Lumpectomy Lounge....let's talk!

I popped in as a newbie a week ago, life got ridiculously busy with my girls, my sweet cat died unexpectantly, my beloved little Mini Cooper died unexpectantly, and well, you know. Now I'm back and had some time this evening to read through all of dozens of posts and they have been very interesting - it's been interesting to see the developments in several people's lives in one week.

Loves to Fly, you mentioned many posts ago that you're in Thornhill and wondered if I was at PMH as I posted that I'm in the Toronto area - I'm actually on the other side of Toronto from you and am a patient at K-W's cancer centre, which is incredibly convenient. The oncologists are affiliated with McMaster so that gives me great peace of mind. I've had my appointments with the medical and radiation oncologists this week and, although my pathology report was quite good, the LVI is a bit of concern so I'm doing the Oncotype test and we'll see what direction that points me. Currently they get results back in 2.5 weeks. I'll make my decision on treatment then, but in the meantime I have my fingers crossed for a low score.

I'm very grateful to have found this site and will enjoy the contact as I go along with my treatment, although it won't be in motion for a few more weeks yet. It's a good thing I'm a very calm and positive person or I think all of these delays would be a bit much!! Keeping very busy does help though, plus I've shared the news with only a handful of close friends/family so maintaining a "normal" life has been key for me. That said, I'm off to sleep and signing off again as we're up early for my daughter's out of town volleyball tournament tomorrow. I will continue to check in over the next couple of weeks though to follow everyone's progress and eventually I'll be able to post mine. Thank you again to everyone for sharing all your stories - it's incredibly helpful and reassuring to the newcomers like me.

Aw, Grazy, I'm so sorry about your kitty. Sounds like you have had quite a few things dumped on you recently. I feel that a positive attitude helps immensely in coping with BC. At least it has for me. Fingers crossed that your Oncotype score comes back really low!

HUGS!

Dear Sloan:  Your hair looks great.

Dear Beach:  Feel better.  Sorry but I don't know the answer to your questions.

Dear Iammags:  Yay for no chemo!! Yes, I am glad that my co-worker did not ask me if I was pregnant.  That did happen to me at a holiday party this year..."CONGRATULATIONS!"...My response was, "No, I'm not pregnant, I'm just fat."  I know that this acquaintance was "happy" for me and was wishing me well.  I didn't plan to respond in a mean fashion.  I just had to because I know that I am gaining weight.  However, I don't want to keep being reminded of this fact.  I am similar to you.  I was dx with bc on the last day of my PT for my knee surgery.  You had foot surgery and then a bc dx.  I had a breast reduction too.  My PS made my left/rad breast bigger too.  He knew that this breast would shrink from the rads.  My breasts are even now and all radiation burns are totally gone.

Dear ORKnitter:  Good luck with mammo.

Dear Peggy:  I am Ashkenazi Jewish too.  I had a battery of genetic tests.  I was negative for the BRCA 1 & 2 gene as well as for all other genetic tests aside from one gene.  I tested positive for a VUS (variable of unknown significance).  Now I know that I have something to worry about but I do not know what that is.  Rather comforting, not!  Thanks for the article.  It was interesting.

Dear Balding:  Great plan

Dear AmHess:  I am sorry about your margins not being clear.  I would have a second lx immediately rather than waiting and watching.  That plan would "play with my mind".  I had to wait and watch for 6 months for a "linear non-mass enhancement with rapid washin washout kinetics" - BiRads 4B - that could not be biopsied at the time that it was found (6 months after I completed rads).  The waiting and wondering was AWFUL.  I finally had the biopsy in November 2015 and ALH was found.  Thank God that it was benign although ALH increases my risk for BC.  Although I do not know about Phyllodes tumors, I would not feel comfortable knowing that the tumor extended to the margins.  For peace of mind, I would opt for surgery.  Good luck with your decision. I am happy that your mom is cancer free for 5 years and that the two of you are best friends.  That is priceless.

Dear Grazy:  I am so sorry for the loss of your cat.  That is absolutely terrible.  Pets are family members.

Dear Peachy:  I am glad that you are not having any SE's from the Ibrance.  I am glad that you are a part of the study/clinical trial.

Dear Froggie:  I did not have swelling with my rads.  As I posted to Iammags, my PS made my right breast smaller than my left breast because he knew that my left (bc) breast would get smaller from rads.  He did an excellent job with surgery and my breasts look absolutely amazing now.

