December 2011 Surgeries - want to wait together?

Huh? My ps hasn't said anything like that to me. I'm almost 4 weeks out and can do that too. Actually I've been doing some arm rom exercises. Did your ps tell you that? I figure if I'm able to go back to work then I should be able to lift my arms up. That' a good question. Interested to hear what others have to say.

Hi Ladies - I had my exchange surgery yesterday and it was quite easy compared to the mastectomy. I still have that tight feeling under the foobs but I feel better than I did with the TE's. I can't wait until Tuesday when I can unwrap myself and see the results. From what I can see, the cleavage looks beautiful.

I believe you ladies are talking about raising your arms after the BMX? I was told to use my hands to "crawl" slowly up the wall until I could fully extend my arms. I was never told not to raise them. It is odd how we are told different things at different stages of the reconstruction.

I hope all you ladies do as well as I did. I am now dreaming of having beautiful little areaola and 3d nipples.

Happy New Year, ladies. W am wishing you all a Healthy and Happy 2012!

~Erin

Chrissilini - I think I had momentary brain fade when I asked why a woman with a BMX needed anti-hormonal therapy...ofcourse it is for stray cells as Jennt mentions.  Taking out your ovaries won't let you off the hook.  First of all, doesn't the Tamoxifen just put one into early menopause?? I haven't really paid attention to this since I'm 2 years post-menopause but if you take them out, you'll then just have to take the Arimotase Inhibitors. That's what I've been told I will get.  PS Our diagnoses are exactly the same (except for maybe BRCA).

Cookie - sorry you are having dificulties. Did the benedryl help??

Ladies - here are some notes I took from my meeting with the Oncologist on Friday. I hope this post isn't too long. I thought about creating a new thread, but I'd promised to post here. If you think I should put it in a separate thread, I will.

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Recap:  Heavy, dense breast tissue, normal mammograms every year for the past 20+ years. Bleeding from left nipple in September: two diagnostic mammograms, two ultrasounds, one
galactogram, and two core-needle biopsies. Dx: Multi-focal cancer, mostly DCIS (one area of DCIS AND IDC, a second area of just DCIS). ER/PR+; Her/2/Neu -.BMX/TEs on December 5, 2011. SNB clear, final path report clear. No evidence of any IDC in either breast.

So this is the information the Oncologist had when we met on Friday.

1)  First, she told me that she was very pleased with all the results of my testing. The cancer was small and caught early. (She, too, agreed with the idea that the core needle biopsy had removed all the invasive cancer so none was detectable on final pathology.)

2) She said that in cases like mine, chemotherapy and radiation would not be needed, but that she would offer me medication to prevent recurrence. (Later, it didn't sound like an offer at all, but rather a mandate.)

3)  Even though the areas of IDC were small - .5 mm ( grain of salt) and 1.5 mm (half a grain of
rice) this now puts me at future risk for either a local or a distant recurrence.

4)  A local recurrence would mean that more invasive breast cancer cells could be found in the breast tissue. There is no way every single cell of tissue can be removed at the time of mastectomy,  and it could be possible that a microscopic invasive cancer cell could still be lurking there. We don't believe there is any, and the reports would back this up.

5)  A distant recurrence would mean that invasive breast cancer cells have spread (metastasized) to other body parts such as the lungs, liver, or spine. This would be very serious, and treatment options at that point would be very limited. She used the word "incurable", as treatment would focus on quality of life and minimizing the spread of the disease. We don't believe this has happened, or is likely to happen, as there was no lymph node involvement, nor any vascular involvement.

6) My particular type of invasive cancer is considered a microinvasion because it was so tiny. It is considered Stage 1A. And the IHC tissue analysis indicated that it was a very slow-growing (non-aggressive) type of cancer. So the odds of it spreading anywhere else in the body are very low at this point. The actual risk of recurrence is between 1% and 2%.

7)  The tumors were estrogen and progesterone positive. Even though I'm post-menopausal, the adrenal cortex still produces estradiol, as does cholesterol, and belly fat. Since I am not having chemo or rads, the next best treatment to prevent recurrence is to take either a Selective Estrogen Receptor Modulator (SERM) like Tamoxifen or Evista, OR an Aromatase Inhibitor (AI) such as Arimidex or Femara.

8)  She is recommending Arimidex pending the results of the labwork she ordered. In particular she will be looking at bone density, liver function, Vitamin D level. Most likely I will need to take Fosamax as well.

