Lumpectomy Lounge....let's talk!

Keys-Plez

KittyL...There's a thread called "You Know You're a Breast Cancer Patient When..." My favorite is ...when you go to your dentist and automatically take off your bra. LOL

I guess we just love taking off our tops. I had a similar experience with my PT. The poor girl was just in training. I think she may have dropped out of school after I flashed her. The look on her face!!!! Oops. My bad. LMAO

marion55

thanks for all info yes i hope to go back to work next weekend and some one i know said that they still get irritation from lymph are 7 years on xxx

Waterstreet

Well, I have been to so many docs my head is swimming. Taking your advice everything else is on hold; my surgery is this coming Friday. I am glad to get the input from the kidney doc so they can make sure any meds that affect kidneys will not be used. Good news my kidneys are operating at 49 percent once again and that is acceptable for now.

Saw the radiation oncologists yesterday, if what they find in surgery allows they will do the brachytherapy, starting Monday after surgery. My surgeon will reopen the incision and put in the cath tubes which will stay in until treatments are over then the surgeon will once again open up the incision to remove the cath tubes, treaatments will be for 5 days, after my surgeon gets the cath tubes in they will take me downstairs for the first treatment then I will have to wait 6 hours and they will do the second treatment and then after an hour I can go home. The treatments will be every day that week with the two treatments per day and thats it. If more than two nodes are involved we will switch to the radiation for 5 weeks @ 2 a day lower dose.

This new option was initiated by my surgeon to keep the radiation away from my heart and lungs he said because the mass is so deep and at 3 o'clock putting it over my heart.

He said he is so happy they never had to put stents in my heart but I may need them after.

Molly50

I'm loving these stories! My PS asked me one day if I had no modesty because I tend to sit and chat with him after my exam with my shirt off, lol. My rads tech is male and is always apologizing for having to expose me... I honestly don't care anymore. My leftie isn't even a boob anymore it's a device filled with saline.

Waterstreet

Also had a major crisis breakdown yesterday and it took place in my gyn's office so I was surrounded by support, they kept me there in the office for about an hour. That was the first time I cried and it was such a relief; my gyn's nurse is a survivior and she put her arms around me and told me to let it all out. I felt so good after that. I didn't even have an appointment their yesterday.

I went to find the social worker at the med center where all my doctors are since I was having no luck with the nurse navigator assigned to me and he found me at the request of the radiologist/oncology team. His approach was to lie to me and make it my fault she didn't respond to my calls. He didn't know the nurse in my gyn went and checked the navigators message board. It showed all my calls with only one call returned, the first one. He said If I had been answering my phone; I stopped him right there and said I have a smart phone and I showed him my call logs and asked him to show me where she called. He said I should make an appointment with him after my appointment yesterday to perhaps get counseling, he handed me one of his cards and walked out.

When my radiologist/oncology doctors came back in the room they asked me "What did you do to him? I said I just made him face the truth. We finished my consult and I left to see my gyn.

Keys-Plez

Good for you Shirley. Good for the cry. It was needed. It gave you the strength to crush that idiot social worker. Now you know you are a strong woman. A little crying here and there is not only inevitable but helpful.

Molly50

Hugs Shirley

Waterstreet

Thanks without your support I wouldn't have done anything about it. I also got the biopsy pathology report at least what was done of it. I was not complete. I was told to get it Monday because the docs got it Thursday.

Waterstreet

Hugs to you also!

Outrunning

What was that convo about people with unhelpful stories. DH is our I'd town and was all alarmed after talking to someone where he is. This person's friend had horrible SEs on tamoxifen. I should get a second opinion etc etc.

I had to explain that tamoxifen is the tried and true. Yes there are side effects but not horrible in most. And that this was the reason I was taking part in a tamoxifen SE study. Because they are trying to figure out the what and why of SEs.

Sigh like I'm going to tell my MO I won't take it because of friend of a friend of a friend had non-specific bad SEs. Everyone is a doctor right

Rosiesride

keys-plez ...I ended chemo/rads august 2014...saw mo every 4 mos, RO about the same...BS 6mos with a diagnostic ultrasound on right breast only, yearly mammo...I never got an MRI ...I had one scheduled but got sick...then the thought is that there are so many false positives for our ILC...even with mammos...I found mine when I felt a lump under my armpit...so no MRI for me...I can get one if I want but right now I don't want one...I still will see my MO every 6 months and whenever I feel the need...I was on tamoxifen for one year and he changed me to anastrozole last month...I will see him next week to discuss side effects and bone density ...so my schedule is mostly every 6 mos with docs...every 6 diagnostic ultrasound...yearly mammo...MO says if I start having pain that is different and does not go away to call him...my RO ordered a bone scan on my last visit as I had different back pain in my spine...I have a good team! The hardest part is being attentive to my own body and aches and discomforts and getting it checked out...it's so easy to just get wrapped up in work and stuff...I do believe that is how I will "catch" any red flags...self exams and knowing my own body...I don't think mammos and MRIs are enough for ILC...the sneaky bastard...good luck and feel free to PM me! Rosie