Dear JCLC:  Your post was so informative.  Thanks.  I had a mold for my rads too.  I'm glad that you are finished with rads.  I hope that your burns heal quickly and that you are not in too much pain.  I hope that your back is ok.  The "exit" rads sound terrible and scary.  Good luck.

Dear Moondust:  Thanks for your post and for your caring comment.  Enjoy camping.

Dea Nancy:  You absolutely need to cry.  I cried too.  Sorry that chemo is required but you can feel good knowing that the chemo will kill your cancer and that chemo works.  It is a good choice.  Chemo is usually warranted for Grade 3 and node positive cancer.

Dear MLP:  I love your dogs.  Congrats on your son getting into the school.  Enjoy your trip.

Dear Molly:  I'm glad that your DD had the genetic tests.  Sorry that she carries the Check2 gene mutation. At least there is a plan and she will have close surveillance.  That is good.  You have so many situations to deal with.  I am sending you hugs.  You are a real trouper and an amazing person.  I wish that my daughter would be able to have genetic testing. It would be a great relief to me.  However, I was told that insurance would not cover the tests because I tested negative so she should too.  The VUS doesn't count for insurance purposes because there is no information about the VUS. 

Dear Heathet:  I am proud of you for saying "no" to your boss at work.  It is very hard to leave your students and your classes but you absolutely need to take care of yourself at this time. You will be on medical leave so you should not be working at all.  No phone calls.  They will figure it out.  You need to heal.  Good luck with your surgery.

Dear Grouches:  PET scans are not routinely done unless your MO thinks that you may have Mets.  Insurance won't cover a PET scan.  My oncotype test results took almost 4 weeks to obtain the score.  My genetic testing also took a very long time.  I ended up having to have my surgery prior to receiving the results of my genetic testing. Thank God that my results were negative (aside from the VUS).

Sorry if I missed anyone.  Good luck to everyone having surgery, rads, and chemo.

614, your posts are so sweet. I always know it's you without looking at the name. iammags, congratulations on the low oncotype Dx score!!

I emailed my MO to tell him that I am taking a vacation from the anastrozole. My SE's are ramping up to the point that I can barely function. I don't know how often he reads mail through the portal but I know he does occasionally because he's responded once. I made an appointment to see the ps this month! I'm going to finally tell him no flap surgery. I want implants and I finally decided to do the prophylactic mx on the remaining breast. I will call BS and make an appointment with her as well. I think I needed a break to think. After seeing my DD's genetic counselor I realized how little they know about this genetic mutation. I want annual MRI not mammogram and MRI each year. Plus my remaining breast has shrunk since I have been off the HRT and on the anastrozole. I probably don't have dense tissue anymore. Sorry for rambling on.

Nancy- I'm not going to lie... Chemo sucks. But it is doable. Like Sloan said... We can do things that we normally do, with periods of rest in between. And with a grade 3, you want chemo. You want the cancer killing, bad ass meds to get you through this. And you will get through this! And if you can tolerate her... Keep the nanny. You will need her. The last thing you need to think of is giving rides and being in a schedule, if you have that luxury. I have 3 too... So I strongly suggest to put her to work! Maybe she will be humbled once you start losing your hair. And I say that with a bit of humor... My cleaning lady is SO much better now that I lost my hair;)

Sloan- thanks so much for the kind words;) (hug)

Peachy- happy to hear that your trial is going well.

Chambo- I have the same schedule with 3-4 weeks off for rest. During that time I'll get my tats and go through a simulation. Good times!

I forget who asked about the dcis and oncotype... My oncotype took 2 weeks and they didn't do any markers as they didn't apply to me. And dcis grade 3... I'm leaning towards no chemo. It hasn't traveled outside of the duct... Lucky duck;)

Here I am with my dd celebrating last night at a favorite restaurant in NY. She tied the women's lacrosse programs caused turnover record in a single game at her college. She played awesome yesterday. How can I possibly miss these moments?? Chemo can't and will not keep me down! Another game today at 3;)

MLP3 -non supportive may have been candy coating it a bit. DH is anti-western medicine and believes docs are only trying to make $$. A discussion a few weeks ago ended with him stating that I should accept it as Gods plan and be ok with a slow death as it's obviously Gods will.

Oh boy created.... Yikes!

You are going to accept the western medicine, like we all have and you are going to fight and win.

