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Is there a chance of reoccurence after double mast.?

candacemc
Posts: 21
Joined: Nov 2010

I am finally arming myself with bits of information about my situation. I froze at diagnosis and stayed that way til now. Here's my question: I had a double mastectomy (one radical with the loss of 8 or 9-jeez lymph nodes that were all clean) at the first sign that one breast had 2 microscopic calcification crystal based tumors. The sum was less than Stage 1. The other breast removal was recommended as a prophylactic measure. Since mast. I have had a full body scan of organs, bone scan (both clear) and the genomics test that showed I have an 8% chance of reoccurence. HOW is that possible if I have no breasts/tissue/skin? WHY do I have to take Tamox for 5 years if I have no breasts? One last bit of information --- I had my first mammogram (the one this year) at 45 years of age. I had gone 13 years without a pap smear, but have never and still don't have any problems in that area of my body. However, the doc used the 13 year period as the reason that my "breast cancer could have jumped the lymph nodes and went straight into my blood stream". Sooo... does this mean that it can live dormant somewhere else in my body for a while and then reappear as a secondary cancer?

What am I missing here? Every single doc that I have seen (and I love them all, in the Houston Med Center) recommended that I have the double mast. to "end the drama". So, I took this drastic measure to now find out that the drama will never end?? I cannot wait to meet with my onc to get these questions answered.

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Candace, even when a bilateral mastectomy is performed, ALL breast tissue cannot be removed. So, the answer to your question, unfortunately, is that, yes, you COULD have a recurrence. Based on your test you mentioned that it showed an 8% chance for recurrence. This is very low. Your onc is recommending Tamoxifen because I am assuming that your cancer was estrogen fed (ER positive). I sincerely hope any "drama" will end for you and you can get back to Life After Breast Cancer. Take care.

candacemc
Posts: 21
Joined: Nov 2010

no no no... I took the most aggressive approach available so that the nightmare would be over. So, i lost both breasts for basically, no reason. I could've had the lumpectomy. omg. AND... my onc told me there was a 30% chance of developing uterine cancer with my Tamoxifen regime but "not to worry we will monitor you closely and can always give you a hysterectomy if this occurs". Like... you know, don't worry, if we run out of sugar I'll run to the store.

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Candace, just to give you some comfort in the decision you made to have the mastectomy versus the lumpectomy.... I was dx in June 2009 with IDC and I opted for a lumpectomy. I also had chemo and rads. Just as I was scheduled for my first mammo post treatment, I noticed another lump in the same affected breast, just in another location. I had a recurrence in July 2010 and at the second dx opted for the bilateral mastectomy with 2 levels of lumph nodes removed. Thank goodness, they were clear. So, you did what you thought was right for you. I hope you never have to hear those words again but you need to stay vigilent with your self exams. This is a very frightening situation that I wish none of us had to ever endure.

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Kylez
Posts: 3765
Joined: May 2009

Candace, you did what you had to do to fight the beast! We all do, because none of us ever want it back!

Hugs, Kylez

disneyfan2008
Posts: 5276
Joined: Oct 2010

I had to go get test for thickening of uterus..which I had then D & C...thought perhaps hysterectomy...but for now ok...now I was told my oncol. have ever 6mths. I am wondering if I have to have D & C after each test? I was told same thing risk of uterine cancer is less risk then getting Breast cancer back again..!

candacemc
Posts: 21
Joined: Nov 2010

thanks for responding. i'm having a serious case of denial, doubt, anger. i have just found a local support group, and hopefully they can direct me to a psych. i am seriously depressed and just read that depression can affect reoccurence. shoot me.

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

You still have breast tissue. There is no way that all of it can be removed, even with a mastectomy. That is why a lumpectomy with rads is the same as having a mastectomy in regards to survival rate and recurrence rate.

So yes, a recurrence can happen. It can happen to anyone. Sorry, I hope this doesn't upset you.

Live your life and try not to worry.

Rague
Posts: 3276
Joined: Aug 2009

Yes - it is possible. Once we have experienced cancer there is a chance that it will metasis to other areas of the body, especially if lymph nodes are involved. Unfortunately, there is no cure for breast cancer in today's world. We can be NED (No Evidence of Disease) but that is not a guarantee that we will never again deal with cancer. The likelihood level of reoccurance depends on many things - the type, the stage, rather lymph nodes are involved or not, all enter into it, along other 'things'.

Our bodies produce some amounts of estrogen even once we are many years post menopause be it natural or surgery induced so if we are ER+, we need to take an estrogen blocker for 5 years post BC surgery (or end of Chemo/rads).

