Diagnosis with IDC

BarredOwl

Can anyone help with these questions with information or your experience?

(1) What is the recommended time-frame for commencing chemotherapy after radiation therapy is complete?

(2) What is the recommended time-frame for commencing endocrine therapy after radiation therapy and/or chemotherapy is is complete?

BarredOwl

Waterstreet

The MO appointment is to review the bone density test he has ordered. and possibly start Hormone Therapy. These Doctors don't believe in talking aparently. I will go to records again after my morning appointment.

I have read on this site and it seems common to have follow ups with sergeons but not mine, and it seems once he has don the operation he is finished with you. I don't see any follow up appts with the RO either, I will find that out today when the final treatment is done and he removes the device.

The first plan of action was, surgery, Radiation, Chemo, Targeted therapy, and Hormone therapy. and they have dropped Chemo and Targeted therapy, I went in to this thinking I had all the bases covered and it has been falling apart ever since.

I have had a few surgeries in the past and this is all new to me. Take care, I will get back with you later today. God bless.

BarredOwl

Hi Waterstreet:

You said, "The first plan of action was, surgery, Radiation, Chemo, Targeted therapy, and Hormone therapy and they have dropped Chemo and Targeted therapy, I went in to this thinking I had all the bases covered and it has been falling apart ever since."

Please do not think that any plan is falling apart! When a person is initially diagnosed on the basis of a biopsy that samples only a tiny bit of tissue, the actual treatment plan may not be known until the surgical pathology and sentinel node biopsy results are available. For example, if your initial biopsy sample was HER2-negative, and if the surgical pathology is also HER2-negative, then targeted therapy would never have been appropriate.

Your treatment plan may indeed be totally appropriate based on the surgical pathology and sentinel node biopsy. But at this point, since no one has carefully reviewed them with you, you do not understand how the treatment plan has been selected! You are asking the right questions.

BarredOwl

Waterstreet

BarredOwl Well another day of frustration. I asked for an appt. with the MO and so far no answer. They want the bone density results first. My RO like my BS was a no show yesterday. The RO was supposed to remove the device and a oncology Tech ended up removing it. I checked out with the RO nurse,I expressed my concern and she could not help me. She scheduled another appt but not with the RO it is with her in two weeks. I went to records and their was no pathology run on the 2nd tumor, the DCIS tumor. The MO told me it was cancer so we are lucky it was found and removed. In researching Ki67 I found this information; Higher Ki67 expression is associated with unfavorible prognostic factors and shorter survival rate in breast cancer. Mine is 28% positive and the article says anything over 18> is unfavorable. It also states my ER counted cells were 97.8% positive Intensity;strong PR 93.4% positive Intensity: strong Then it states The neoplastic cells are strongly and diffusely positive for E-cadherin and focally positive for synaptophyin.The nurse pulled this up from my records and said she is not familiar with the content meaning so she could not help me. She said she will mention it to the RO and see if he will address my concern, she also said chemo falls under the MO so my RO may not address this. She advised as you did getting another appointment with the MO to go over these issues with in the next couple of weeks using patient peace of mind as the basis of consult.

I thank you for your help and don't know if this will help you. I have requested the appt with the MO and now I am back to where I started. My son wants to know what I am doing that they treat me then drop me. I said nothing except I did talk to another patient who is using Medicare and she said they do her the same way. I was asked to ring the bell yesterday and I said its not over till I get answers, so they looked at me and handed me a little certificate that stated I had completed my Radiation.

BarredOwl

Hi Waterstreet:

I love that you told them "it's not over till I get answers." I hope you are recuperating today from a very long week. I will study your post and get back to you with some comments on Sunday.

Sleep well.

BarredOwl

ChiSandy

According to both my bs and MO, chemo is usually done BEFORE radiation. I am surprised by the cavalier attitude and lack of communication among and by your treatment team--they sound awfully dismissive and condescending. You have a right to a full explanation of all your pathology results, whether or not they believe you can understand them. I’m beginning to think there’s some age-ism and other assumptions/prejudices at play on their part(s) as well. You deserve respect, and you’re not getting it. They may not be the best team for you. I agree with those who advise consulting M.D. Anderson or at least one of its affiliates. (Heck, they even run commercials here in Chicago).

marijen

Hi Waterstreet, so sorry they are making this harder for you. They really do sound very incompetent. From now on it's the 'amatuer treatment team'.You deserve better. Chisandy's so right, you need to make a change. After this week, you can do anything. Best wishes.