I don't like meds and prefer homeopathy and a clean diet. But this is very different. Science needs to play a role here. I've learned to shelf my former ways and I have given into my treatment plans and I trust my doctors whole heartily. Dana Farber saved my fathers life. He is 72 years old, a still working executive who travels and is 14 years in remission from AML. I'm confident DFCI will do the same for me... And then some.

You may need to go it without your dh on this one. Added stress is not something you need through this.

CreatedOnPurpose, I'm sorry that you are experiencing so many challenges. That's difficult. Remembering that each of us is different, my recovery was uneventful (though I did have a slight infection that was caught early and treated with antibiotics). I felt fine right after surgery. But I did rest. My sons came in and took care of their father (he required 24/7 care and was unable to help out). I was restricted as to how much weight I could lift (no more than a gallon of milk). I took only regular Tylenol - just to make sure I slept.

Check with your cancer center for resources. My BIL and wife live there and it seems that there are excellent resources to help you out. Please don't hesitate to reach out for help. I can't tell you what to do about your spouse. Many women return to work (if they don't have to lift) within a week. But keep in mind that some do not.

Please don't put off your surgery any longer. You need to get that BC out of your body and do radiation and hormonal therapy (assuming your are ER+/PR+). I can tell that you are feeling overwhelmed with too many decisions to make. Concentrate on you and getting your surgery. Find help. Ignore everything else.

Let us know what we can do to support you.

HUGS!

Molly, nothing is easy, is it? I hope you find that now you have decided what to do about reconstruction and your mx that your mind will rest easier. Try another AI and perhaps you'll have better luck. Wrapping my arms around you.

Octogirl, there are studies ongoing that show that for some women on Arimidex that taking an antidepressant eases the symptoms (as does regular Claritin). An antidepressant sounds like a good idea since you say you are depressed - maybe you'll get a two-fer: ease the depression AND the AI symptoms! Try another AI - that's always an option.

HUGS!

Createdonpurpose - I'm so sorry you don't have the support of your spouse. Reach out to the people around you. I am so pleasantly surprised at how supportive co-workers, friends and casual acquaintances are when I share my diagnosis with them. Take care of yourself! You do have a purpose for your life and that is to live. Put your needs first and talk with your doctor. I believe God works in and through medicine. Prayers and good thoughts your way.

The lumpectomy that I had 16 years ago was a pretty small procedure but I recall still being out of commission for about a week. I just switched to the U of M cancer center and I am very comfortable with the dr I am using. Because I want to try the least invasive way possible, she agreed to a lumpectomy versus mastectomy. She does understand my situation and walking a fine line at home. My DH does not know about the significant increase in size or the secondary tumor at this point. I have known a little over a week and want to be able to make my decision without his influence . I suspect he will lay down the if you're not going to take my advice move out argument. To be honest I'm tired. I am one of the few who has pretty consistent pain from the location of the tumor. In addition, I will not have enough PTO to have the surgery until May, and I was just notified of a big promotion that I will be receiving, which has me concerned that I need to have all of those pieces in place prior to becoming the girl with cancer. I have shared my diagnosis with very few and have pretty much walked alone for the last 18 months hoping it would go away. I do have a church family, but the other part of the equation as that my husband does not want anyone coming to our home. He is a very private person, and gets very upset if someone comes over. UGG I hate this!

created I really don't know what to say, I'm so sorry you're going through this and your husband is not supportive. It almost seems like it would be better to go through it alone, then you will be able to get support from people that can be supportive, but obviously those are big words and easy for me to say. All I know is that your cancer is growing, and you need to start treatment soon.

I Arranged to have two weeks off work for my lumpectomy, but only ended up taking off one week. That said, my tumour was very small and there was only one of them, and I had no complications. I would count on two weeks

stellamaris - that's good to know. Did you need to spend a night at the hospital after your surgery? I'm going right from a bilateral mx to implants. My PS said I wouldn't need TEs because I have extra skin and pockets from my previous implants. He will be using AlloDerm to provide extra support. I'm eager to have the surgery - never thought I'd hear myself say that one!

Dear Peachy:  That is good advice to point out to Created that lx is followed by rads which takes weeks to complete.

Dear CreatedonPurpose:  I am about to give a sermon.  Please bear with me. 