Susan

candacemc
Posts: 21
Joined: Nov 2010

Thanks Susan. I just called and have an appt next week with my onc. I feel so cheated. The minute I heard the word "cancer" I froze and followed my docs recommendations, wholeheartedly. Adrenaline was the force behind it all. Now, as I begin to thaw from the freeze and the adrenaline gives way to regular life... I WANT MY BODY BACK. I know I'm supposed to be "fighting" but to now hear that it's not over. I want to surrender, wave the white flag and lay down.

disneyfan2008
Posts: 5276
Joined: Oct 2010

but when I got my results over the phone..HE said "well not bad but not good" gave me name of it etc...and I THEN started to research. NOT until in surgeons office was I scared etc..until he said survival RATE!

sal314
Posts: 633
Joined: Jul 2010

Candace,

Dealing with BC, no matter what stage you're diagnosed with, is REALLY hard! I think we all at one time or another, second guess ourselves. Truth is, none of us know what tomorrow will bring. We can only do our best at making decisions that we "think" are right for us at the time.

I initially had a lumpectomy. It WASN'T better than having a mastectomy, which I was initally up for. My doctor ended up taking half my breast to get clean margins. I lived with the disfigurement for 4 years before opting to have a mastectomy and Lat Flap reconstruction. I wish I didn't wait so long. I also decided to do it for the "extra" insurance of having the cancer not come back in that breast.

I know it's scary and you're dealing with a lot of emotions right know. I think it's GREAT that you're looking into joining a support group. They really do help! You may also want to talk to your doctor about anti-depressants. It's VERY common for people to go on them after such a life altering experience.

You said you wanted your life back. Well, you still have it! You are just a little different. One can't help but change, grow and become a stronger person after going through cancer. We may not ever have our old "selves" back (or our bodies), but that's not necessarily a bad thing. Give yourself time. It takes awhile to process everything you've just been through. Life does get better and there will come a time when you won't think about breast cancer 24/7!

Be thankful they caught it early. The fact that the nodes where all clear is HUGE! People with lymph involvement are much more likely to have to battle recurrances.

Hang in there. Vent as often as you need to. Things will get brighter eventually!!

Hugs and Blessings,
Sally

candacemc
Posts: 21
Joined: Nov 2010

Thank you soooo much Sally. I needed to hear that from someone living it. I'm so hard on myself when this isn't something I chose. But, it's a real blow to now realize that this will be a lifelong issue. I should have some peace of mind that I did take an aggressive defensive stand... what else is there to do? Pick up the pieces and move forward. My head and my heart need to join forces. haha

seof
Posts: 826
Joined: Jun 2007

The denial, anger, frustration, depression...are all common to those of us I call survivors. My definition of a cancer survivor is someone who has been diagnosed with cancer who is still alive. Being a survivor changes most people in permanent ways, both physically and psychologically. I also had a double mastectomy, one side was prophylactic. My Drs. did not recommend it because I "only" had a 10% chance of the cancer coming back in the other breast. I say why not get rid of the 10%? I had chemo, mastectomy, radiation, chemo, reconstruction. I am as cancer free as they can make me (NED). Until further notice, I claim wellness. There are no guarantees that cancer will not appear in some other part of the body, just as there are no guarantees that any person who does not have cancer will never get it. However, we can do the best we know how to do to reduce our chances and live as well as we can. Don't beat yourself up about feeling the way you do right now. Most of us have been there at least once along the cancer journey. Each person experiences the journey in his/her own way and time. I think you are smart to get involved in a support group. You will have face-to-face contact with folk who have been there/done that, and they will be there when and where you need them. As for your physical health, you have followed the best advice you had available to you. Now it is up to you to find how to live and be happy with the "new you".

I raise a glass to better days ahead for you, seof

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Like everyone wrote, you still have breast tissue. And, the Tamoxifen is if your cancer was ER positive. It doesn't matter if you had a lumpectomy or mastectomy, if you were ER+, oncologist's recommend some hormone therapy, either Tamoxifen or the A's.

Vent here whenever you need to. I hope that we can help you in some way.

Hugs, Angie

webbwife50
Posts: 395
Joined: Jun 2010

My onc. told me that lumpctomy does not increase the chance for reoccurence any more than mastectomy. It's about getting the cancer/tumor out(surgery)before it starts shedding cells and then doing the adjuvent treatments depending on your cancer. It's all very complicated and hard to process when your right in the middle of it all. I think your idea of talking to a professional is a good one. I had bilat. mast. June 09 then did months of chemo,and found some counseing to be VERY helpfull. My counselor specialized in people with cancer, transplant patients, ect. and she really helped me see that my life is truly worth the fight. God bless you and I'll keep you in my prayers! Hugs...Alison

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

I can't add much more than what all of your sisters in pink have written except I can send you a huge cyber hug today!

