January 2016 Surgeries

Jr114

Balthus - I would definitely get another opinion. It took me 3 bs to get to the one that I felt confident with and I am so glad I did. You have to be sure that you are happy with the final result and have all information to make an informed decision of how to proceed.

As far as AI - Back in April I had two excisional biopsy that resulted with large amount of adh. My bs thought that I should try taking tamoxifen bc it was er/pr+. She said try it and hopefully it will block the estrogen and starve off any potential cells from changing. I did try it but 3 month later my next mammo came back with calc then biopsied came back dcis. Due to the large area I went with nsm bmx. I did not handle tamixifen well so I will prob opt not to take again if suggested. But during the journey I have talked with many that have taken these type of drugs with very little side effects so I would suggest if it makes you feel better to try it since no one can give you a definite yes or no to take or not to try it especially if it will give you peace of mind that you tried it

Mominator--- hope you are doing better today.

Merymete- try to take it easy so wounds can heal. That really stinks to have the wounds reopen.

Decisionfreak - Glad to hear that your surgery was a success and you handled it well.

I can't believe that it is the end of January already, Seemed like my time up to surgery went slow and now the last two weeks since my surgery really went by fast. I went for my post op appt#3 and I still can't have drains out since My output is double what they want. Next appt is Tuesday so fingers crossed that drainage gets better. Down to just Advil now at night so pain is really minimum.

Hugs to everyone.....things get better with each passing day.

grandma3X

Balthus - I'm sorry I did not see your post on Monday. I agree with the others that you should ask your MO why you should not try AIs - it could be that your risk of recurrence is very low. I think they also take age into account.

Stellamaris - my BS also told me that it's unlikely that I will need chemo as well. ILC responds well to AI and studies have shown that women with ILC have better overall survival on AI alone compared to those who had AI with chemo. I plan to ask for the Oncotype dx anyway, just so that I have some information on the biology of this beast. And if it does have a high recurrence score, I will have a better idea of risks vs benefit.

DecisionFreak - I'm so glad your surgery went well! Take care of yourself!

Merymete- so sorry about your incision! Do they use skin glue to close it up again? Hope you do not have to go through another surgery!

Mominator - love your new profile photo!

I had another rough night last night - too much anxiety. Today I'm going out to lunch with my daughter and then do some laundry and grocery shopping to take my mind off things. I hope to go to work for a few hours tomorrow.

Happy Thursday to everyone! Edwsmom, mama, curly and Virginia - thinking of you today!

Mominator

My PS had me come in to the office as now I have a red patch on my right breast and a dull ache beneath the patch.

PS says looks like an infection is brewing. He's switching me over to two high-powered antibiotics and hoping we nip this in the bud.

He wants me to monitor it closely. If it stays the same or slowly gets better, fine. If it gets worse, to call the office over the weekend.

Kessa619

Mominator,

I am so sorry to hear your news. I will be praying that the antibiotics make quick work of this infection.

DecisionFreak

Hi, everybody, I have not taken any narcotic medication since leaving the hospital. When I saw the plastic surgeon she told me to get a support bra from Wal-Mart while I allowed my surgical vest to air dry overnight. It took me a long to figure out which bra would do okay when I got to Wal-Mart today.

I cannot remember if I said that the breast surgeon told me that if the path report shows low risk of recurrence that she will recommend against my having radiation. If I do need radiation, the surgeon said I would be able to handle it better that I would have previously due to the breast reduction. Women with large breasts are at high risk of radiation poisoning and from negative short and long term impacts of radiation I have been told. I have to make another 450 mile round trip next week to see the breast surgeon and the plastic surgeon each on separate days. I hope they give me a break soon as this travel is wearing on me.

I am supposed to keep my areolas covered with little yellow strips but the nipples are left uncovered. I have soft gauze pads over the surgical incisions but the plastic surgeon removed the tape yesterday. If I have an infection brewing, I will only know it if I get a fever because I am supposed to keep these breasts encased in a support bra at all times.

