Lumpectomy Lounge....let's talk!

Melclarity

Hi,

Thanks Jclc 83, my recurrence was Stage 3 aggressive breast cancer. Yes what you are saying is what my Surgeon said, theres no difference between the 2 of course if it were a huge tumor I would have had mastectomy in June but wasnt necessary. Im just surprised that I finish Chemo and the Oncologist wants me to think about it, when for me I was glad to finish Chemo and just start hormone pill and get on with my life I guess.

Thanks Quenmomcat, I think the way they look at it, because I had a recurrence and the way the cancer behaved as in came back aggressive 3rd stage and inspite of doing Radiation and being on Tamoxifen which should have stopped it completely is why...I do think yes its more peace of mind they want a mastectomy as it just gets rid of it. Having said that he said he had alot of patients who didnt opt for that only had lumpectomy, chemo and are doing hormone and are absolutely fine. I guess its the gamble isnt it?? who knows??

Jclc83

Welcome to the group

Melclarity

Thanks Jclc 83...am recovering from my last Chemo treatment yesterday, can't believe the relief knowing its finished..

Molly50

Welcome Melclarity, If you fill out all of your diagnosis and treatments and make them public it makes it easier for people to answer how it may apply to you. I think since you cannot have radiation again on that side your oncologist is being very careful thus suggesting mx. Here is an article about MX vs LX . It is a bit confusing but good information to read. Lumpectomy's Edge over Mastectomy

Melclarity

Hi Molly50,

Thanks for the article, I'll have a look. Yes its because they cannot do radiation again, so just being extra cautious..of course I would hope that Chemo would have done the trick I suppose.

PontiacPeggy

MelClarity, Welcome. You've come to the right place for information, support and comfort! Would you please add your NEW diagnosis in your profile. That would help us. To be clear, you have not had surgery for this diagnosis, correct? Or did you have a 2nd lumpectomy? You might also add the AI you are on (most likely Arimidex, generic anastrozole). The more information we have from you the more likely that someone with similar characteristics will be able to tell you her experience and why she made the choices she did.

Have your lymph nodes been tested this time? Did you have any removed in 2011?

I would recommend writing down your list of questions: why do you recommend a mastectomy and not another lumpectomy and ask both the MO and BS. Ask what the expected outcomes would be with each. As was mentioned previously, once you've had a mastectomy you can't go back. The breast is gone forever. That may be a good thing but first you have to know why it is the preferred treatment.

Keep asking questions and updating your profile. We'll answer!

HUGS!

Sloan15

I really dislike shaving my underarms with an electric razor...

queenmomcat

Sloan: will you be able to go back to a razor razor soon?

Molly50

That is funny, Sloan because I was thinking "why did it take me so long to buy an electric razor"? I love shaving this way, it only takes a few seconds!

PontiacPeggy

I never used an electric razor. I didn't bother to shave until I decided that it was safe for me - 2 or 3 weeks. I didn't really have feeling in my underarm until after a year. For some reason I haven't had much hair there since menopause. No complaints. I also never cut myself shaving my underarms. Can't quite say that for shaving my legs. Not often but it does happen. I used an electric razor way back when but not for the last 20-30 years.

HUGS!

Nash54

I never used an electric razor either...

ORknitter

Sloan, I have a funny story with the no shaving. I was sitting outside having a lovely discussion with our 25-year-old daughter when she just burst out laughing! My underarm hair was "blowing in the wind!" I hated the electric razor too. Now that I can shave again I've noticed the hair that was hit with radiation is gone, so I only have to shave half the underarm on that side.

