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ARE SOME WOMEN LUCKY ENOUGH TO NOT HAVE TO TAKE ANYTHING AFTER A MASTECTOMY

Unhappy
Posts: 88
Joined: Dec 2012

CANCER TYPE INVASIVE DUCTAL CARCINOMA FIRST STAGE WAS NOT IN LUMPH NODES MARGINS NEGATIVE FOR INVASIVE CARCINOMA  DOCTOR SAID AT FIRST I WOULD NOT HAVE TO TAKE ANYTHING BUT SENT ME A ONCOLIGIST AND SHE SAID I HAD A 80%  CHANGE OF CANCER NOT COMING BACK IF I DID NOTHING ELSE BUT IF I TOOK ANASTROZOLE IT WOULD UP IT TO 87% THAT IT WAS UP TO ME.

Rague
Posts: 3274
Joined: Aug 2009

So it was your surgeon that told you what you would need (or not need) iniitially - not an Oncologist?

I always find it hard to believe that some never see a Medical Oncologist (cancer specialist) before they go under the Surgeon's knife.  I saw my Surgeon first but saw my Rads Dr 2 days later and my Chemo Dr the next day (there was a mix up in scheduling so should have been the other way around).  Surgeons are surgeons - they cut.  Oncologist deal with the Cancer.

 

Lynn Smith
Posts: 1265
Joined: Mar 2011

My doctors (surgeon and oncologist) talked about my treatment.I was at my surgeons office and he told me what the plan was no chemo or radiation but take tamoxifen.He said the oncologist will be prescribing that when I saw her. Went to the couple month later. Told him I got the prescript for tamoxifin but was hesitant to take it.He said it was to help prevent my cancer from returning or spreading.I started on tamox right away.

My sister just had a double masectomy in August 2012. Finished 4 rounds of chemo and started taking Armidex a few weeks ago. 

Lynn Smith 

VickiSam's picture
VickiSam
Posts: 8220
Joined: Aug 2009

that if you are Estrogen / Progesterone positive -- meaning,, your hormones feed your breast cancer -- chances are you will be taking medication after your chemo therapy is completed.  AGAIN, this is my interpretation only .. Please check with your Oncologist -- get information, brochures, clinical data anything to help you better understand.   I am not a doctor.

 

 

Vicki Sam

burcu123
Posts: 70
Joined: Jan 2013

Usually oncologists are more aggressive treating breast cancer with medications.

It seems like your cancer is ER +. If I were you I would gladly take th eanti-estrogen medication, It will decrease your chances of recurrence and also will decrease cancer coming back in th eother breast by70%.

If you get another cancer , it could be much more aggressive then you had, it could be triple negative, it could be inflammatory type, it could be a later stage.

Tals with your doctor, but my advice will be take the medication. You are lucky at this time you did not require chemotherapy

Unhappy
Posts: 88
Joined: Dec 2012

and a plastic surgent  was considering a lumpectomy that was why I saw the radiiiogist the plastic surgery so if i went with mastectomy went with mastectomy because i did'nt want radiation for 6 wk. so went with mactectomy was hooping that would be all i would have to do.

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I had pure DCIS, which means my er/pr positive cancer was ONLY present in the milk ducts. I had a double mastectomy with sentinel node removal (there was one axillary node removed). Since my breast cancer was ONLY in the milk ducts, and I had BOTH breasts removed, I have no need for any hormone therapy for breast cancer. My margins were clean, so I had no need for radiation.Chemo is never a standard treatment for DCIS since it is a systemic treatment and DCIS is only in the milk ducts.

The only reason I saw an oncologist before the surgery was for a second opinion because my surgeon who is not an oncologist was recommending I take tamoxifen. Surgeons, like mine, know something about cancer, but oncologists know how to treat it better, since that is their specialty. The oncologist recommended that I should get a hysterectomy, salping-oophorectomy, and the BMX with node removal ALL in the same surgery. When I went back to the surgeon with this request, she said there is no way I would want all this surgery at the same time. I spread them out and am I ever glad. Each doctor knew their own specialty best, but gave some ill advice on what was NOT their area.The oncologist was very helpful. He explained the progression of cancer cells from normal to cancer, my odds, the health risks associated with it. It was him that mad the decision for no tamoxifen. Based on 1. I would never be a candidate for it anyway based on my other health issues and 2. Since my milk ducts were gone and the cancer was only in the milk ducts, the cancer is theoretically gone (although he explained and that I know there is NO CURE for cancer, but the probability of me getting breast cancer again is extremely minimal....there are cases of DCIS coming back after a BMX...there is a lady on here that had it come back).