BarredOwl

Hi Waterstreet:

Another long one, sorry!

(1) Regarding your son's remark, I do not think you "did" anything or whatever. But, you mentioned earlier in this thread that you have a Medicare "Gap" Provider Plan, which provides good supplemental coverage.

Action => Does your provider need to be informed about your Medicare "Gap" Provider Plan (provider name, numbers)? Please call them to ask if they have it, and if not, please inform them of the relevant details as needed.

(2) I agree with ChiSandy that your treatment team is not communicating with you effectively. If they gave you your reports and reviewed them with you that would be helpful.

=> The report will also help you prepare questions for a meeting with an MO.

(3) The Surgical Pathology Report from the Lumpectomy of October 23

On Nov 10, 2015 05:40PM Waterstreet wrote to PontiacPeggy:

"PontiacPeggy Well the cancer is out for now he removed both masses with a good margin. . . He also went and printed me a full copy of the pathology report before he left."

It looks to me like your lumpectomy was on October 23. You met with the MO on November 3, I think. On November 10, you were cleared for brachytherapy, and the RO (?) printed you a pathology report. Is that right?

Check => You were probably exhausted and put it with your other materials. Please check your files/folders/materials in case the document the RO gave you on November 10 was a copy of the long-sought surgical pathology report. If not, I can make another suggestion.

(4) Specific Pathology Findings, Stage and Tests

The nurse pulled up a screen and told you this information, but she doesn't know what it means: My Ki67 "is 28% positive and the article says anything over 18> is unfavorable. It also states my ER counted cells were 97.8% positive Intensity;strong PR 93.4% positive Intensity: strong Then it states The neoplastic cells are strongly and diffusely positive for E-cadherin and focally positive for synaptophyin."

=> This is an error-prone process of theirs. A copy of the surgical pathology report is required to confirm your name, the date of the procedure (10/23), tissue(s) examined, margins, node status, histology (ER, PR, etc). See item (3) above.

Remarks:

Ki-67 is one factor considered in treatment decisions. In one thread you listed Ki67 as 22% and in this thread as 28%. Verbal information (even with notes) might be unreliable. Ask the MO to explain the value and meaning.

If the ER and PR status is that of the IDC, that is fine and it permits endocrine therapy.

"E-cadherin" is a test that the pathologist may use to help determine if the tumor is ductal or lobular. With IDC, it is often not tested at all, and may not be important in making an IDC treatment decisions. Confirm with the MO.

"Synaptophysin" is another marker used to identify certain breast cancer sub-types, and may not be important in making treatment decisions for IDC. Confirm with the MO.

(5) Chemotherapy

DCIS is always non-invasive, and is never treated with chemotherapy. DCIS does not ever warrant chemotherapy.

Chemotherapy, if recommended, would be for the IDC.

The chemotherapy decision factors in certain features of the IDC (actual size of IDC, node status, ER, PR, HER2 status, node status, Ki-67) and your presentation (including age (67 yrs old, general health, and comorbidities (heart issues, high BP, kidney function, etc). The benefit chemotherapy could provide (over and above that provided by endocrine therapy) is weighed against the risks of chemotherapy (possible harm from side-effects). Discuss with MO.

With ER+, sometimes the "OncotypeDX" test may be done to guide the chemotherapy decision. Discuss with the MO.

=> I see she advised "getting another appointment with the MO to go over these issues with in the next couple of weeks using patient peace of mind as the basis of consult" and that you "have requested the appt with the MO". Follow up as needed to be sure the appointment is scheduled.

(6) We all agree there is value in seeking a second opinion. Here are some advantages:

(a) The second opinion team members may be better communicators than the current team.

(b) The second opinion place will work with you and current providers to obtain copies of all your imaging, pathology reports and written reports, and request transfer of the pathology slides overnight. They can give you copies of the report.