9)  The most common side effect of Arimidex is body aches...because I have fibromyalgia, this may be a problem. I can try the others (Femara, Aromasin) but if I can't tolerate those, the only alternative would be Tamoxifen.

10) The purpose of this drug is not to prolong my life. The purpose would be to prevent a local or distant recurrence of breast cancer.

11)  I do not need the Oncotype test - the IDC was too small (< 1 cm)

12)  I do not need the BRCA test - there is no family history to indicate this. (Mom was post-menopausal when she was dxd.)

13)  I can still take Premarin vaginal cream for vaginal dryness - a tiny amount, several times a week and tapering off when no longer needed. She did say that this is a case of "use it or lose it" and that chronic vaginal dryness can be helped by intercourse, or other stretching of the vaginal tissues.

14) I don't have to eliminate every source of soy from my diet, I just need to not use soy milk as my regular source of milk. I'm switching to Lactose-free milk. Example - my fish oil capsules contain soy. I can still take them.

15) I can take vitamins, but I should NOT take any anti-oxidants. Recent studies have shown that they help ALL cells grow, including cancer cells.

16) For AI side effects such as hot flashes, Effexor is o.k., as is black cohosh, but no other herbal supplements can be used.

I've said the visit was "sobering" because I was under the impression that my surgery was sort of the maximum treatment for the minimal diagnosis. I was really hoping that I could say "thanks, but no thanks" to a drug that would have no bearing on my future quality of life. Now I have a lot to think about.

I've heard so many comments from people saying "Oh, now you are cancer-free and never have to worry about breast cancer again!" ....and unfortunately, this isn't really the case. Right now, there is no evidence of disease. I am praying that there will be no evidence of disease in me until the day God calls me home for whatever reason.

There are no guarantees in this world. Stuff happens. Accidents happen. I could get run over by a truck tomorrow as I walk to my mailbox. Statistically, this isn't likely, nor is the chance that I will experience a recurrence of this breast cancer. So it's up to me to stay vigilant but not obsessed, and live the rest of my life committing to be the healthiest and happiest I can be.

Not a bad goal for anyone, actually.

Oh - almost forgot - the Oncologist asked if I did much reading on the Internet. She warned me about there being so much bad information out there, and if I WERE going online, to be sure to go to BreastCancer.Org - that they had the best, most accurate info of any of the online sites.

faithhopenluv - you bring up a really good point!

The Oncologist was pretty determined to ferret out evidence of cancer in my family. Fortunately I remembered back to my grandparents and their siblings on both sides, and I have fairly good information on their illnesses and deaths. Like I told the doc, we're "heart" people, not "cancer" people.

 Seems like everyone on both Mom and Dad's sides had heart issues and eventually died from them (well, my mom died of Parkinson's related complications...) Not exactly good odds for me!

Since I had the BMX, testing positive for the breast cancer gene would not change my treatment, and I don't have any kids, so that's not an issue, either.

Is this new information going to change your treatment in any way?

blessings.... thank you so much for your post.Like you had mentioned before, it is sobering. My dx is similar to your's and all along I've heard after surgery there's no reason to think you aren't cured. Guess that's not the case is it? Guess it's just wishful thinking on my part that I'd have surgery and most of my worries would be gone. Like you, no breast ca in my family but I was tested and found to be brca neg. Some good news. My appt with the mo is Friday. I'm bracinig myself for simillar news. I am premenopausal and from what I've read, I have no doubt she's going to tell me I should be on Tamox. I guess I should try to put it out of my head until then.



I suppose I'm being premature, I don't know what the mo's reccommendation is going to be. I guess I've been naive in thinking at some point this would all go away. Maybe it will. I hope so. I think I've been pushing the reality of it all out of my head until now and it has finallly caught up. I'm having a meltdown. Prayers to all.

Evebarry- I would call PS for sure and have them take a look at you.

faithhopenlove- I am also BRCA2+ and was unaware of all the BC history on my dad's side until I was diagnosed and tested. I was tested because my mom was diagnosed 3 weeks before me but there was a holdup on her testing so my dr did not want to wait and tested me.She ended up testing negative and it is from my dad's side after all. I feel lucky to have been tested because it did change my course of treatment from radiation after the lumpectomy I had already had to BMX. I know this is hard news to digest but you are fortunate to know it and make the best decisions for continued good health. Good luck to you!

Blessings- I had the same discussions with my onc but he did tell me pre BMX that there are bits of tissue left behind that put me at a small but possible risk of recurrence. I just started Femara which is an AI due to adrenals and fat making estrogen.