Sue :)

lizzie17
Posts: 528
Joined: Nov 2009

I too, have realized that the drama is part of my every day. We pray, try to eat right, and try to accept the new "normal"---It is hard, and I share your feelings.
Hugs to you.

carkris's picture
carkris
Posts: 4520
Joined: Aug 2009

Ok first take a deep breath. You are experiencing anxiety because everything happened so fast.Now you are not in panic mode you are second guessing yourself. There are many women on this board, some choose lumpectomy and rads, some choose mastectomy. some it is chosen for us. We make the best decision at the time.
I am not sure why your docs recomended bilateral mastectomy. perhaps it was your pathology, or you expressed a desire to not have to deal with it again. With BC there are no guarantees.
However, my first BC was node negative, 8 mm, estrogen negative. I had a mastectomy because of DCIS.in 1994 at age 34. in the interim had biopsies, negative or precancer. I became very anxious and was seriously looking into propholactic mastectomy. Although the docs did not agree they did say it could be done. no emergency, I was planning it for the fall, but unfortunately in May got diagnosed with BC again. more advanced. It was not detected on mammo. and was even inconclusive on MRI. I really wish I had bilateral mastectomy from the get go. I would have avoided a lot of anxiety and misery. Of course hind sight is 20/20. My chances may have been less but when you fall on the low side of the percentages, its little comfort. Hard to say where you would fall. Nobody knows what causes this or who would recur, I guess I am one of those people who makes BC.
I do believe it makes sense that if you have less breast tissue, there is less to get cancer. adding tamoxifen lowers your chances. I know the stats say mastectomy vs lumpectomy are the same. but I think it depends on why you get cancer and nobody knows that. (just my opinion) Perhaps Heather Belle will add something, she is a young woman who made the same choice. Mastectomies are hard, no doubt. Like i said we all make our choices, none of them wrong.
I hope I have not offended anyone, I support any ones decision. In fact this has been difficult to talk about as it makes me really sad, but I wanted you to know that there are people who wish they had made your decison. To bring you comfort. God Bless!
P.S. I had a second mastectomy without hesitation, turns out I needed it anyway.

carkris's picture
carkris
Posts: 4520
Joined: Aug 2009

I would ask about the not seeing a doc in 13 years comment for clarification, because that doesnt make sense.

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

I second what carkris is saying. I was diagnosed at 39, very early cancer, opted for MX on the cancer side & a prophylatic masectomy on the other side. They say with some breast cancers that the long-term rates of recurrence are the same with lumpectomy/rads vs. masectomy. Most of that research, however, is done on post-menopausal women. BC that occurs in pre-menopausal women is often a different beast. I'm sorry that you're second guessing ... I just read today that breast cancer sufferers rank among the highest of all cancer survivors that deal with post-traumatic stress disorder. We do what we have to when we're diagnosed, we make the best decisions we can and then the emotional fall-out occurs months after we're 'done.' The decision was made. Second guessing is just going to literally drive you insane. I too think the support group will be a good idea. Hang in there!

candacemc
Posts: 21
Joined: Nov 2010

I am feeling much better everyone. Thank you for listening to my whining. I have appts next week and will definitely ask about the thirteen years. I very clearly was told that "even though your lymph nodes were all clear, because it's been 13 years since you've seen a doctor, we don't know how long you've had these spots and cancer can jump to the bloodstream". That was the explanation - not knowing how long I had the microscopic spots. I was incorrect before when I said pap smear, although I did get that lecture at the same time. No one was happy I had gone that long without tests.

Anyway, I am so appreciative to each and every one of you that took the time to share your wisdom with me. That is the best medicine - surrounding yourself with others that understand. Much love!!

candace

Rague
Posts: 3276
Joined: Aug 2009

Some suggestions -

Get a spiral bound notebook and write each question on it's own page so you have foom to write the answers you get to them. Give each question a number and if you need more to write on then go farther back in the book and put that number on the top of the page so you can relate what you write the the right question.

Take someone with you who can/will remain objective as to what is being said to you just 'in case' and have then write down what they hear the Dr say. It's not hard to hear bits and pieces of what is said.

Ask for booklets/printouts regarding your questions/their answers.

Ask rather or not you had a Radical Mastectomy (as mentioned in first post of this thread) or a Modified Radical. From all I've read/heard, a Radical Mastrectomy in today's world is usually only used with Stage 4 (which means it has spread) and involves taking all breast tissue, all nodes and chest muscle. A Modified Radical is much less invasive.

Ask what tests were done - not just 'scans' but genetic/etc. - and ask for copies of them and all tests that have been done - even all blood tests to keep up with all levels.

