Diagnosed and preparing for the next steps

Anonymous

Diagnosed and preparing for the next steps

lumpynurse80

I had my needle guided biopsy on Tuesday, and by Thursday they were calling to tell me that I have Infiltrating Ductal Carcinoma with positive hormone receptors 90% estrogen and 30% progesterone. They said its early and if I want I can just do a lumpectomy, but after talking with my fiancé I think that I want to go ahead with a double mastectomy with reconstruction. I'm only 39 so the idea of going through this again in 5 or 10 or 15 years is unimaginable. I'm not so emotionally attached to my breasts that I am willing to risk another round of breast cancer just to keep them. Also, I have large breasts and I never felt a lump, it was found on mammogram. I'm afraid that if I do a lumpectomy and I develop another lump that it will be a more aggressive form of cancer and I won't find it until its too late. It's a lot to think about. Also, has anyone taken Tamoxifen because if I have to be on hormone blocking medications then it will throw me into early menopause and then my risk for ovarian cancer goes up so should I just go ahead and do a hysterectomy too to avoid that risk altogether? I'm not planning to have any more children, our youngest is 8 and I had my tubes tied 7 years ago. There's just so much to think about. They told me that due to my age that treatment would be aggressive and I'm all for that. It's just crazy to think that I have cancer and I don't feel any different. I went to my primary doctor on Friday and got my pneumonia vaccine as I am a nurse and flu/pneumonia season just started and I know that my immune system is about to take a hard hit. I see the breast surgeon on Monday and I have a breast MRI scheduled for Tuesday. My doctor is the head of the breast cancer program at the hospital that I will be having surgery at. He is wonderful and has a passion for helping women with breast cancer so I know that I am in good hands. I'm not gonna cry over this anymore because I have to get my mind in fight mode because I'm fighting for my life at this point.

Rrobin0200

I’m sorry you find yourself here. It sucks... sorry for being so bold, but there’s no other words for it. I was 37 upon diagnosis. I too wasn’t attached to my breasts... they served their purpose 10 years ago when my children were born. Anyhow, i had a bilateral mastectomy with immediate direct implants, and I don’t have any regrets. As a matter of fact, I love my breasts now more than ever! The recovery wasn’t so bad, imo. Go in with a positive attitude, and the end results will be nothing but positive as well. That was my mind set.

As for the hysterectomy, I really can’t comment bc I didn’t have to have one. But I can tell you, based on your post, I totally would have it!

Best of luck.

lumpynurse80

Rrobin0200 I definitely have no attachment to any part of my body that may be trying to kill me ya know. I just know that I have to do whatever is best for me and my family and the best thing for us is for me to be around for a very long time. Jeff says to get rid of them and we will buy new ones later if we need to. Having him be supportive makes the decision a lot easier. I figure if I get a double mastectomy then I get new boobs put back where the originally started before I had children, if I have chemo I'll lose weight and if I lose my hair it might come back curly and I've always wanted curly hair. So I'm choosing to stay positive in all aspects. I'm keeping my sense of humor about me and I'm going into this with a fighting spirit.

flashlight

HI lumpynurse80, My daughter's friend decided on a double mastectomy, but her body rejected the implants. When she talked to her Gyn about a hysterectomy her doctor wanted her to recover before having this surgery. Because of her age and possible side effects she chose to have her ovaries and tubes removed laparoscopy. The anastrozole caused her to have too much bone pain so now she is on Tamoxifen and doing very well. Even though I am older than her and have a different diagnosis she has been so very helpful to me. One more thought ask your doctor about PT/OT after surgery. You have a great attitude!! Sending best wishes...….

Yogatyme

lumpynurse, both my niece and I have had BMX, w her having reconstruction w implants and I decided to go flat. What I can tell you is that my niece’s recovery was much shorter than mine. She was ready to do a little shopping about 4 days after surgery and I wasn’t able to do much other than sleep, eat and watch tv for about 3 weeks. I totally attribute this to differences in our ages. She was 38 and I was 68. Additionally, she is much more active than me......runner, weight training and tai kwan doe. I have had my ovaries & tubes out laparoscopically and really, it was a walk in the park. Tendernessfor a few days was all I had.