Melclarity

Hi Pontiacpegg, thanks for the feedback, Ive added more information to my Profile. I didnt have my lymph nodes tested in 2011, as I had DCIS, so lumpectomy, radiation and on Tamoxifen. 4yrs later, bang..2.5cm in the exact same spot Grade 3 aggressive, lymph nodes removed, margins super wide and clear and Lymphs were clear too. So have just completed Chemo which was tough but am done, so time for recovering. I wont be put on Hormone meds until end of January when I go back to see my Oncologist. Basically what he is saying, he doesnt like how the Cancer has behaved, it came back same spot inspite of aggressive treatment for DCIS 4yrs ago, doubly alarming it came back whilst on Tamoxifen he said. Whilst Chemo he said treats the whole body, there is still a chance of recurrence again in that breast. I think he's talking of being one step ahead and safe guarding myself so that it cannot come back. Thing is my Mum had Breast Cancer at 40 had a mastectomy which she regretted and no treatment whatsoever. She had 26yrs free of Cancer, she passed away 7yrs age 66 unrelated lung cancer they said.

He did say plenty of patients dont do mastectomy am just annoyed as my Surgeon said the lumpectomy was just as good, now they're both going down the path of because its happened twice, why risk further get rid of it..uuugh! Just in two minds about the whole thing as I feel Ive done everything possible and here is no reason for it to return yet its unpredictable and originally he said if it came back it would be lung or liver not the breast..so I figure so why mastectomy then..you know?? I get the reasoning its preventative.

Like everyone I certainly dont want to battle this again twice in 4yrs has been tough with not alot of support and raising two teenage children alone. I havent been able to work, as suffered terribly through chemo and was so looking forward to putting this behind me and welcoming 2016..until he said that yesterday.

I think if I had a tumor and it was life threatening I wouldnt hesitate, Id do the mastectomy but I figure we're gambling again and it may just be overkill you know??

PontiacPeggy

MelClarity, there are no easy answers, are there? Have you been tested for the BRCA genes?

HUGS!

Melclarity

No I havent been tested for the Gene, I asked my Surgeon but I didnt understand what he was saying, basically sounded like its not available which I found odd. I'll revisit that again with Oncologist and Surgeon. No easy answers not at all. I guess I just have to make the decision that feels most right to me..funny thing is people in general have this attitude of just do it and then dont have to worry, to be honest, youd worry anyway regardless, I dont believe it will ever go away not when Ive had it twice in 4yrs.

Will ask more questions, thanks

mustlovepoodles

Melclarity, do you have a family history of breast cancer? I would think having BC twice in 4 years would qualify you for genetic testing. I myself have a strong fmily history of breast cancer and other cancers. I had genetic testing and TWO gene mutations appeared! Thankfully, neither of the BRCA genes, but still, my MO is strongly advising BMX. I go back to see my BS on Wed to discuss it further.

HappyHammer

Molly and Sloan...funny....y'all made me think, hmmm...I have only shaved under arms once since last April....guess menopause and chemo have made that possible....legs maybe twice. Would love for nose hairs and eyebrow/lashes to return. Thinking how nice the free "Brazilian" has been ....DH said it hasn't been free- that I paid dearly for it but hey...it's all in how you look at it

keepwalking

Melclarity - Welcome! But, so sorry you are facing this again after just 4 years. It is nice to have another "alternate time zone" buddy - it is now Monday night in the U.S. and Canada, early Tuesday morning for me, and Tuesday afternoon for you! Gives a whole new uncertainty to the meaning of 'today', 'tomorrow' in a post

What a tough decision. I feel for the whirlwind of uncertainty that you must be experiencing right now. I am sure that it makes it even more difficult that you are going through the after-effects of your last chemotherapy. So, first, I would say to not try to solve it all at once. Give yourself time to explore it, think about it, ask advice (only from those that you trust and have experience/knowledge - don't let yourself take in negativity from well-meaning but unhelpful sources!). Let yourself come back to a more normal state of mind after the chemo treatments. You don't have to make a rush decision.

There is so much to consider.

On the one hand - It came back despite lumpectomy, radiation, and tamoxifen. It came back more aggressive. You can't have radiation this time. You have a family history of breast and other cancer. You have gotten it twice before 50.