Had I had stage 1 or higher, I would have taken the  most aggressive approach, just as I did for DCIS. For myself, I would rather treat my first cancer the most aggressively as I could to prevent ever getting it again. But, that is only my opinion. Everyone has their own journey and their own decisions to make based on their type of cancer,and their way of making choices.

Edited to note: Unfortuneately, I still have problems with scar tissue adhesions on my chest and underarms, pain from nerver damage, and LE from the surgery. So I guess, I didn't make it out without having to take anything after surgery...I have pills for pain, sleeves, gloves and compression bras for the chest and sides of chest....

No one gets out of cancer easy do they?

disneyfan2008
Posts: 5276
Joined: Oct 2010

I had DCIS in 2008-lumpectomy followed by 10 wks radiation and now on 4th year of tamoxifen.

I did have a hystertomy last year (spring) due to ENLGARGED uterus from the med (known side effect)

 

Denise

disneyfan2008
Posts: 5276
Joined: Oct 2010

My co worker friend and I had DCIS same time..same surgery-she never had any treatments.

 

Denise

 

about the same age as her...

McMarty's picture
McMarty
Posts: 191
Joined: Nov 2012

I had a very small IBC with some DCIS.  I opted for mastectomy with simultaneous reconstruction.  That was a large response to the 'small' problem I had.  They wanted me to take Tamoxifen but like you said, the numbers of improvement were not very impressive.  I think it would have decreased my chances of recurrence from like 10% to 7.5% so I did not take the Tamoxifen. 

In hindsight,  I think the Tamoxifen may have help a little. BUT -  They missed a spot and the recurrence was on the mastectomy side.  The MAIN FAILURE was that they DO NOT test that side at subsequent mammmograms so it was WAY out of hand when they caught it.

My recommendation from a very similar past experience would be to DEMAND follow up PET Scans every 6 months or a year.  Or at least that they ultrasound the mastectomy side.  (I think a mammogram on that side would be impossible because of the pain & nerve damage)

My situation in rare and I played the odds correctly,  I think they are giving you good advice, but I would get the Mast side checked somehow, especially if there is pain.

 

Marty 

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Marty!! I don't think IBC is a "small" problem at all. IBC is a very dangerous type of breast cancer to get!!!

McMarty's picture
McMarty
Posts: 191
Joined: Nov 2012

I think I got my acronym wrong.  I did not mean inflamatory.  I had multifocal DCIS and one TEENY spot of invasive.  They did two lumpecotomies without clear margins and then I opted for mastectomy simultaneous DEIP flap reconstruction so I wouldn't have to do radiation. 

I certainly didn't mean to aggrivate anyone, I was just trying to help.  Hope this clears it all up.

Rague
Posts: 3274
Joined: Aug 2009

Inflamatory Breast Canceer (IBC) is the most aggressive form of BC..  Only between 1% and 5% of all BC is IBC.  It is rarely 'small' when found because it is so aggressive and fast growing, also it does not form as a 'lump' but rather as 'bands' or a 'nest'.    Everything I was told and have seen written is that immediate reconstruction is not an option with IBC.  Invasive BC (IDC and ILC) yes  but not with Inflammatory Breeast Cancer (IBC).  Mast. is the usual for IBC after neo-adjuvant chemo to get it to form a 'lump'.

Winyan - The Power Within

Susan

McMarty's picture
McMarty
Posts: 191
Joined: Nov 2012

Once again, I am VERY SORRY,  I got my acronym wrong.  I meant INVASIVE.  SO SORRY for the confusion!!

New Flower
Posts: 3938
Joined: Aug 2009

Hi Marty 

as we are here to help each other I have a question to you. Am I understanding correctly that you have had mastectomy with no further treatment and you were offered tamoxifen, which you decided NOT to take. Later you had recurrence wich was missed and then progression. Do you have second thoughts about no taking Tamoxifen 

McMarty's picture
McMarty
Posts: 191
Joined: Nov 2012

Hi New Flower,

Those are hard hairs to split looking back!  I did have a mastectomy with no further treatment.  The information that I had available to me there was not much difference in the percentage of recurrance between the mast. and the mast with adjuvant (Tamoxifen) therapy. Really less than 2.5%. I chose not to take Tamoxifen.

