January 2016 Surgeries

barcelonagirl

Grandma3x, As long as you fall into the following criteria, which you do, I believe you can have a MammaPrint run on your tumor: Stage I or II; Up to 3 positive lymph nodes; ER + or - and HER2 + or - I am not aware of any trials comparing the two tests head to head, but I was part of the PROMIS Trial which ran MammaPrint on intermediate ODX results. I don't know when that data will be released, but I think it will be very interesting. Since I was a HiGH risk at 21 and my friend was a LOW risk at 25, my guess is it will show you can't draw conclusions when you're "stuck in the middle!"

Kessa - Not sure I can help you with your specific result. The results report states that the low risk average recurrence without any treatment is 5% at 5 yrs and 10% at 10 yrs (Buyse M et al JNatl Cancer Inst 2006;98(17):1183-92. so I'm guessing that they do not have specific stats on each number.

Enjoy your weekend, and try to find some distractions. All these decisions can sap one's energy. Baking a Chocolate Mousse Cake right now for a friend's birthday! Smells sooo good!

virginia123

You ladies are great, and the encouragement and support found here is so special! Made it through my surgery easily and my BS was pleased with the results. Don't have final pathology yet, but nodes appeared negative and margins were clear. Today is day 2 and I am already off the prescription pain meds and showered and doing laundry. I am in no pain unless I try to lift my left arm a little too high. I realize how fortunate I am. Just need my third HER2 test (equivocal on prior 2 tests) to come back negative and all will be good.

barcelonagirl

Virginia123, that's such great news!! Congrats! And showered, that's HUGE! Keep up the positive attitude, and let us know of your progress!

DecisionFreak

Balthus, I am going to read every word of your alarming post and respond as I can. In the meantime, a few comments. First, your MO cannot terminate care for you without locating a new physician with the same skill set. That is known as medical abandonment and the legal system and the medical societies do not take such action lightly. Second, it is a violation of the Patient Bill of Rights (do a Google search and read this important document) for your doctor to make a unilateral decision without your agreement that you are on board. You have the right under the Patient Bill of Rights to work with your doctors to reach agreement on your treatment options. Third, your MO is clearly not equipped to deal with your concerns or simply doesn't want to bother. You do have the right to file a paper trail of complaints against this MO, but you are dealing with life and death decisions and you may want to use your energies in ways that help protect your health. On the other hand, if you file complaints with the state medical board and other important groups that oversee healthcare, your insurance company may be more willing to pay for a second opinion. My viewpoint is that you need to consult with another MO but not just any MO. I highly recommend that you seek care at a comprehensive cancer care treatment center. I can help you with locating resources for getting help with transportation and lodging if you need assistance with expenses. You would be amazed at how much help there is for breast cancer patients. I have gotten a great deal of such assistance. If you need a referral to another MO at a top notch institution, and your MO balks at writing you a referral, play hardball. Send her (or is it a him?) a fax stating that he or she has medically abandoned you and violated your Patient Bill of Rights by not allowing you to be a full partner in your medical care. I can nearly guarantee that you will get your referral if you need one.

I ran into an ugly MO at the wonderful comprehensive cancer care treatment center where I am being treated, and I got in touch with my surgeon who is the head of breast cancer care at this large center and teaching hospital and asked that this awful MO be quietly taken off my case. She did the same thing to me that your MO did. She made a unilateral decision not to prescribe AI drugs. She excoriated me for trying to address medical issues related to the AI drugs. However, I have a full medical team at this big cancer care center, and they had already told me that I am a young woman at 61 and that they were all concerned that the AI drugs might turn me quickly into an old woman due to my chronic pain from fibromyalgia. My team believes that I have very low risk for recurrence. I was very concerned about the way things were going, and I was able to get help from a famous breast surgeon in working with my team to come up with a treatment plan that does not include AI drugs and will not require radiation if the final path report is clear. I am thrilled with the possibility that I may be able to bypass radiation due to the oncoplastic surgery, but it took a huge effort to develop my treatment plan. The point is that you must soldier onward here until you reach a satisfactory treatment plan. You must get the answers you deserve. And, in truth, I think you are nearly there in knowing what you need to do.

I will read your post carefully today. I may or may not have anything else to add.

You have the ability to hit these problems straight on. Do not allow anyone to intimidate you or to try and dismiss your concerns. As my breast cancer surgeon told me, "You must ask questions and get the answers you need. You are your own best advocate." And, since my surgeon heads up the breast cancer care group where I am having care, I think her opinion represents the prevailing opinion, the idea that the patient has significant rights in determing the direction of her healthcare.