On the other hand - Statistics are not reality (it is possible to flip 'heads' 10 times in a row even though not 'probable') - perhaps it coming back was just a second coin toss. Mastectomy also is not a guarantee - there is a woman currently posting in the radiation group who had it come back in the same breast after just one year despite bilateral mastectomy, chemo, and tamoxifen the first time around.

Yes, whatever you do is a gamble. We wish it weren't that way, but it is. You find out all the information that you can - those 'statistics', and you come to a decision that you can feel comfortable with. That is the key - YOU are the one that has to be comfortable and confident in your decision. It has to work for YOU, and no one can make that determination for you. It is important to not rush into anything until you come to that comfort zone.

Sending prayers and HUGS your way. We are here to talk and support you, and a shoulder to lean on or cry on.

Melclarity

Hey Mustlovepoodles and Keep Walking, thanks for the posts!!!

The only family history I have is my Mum, no other history at all of Cancer in the family, so being a 1st degree relative I guess. Thing is she had a mastectomy and no treatment and was 26yrs free, but she always regretted doing the mastectomy. She passed away 7yrs ago due to cancer at the back of the lung, it was very sudden diagnosis and was gone within 6 weeks. So I havent had her through either of my diagnosis which has been tough, in terms of what she went through. I will definitely ask my Oncologist of getting the gene testing done, thanks for that!

Keep walking it is great to have found somewhere, where others are going through similar things, that can relate. You are absolutely right, in that right now I just want to recover from Chemo. I desperately want my life back after 6 months, and just want to enjoy life again.

I understand the Oncologist is looking at all of the things in a nutshell and I get it but right now I guess Im thinking I'll put myself through something so unecessary and it wont matter anyway. Then on the other hand, of course makes sense get rid of it, to ensure it doesnt come back, but again no guarantee. So time to sit and sift and have those discussions then see where to from there.

Thanks Gals!!!

Rosiesride

wow....Melclarity...I was where you are now, back in January 2014 after my breast surgeon did my lumpectomy and SNB and found it in my lymph nodes...3/11...stage 2 b....she then suggested a bilateral mastectomy with reconstruction...I have LCIS throughout my bc breast and I have dense breasts....which will make it hard to "see" if there are suspicious spots...no one ever saw my cancer in a mammogram anyway, I felt a lump way under my area...HA...as I am typing I realize today is my diagnostic 6 month mammo and 2 days shy of my diagnosis...life goes on!

Anyway, I did not want more surgery and like you, just wanted my life back...so she said do chemo for the next 6 months and do my research and homework about lumpy vs bx....with the percentages of recurrence over my lifetime with my LX and many opinions from reputable docs, BRAC gene negative, I opted to keep my LX...2 years later I am happy with the decision...

NOW, with that being said, for me and my breast type and depending on the type of cancer that would re occur ( if it did), I would probably do a preventative BX if it returned without reconstruction....I think??? Not sure if this long winded reply helps you but I totally get where you are coming from....it was one of the hardest decisions during my battle...but we are thrown all these options and dx in a short amount of time...I needed to think things through and not rush into anything....right now I am happy with my decision....but if mine came back after my chemo, radiation, tamoxifen and now anastrozole....I would sway towards bx, no reconstruction...with my breast issues that would be a strong option for me. Also I am older than you...turning 56 tomorrow, so if I reach 60, maybe it wouldn't be as traumatic?? But definitely would not do the reconstruction route...maybe just a large beautiful tattoo!, good Luck and peace to you....Rosie

PontiacPeggy

HappyHammer, you just started my day laughing - free Brazilian, huh? I love this group!

HUGS!

Nash54

Rosiesride....happy day before your birthday!!!

ChiSandy

(back online briefly--we have wi-fi as long as the ship, which is amazing, is docked).