While it is possible the Tamoxifen may have done away with the spot they missed, that Tamoxifen 5 years later when the recurrance was discovered bought me a very high quality of life for 2 years. 

THE MAIN FAILURE was there was no protocol for checking the mastectomy side.  I had regular mammograms but they never checked the mastectomy side.  Five years later, there was a sizable tumor that had grown into my sternum.  I believe with a PET scan/ ultrasound...anything! they could have caught that at any time during those 5 years before it became quite the problem it is today.  I had complained of pain at that site many times and reported changes - they just didn't check.

At recurrence, they radiated my sternum and started Tamoxifen, the Tamoxifen worked for a little over 2 years before progression. 

For me, I absolutely think I made the right choice.  I should have been more aggressive to have the mastectomy side checked but I knew very little.  I didn't know about PET scans or to ask for one.  Certainly a PET scan in the year following my surgery would have left me with a MUCH better prognosis than I have today.

I will never know what the other path would have held.  If I had taken the Tamoxifen directly after the surgery.  I DO KNOW that anyone given the option to move on after surgery without treatment should absolutely demand a yearly PET scan!

I did the very bet I could with the info I had available to me and I wonder, but I do not regret!

New Flower
Posts: 3938
Joined: Aug 2009

It is my sincerie hope that you will follow your oncologist recommendation and feel HAPPY after all. Nobody can made you take anti estrogen Meds however I am surprised that your doctor does not have an opinion and is leaving it up to you.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

My situation is a little different but ultimately it shows that all is not black and white when treating BC.  I was DX'd with IDC in 2007.  The only treatment option for me was a DBL MX as I had radiation therapy in 1989 for Hodgkin's Lymphoma.  The MX resulted in IDC, DCIS and LCIS.  Radiation wad not an option. I opted out of chemo as I was given a 1-2% chance of it helping.  The Tamoxifen was not cut and dry decision for me or my oncologist.  That too had such a small % of preventing a recurrence.  After 3 mos of agonizing, I decided to give it a go, (my onc was not pushing it leaving the final decision to me.)  After 2 mos I encounterd gyno problems.  I had to stop it and in 2 mos I had a TIA so it came off the table.  In addition to my local onc, I had consulted with Fox Chase and MSKCC about tamoxifen.  Not one of them pushed tamoxifen especially looking at %'s and possible side effects. 

Eventhough I really didn't have all the options available to me, I'm doing well.  It has been 5 years since the BC DX.  My Adult Long Term Follow up Specialists says, we know many Hodgkins patients are at risk for BC.  Well, you got it and now you can put it all behind you.  So far so good. 

Best wishes as you gather your info and decide what's best for you. 

Cathy

Unhappy
Posts: 88
Joined: Dec 2012

I would not have a problem at all with the anastrozole .It is just the side affects .Joint pain I have had 2 knee replacement seem like every year something else come up .The mactectomy was not that painful compared to the knee replacements .What treatment do they have you on at this time.Hoping for the best for you.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

You ask what treatment am I on at this time.  I had a double mastectomy for IDC, DCIS and LCIS.  No other treatment. Thanks for your well wishes.  It has been 23 and 19 years since the recurring Hodgkins, 5 for the BC.  Just trying to stay ahead of the numerous long term effects from the HD treatments.

Sometimes it is hard for others to hear we may be discontinuing treatment because of side effects.  I'm just saying I can relate to what you are saying about your current treatments.  I had been rx'd Lyrica for Radiation Fibrosis Syndrome.  It worked like a miracle, I felt wonderful until 2 months in.  I had severe abdominal bloating.  I could not take it anymore and stopped the medication.  Sometimes side effects really hamper our quality of life.  It's hard to understand until it happens to you.  If you want to continue with meds, like others have said, there may be a differnet drug that has less side effects for you.

Good Luck!