Breast reduction is supposed to be one of the most difficult surgeries a woman can have. The plastic surgeon has to cut through nerves and blood vessels after the surgical oncologist removes the cancer. I am amazed that I have had very little pain. I did not get constipated either.

I am mainly tired from all the travel, but I must press on. I want to be in the vanguard of women who choose alternatives to radiation and chemo preventive drugs. Breast reduction was and still is an alternative for me unless the path report brings surprises. It is not possible for everyone to avoid aggressive treatment, as cancer is often an insatiable monster that must be stopped.

Merymete

Thank you for your kind words, Balthus, Melgirl, Jr114, and grandma3x! The plastic surgeon says to keep the wound clean, it's going to continue to drain. No signs of infection, I am grateful.

Thinking positive antibiotic thoughts for you, Mominator.

Decisionfreak, rest as much as you can. This surgery plus the oncoplasty takes a lot of healing. Be kind to yourself

mama26

Hi all. Surgery went well and I should go home today. I had quite a bit of pain due to tissue expander placement. They said I was having muscle spasms in my pectoral muscles. Ouch. I hope all of the other surgeries went well too. Praying for all.

CoolgrammieNC

hello mama26....so happy all went well....wishing you a speedy recovery, remember what everyone tells us, stay ahead of the pain....good luck and happy thoughts......

grandma3X

Sadiesue, melgirl and harmony - thinking of you today!

Looks like we are in the home stretch! I feel better today, anxiety-wise. Keeping busy is the key. I went to lunch with my daughter and then to he grocery store, came home and did 2 loads of laundry, walked 2 miles on my treadmill while watching reruns of Falling Skies on my tablet, then went out to dinner with DH. I was definitely a bit sore after all of this but slept really well! I would like to go back to work, but they still have not made the move onto temporary housing! I packed up my office before surgery under the assumption that they would move the offices that week. I could work from home (and have done some every day) but just getting out of the house would really help my attitude.

Hope you all have a wonderful weekend! If you think of it, pop over to the Feb. 2016 thread and write a few words of encouragement, or to share a few tips. I found it really helpful to hear from others who had just gone through surgery!

BlueHeron

thinking of the last of our January surgery sisters today!

I'm feeling sad and anxious today. I really thought all the hard decisions would be done after the surgery decision and the recon decision. But here I am again with another seemingly impossible one.

The margins for my IDC were fine. But there was DCIS very close to the superior margin (skin), <1 mm. So now i'm faced with deciding about post-mastectomy radiation. I have a history of 10 years of radon exposure so that makes me extra nervous regarding lung damage. My RO can't really give me recurrence rate numbers at this point, cuz the close margin of DCIS is low grade, but obviously in my case it went invasive anyway. Tumor is low grade too. Risks and benefits are really not clear and so making this decision feels impossible. I'm going to meet with my MO who I have not yet met and also see what she thinks.

I am so so so fatigued with life or death decison-making. I hate this.

grandma3X

BlueHeron - I think I'm probably going to be in the same boat. My margins were clear and there is no indication of nodal involvement but the size of the tumor puts me in a gray area. I have a strong family history of lung cancer, even an aunt who never smoked or ever lived with a smoker, so my biggest concern is the collateral damage to my lungs. I go to see the RO next Thurs. and will let you know what she suggests. I found this web site:

https://www.guideline.gov/content.aspx?id=37924

that summarizes risks and benefits for radiation therapy for post mastectomy patients. Keep in mind, though, that Rx has greatly improved over the years while many of these studies were for patients who underwent Rx many years (or even decades) ago, so the risks are probably much lower today.

Kessa619

I can relate to what you feel, BlueHeron. I have an intermediate oncotype score and my oncologist has put the decision of whether to have chemotherapy in my hands. He said the benefit is unknown and likely to be small (shaving 1-2% off a 12% risk of distant metastasis), but there are obviously known risks to having chemotherapy - some catastophic like secondary malignancy. I feel like I am placed in an impossible situation.