Mel, your dx profile (PR-) and statement that mets would be to lungs or liver tells me your tumor is likely "luminal B," which is more aggressive (but less so thantriple-, triple+ or HER2+/hormone-). Most tumors are dual-hormone+ and HER2-, which makes them " luminal A" and less-aggressive--and mets, if any, would start first in the bones. Therefore, your MO is trying to stay ahead of your tumor, and though mx is not 100% protective, it does decrease the likelihood of both recurrence and the more serious types of distant mets.

brithael

Good news is chemo starts after Christmas and only 4 sessions three weeks apart. Also my LE therapist remeasured my arms after my flight, my left was actually smaller and I have full range of movement. She doesn't need to see me until end of February. Bad news is my port placement will be next week when my family is here for Christmas. Can't have everything.

mapagail

My sister had DCIS at 45; 20 years ago. She had a lumpectomy, no rads, no tamox, had a recurrence and then mastectomy. I had a lumpectomy and will start rads and tamox shortly. If there is any recurrence, then double mastectomy. I've had a fibroadenoma, intraductal papilloma and now the DCIS in my left breast. It's tired, wants no more. The scar from the papilloma is right next to my lumpectomy, so now I have 2 1/2" scar. I have small breasts, so looks like they took a boulder out of there! My sister is very happy with her results. She came to visit after her surgery and kept asking me to smell her nipple! She said it smelled funny to her. I said, "do you know how weird that would be if my husband came home and I'm doing that?"

Sloan15

I love this group, too!

Regarding the electric shaver, I was told not to knick my affected side arm with needle sticks, shavers, etc. I think it's because of my LE (which seems to be undercontrol these days, yay!). Molly, the electric shaver is fast, but not smooth...and the free Brazilian is over! (HH, too funny!) I'm waiting another week -I'm 11 weeks PFC- to have my brows shaped and waxed. It's weird to be cheering your brow growth one minute and then going, "Whoa, don't get crazy on me!" the next. For you ladies still in chemo, I hate to tell you that the leg hair leaves last and comes back first. GO FIGURE! (but, it's sign of hair regrowth)

octogirl

Sloan, I was told the same thing regarding electric razors, even though I don't have LE (but was assessed as being at moderate risk)...

Hah! I wish my leg hair ever really went away....still impatient to see more on top, though I am seeing small signs of progress...

Octogirl

marijen

I have an idea that mets go to where inflammation has damaged and the weakest areas of the organs, therefore mets would likely flourish in weakened bones caused by femara/letrozole? Maybe AIs that weaken bones should not be prescribed in luminal A breast cancer? My surgeon slipped and mentioned a study, is it possible I was given femara as part of a study without my knowledge and that is the reason surgery was withheld for six months and not for the reason to shrink the tumor? I suppose that would be unethical even for a teaching hospital? My BS said the "femara was given first to see if it would work for me (it's a study)". So many questions, so few answers.

Molly50

Melclarity, there are a few women on BC.org that have had recurrences with ER+/PR-/Her2- and have been told that their cancer is more aggressive this time around. I, personally, would have the mx but heck I already have had one and will be having the other breast removed in the future. I WISH I could have kept my breast after my lumpy but between no clean margins and my genetic mutation it is really not a good idea. In the long run you need to do what is best for you. Since your breast was radiated once you should talk to a plastic surgeon before making your decision.

myajames

Glad to see my surgery buddies are doing well! Also glad I was able to make some of you laugh

I've gone from boob sloshing, to nipple scratching, and now I have moved on to not so patiently waiting for pathology to come back.

So far I've been diagnosed with PLCIS, however after the MRI there was suspicion of underlying invasive carcinoma.. thus the node biopsy during surgery. So, doctor Google and I have been reading medical journals for fun. Not sure fun is the right word, maybe more like... for compulsive worry satiation. Good news is, whatever the news.. I'm sure to understand exactly what it means. Bad news, I now know every possibility... and some of the possibilities are really scary.

Dear baby Jesus, please take away my internet. I cannot be trusted.