I believe vigilant but not obsessed is the right approach; it is what I am trying for as well.

chrissilini - I wasn't quite to the point of meltdown after I saw the Oncologist, but I sure had to take some time to revisit my direction in this journey. Part of the problem for me was my crowd of supporters (family and friends)...most of whom had no idea what having breast cancer means. I can't blame them at all - I had no idea, either!

I do feel somewhat of a need to be positive in their presence, yet at the same time, a need to educate them on what it means to have a breast cancer diagnosis. (The pink ribbons in October don't really do much of that....)

Now it's time for me to see the glass as half full! After all, the oncologist was PLEASED with my diagnosis. She was HAPPY that my risk of recurrence was so small. But what did I hear? Just the worst parts.....and my imagination took off.

If there were 100 of us Stage 1A sisters in a room, 99 of us would probably have no recurrence at all for the rest of our lives. Why do we automatically assume we'll be the 1% that does? Sheesh. It's like if I'm driving around close to my neighborhood, and see smoke in the distance, I always think - oh, that could be my house on fire!

Now that the new year is here, I want to change my focus from being sick, to living well. I know there are no guarantees that a certain lifestyle will prevent cancer, but if I lose weight, get stronger, lower my blood sugar and blood pressure, and improve my immune system, well, I think that will go a long way toward my feeling like a strong, healthy woman. And just maybe I can kick those AI hot flashes to the curb in the process!

Prayers for you on Friday. Keep an open mind, listen to all the details, and focus on the positive ones. Hugs to you!!!

blessings..., thank you so much for your reply. I think I'm just having a blue day but I am feeling better. Just got off the treadmill and it felt good. I agree that the positive thinking is the route to take. Going down, what I call the dark road, isn't going to help. My BS was so pleased at the final path report and felt so sure that we had nipped all of this in the bud there is no reason for me to think otherwise. Thanks for the words of encouragement! I'll let you know how I make out.



I so like the "Vigilant but not obsessed"....words to live by I think.

12)  I do not need the BRCA test - there is no family history to indicate this. (Mom was post-menopausal when she was dxd.)

There may be two separate thoughts in your two sentences above, but just in case not, in my family, all BC in my family (mom & her two sisters, me and one cousin) are all post menopausal when Dx'd with BC.  I am BRCA2+. I presume the rest are all BRCA2+.

Anyone with te's experience any hardness? I have one area that seems to have gotten hard and a little sore. It is kind of uncomfortable at times. I don't have another appt with my ps for 3 weeks when we start fills. I do need to call and get a release to go back to work. I think I'll mention it and see what he says. I've read of women massaging scars etc but I don't want to do anything he doesn't want me to. I'm sure it's nothing. These things are just uncomfortable!



Eveberry...I'm sorry to hear you are feeling so poorly. Do you have anything to take for the nausea? Take care and hope you get to feeling better soon!

AusieKate....I'm so sorry about your setback. It's hard enough going through this and then to add complications, it's just not fair. Hopefully you'll be back on the road to recovery soon. I'm in a similar situation in regards to treatment. I have my first appt with my mo on Friday and I'm pretty sure she'll recommend Tamoxifen. I could be wrong but my cancer is/was ? ER+ and Prog+. Not her+ though. I know the concern is for cancer cells that may have been left behind or already traveled somewhere else. Still, the potential side effects are weighing heavy on my mind. I was also told by my BS she didn't think Chemo or rads would happen. We'll see what the mo says. Prayers to you and good luck with your decision.

Talked with my ps office today. I don't have any swelling or redness, etc so they think the expander has shifted a little and the port is what I'm feeling. They said by all means if something should change they'll get me in. I'm so sick of appts I'll wait and see.

I saw the therapist this morning. Because a lot of the fluid is draining into the tummy area she gave me circle exercises to do on the stomach area. I' guess it's better the fluid go into the tummy than the breast. I am wearing a mastectomy bra and a tight binder over the bra. It feels like a straight jacket. I am not liking this experience at all! So far today no pain meds. I'm tired of sleeping my life away. My mind is still fuzzy and I'm shaky. I don't do well on meds.

My chest was very bright red at first. My ps last Friday thought it was due to a allergetic reaction to the pink binder around my breast area. He suggested I wear a T-shirt under the binder. I am wearing the mastectomy bra. The redness did go away so he was right.

I have an appointment tomorrow with my breast surgeon and plastic surgeon. I see the plastic surgeon again on Friday.

I can't wait to feel normal again   Hugs, and prayers to the rest of you in your recovery.