My question for you and Grandma3X - can they submit the DCIS for Oncotype testing? It will come back with a recurrence risk that may help you make the radiation decision.

grandma3X

Kessa - that's a good idea. I plan to ask the MO to submit mine for Oncotype but I'll also ask the RO if the Oncotype score could help in deciding about Rx.

BlueHeron- here's an article about Oncotype DCIS test scores and radiation:

http://www.breastcancer.org/research-news/more-pro...

I'll have to see if this applies to those of us with large invasive tumors as well.

barcelonagirl

Ugh, just typed a long response and lost it...so I begin again with something shorter : )

Came across this message board and wanted to chime in. My surgery was 3 1/2 years ago, and Feb 5 will mark 3 years since I finished chemo, and can say that I feel great, side effects are virtually non-existent! Believe it or not, you too will get to this point!

Like Gemma12, my cancer was DX a few days before my 50th. I had 2 small tumors (the settings didn't allow for that on my specifics below) 1.4 and 1.5 cm. With all the other factors being "good" no nodes, ER+, HER2- they didn't think I'd need chemo. My Oncotype came back 21. After lots of other opinions which were all over the board, my MO ran a MammaPrint (FDA cleared, looks at 70 genes, results aren't based on taking Tamoxifen for 5 years, and gives you a HIGH or LOW risk of recurrence.) Mine came back HIGH risk...everyone was surprised. I did 8 rounds of chemo and am SO GLAD i had that test!

So Kessa and grandma3x, can you ask for the MammaPrint test, so you don't have to deal with the intermediate results? While some insurance companies won't cover two tests, a lot will, esp if you have an intermediate result. Call customer service at the company, and they'll help you. 888.321.2732 (looked up the number for you). Also, Oncotype has an ongoing trial that has regrouped the ranges, and they classify low risk as 1-10, intermediate 11-25 (where 67% of patients now fall) and high <25. So who knows what the right ranges are now?

I can find more statistics if you need them! Hope this helps!

Kessa619

hi, barcelonagirl. i did have Mammaprint too. It came back low risk. That gave me some comfort, but my MO has no experience using anything but oncotype and gets a little dismissive of the Mammaprint result. I feel like a high risk result from Mammaprint would definitely push me toward chemo, but does the low risk result have the same impact? Not sure. I feel stuck in the gray zone. Thanks so much for giving your thoughts to us newbies

barcelonagirl

No! MammaPrint provides binary results!!! If you had a LOW risk, it is likely that your tumor would not benefit significantly from chemo! CONGRATS!! Of course, data is always emerging to provide more insight. There are a number of MOs who are just more comfortable with the Oncotype test as it provides a score. MammaPrint has strong science behind it...and is in my opinion a more sophisticated test. While you can't look at an 18 and say it's closer to low risk, so you don't need chemo, you CAN feel confident that LOW risk MammaPrint is that! (Drukker CA et al Int J Cancer 2013; 133(4): 929-36) I'm a great example of 21 with a HIGH risk, and a friend had a 25 and came back LOW risk. MammaPrint was created by allowing the tumor samples to identify the 70 most significant genes predictive of recurrence risk, as opposed to a scientist selecting genes based on documented gene function! (it can get confusing.)

Gemma12

Barcelonagirl - so glad I checked in today and saw your post. I'm anxiously awaiting my Oncotype results. My fear is I'm going to be in the intermediate zone and will have to decide for myself. After reading your post, I will ask for the MammaPrint if I do fall in no-man's land. Although the thought of more waiting might cause me to have a stroke! I am not a patient, patient!

I hope everyone who is through their surgery is healing well. To Virginia, Sadie, Mel, and Harmony Good luck today! I think you are the last official "January" surgeries. All those who will have surgery in February, I wish you good luck, clean margins and no node involvement!

Amy

BlueHeron

Holy cow, you women are awesome! Thank you for those links, they were very helpful! It seems that what I have to do is extrapolate from the research that does exist (eg DCIS recurrence after lumpectomy, invasive recurrence after mastectomy with tight margins, etc), and then try to apply it to my wonky situation as best I can (invasive CA with clear margins, DCIS at close margin, mastectomy). I think the things I'm learning are leading me towards doing it. But I will talk to my MO first as well, just for another opinion.