NoWhyToIt

I felt as you do now and wanted to go extreme. But I had a great surgeon who advised not to. Do the genetic testing to see if there is a reason to take extreme measures. If not, take a deep breath and trust you will be okay with a lumpectomy. I was young, too.... xx

Rondeezee

Hi lumpinurse80, I, too, was young at my first diagnosis..23 years ago at the age of 29. I don’t recall much about my first breast cancer with the exception of it being DCIS with a small micro invasive component. I am assuming that it was not hormone receptive as I was not prescribed Tamoxifen. I elected to have a lumpectomy and radiation and was ok for 22 years. Fast forward to 2018 (age 51), I was diagnosed with a new primary tumor in the same breast. This time it was IDC, ER/PR+, HER2- caught early with no lymphovascular invasion and no lymph node involvement. This time I elected a bilateral mastectomy and am currently on Femara. My advice to you is go with your gut feeling and be as aggressive as you can in hopes that you never have to deal with BC again. I wish someone would have advised me so that I could have been more aggressive with my first BC, I certainly would have elected bilateral mastectomy and reduced my chances even further for BC to return in the same breast

AliceBastable

A lumpectomy + radiation is pretty much the same as a mastectomy as far as local recurrence rates go..

Anonymous

To Alice's point above--it's true, but if you have dense breasts, mammos don't work as well in detecting any possible recurrence. I had a lumpectomy and radiation, but since I had very dense breasts and 5 mammos that didn't ever find the ILC that had been lurking there for probably some years, I also chose to remove all breast tissue by having a BMX/reconstruction.

Claire in AZ

ctmbsikia

Best of luck to you. It sounds like your gut is telling you what to do. I would have done the same if I was much younger than I was at diagnosis. Being older (56, now 58) I just wanted in and out so I choose the less invasive route w/radiation. I do have about a 2 week anxiety period going on before tests and appointments still. So that's another point to consider. You'll eliminate the mammogram machine.

Deets2019

Hang in there! I work in medicine for many years and I was shocked to get a breast CA diagnosis in July though I had been neglectful and did not get a mammogram for 7 years! Many women are not compliant like me for a variety of reasons. I think my breast ca started 10 or more years based on reviewing my mammomgram records. They did a couple callbacks back when but always turned out "benign." Well I think they could not really tell for sure. I think it started with DCIS and evolved to IDC. I am now post lumpectomy, 4 rounds of chemo and getting ready for radiation therapy of 4 weeks. Then I will be taking Arimidex or similar for 10 years. My UCLA team was split if I should have chemo (maybe because I am 72 though very healthy, working and active) but I had a 2nd opinion at City of Hope and with their perspective I decided to do chemo. My recurrence score was 28 which also did not help (high intermediate) through 25 is the revised number used now (it used to be 31). I had 0 nodes and 2 cm tumor, ER+ PR_ Her2- so I was stage 1a but my tumor grade was 3 with a Ki67 of 30%, not great either. If recurrence low, no need for chemo but only lumpectomy plus radiation therapy for 4 weeks, likely the treatment that most do.

I think you should wait to do anything until you know your recurrence score, absolutely so important as your guidance. IDC (inflitrating or invasive) ductal CA is the most common, 80% of cases. Also, I would never do a double mastectomy which does not guarantee you would not have a distance relapse at a later time (if you test with BRCA 1 or 2 genetic positive test, a different situation) because you can monitor closely with regular mammograms (be sure it is 3D mammogram diagnostic and also do diagnostic ultrasounds rather than "screening" each time) and sometimes MRI if something is found suspicious though MRI's have a high false positive number. A physician friend had same diagnosis, did a double mastectomy for same reasons as you and she ended up with atrial fibrillation and other complications. It is just NOT necessary to do such dire surgeries so young and there are lot of ways of monitoring you going forward. With any serious surgery, there are often complications and not necessary for what you have. I would highly recommend you NOT do a double mastectomy (rejection of implants also happen often and other issues).

Feel free to ask any questions but I think you just need question your physicians at all turns, do as much research as you can and stay on point. You will get thru it all and hopefully no positive nodes and a lower grade tumor, etc. Best to you.

MinusTwo

Deets - sorry but for women with dense, fibrocystic breasts - a mammogram doesn't cut it. Likely an ultrasound won't cut it either. Maybe an MRI, but it will have to have some size to show up in the clutter.

I'm ever so glad I went for the double mastectomy because they found things in the "good" breast that had not been seen on imaging, not to mention more things in the 'suspect' breast. But from the beginning, that was my first & only choice even though I only had DCIS.

Hundreds, maybe thousands, of us have had a bilateral mastectomy with out any major problems - so there's no need for any scare/horror stories. Yes some have problems, but by far the majority do not.

Still, it's a very individual decision whether to have a lumpectomy or a mastectomy and everyone has to make their own choice. Talk to your oncologist, a surgeon, a plastic surgeon, your Gyn. Determine what works best for you.