(c) A second opinion MO might request further tests (e.g., OncotypeDX test).

(d) A second opinion might confirm treatment. If the plan of lumpectomy plus brachytherapy with endocrine therapy alone is confirmed, that would give you peace of mind.

(e) Per ChiSandy, chemotherapy is usually given before radiation. If chemotherapy were indicated, it might still be possible to have chemo, although less preferred. This would be a point to seek advice on.

=> From other posts, I see you are not far from Austin TX (45 minutes). Would you be interested in seeking a second opinion at another institution (e.g., MD Anderson)?

If you get a second opinion, you may choose to continue treatment where you are or transfer your care.

Keep us posted.

BarredOwl

Waterstreet

BarredOwl

Action => Does your provider need to be informed about your Medicare "Gap" Provider Plan (provider name, numbers)? Please call them to ask if they have it, and if not, please inform them of the relevant details as needed. We go over coverage everytime I visit the medical facility, so they are aware.

It looks to me like your lumpectomy was on October 23. You met with the MO on November 3, I think. On November 10, you were cleared for brachytherapy, and the RO (?) printed you a pathology report. Is that right? He did not print the whole Pathology report. I have compared them and whe the nurse pulled up mie on her computer it was much longer than what I was given. The one I ws given had two more pages than the first but was basically the same information over again.

I understand what your saying about the rest but would like to see if they will let me visit with the MO before January appointment before getting second opinion. I will let you know.

ChiSandy

Shirley, you have a right to a printed copy of your entire path report, regardless of whether your team thinks you would fully grasp it. You also have a right to meet with your MO if there’s any question as to therapy beyond the radiation you’ve just finished and the endocrine therapy that you will also be getting. Austin isn’t exactly a stone’s throw from Houston, but is U.T. Hospital (or the largest teaching hospital in your area) M.D. Anderson-affiliated? If so, it’s a pretty good idea to get a second opinion (and you need full copies of ALL your images and reports to bring with you). You can still meet with your own MO first and then compare recommendations. If your current team gets in a snit about being played off against the Anderson team, well, that’s their problem--not yours.

BarredOwl

Hi Waterstreet:

I will keep my fingers crossed for the MO appointment.

(For your information only in case your appointment doesn't come through in your desired time-frame: A second opinion might not recommend chemotherapy. But if chemotherapy was recommended, you would also receive expert advice about preferred timing for starting treatment.)

Re the full surgical pathology report, is there a separate Medical Records Division that you could call? If so, try calling to request "a printout of the the complete surgical pathology report from the October 23, 2015 lumpectomy, and any addenda or supplements (including HER2 testing)". Ask when it will be ready for you to pick-up. 🍀

If you already tried that, if it doesn't work, or if they will not give you a copy before your MO appointment, it may be time to enlist help from someone, such as a family member, the nurse assigned to help you, a social worker, an "ombudsman" or other patient advocate at the center. (I know the assigned nurse and social worker were not responsive to you in the past, but they will know the law and records system, and this matter is within their remit.)

Take care,

BarredOwl

Waterstreet

BarredOwl ,ChiSandy, Marijen, Well I called again today asking for the appt. I am going there tommorrow to leave a message with all my concerns listed. I am praying this will get his attention better than just calling. They are all off Thursday and Friday and I was suprised when they announced that. So it might still be next week before I get a responce. I will keep you posted. I have to go to Round Rock January 5th and that is close to Austin so if I get no reply I can go to M.D. Anderson and see if I can talk to someone there. If I don't hear from my MO I can even call to get and appt to speak with someone there.

Hope this finds you all feeling better have a wonderfull Thanksgiving!!! I will be at my DIL's helping her make pies and get as much prep as we can done finished before Thursday. They will have a housefull with other family coming from Mexico (her family).

I will keep you posted. God bless

BarredOwl

Hi Waterstreet: I have some very uncooperative dough resting in the fridge this minute.

Happy Thanksgiving to you and your family!

BarredOwl

Waterstreet

BarredOwl and all on this site,

Prayers for victory against cancer and God's blessings for your speedy recovery!