It's amazing how many of us find ourselves in gray areas with very very difficult decisions. What a hard thing we are all doing.

barcelonagirl

Gemma12, let us know of your results. Some areas of the country are more supportive of MammaPrint than others. Smaller hospitals that fall under larger institutions usually follow the "big boys" decisions about who to use for testing. Hopefully you'll come back really low risk, and it will be a non issue!!

DecisionFreak

I echo BlueHeron. I was in the middle of writing a post about the very critical information being shared when I got a phone call and lost my post. It is amazing to see so many smart women sharing invaluable information and helping each other!

BlueHeron, others here may be able to confirm that there is an independent expert whose name I believe is Michael Lagos. He charges about $750 to review your case and give an expert opinion. Cancer patients with whom he has consulted say he has an extraordinary ability to take all of the data from the patient and evaluate it. I know that he charges a considerable fee but I have seen people on these boards say it was worth the money. I can double check his name and get back on this board to confirm it later.

grandma3X

Barcelonagirl - thank you! I thought the Mammaprint test required flash frozen tissue and could not be done on formalin- fixed, paraffin- embedded tissue, but I looked it up and their requirements have changed, so they can use the fixed tissue now. I don't know if I am eligible with a tumor of 5.0 cm (they say it must be "less than" 5 cm) but I'll ask anyway. I wonder if there are any trials open to compare the two tests?

Kessa619

barcelonagirl, there was something about my Mammaprint results that I did not understand, but maybe you do. My low risk score is something like .2 on a contiuum from .1-1. Does that mean I am not as strongly low risk as someone with a .9, for example, on the spectrum. I know this is a very specific-to-me question. Just thought I would take a chance asking you because you seem so knowlegeable about the test. Thanks so much.

stellamaris

Hello everyone - very interesting reading your posts regarding the Oncotype results. I fall in the high intermediate range for the oncotype (27). I don't know if my MO would have offered a chemo option if my BC had been IDC - he was very clear that chemo is not that helpful for ILC. Which begs the question as to why he would do the test for ILC at all. Even if it came back in the high range, why would that have made a difference for chemo or not if ILC doesn't respond to it? I am also intermediate on other criteria:

- the path report put my tumour size at 4.5 cm, possibly larger (well, it must be larger, since the margins were not clear). A re-excision to clear the margins was not successful, and I will be having a MX in Feb. The re-excision path report confirmed multi-focality (the 1st path report could not confirm this).

- My BS was quite adamant that I would not require RT after the MX because her MX tecnhnique has never resulted in dirty margins - it would be very rare (her words). She sounded a little irked that I had even asked the question. Yet I heard from my MO that it is possible to have unclear margins after MX

- I am N0 (sort of) - the path report showed some cancer cells in 2/3 nodes, so officially it is N0(i+), considered to be insignificant (then why note it??) LOL

- there is lympho-vascular presence - I have read research that recommends upgrading N0(i+) to N1 if there is l-v presence

- I have also read that only 13% of BC are ER+/PR-, so not only is it ILC (only 10-15% of BC, it is also ER+/PR-, and the ER+ bit is only 7.2 (the negative cutoff is about 6.4) - so again, not very high ER+. The oncotype results say the effectiveness of the hormone therapy increases the higher the level of ER+ goes. So again, grey area, and it is the only systemic therapy I am going to get...

Based on your posts, it seems you american girls are given a lot more say in your treatment options. Given my path stats, I would have appreciated an opportunity to talk through the implications with my MO and BS, but they seem very fixated on the course of treatment they have decided on for me. Also, I am concerned about the "good" breast - the MRI and mammograms showed nothing (they didn't show the tumour either). The only reason they found the tumour was that I found a lump, which resulted in a highly suspicious US. They only do US if they find a palpable lump - so the lump (which is an anomoly for ILC), probably saved me a lot of grief.