Deets2019

Agree, very personal decision but many women jump to bilateral mastectomy and not necessary. Just not. It is not a guarantee of not having recurrence regardless if one does a bilateral mastectomy or not. If it goes distant, it is still metastatic disease and having removed both breasts did not make a difference. Pathologists are improving ever year and with better outcomes because of that. Get a 2nd opinion with another university to get a better baseline compare to what you already have. Slides are easy to obtain and send to a 2nd opinion situation.

Again, lumpectomy is just as good long term as mastectomy in many types and cases. It all depends on many variables primarily on pathology details, biomarkers, etc. Working with a good university team is best. Many community docs are just not up to date. Question everything, get educated, do alot of research on your own.

Get off a bad diet and perhaps work with a nutritionist. Important to get off any milk products, best to do vegan; very low sugar intake per day and exercise. Very low intake of alcohol per month. Ideally, low intake of animal protein, definitely organic and best is pasture meats such as chicken as they do not eat grains, just free range eating bugs and worms, etc.

edwards750

I’m of the opinion that everything in moderation. Of course it’s best to eat healthy, etc but I don’t believe that avoiding sugar, milk, red meat, etc makes a difference as it has to do with either getting BC or having a recurrence. I know women who have led the super healthy life and still not only got BC but had recurrences. My sister was one of those people.

There is alsoa debate among oncologists about how much alcohol is okay. Most at least say limit your intake but you don’t have to totally abstain.

To each her/his own but I’m 8 years out last August.

Diane

Scrafgal

At one of my chemo infusions, I met a clean eating, vegetarian, professional nutritionist who regularly practiced yoga and had 3 kids under 30. She got breast cancer and had no genetic link. It happens.

Anonymous

Minus two, I had the same experience--"good" breast showed hyperplasia in the post-surgical dx that could have been trouble down the road, and an US, mammo, and MRI never revealed it. I knew I had dense breasts--but no medical person ever told me that they make it harder to detect tumors on any scan. So I was clueless.

For me, it was a trust (lack of trust?) issue. I had 5 clear mammos that made me feel falsely secure for five years. Finally, and miraculously, I found the lump through a random self exam. Had I had big boobs, or been overweight, I might not have found it at all until it was much bigger. By the time I was dx, I had 6 + nodes.

We are all unique, and need to feel as secure in our own bodies as we can. I knew I'd never, ever, trust scans again because of the nature of ILC to hide from scans and my own devilishly dense breasts. I have never been so relieved to know that there was a lot less breast tissue on my body to cause problems in the future. We all know there are no 100% guarantees, but it's helped me be able to move forward with my life a bit more easily.

Do I miss my breasts? Often. Do I miss the worry about what they brought to me? Never.

I don't know if diet will help us make a decision about whether to remove our breast tissue or not, but less adipose tissue (lower BMI) means estrogen doesn't get to hide out in our bodies--as research has proven--and feed ER+ cancers. Not all of us have hormone + dx, not all of us have IDC (easier to detect), etc. etc.

Best of luck in your decision. I had to listen to my intuition, finally, and ignore all the white noise that "should I/shouldn't I" brings, finally, to come to a decision I alone could live with.

Claire in AZ

MinusTwo

I agree with Edwards. Everything in moderation. I don't believe we have to give up anything - just don't over do. Of course that also means exercise in moderation, portions in moderation, etc. Most oncologists will agree that you don't have to give up sugar or alcohol or milk for anything for that matter. Just eat a good balanced diet, get a reasonable amount of rest and exercise and try to limit stress. Yes, if you are ER+, obesity can cause extra problems - but again, back to moderation.

lumpynurse80

I really appreciate everyone who has posted on here. Very good information and since we’re all rowing along in the same boat it’s helpful since family and friends are great support but they don’t really 100% understand so it can feel very lonely at times. But deciding on a double mastectomy was not easy but I am looking at long term for me and I know a lumpectomy is just as effective but it’s not what my gut tells me to do and I generally go with my gut. I’m gonna be as aggressive as they want me to be. I’m still waiting for the HER2 results but I see a plastic surgeon next Friday to discuss reconstruction. I’ve never shopped for new breasts but I’m taking my best friend and it will be a nice girl’s day. I’m not scared of surgery or recovery and My good friend is the manager of the general surgery department where I will be so I know she will keep a close eye on me. My surgeon is amazing he is the head of the breast cancer program at the hospital and he is very compassionate and I feel like I am in good hands. We talked a great deal about my options and I still feel that the double mastectomy is right for me. I’m in school and I have 6 months til my graduation so I’m super busy but keeping busy really helps me.