Hope you are able to do one enjoyable activity this weekend.

DecisionFreak

Virginia123, I will be sending good thoughts that you get a positive report. I am jealous about the shower. I cannot get immersed in water. The PS said I could or would get an infection.

Everybody else, I will try to catch up on the posts. I do think the women on this thread have demonstrated tenacity and intelligence in doing their homework. It has personally been exciting for me to see the high level interactions and great support shown by those on this thresd for each other. As somebody said we are in a club that nobody wants to join.

BarredOwl

[Deleted as not necessarily current any longer]

stellamaris

DecisionFreak - great idea and great minds think alike - my better (and much more patient half) bought us a 65 inch TV - so movie night is on with a vengeance! And I will definitely ask about biopsy of the breast tissue, both sides. I hate when I go into mouse mode....

Grandma3X - thank you for your support and good wishes . Our center does have integrative therapy and I will take advantage of services if these mood swings continue. As others have mentioned, the waiting is probably the hardest - and I think too this is one of the first times in my life I have spent so much quality time with me maybe becoming a little too self-involved. So sorry your father is not well. I dreaded telling my mother - my brother passed away at age 58 a week before my dx,. Only confided in my sister and swore her to secrecy - everyone knows now, but you are right - it is important that they know. My sister (another one), told me that my Grandmother had BC. I had always believed there was no BC in the family.

Balthus - Was wondering if you have a family doctor? He/She may be able to refer you to another MO. Alternatively, perhaps you could find out the name of the Director of the center that is treating you, and write a letter outlining your concerns and request a referral to another MO. Doctors are people too, and sometimes personality styles just don't mesh. My BS and MO are not very approachable either - neither of them are very open to questions and explanations.- as opposed to my RO who was extremely warm, communicative and supportive (it is funny that even their staff reflect the doctor's style). I have decided that after my surgery, when things settle down, I am going to write the Director of the breast center I attended and provide some feedback on my experience. Everyone - hoping you have a great weekend - those of you who are recovering, sending strong healing thoughts, and for those of us still waiting, sending calming, peaceful thoughts. This too shall pass. Ciao

One of our favorite hikes

Kessa619

Thanks, BarredOwl. I have the same reading that you do of the import of the Mammaprint test. There is a bit of information in my test results about responsiveness to chemo, but the test results are considered only prognostic, as you point out.

I have only seen one MO, but he polled several of his colleagues for me from other institutions. None of them gave a strong opinion. There were a lot of "maybe" there will be a small benefit to chemotherapy. It is considered by this group of MOsto be a patient preference up to a certain cut-off in the intermediate range, which is for some 20+ and for others 25+. I feel like, at this point, I would not benefit from a formal second opinion.

As the decision seems to fall squarely on my shoulders, I have found the guidance from people in similar circumstances to be invaluable. So, thank you so much, ladies for continuing to contribute.

BarredOwl

Hi Kessa:

It is very helpful to learn about the advice others have received, what factors they considered, and how they viewed things. Sending you positive vibes for decision-making as you decide what is best for you.

BarredOwl

BlueHeron

Ladies, I am curious about swelling. I still have a fair amount in the pec area in front of my armpit. Anyone else? I feel like it should be better by now, over 2 weeks post-mastectomy. I guess I don't know what normal is, and I worry about LE. Arm mobility is decent but certainly not back to full, limited by the swelling and tightness of the healing incision.

How are other post-mastectomy people feeling now?

Kessa619

Hi, BlueHeron. I had direct to implant reconstruction and still have quite a bit of swelling. During the second week post-surgery, I started feeling very tight like I was not going to be able to lift my arms above my shoulders or reach above my head. My PS said not to even try to do so yet. She prescribed PT, but I am not allowed to do it until 4 weeks post-surgery. Now, I fon't know whether the restrictions are just for me given my type of reconstruction.

Jr114

Hello everyone,

I had my bmx nsm on 1/13. I still have 2 drains in and still producing 40cc every 24 hours which has been pretty consistent for over a week. Any suggestions on how to get drainage to reduce? They want me at 20cc in 24 hrs to remove them but just doesn't seem to be changing for me.

I also have a small skin opening that they have me putting cream on twice a day. They say they aren't that worried about the skin bc it has blood flow to it.

Any suggestions would be appreciated.

Kessa619

Jr114, my PS suggested that increased activity caused increased drainage. For that reason, she made me promise not to do any housework or exercise for a month after surgery. Do you have any type of restrictions on activity

BlueHeron

Thanks, Kessa619. It's hard to know what is normal and it's helpful to know you have similar swelling and tightness even if your surgery was different. I want so badly to heal well and fully and avoid chronic problems

BlueHeron

Jr114, are you doing a lot of activity? I basically did nothing till the drain was out, not sure how much it matters but I'm guessing it might.