Ask, Ask, Ask and Ask somemore! Document, Document, Document!

Remember that not all Breast Cancers are the same Beast, not are they the same within the same type. We are each unique and our bodies are each unique in how they will fight the Beast within.

You can do what you have to and it is surprizing how fast the time will pass.

Susan

ms.sunshine
Posts: 710
Joined: Mar 2010

We all make the best decision that we can make based on the info. given to us. No one is 100% certain. There are no guarantees when dealing with cancer. The surgery is over, now you have to heal. Second guessing yourself will only bring fear. None of us need more of that. Take steps to do what you need to do.

Live well Laugh often Love much

Heatherbelle's picture
Heatherbelle
Posts: 1218
Joined: Jun 2010

Candace,
I had the same surgery as you did. I had a 2 cm mass in my right breast, stage 2 breast cancer. I chose to have both breasts removed to give myself a better chance of it not coming back. I was told that there is always a chance of reoccurance at the incision site, on the chest wall, etc. That is what the 5 years of Tamoxifen (I'm on that too) is supposed to help prevent.
It took me a few weeks of research, thinking, and talking to 3 different doctors, along with everyone on here, to come up with my surgical decision. My feelings, ultimately, were that I would MUCH rather feel like I did TOO MUCH in my fight against breast cancer, than NOT ENOUGH. I read about (and personally know a few women) so many women who had a lumpectomy, and a few years later have a reoccurence & end up needing a mastectomy after all.
You're right to feel angry about this. Now that my treatment (chemo) is over, and Im done with surgeries, I'm finding myself angry alot. I'm so pissed that this had to happen to me at all, that I had to lose my hair and my breasts, and that my husband, kids, and parents have had to deal with what happened to me. But, at the end of the day - I'm alive, my hair is growing back, and I'm cancer free.
If you need to chat or anything, you can always send me a message on here or on facebook (FB messages come through on my cell phone right away so i get those faster). Hang in there, it does get better (or so I'm told, lol)
*hugs & hugs*
Heather

glitter_718
Posts: 1
Joined: Jan 2011

Hi everyone....this is just the perfect topic for me...I had my last chemo on July 2010. Had a prophylactic mastectomy on my right breast in Sept 2010 (I had double mastectomy). My cancer was Stage 1 with no lymph nodes involvement. 5 weeks ago I had my final reconstructive surgery. 2 days ago, i notice a small lump in my right breast (the cancer breast was the left breast). The lump is on the lower part of my breast. I can even see the lump buldging a little on the surface of my skin. its rounded, moves a little and no pain...Its like its stuck to my silicon! I am gonna see my surgeon tmrw. Its been only 3 mths since my mastectomy and 6 mths since my chemo. What if the lump is cancerous??!! How can this happen again! I am praying and hoping its just a scar tissue and a fat tissue!

Marina

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Praying for you Marina. Update us as to what your surgeon says.

Hugs, Megan

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

A recurrence can happen. Not all of your breast is removed with a mastectomy. A tiny portion of the breast tissue right next to your breast skin is kept to support your breast skin. In that tiny portion of the breast tissue, a cancer cell can lurk and then later develop.

I had 0 Stage DCIS but after 2 surgical biopsies margins still were not clear I initially started with 1 speck of cancer known as a calcification. The biopsies revealed under a microscope that the margins were not clear. After much research I opted for a contralateral mastectomy (removal of 1 cancerous breast and 1 non-cancerous breast) with immediate skin sparing breast reconstruction. I did not require chemo, radiation, nor Arimidex, which were some of the major reasons why I opted for the mastectomy.

About 2-1.2 years later, cancer returned on scar of breast which I thought was an irritation to the stitches. I touched that cancer for at least 4-6 months never dreaming that it was cancer. I showed it to my plastic surgeon at my annual visit with him. He also thought it was an irritation to the stitches, as it was not shaped like a cancerous growth, until I told him that I thought it was growing within the last month or so. Then he became suspicious. Biopsy revealed that it was cancer. I am in the 1% category for a recurrence based on my initial cancer. That means that 99% of the women who have 0 Stage DCIS, lymph nodes free of cancer, NEVER get it again if they opt for a mastectomy.

My comment, "One cell got away." Because cancer could not be found anywhere else in my body with the recurrence, I only needed radiation followed with Arimidex. It is now one year since I finished radiation. So far, so good.

My advice to all of you is, "Do not live your life in fear. Educate yourself as to what a recurrence could look like or feel like. Any questions or doubts, immediately go to your doctor...do not wait for your next scheduled appointment. Focus on all the joys of life and enjoy them."

Lots of Hugs,
Janelle

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