You should not do anything the day after surgery although you may feel fine.  You don't want to chance overdoing things and causing potential problems due to exertion.  You will be prohibited from lifting anything.  Your kids are old enough that they don't need constant supervision.  Take advantage of help from others.  You need to make yourself a priority and focus on healing rather than on taking care of others.  That is hard to do but is essential.  I wish you the best. 

Dear Peachy:  Your husbands post made me cry.  He is a keeper.  I am happy for you.

Sorry if I missed anyone.  I won't be able to read any posts all week next week due to working late throughout next week. You are all in my prayers and I am in the pockets of those of you having surgery and other tx's.  (You will know that I am there because I am uncoordinated.  Between Peggy and I, you will need big pockets because we will both knock everyone else over.)  I am wishing everyone well.

 

 

PontiacPeggy

Poodles, too many burdens for all of you. Sending you lots of love.

HUGS!

614

Dear Poodles:  I am so sorry that your DD was diagnosed with 2 extremely painful autoimmune diseases, especially at such a young age.   However, I am glad that she has a diagnosis.  That is much better than being in pain and having symptoms, yet not having a diagnosis.  Many times, doctors do not know what is wrong.  The worry and wonder is terrible.  At least, with a dx, there may be treatment options.  I am also sorry that your DD had the undiagnosed painful joint condition for 1 year when she was 10.  I hope that she does not develop Rheumatoid Arthritis later in life. You described numerous health issues that all of your family members have endured.  I give you so much credit for being able to raise 2 children while going through so much stress and uncertainty.  Good luck.  I am sending you and your family hugs and prayers.

ChiSandy

Oh, poodles, what trials you and your family have been through! Sounds like what your DD had was a panic attack, and no wonder. (Tunnel vision is sometimes a form of migraine aura too--my mom got the auras but not the headaches). She is a wise young woman, and my heart aches that she has so much to process so suddenly. Waiting for the other shoe to drop is tough enough at our age, but to be young and face that twice a year would stress out even Wonder Woman.

Gig went okay today--I handled the drive to Iowa City easily despite maddening traffic, and the "Music City" LympheDivas compression set worked very well--didn't interfere with playing at all and may even have kept the trigger thumb at bay. There were a couple of songs (out of 24) on which I flubbrd lyrics (even on a song I wrote), but we haven't performed together in 6 months--I'd chalk it all up to AI-brain, but my partner goofed on some chords and timing too. But all in all, we did well and even had some fans come down from Cedar Rapids. Will rest up (ate way too much carbo-fat on an empty stomach at late dinner) and if I make the free hotelbreakfast tomorrow, fine--if I sleep in too late I'll just have coffee and an Atkins bar, maybe a salad on the road.

I may buck my usual trend and just take my night meds and turn in now. Gonna have long stressful days the next week and a half.

jdfly

Hi all. I had a lumpectomy and sentinal node( 2 removed and both positive) surgery April 1 I had to do surgery again April 15 to get clean margins and declined to do more lymph node removal because there would be no benefit, since I knew I would be doing radiation. My question... did anyone have heavy bleeding and swelling? After the second surgery, my left breast swelled to 1/2 the size of my head, instant stretch marks. I m supposed to start radiation May 18, so I had to go back to the surgeon on the 13, yes, Friday the 13... to see if they could remove some of the blood. It was not fun, she was only able to remove 2cc"s. It is too coagulated. I'm now wearing 'Swell Spot' with hopes this will help

Molly50

Welcome jdfly, I didn't have a hematoma I had a couple pretty large seromas. I have heard good things about swell spot. I hope it goes down quickly. (((Poodles))) our girls are the same age. Mine took the news pretty well but her doctor didn't get into the details like your doctor did. I hope it was just anxiety and that she feels better soon. I found out today that my sister had a lx recently but thankfully it was a b9 lump. She didn't tell me because she didn't want to worry me. She said her surgeon wants her to have a BMX. So she's already met with the PS. My DS had his genetic counseling appointment so hopefully he'll get orders to have blood work done soon. 614, my goodness you are so busy!! I hope you get a break soon.