I guess what I am struggling with now is the 'good' breast. The PS will be doing a reduction on it after the MX, and I'm wondering if I should ask that they do a biopsy on it.. I know I should be organizing a second opinion, but I'm just so tired. I have been sitting around waiting for this 3rd surgery since Dec 2. Feeling very sad and overwhelmed. Nothing has turned out the way it was supposed to, and I'm now fearful that the CAT scan on Feb 1 will turn up more bad news. I still haven't been given a confirmed date for the MX, and I'm worried that they are waiting for the CAT scan results - maybe they suspect something they haven't told me?? I'm so angry with myself that I didn't insist on a MX Oct 30. I would be so done with all this by now and probably back at work. I don't think the lack of sleep and depression induced by the AI is helping much either . Meh Thanks for letting me whine.

DecisionFreak

stellamaris, it sounds as if you are dealing with a host of variables and risk factors. I am sorry to hear you are sad and depressed. I have been though some tough times lately, and I have settled on movie therapy to stop my mind from working overtime and ruminating. It is as important I believe to turn off the worry buttons a few hours a day and relax.

American women typically have thrown the decision making back in their doctors laps. This thread suggests that some women with breast cancer are seizing our rights under the Patient Bill of Rights to participate fully in decisions about health care. I know that it can be different in some countries but it seems to me that you have an inborn right to do the same, even if your country does not have a Patient Bill of Rights.

The main thing I can address is whether or not you are going to have a breast biopsy of the breast undergoing the breast reduction. I think in the U.S. the doctors perform biopsies on all the tissue removed from a cancer patient. I am assuming that my doctors will send tissue from my good breast for biopsy. If it were me, I would ask the doctor if the tissue from the good breast is being biopsied and if not I would definitely request a biopsy for the tissue being removed in the breast reduction. I would definitely want to know now if there is cancer in that breast.

I hope you find a few minutes of joy and peace this weekend.

Mominator

DecisionFreak: that's a very important point about the tissue being tested.

I don't know what the statistics are for lumpectomies and mastectomies, but here on our surgery board we have had ladies go to surgery with the doctors thinking one size tumor(s), and find out it was much bigger (grandma3x among others) or find other tumors.

My BS told me about a planned nipple-sparing mastectomy where there was a small tumor in the outer quadrant. They were completely surprised when the tissue under the nipple tested positive.

I do know the statistics for prophylactic surgeries: 10% of prophylactic mastectomies test positive for cancer.

My PS said it's standard procedure to test ALL removed tissue. But I don't know if that is standard procedure for his group, our state, or the US. I hope it is the standard for all over the word, but it is certainly worth asking about pre-surgery.

You ladies amazed me with your knowledge about treatments.

Mominator

In other news...

After two doses of the two antibiotics, my fever broke. It's been 24 hours since my last Tylenol and no fever.

Thank you all for your prayers and thoughts.

woodstock99

late Friday night post and hope I don't lose mine either which seems to happen when I am using my phone case desktop, this month has seemed like it has been both agonizingly short and endlessly long at same time. I am heartened to hear of everyone doing well and sending healing thoughts physically and emotionally to those who are not.

After reading the last few posts about oncotype and mammaprint I do have a question: are these tests done on all types of BC? I know neither were done for me and still not clear if I need to pursue and how to do so if my surgeon did/would not do.

I can also tell you that after following up up with the MO who does not want to put me on AI that she also communicated that there is no reason for me to even see her again since she is not "treating" me.

She said I need to lose weight, exercise and since I did not do genetic testing, have a pelvic ultrasound but I can get that done anywhere.

I think she fired me for asking questions about her decision.

Has anyone who has had BC and BMX not have an MO for ongoing following even if not on AI? I was pretty stunned.

While I am sure my BS technically did an excellent job, I am all around disappointed with the after-care, lack of post-op help and guidelines, nasty nurse who makes errors and gets defensive when I try to get corrected (she have me prescription for 2 bras and 8 forms) and regret not opting to go with the other surgeon I was considering.

I feel like I no longer have an advocate for my ongoing health and well-being but would be embarrassed trying to see the surgeon I did not choose for a post-op consult if there even is such a thing.