Rosiesride

outrunning...everyone is so different when it comes to side effects! My MO really likes tamoxifen as it is a good drug and has been around a long time...I was on it for a year and mostly only had mild warm flashes once in awhile...my uterus had some changes and my MO put me on anastroZole a month ago as I was post menopausal ...so the best advice is to try the drug and see how it effects you...then address concerns with MO....there are other options...but know what the drug may do and ask about supplements to ward off other problems...good luck! Rosie

Quirky74747

Hi all,

I had some more good news. I was dx with DCIS in August. Had lumpectomy 9/4. Receovered well. Found it was very small and clean margins, so no more surgery. Did Oncotype DX and met with my RO. My Oncotype score was 10, so very low. Good news! Taken together with the small tumor size and large clear margins, my RO recommended against radiation! I feel comfortable with the decision. I started tamoxifen 2 days ago and will stay on for 5 years if I tolerate it OK. So I am super relieved and hopeful that tamoxifen and more frequent mammograms will be the only interventions needed for a while! Thanks for everyone's well wishes at the different stages of this experience! I feel very lucky and grateful all around.

Kirsten

Quirky74747

I had a LX on 9/4 for DCIS. I was very happy with everything that happened. I had very little pain. Recovery was quick and pretty easy. I have very small breasts and the cosmetic results were very good, although it was a small area removed. The scar is around my areola and is very minor. I was exercising again after about 2 weeks and could fully lift weights and do everything without nervousness about 2 more weeks later. I also had no antibiotics because of a prior medical experience that makes antibiotics risky and I had no problem with infection or anything. Hope this helps!

PontiacPeggy

Kirsten, that's wonderful news. I'm very happy for you! Pop your Tamoxifen and get on with your new life!

HUGS!

MJS1266

Musosgirl, I am completely happy with my lumpectomy. Like you I had neoadjuvant chemo which wiped out the tumor and enlarged lymph nodes. Surgery removed the tumor bed and 4 lymph nodes all cancer free. I had plastic surgery at the same time, oncoplasty, reduction, and lift. I had full breast radiation and to the axillary lymph nodes. There is a study that I could have opted for which eliminated the need for rads to the axillary but because I had had cancer in the nodes I wanted to be conservative. Good Luck

Molly50

Congratulations Kirsten!

keepwalking

Hello all! I'm still waiting for additional news on when surgery will be because the surgeon is out of the office for a few days and the team needs to meet. But, I find that just knowing that the testing is done and that we can move ahead has calmed my anxiety and I feel more like myself.

Kirsten - Congratulations on the good report and no radiation needed! So glad you caught it early and are doing so well. Hoping all goes fine with tamoxifen and the whole experience will be well behind you!

kvgross - Woohoo!! Great news! Seems like we will both be moving forward and done with at least this round of waiting. I am amazed at what a toll the anxiety of waiting and the unknown can cause.

MLP - Positive thoughts are with you today as you get your port and hoping that you breeze through with no complications!

KittyL - Glad you are doing well after the re-excision and hope your seroma completely goes away soon. I have to say I can relate to your drama story I am glad that you had the strength and the good fortune to remedy the loss fairly quickly with no impact on your treatment.
Good for you for pushing for the Oncotype DX! My MO has already done the paperwork for ordering it, so it is set to go as long as my pathology report after surgery still puts me in the right category for it. I also am adopted and have no known family health history. I have wondered if I should ask for genetic testing because of that. I have found that when I answer the "Do you have any family history of..." question with "unknown - adopted", medical personnel tend to act as if it were a "no". I think it should instead be treated as a "possibly"!
Congratulations on the grandbaby! Our little guy and his mom are finally home from the hospital - 3.5 weeks after her emergency C-section and resulting infection! Both are doing well.

HUGS to all!

Keys-Plez

Keep walking...on those questionnaires about family history, if you put "possibly", how would that change their response?

keepwalking

Keys-Plez - Good question.

In terms of BC, I just read recently on an oncologist site that those diagnosed with BC that have a family history should be genetically tested for BRCA mutations. So that made me wonder whether I should be, even though I don't have a KNOWN family history. I'm not sure, but perhaps I will ask the question.

I haven't even thought that I could actually answer the questions with "possibly". That is an intriguing idea!

MissBee123

Hi All! Checking in again with some (hopefully) good news. It's also a response to Musosgirl's question. Since my diagnosis I have been fighting tooth and nail to get a lumpectomy. My breast surgeon has twice now recommended a BMX but I've continued to point out the statistics that a lumpectomy has the same survival rate as a BMX. She was concerned about the size of my tumor, which is large for a lumpectomy (4 cm) but the plastic surgeon has said he can fix it by doing a flap with tissue from my torso and/or back. Apparently this is called a large lumpectomy. Has anyone else had this type?