MB12

Hello Ladies,

Hope everybody is hanging in there. I had bilateral mx surgery w reconstruction on Monday and came home Wednesday.  Got a call from my doc and will be going back in. Dcis is under my right nipple at 1mm and a node has a 4mm mass in it. So, removing nipple and reconstructing nipple. Then, removing all nodes and getting a scan. 

These drains are for the birds!! I'll keep you all posted and sending prayers daily!!

Michele xo

BarredOwl

Hi Michelle:

You sound like you are feeling okay, except for dealing with drains. I am sorry about the additional pathology findings, but hope the further surgeries will go well.

I can't remember whether you received an initial assessment by a lymphedema therapist for information purposes and baseline measurements. If not, you may wish to ask your surgeon for a referral to a lymphedema therapist, if possible prior to the further node surgery (or if not, shortly after).

Will keep you in my thoughts and prayers.

BarredOwl

MB12

Hi BarredOwl,

TY for the info.  I have not received initial assessment. I will have to check that out, tomorrow. I have a few final questions to clarify on the tumor, as well.   I've heard about the arm swelling.  Ugh! 

I leaked from one if my drains and made a dressing around that last night.  I must have tugged on it.  I am hoping to get the drains out this week, but I'm still pushing 30-35ml on the right side. I've walked a half mile 4 days this week n back at it tomorrow.  I was out of it and ran a fever after surgery, until the 15th.  My boobies are throbbing from saline weighing more, expanders n nerve pain, but all in all, feeling good! 

TY for your thoughts and prayers!  I hope you are well!! 

Michelle 😊

NJ-Jen

my drains are "back filling" if I don't get to them fast enough and my hip was getting wet. I am trying to get to those more often now. I find the drains a pain, especially in the middle of the night.

A couple have some solid things in them which either looks like an alien or a liver... It hurt to laugh

BarredOwl

Hi Michelle and NJ-Jen:

Michelle, glad you feel well enough for short walks. It is nice to get out. If the leak is at the point where the drain enters, my instructions said to change the sterile dressing daily to keep the entry site dry. Perhaps more often if not dry? If in doubt, don't hesitate to call in to the let the nurse know what is going on and get their advice.

I am two years out and doing okay. I didn't have reconstruction, but a few things still stand out in my mind: the burning sensation under my arms from SNB, a seroma under one arm (pocket of fluid accumulation), and the discomfort at the site where the tubing from the drains entered my sides. Bleh.

Jen, you can buy a box of individually pre-packaged antiseptic "alcohol swabs" (sterile, alcohol soaked squares of a fabric-like material) at your local drugstore to help you "strip" or "milk" the tubes and prevent clogging by the "alien" material, which will move downward and eventually out into the drain bulb. As you usually do, hold the tube firmly in place with one hand (so as to avoid pulling it out of you), starting near the body. Use the "swab" to hold the tubing in the other "sliding" hand, a little farther out from the body (pinched between index finger and thumb), and slide toward the bulb, very gently pulling the tubing between your hands. The pulling and very gentle stretching helps to dislodge "alien" material. You can move the first hand down a bit, and repeat until you get to the bulb. The "swab" just makes it easier to slide along the tubing, because the tube is sort of sticky feeling, and also makes it easier not to pull too hard.

Wishing you both rid of these drains soon.

BarredOwl

[Edited to add: I should have mentioned that you can't really get the "alien" particles out in a single session. It probably takes around three sessions over a day and a half or so to move them along. But I think moving or dislodging them helps keep the flow into the bulb.]

NJ-Jen

Thanks for the tips, owl!

I have a zillion alcohol swabs (was taking a daily injection) so using those or even just hand sanitizer workers for me to milk the dang things. We have worked the tubes clear as most nurses were not milking and it took a while to get the aliens down.

I don't have many dressings actually. I am allergic to tape and so they just have them open. I am trying to keep things open and clean. I hope to get rid of one or two more leaving me with one more, that one is still filling every 4 hours but is nice and clear now.

My armpits seems to be fine I keep trying to move arms.