I definitely think I am going to find another MO for a second opinion as I want to do everything possible to avoid reoccurrence. Shouldn't everyone who has had BC see a MO for regular follow up if only for surveillance?

I finally took off the bra I have been wearing since surgery (I had 2 of them) and switched to an Amoena Frances bra with no filling or forms and at least I do not feel like I have a belt tied around my chest twice. I am still very sore and swollen under my arms so put cotton guaze pads under the bands. I have an appointment tomorrow with a LANA certified PT who I am going to self-pay to get an evaluation of how I am doing mobility and healing wise.

Has anyone started to use any lotion or oil in the area above or below their incisions? My skin is very dry and starting to get flakey?

Has anyone or when will you start to do any scar massage or use any scar strips?

It's questions like this that when I asked my BS when she took my drains out this past Monday her answers were not very clear or more like whatever you want to do.

Anyway part of my post got deleted when I tried to edit and fix typos but I wished everyone a good weekend and happy to be picking up Moses & Coco from boarding tomorrow afternoon after a few weeks as they are jumpers particularly the 7 month old toy poodle puppy. I forgot the rest of what I wrote earlier.

I know I also said I hope we all stay in touch in the future. Thanks

JuniperCat

Oh my goodness, Balthus please go to another MO for another opinion.

Mominator

Balthus, I am so sorry that your current MO has left you with so many unanswered questions.

As I reread your pathology report, there's a lot to digest. Here's what I see.

Right breast: DCIS and LCIS; negative margins and >10mm; and no nodes involved. The in situ for both is very encouraging to me, although I am even more concerned about two types of cancers present. What are the implications of multiple types of cancers?

Left breast is even more complicated: Stage 1a and DCIS invasive ductal carcinoma, extensive LCIS, and atypical lobular hyperplasia involving preexisting fibroadenoma and adenosis. Again, two types of cancer, plus there is an invasive component. Hyperplasia, fibroadenoma, and adenosis are changes occur in our bodies as we age, but atypical hyperplasia is associated with an increased risk of cancer.

So, there was a lot going on in both breasts, not just the two types of cancer, but the atypical hyperplasia suggests that more areas may have been heading towards cancer.

Note, these are just my first impressions. I would have many more questions about the pathology report, plus questioning whether you need the Mammorint or Oncotype testing.

Have you seen Dr. Susan Love's Breast Book?

So, to ammend my earlier suggestion to get a second MO opinion: Please get a second opinion. Before your appt, go over your pathology report very carefully with Dr Love's Breast Book and make a list of questions. Make a copy of the questions and give it to the MO. Get your questions answered and you'll have a better plan.

grandma3X

Stellamaris - I think you are right to be concerned with your doctor's advice and I hope you do get a second opinion. Most cancer centers also have integrative therapy (mood therapy, nutrition therapy, pain therapy, etc.) specifically for cancer patients that your MO may not have mentioned. If you are depressed and not sleeping, you should be able to get medication or therapy to help. I'm also fairly certain that they will do pathology on your good breast, but ask your BS to be sure.

DecisionFreak - the movie therapy is a good idea. Music is also surprisingly effective - I'm a lousy singer but I have discovered that singing out loud really brightens my mood.

Mominator - so glad the antibiotics are working!

Balthus - Please find another MO - I'm not sure about DCIS, but with invasive cancers they follow you pretty closely for a couple of years whether or not you are taking AIs. Also love the photo!

My dad is coming to visit today. I have not told him yet about my BC. He has been having health problems himself and recently had to move in with my sister because he is no longer able to take care of himself (he has poor balance, forgets to take his medications, and is showing some signs of dementia). With him not knowing, I have been reluctant to tell extended members of my family, such as cousins, nieces and nephews, for fear that they will let it slip. But on the other hand, I think they should know if someone in the family has BC because it may be important to their health history. I don't know of anyone in my family who has ever had breast cancer, but maybe it's been there all along and people just don't talk about it.

Anyway, I hope you all have a fabulous weekend. Stellamaris - I am sending virtual (((hugs))) your way and hope that your CT on Monday is clear.