I am so sorry that you are living in "hell" right now.  Sorry for being so blunt.  I cannot tell you what to do.  However, being around negative people "sucks the life out of you" literally and figuratively.  Negative people are "energy drains". You WILL die without treatment.  It is easy for your husband to spout his bs.  I wonder what he would do if HE were diagnosed with cancer???  I am sure that his opininion regarding Western medicine would be radically different if HE were facing cancer.  I realize that some people believe that God's plan is......  My view is that God created smart people, research, science and medical treatments.  Therefore, since medical treatments, medicine, surgery, radiation, anti-hormonal therapy, and chemo are available, then God must approve.  God does not want people to die when a treatment is available. If I am wrong then, "Oh Well", at least my cancer was treated.

I dated someone once who believed in Alternative Medicine only.  He felt that conventional medicine would cause more harm then good (i.e.-damage to the liver, etc.), similar to Iammags cousins' viewpoint. There was no way that I could sway his viewpoint, just as you won't be able to talk to your husband about this issue. He will feel that HIS opinion is the only opinion that is worthwhile. One day, my x-BF told his bs to a friend, whose young son has juvenile diabetes.  He told her that she should not give her son insulin because the body will "heal itself".  People should "Believe that they will get better and then they will get better."  She was FURIOUS with him.  He was so sure that his viewpoint was correct.  He felt that SHE was wrong!  Needless to say, I am no longer with this man. 

I am so sorry that you find yourself in this awful situation.  What I can surmise is that your husband will make every attempt to make you feel as if YOU are the problem and that YOU are doing something wrong for going for bc treatment.  How DARE you!!!  He will also act like YOU have NERVE to go against HIS wishes because HE knows best!!!  HE is probably the "smartest", etc, etc, blah, blah, blah.  He KNOWS and you don't...  He will probably make it seem as if HE has done EVERYTHING for you and how can YOU oppose his viewpoint.  He may be a narcissist.  Standing up to your husband may be extremely difficult for you.  However, if you put yourself first, you will be extremely proud of yourself and you will save your own life.  You will also be better off in the long run emotionally.  You will also be alive. 

You may be better off by yourself than in a situation where you are facing constant stress, negativity, worry, and definitely, unhappiness.  I cannot tell you to leave this man because it is not my place to do so.  However, what I do know is that your tumor doubled in size and that you now have another tumor of undermined size.  The tumors will continue to grow without treatment.  You do not want LVI or Lymph Node Involvement.  The longer that you wait for treatment, the worse the prognosis for you and the longer the recovery time from tx.  I am sure that you know this and that is why you are so worried.

The good thing is that you are getting a promotion at work.  I am hoping that will mean more money for you.  Maybe you will be able to support yourself alone???  Obviously, you ARE smart and capable.  Believe in yourself.  Someone mentioned help.  I agree. Definitely talk with the hospital social worker, the nurse navigator, and your doctor.  A support group for bc is a huge help.  Your nurse navigator or SW should be able to give you information about support groups.  Therapy is also helpful as is anti-anxiety meds.  There is a place called "Cleaning For a Reason" that will clean your house for free as long as you have proof/letter from a doctor that you have bc. 

You need to focus on yourself and you need to take care of yourself.  Your life depends on it.  As Heathet said, "It is amazing how people will step up and help."  I am not negating how hard all of this will be for you but PLEASE go for treatment and don't let yourself be bullied by your husband.

I am a single parent and have been for over 16 years.  My husband left me the day after my son's first birthday.  We were together for 17 years.  I was totally devastated.  We got pregnant with my son through science because I was not able to get pregnant with my son naturally. At that time,my son was 1 and my daughter was 4 and 1/2 years old.  I had just stopped nursing when my son was 7 months old.  I was working full time.  When my husband left me, I went into clinical depression.  It was extremely difficult.  That being said, it was the best thing that ever happened to me.  I know this now (not then).  I am SO MUCH better off without him.  I have been supporting my children totally alone since  February 1, 2000.  They have been with me all of the time.  Financially, things have been and still are so hard.  My x-husband does not help financially but he ACTS as if he does everything.  However, my belief is that it is so much better to be alone than with the wrong person.  I am so much happier now that I am divorced.  By the way, my x got remarried 9 months from the day that he left me. 