Jr114

Hi kessa619,

My limitation was pickup nothing over 5lbs, limit over shoulder lifting, basically no housework ( laundry, vacuum etc). So Ithink in the beginning I was doing too much just to move around but now I really have been taking it light, but other then the color now being yellowish clear the output still is the same. It is actually starting to make me a little crazy lol---who would think not being able to vacuum would bother me somuch.

My swelling has really gone down so I thought that would help with reducing output. Still have a lot of tightness at times with the te. The ps made it sound that until the drains are out we can't start filling. Also they will not give me driving clearance with the drains in.

Logang

I had my right mx on Monday. I went in feeling calm. My surgeon ended up taking many axilla nodes because in his words, "they didn't look right and I wasn't comfortable leaving them. The surgery ended up taking around 4 hours. I asked the anesthesiologist for a scopolomine patch to prevent nausea and wore it for 3 days. I have had a lot of pain in my right arm and right rib cage and still have to take percocet, ibuprofen, and flexeril around the clock. I have 3 JP drains in place.

I also had a reaction to the chloraprep that they used to cleanse with prior to surgery. I have a horrible rash on my chest, abdomen, neck, and right arm. I started medrol dose pack and calamine lotion because the rash got worse and I had swelling around my eyes. Spoke with my surgeon because I was concerned with it being the antibiotic. He thinks it is still from the chloraprep but called in a different antibiotic anyway.

I know one thing for sure! I am sick of taking pills! I have been taking prilosec, stool softener, mom, and benadryl on top of the prescription meds. Hoping to not need the narc and muscle relaxer for much longer.

Sorry for the long post! It feels nice to vent and I'm glad I feel up to it today! Hope everyone is doing well! Sending healing thoughts!

woodstock99

Thanks to all who responded to m post last night. I live in major city and my BS/MO are associated with a major NCI center that is also a teaching facility. I do think it is a personality or treatment style as the b=nurse navigator who communicated the MO's info t me to,d me that my BS would defer to the MO. I had even asked if the MO would speak with my internist to get a better understanding of my overall health status and she did not want to even do that.

I will pursue contacting another MO even if it means I have to crawl with my tail between my legs to the BS who I did not choose who I regret and I with everything happening so fast I never got back to her so am embarrassed. I also do't think I will have issue with insurance covering a visit to another doctor as they are coded as doctor visits.

For the most part today, I tried not to think about things.

I did see the LANA CLT therapist this morning and she was great and put me at ease about where I am at in terms of healing, swelling, scars, incision, massage, etc.

She thought I was doing grew for under 3 weeks from surgery.

There is one area where the scar is hard on right side and she showed my husband how to massage it kind of perpendicular to try to loosen it up.

I will see her her again at approx the 6 week mark.

She told me to start using coconut or lotion below my incisions where my skin is starting to get very dry but not to start doing anything on the scars yet.

The location where my right drain was removed Monday is also almost all closed and the left drain is still just slightly oozing,

She suggested doing the spider arm walks in the sower and to be sure the water is warm but not too hot and even suggested turning in on cold for a second before getting out.

She did tell me I still need compression to help with swelling so while I had switched out of the post-op torture bra to the Amoena Frances (but with no fills), she put cotton balls inside of it to add padding. I told her I;d rather be wearing nothing or a soft camisole but she said not yet.

She also told me when I return to work on 2/8 to plan 1/2 days the first week as she said it really takes a good 6 weeks to get been close to feeling like you did pre-op.

Lastly, she did suggest that even thigh I have no indication of lymphedema that because I did have 4 sentinel nodes removed on each side that I should always try to have blood drawn from my leg as well as having BP taken there as precaution. She said most places will accommodate you if you let them know in advance but if nit to always have them do on non-d0minan t side. I am right0handed so do on left side if only option,

Anyway, we picked up our dogs who at first seemed like they and forgotten us and after our shocked at the close to 3 week boarding bill, had fun with them the rest of the day. The weather was beautiful and I took my first walk for a few blocks and we watched "The Intern" and had a low-key evening.

Sadly a dear friend's niece who was only 47 passed away unexpectedly this week and the memorial service is Sunday afternoon so my first real outing will be there.

I have also been staying up way too late and have to try to and get back on a better sleep schedule.

So hope every one is having pleasant dreams and as good a weekend as possible.

Merymete

Balthus, it sounds like you are moving in a positive direction! Your LANA CLT therapist sounds great as well. I'm glad you are on a healing track!