Unhappy
Posts: 88
Joined: Dec 2012

I have been taking the anastrozole for about a month. But I think the pain and numbness I have in my left leg may be from taking it. I have had two knee replacement and worry about what it may do to them .Before I had them done I could hardly walk now after knee replacement I was getting alone so good until I found that I had breast cancer .Yes  I do have a lot of concern.But when I read about you ladies I feel like I have nothing at all to complain about .I am hoping and praying for the best for all of you there are some great people on this site.

New Flower
Posts: 3938
Joined: Aug 2009

You are a very good woman, I cannot call you Unhappy, it is feel wrong sorry, it is just me.

please talk to your doctor. There are other anti estrogen drugs which could be easy for you hugs 

Unhappy
Posts: 88
Joined: Dec 2012

If I knew how to change my name on here I would .I tried lot of names that they said were already taken.I like your name I grow daylillies never though of using daylily lover as my name that may of work better then the one I chose .Maybe you could till me how to change my name on here..Again thank you for your imput.Laughing

New Flower
Posts: 3938
Joined: Aug 2009

Please contact CSN administration by email they should help you out

it will need some effort and persistency. They are the only ones who can do it.

Hugs

Unhappy
Posts: 88
Joined: Dec 2012

It sound like you have has a time .So sorry wish we could see ahead before we dicide our treatment choice.Wishing you the best.

Barb A's picture
Barb A
Posts: 100
Joined: Jun 2009

I had DCIS and was told it was wide spread, but not in lymph nodes. I was told DCIS calcifications are not just in the milk ducts. That was in 2001 - I had a mastectomy with Tram-flap reconstruction. I took Tamoxcifen for 5 years. No chemo or rads. A year and a half after finishing Tamoxcifen, I found a lump in the reconstructed breast. It was IDC stage 3. I had a lumpectomy, chemo, rads and Arimedex (almost 5 yrs now).

I just found out last week that my first cancer also had some IDC. Most likely some was missed with the mastectomy and reconstruction, as they can't remove all the tissue and skin. I'll never know and could only assure myself that I made the best choice for me with the Tamoxcifen and now Arimedex.

What ever you choose to do, ask for copies of all your reports, get as much information as you can and make the choice(s) that you feel are best for you. Everyone is different. After my second dx, I asked them to do a mammo on the reconstructed breast. Because it's my tissue and not implants, they tried it. There isn't a lot to see except around the outer edges. They happened to see something a couple of years ago and did a biopsy. It was benign, possibly scar tissue. However, last year they ultrasounded it and it was considerably larger. Another biopsy, also benign. However, it gives me peace of mind that they are aware of something there and are keeping tabs on it.

For those who have had a mastectomy with or without reconstruction, please keep doing self exams. Lumps can develop even if there is no breast there. Get to know your new self. There will be changes over time, but you will learn what is a problem and what isn't. Early detection is what helped me both times.

Best of luck,

Barb A

 

 

 

Barb A's picture
Barb A
Posts: 100
Joined: Jun 2009

I had DCIS and was told it was wide spread, but not in lymph nodes. I was told DCIS calcifications are not just in the milk ducts. That was in 2001 - I had a mastectomy with Tram-flap reconstruction. I took Tamoxcifen for 5 years. No chemo or rads. A year and a half after finishing Tamoxcifen, I found a lump in the reconstructed breast. It was IDC stage 3. I had a lumpectomy, chemo, rads and Arimedex (almost 5 yrs now).

I just found out last week that my first cancer also had some IDC. Most likely some was missed with the mastectomy and reconstruction, as they can't remove all the tissue and skin. I'll never know and could only assure myself that I made the best choice for me with the Tamoxcifen and now Arimedex.

What ever you choose to do, ask for copies of all your reports, get as much information as you can and make the choice(s) that you feel are best for you. Everyone is different. After my second dx, I asked them to do a mammo on the reconstructed breast. Because it's my tissue and not implants, they tried it. There isn't a lot to see except around the outer edges. They happened to see something a couple of years ago and did a biopsy. It was benign, possibly scar tissue. However, last year they ultrasounded it and it was considerably larger. Another biopsy, also benign. However, it gives me peace of mind that they are aware of something there and are keeping tabs on it.

For those who have had a mastectomy with or without reconstruction, please keep doing self exams. Lumps can develop even if there is no breast there. Get to know your new self. There will be changes over time, but you will learn what is a problem and what isn't. Early detection is what helped me both times.

Best of luck,

Barb A

 

 

 

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