I'm currently in treatment purgatory and don't know whether I'm having surgery or more chemo. My tumor has not responded to chemo thus far and the doctors are all a dither about this. My case is being presented at a conference on Wednesday, at which point I will receive a definitive answer about next steps.

For now, I wait and hope that, whatever my treatment, I finally start seeing some results. I'm sick and tired of this stupid lump causing so much trouble!

Rosiesride

the tumor board also met to discuss my keeping the lumpectomy that was performed (I had 3/11 nodes positive, but clear margins). My surgeon also suggested a bilateral mx with reconstruction...I had my lumpectomy and did lots of research and gathered 2nd and 3rd opinions...I needed a decision before I started rads....so, mostly the findings were as you state...survival rate is about the same...I was BRAC negative, so that was important...I hated the turmoil I was in with deciding...there is so much thrown at you when they say, "it's cancer"....surgery, chemo and rads was all I could deal with and I wanted to get back to living...now, as my 2 year mark arrives in December, I am still ok with my lumpectomy...I do have dense breasts and LCIS throughout my cancer side...maybe one day I will decide to get a bmx, but I would also stay flat...don't like surgeries!! Good luck

marijen

Rosie how did your axillary lymph node surgery go? Any lymphedema, stiffness, cording, pain? I'm up next week.

MissBee all I know is someone here had a lumpectomy with 6cm. Keep trying. Get a second opinion

mustlovepoodles

My port placement went well today. I took a half a Xanax last night and another this morning before I left the house, so I was pretty chill but still able to make sense. I made sure to tell EVERYONE who saw me that I need plenty of Fentanyl & Versed (I have a lot of anxiety on a good day!) The last thing I remember saying was "I don't think this stuff is working"....then Zzzzzzz...I wasn't really out cold, but I was definitely not conversational.

So here I am 6 hours later...the sites are a little bruised, but not much. That was something I was worried about, after all the bleeding I did with both lumpectomies. The radiologist ran a bunch of bleeding/clotting tests, which came back normal (whew!) The sites are a little sore, but not bad enough to even take anything (that may change later, if they used the long acting Marcaine or procaine.) Heck, I wish they could have put some of that stuff in my left knee. I have bad arthritis and I've had to stop my NSAID for the last 10 days. I can hardly climb my stairs. If I didn't have breast cancer, I swear, I'd be getting a knee replacement!

bjclaywell

Hi ladies - quickly popping in to day hi and hugs to you all! Just got back from the beach, which was warmer than usual, with high humidity, and there was no AC in the condo - so it was kind of like staying in Phoenix...LOL

Had my "dry run" at the radiologist's office today - and they wanted to see if they could do a different kind of therapy on my "Boost" radiations - so I am now doing 8 AccuBoost for the boost ones, then on to regular whole breast radiation for the remaining bunch (28, I think). I start tomorrow. Not looking forward to it, but I AM looking forward to getting it out of the way.

Started getting my Tamoxifen prescription early - the pharmacist told me to "stock it up" while my out of pocket maximum has been met (ie - the medication is at no cost to me until January 1, 2016). I don't start it, tho, until after rads are done.

Anyway - off to pick up my kid - I'm sorry I didn't include personal notes - I haven't been able to get through the last couple weeks worth of posts...will try later this evening.

Waterstreet

Glad things went well.

Rosiesride

marijen....my surgery went well...I had the sentinel node biopsy/axillary and lumpectomy...that's when surgeon saw it went to lymph nodes...I came home that afternoon...laid on couch and took Advil...I had ice packs as well...I didn't know a whole lot, which I guess was a good thing...I was moving my arm around quite a bit and the next day was even outside messing around my fire pit...I am thinking the movement helped with my range of motion which was good...I did protect that arm from things, like heavy lifting and strenuous exercise. I noticed after a while the chording when I lifted my arm...I don't remember how long after...I would reccommend PTwith a lymphedema/women's specialist...I only knew to go after I joined this board! I received exercises to help with the chording as well as massage...that helped so much! I have not had lymphedema but I did get a sleeve and wear it if I fly or kayak...anything strenuous...so far so good! Well, good luck with your stuff! Rosie

Lisaj514

CFR fishing retreat (casting for recovery) this weekend. Also 2 yr from dx on 10/18/15! Haven't posted in a while but reading all posts from all of you. Look this up and apply. There are 40 retreats in 35 states. It's free and a wonderful experience. They only take 14 women per retreat. Do this or some other "cancer camp". So worth it for the mind and spirit and support and commraderie. I didn't get in last year but selected this year. This was upstate ny region. Salmon River near Lake Ontario.

Yup, it was snowing for part of it. We are a tough group of women! Below, my private river guide.

Y

molliefish

Did ya get one?

Waterstreet

Sure hope you caught a fish. Looks great except for the snow. I can't take the cold anymore. I used to lve in Waukegan, Ill. Was a lot younger then. We get very little snow here in Texas where I am.