BarredOwl

Hi NJ-Jen:

Glad you got them moving! I should have mentioned that you can't really get them out in a single session. It probably takes around three sessions over a day and a half or so to move them along. But I think moving or dislodging them helps keep the flow into the bulb.

BarredOwl

NJ-Jen

yeah. I have been working on one and got out a nice long string just an hour ago. Ewwww!

The rest are all now clear, moving. I still hope to lose a drain tomorrow but I got them working so well they increased in volume. Hope they go back down.

BarredOwl

👽 (Alien emoji)

Maybe the increased flow is from being backed up, and it will decrease shortly once the backlog passes. I'll keep my fingers crossed that you get rid of some drains tomorrow.

BarredOwl

NJ-Jen

alas, the drains stay until Monday... Bummer... Merry Christmas to all that celebrate!

BethL

jen- I understand your frustration. I had my surgery on dec.4 and just got my drains out 2 days ago. Worried that one of them came out too soon. It was consistently at 30 per day and I should have probably waited. But it's so hard and I couldn't stand it. Doc told me that he doesnt like to keep them in too long because then infection risk goes up. He told me what to do if I start accumulating fluid. It involves the er because of the holidays. Urgh. Fingers crossed!

NJ-Jen

I know they are okay I just hate getting up and emptying them in the night. I only have one that is a big producer at this point. I find the points where the tubes come out rather uncomfortable especially now as I am coming down on pain pills. Swelling is still coming down,

If anyone has not had surgery and is wondering how to manage these drains easily, go to Home Depot or the like and pick up a canvas nail apron. It ties around your waist and I have been wearing during the day and sleeping at night. They are cheap, under a dollar. I found the pins pulled a lot. This works out so much better and I am a larger girl and still can tie around my waist... Make sure you have ample room and add tie on if needed. I also got special shirts with drainage pockets but I only got a one and my one breast is weeping a bit so I have to change clothing often.

Ellelou

I got that type of thing from ladies at the hospital when I had my mastectomy but it was made out of soft flannel. If anyone sews, it's super easy to make. Like a little apron with a divided big pocket. Hides under your shirt.

MB12

Hi Ladies,

Merry Christmas!! 🎉🎄🎁⛄️

I'm draining at 25-40 ml per drain still in 24 hour period.  First, surgery was on the 7th.  I go back in for 2nd surgery on the 29th and drains should come out that morning. May have one left in on the right side where my nodes are flying away, along w my nipple. (Im going to cast my nipple in gold. 😊😂) I drink a ton of water and I am exercising w arm exercises. My mobility is 90-95%.  

BethL - what did the dr tell you to do, if you retain water after drain removal? I'll ask my docs on Monday. 

BarredOwl - set up lymphema therapy appointment. TY! 🙌

1.  Does anybody know anything about mass side breast hurting more after surgery than other. My right boobie has been hurt a lot more lately. Expanders in both. 

2.  I've been wearing a prototype bra called tenderfit.  We are tweaking it as we go.  It's better than what hospitals give you and all my docs/nurses love it and are tweaking it to.  I'll check in and see when they will be ready for the market. 

Also, I made a very easy adjustable chain necklace that hooks both my drains in the shower. 😉

Happy Holidays to all😘

Cheers,

Michelle 💃

gremx003

Hi everyone, wanted to wish all of you a very good 2016 full of good surprises and beautiful miracles.

MB12, How are you feeling ??

I am done radiation therapy next Friday.....and will start Tamoxifen the following week.

I have a ton of issues with hot flashes, I was on HRT before they found the cancer, since I stop HRT i am back not sleeping at all, and hot flashes every 10 minutes. they put me on Effexor and I started to be sick and very dizzy so now back at square one. they are trying to help me to sleep and control the night sweats before I start taking the Tamoxifen.

MB12

Hi gremx003,

I am pushing through. Had my 2nd surgery on the 29th and finally having less pain each day. I am down to one drain and that comes out on Tuesday. I am putting my holistic team together amd will do IV vit c and Meyers cocktail w chemo. Also, going to use muhr and frankenfirt oils. Ignore oil spelling.

Has anybody used these or put a holistic team together?

Cheers,

Michelle