I'm a mess. I'm having a reaction to the IORT (intraoperative radiation therapy). The breast that had a reduction is great. The cancer breast looks like a war zone. It's black in multiple places from hematomas, and my incision is open about an inch and solid hematoma mass is coming out. I have stretch marks from the swelling. No infection, I'm doing wet to dry wound care, but it's just so very gross!!! I will see the plastic surgeon again on Thursday, thank goodness.

DecisionFreak

Balthus,

If your doctor is working for a cancer care treatment center designated by NCI that is connected to a major teaching hospital, you have the RIGHT to choose your own medical team. You have the RIGHT to file a letter of complaint if you want at any level including the Board of Trustees. You can choose another breast surgeon too if you want. I am hoping you can find doctors with whom you are comfortable.

Harmony2

Just had my lumpectomy and SNB on January 29th.  All went smoothly except the wire localization had to be adjusted three times. The SNB injections were done in the OR when I was out. The surgeon told my husband he removed three lymph nodes, he didn't offer any additional information. I did well the first night only using Tylenol, but since then the incision has been quite painful. I've been doing a little gentle stretching which has helped, is that ok? The t back sport bras I bought press on the incision. Thanks to an earlier suggestion wearing a Genie type bra with a stretchy camisole over it to hold the ice pack in place and to give more support has been the solution. Wearing a mens warm flannel shirt and lightweight vest with large armholes has been perfect. I was easily able to shower 24 hours post-surgery. Hope this is helpful to those awaiting surgery. 

DecisionFreak

Harmony2, I am not a doctor. The following is personal opinion not medical advice

Maybe others can address the gentle stretching but it is concerning because you are at risk for lymphedema with the removal of lymph nodes and you might inadvertently bring it on with the stretching. I would contact the oncology nurse and ask her about it. Congrats for getting through the procedure. If you keep hurting, you may want to ask for a prescription for gabapentin. It is being used now to reduce the use of post surgical narcotics. I have controlled pain from the breast reduction with Tylenol, gabapentin, and xanax. I have not taken any narcotics since I left the hospital Tuesday evening.

Harmony2

Thank you DecisionFreak, I was planning to call the nurse navigator Monday am. I'll just go back on Tylenol. Thanks, again!

Kessa619

Hi, Ladies. I just discovered a hard, pea-sized, movable lump on my rib on my side about 2 inches below non-cancer breast. I am frantically searching for an innocuous reason for this. Maybe a swollen lymph node? Do we even have lymph node around our rib cage? I really hate cancer.

BlueHeron

Ugh, Kessa.... I fear this will be a constant sort of fear for us for a while to come!

Mobile is good! Did it just pop up? I think swollen lymph node is an excellent guess. I believe our other nodes are doing extra work now, redirecting lymph from it's disrupted pattern, etc.

hang in there! Do you have a follow up appointment soon?

BlueHeron

Also, if you have some anti anxiety meds, take one if you need it! No need for extra anxiety, it does no good.

Kessa619

Thanks, Blueheron. I just don't think there are lymph nodes this far down. It did just pop up. I have a follow-up mid-February, but I believe I will call tomorrow and try Ativan in the meantime. I completely agree - I believe this hyper-vigilance and its accompanying fear threatens to be our our constant companion. And that really ticks me off!

BlueHeron

I think there is a lot of variability in lymph node locations, and we do have them draining from all over. Google images lymph node map?

And I'm glad you have Ativan. I've never needed it before but I'm so so grateful for it these days.

barcelonagirl

Yes, Kessa, Ativan and deep breathing are great for these moments : ( And call your doc to alleviate any additional worries. You think you've got things under control, and then realize how the smallest symptom can set us off. Hugs to you!

DecisionFreak

Yeah, I did not have any lymph nodes removed but my breasts look as in some places as if I were beaten black and blue with a bag of oranges. I found a little lump yesterday close to the skin surface on my right breast. I am thinking that everything got rearranged during the DCIS surgery and breast reduction. I am going to start watching movies soon and shut down my mind. The surgeon can feel the lump next week. Since it only appeared after surgery, I am not too worried but I have anti-anxiety meds and I will take them if my mind starts running out of control.

I am having shooting pain in my right breast. It took a big hit during surgery. I think that I may have this kind of pain in one or both breasts for the rest of my life, although it will probably be infrequent as the nerves are able to heal. I can take some Tylenol.

It is very weird to me that I have no idea exactly what two surgeons working subsequently and a host of other medical professionals in the OR did to my breasts during the 4.5 hours I was under general anesthesia.