I had a double lx and a breast reduction to both breasts.  12cm of tissue was removed because I had 1 large tumor and 1 small tumor in different places in my left breast.  I had major surgery and I felt fine the next day.  I took pain killers just in case but I did not need them.  I also had 3 other lumpectomies in previous years and I went back to work the next day with all of those lx's.  The worst part for me was the SLNB.  That was painful.  Everything else was fine.  I took time off for rads because I was treated in Texas.  I was EXTREMELY worried about my job.  As a single parent, I need my job because I do not have any financial help.   Due to the FMLA, I was able to take time off from work and my job was safe.  I was really worried that I would lose my job but I did not.  That being said, I did about 80 hours of work (each week) in the 3 weeks prior to rads so that I would be "ahead of the game" and I did work while I was in TX too.  I did not want to be totally overwhelmed when I returned to work.  I did not get paid for any of that work and I had to use sick time.  Luckily, I had sick time saved up but I used it all up. 

I can totally understand the emotional, financial, and work concerns that you are facing.  If you do not have children then you WILL be able to get through this alone.  I did.  (However, I did have my mom and my brother.  My brother watched my son while I did rads.  My mother accompanied me to surgery in Texas and helped with arranging for my treatment in TX.  She was invaluable to me.  I am so blessed to have my mom.  I went to Texas totally by myself for my rads.  I was in Texas for the entire radiation tx (weeks) by myself without a car. No way to get to the grocery store. I walked to the hospital.)  The Chabad of Rice University helped me when I was alone in Texas.  They are the most wonderful people in the world.  It sucks but you can and will be fine.  You CAN do this.  If you have children then you will have to make arrangements for someone to help you with the care of your children.  If you leave your husband then you will not want to leave your children in his care while you are going through tx.  GOOD LUCK.  I am sending you prayers, hugs, and good wishes.  There is light at the end of the tunnel.

Sorry for preaching. 

Dear Peggy:  I cannot worry about my VUS because I have no information about it.  It would drive me crazy.  However, the genetecist thinks that it may be for colon cancer.  I had a colonoscopy and a pre-cancerous polyp was found.  The doctor said that I should have another colonoscopy in 4 years.  The NP at my MO's office looked at my records and she told me that I should have another colonoscopy in 2 years.  She told me that polyp is dangerous even though it was removed.  My MO is also a genetecist so I am really lucky.  I wll have another colonoscopy in November 2016.  I am so thankful for my MO and her staff.

Dear Molly:  Sorry about the SE's from anastrazole.  I am glad that you made the decision to have the MX.  That will alleviate worry and you will be symmetrical.  I am so sorry about the Chek2 mutation for yourself and your daughter.  I am glad that you are asserting yourself with your doctor.  You need to be your own advocate.

Dear MLP:  Your daughter is beautiful.  She looks exactly like you.  You are beautiful too.  Congrats to DD.  Enjoy your time in NY.  You are handling chemo amazingly well.  So are you LTF!

Dear Cathy_PA:  Wow - you had the same surgery as I had and then you will be having a BMX.  Good luck to you.  The SNLB is the hardest part of the healing process.

Dear Octogirl:  Good luck with your appointment and I hope that new drugs will work for you.

Dear Heathet:  Isn't it nice how people step up and are there for you when you least expect them to!  People are wonderful.  One of the teachers at my school is encouraging students to get involved with Relay for Life.  It is not for BC.  It is for a type of stomach/intestinal cancer.  However, she is taking my picture and the picture of 3 other teachers who are BC survivors for fundraising and educational purposes. (With our consent of course.)  It is amazing how much other people care.

Dear Iammags:  Thank you for your posts.  The reason that I don't think that these people meant their comments to be nasty is because the lady who thought that I was pregnant was happy for me.  All of my weight is in my stomach and I do look pregnant.  The work lady also meant it as a compliment because people eat a lot where I work and many people are heavy.  I was always thin and in shape and that is why my weight gain has been so difficult for me.  I am working too many hours now and I am not taking enough time to exercise and eat properly.  It is my fault that I am gaining weight.  The menopause and anastrazole only compound the problem.  My boyfriend (who knows this lady) told me that I should tell her that she is looking exceptionally old now!! ROFL and LOL.  At least HE is not telling me that I am gaining weight. He surely knows that I am gaining weight.  I am glad that he is supportive.

Dear StellaMaris:  It is amazing that you feel so good so quickly after surgery.  I am so happy for you and I am glad that you chose the D.I.E.P. procedure.  Good luck with continued recovery and health.

Hello to everyone else.

614, a thoughtful post. I'm sure CreatedOnPurpose will find a lot to ponder. I agree that being with someone so negative sucks the life right out of you. Coping with BC you have fewer inner resources to squander on those people.

It sounds like your medical staff is on top of things for that VUS. Good. That is unusual having an MO/geneticist. You found the perfect doc!

HUGS!!!!