Thank you to all who replied to my last post. I had my doctor visit yesterday and shared many of your comments with her. I encourage anyone reading these posts to continue to share their experiences as it always helps other patients and perhaps their oncologist to formulate questions and opinions about future treatments. I never had surgery because I was diagnosed denovo, but I have an ulcerating wound that is getting bigger. After consideration, my onc feels it is best for me to have a mastectomy, my right breast only. I am nervous about that and will probably set the surgery up for January. I will be going to genomics clinic in the meantime for them to evaluate me for targeted therapy and also a biopsy to ensure that the cancer has not changed type. Cancer has progressed a little in the abdomen and chest area. onk wants to keep me on ibrance and fulvestrant to see what it does until we get the results back from genomics. If I have a mutation, we will do targeted therapy accordingly. Mostly I am calm, though the the upcoming surgery is making me nervous and also any time I change meds I'm a little apprehensive. And the clock is ticking, I am realizing that as options close, I may be getting closer to my demise. Not to be a downer on this site, but we all have to face that reality occasionally. I don't like to do things all at once, so every time I change meds or something new comes up I tried to take one more step to finding out about funeral arrangements. I'm trying to stay positive while at the same time consider reality, sort of a happy medium between being super positive and being a Downer. Just something I want to share with the group and get off my chest, I'm sure some of you must feel this way at times. Thank you all again for your support and the wonderful experiences you have shared that helped me and so many others.
Upcoming mastectomy and genomics - SHARE Metastatic ...
Upcoming mastectomy and genomics
We all do share your thoughts. You have our support and love.
I found that my 2 separate mastectomies really weren't bad at all. One in 2014 and the other in 2018. No pain after surgery and a quick recovery. The drains were uncomfortable but not in for long.
I pray you will recover quickly and move on to healing. You won't have to deal with that wound anymore! I had to deal with that my first time around.
Love,
Marianne
Hi Marianne, thank you for your thoughtful reply to my last post and also for this good information about the mastectomy. My one concern is I may only have someone to help me for two or maybe three days to change those drains. I am not having reconstruction, just the mastectomy. Wondering whether I will be able to change those drains by myself. I am trying to schedule this surgery for mid to late January as my friend is traveling out of town all of February. I also have a CT scan scheduled for the end of January so I don't know if this will work out because they are saying I may need to wait longer if my arms have to go over my head to hold that bar. Well the surgeon will call me back, mostly wondering whether I might be able to change those drains myself since it is only on one side. Thank you Mary Ann.
Before you leave the hospital they will show you how to empty drains. You will have no problem doing it yourself. If I did it, I'm sure you can do it.
They also may hold off on your scan til you heal.
Well if I can do it myself, then maybe I will schedule the surgery 4 after the scan. Anyway I will check on that, thank you Marian that was very helpful of you.
When I had my mastectomy I wasn’t allowed home until I was free of the drain so I would be surprised if you were allowed to do this yourself as they go quite a long way in
From what I recall I think 4-5 days with drain in
The surgery itself wasn’t as bad as I expected and I soon bounced back...I didn’t have an implant at that time either
Good luck
Barb xx
Thank you Barb, I guess I really won't know until I actually see the surgeon for my follow-up. I'm just trying to figure out who I can get to help me in the event somebody else has to do this. My close friend is traveling all of February and I'm just not sure I'm going to get all this scheduled and done before she leaves so I may have to pull a team together it's a bit tricky. I am finding myself getting tired of the whole cancer regime, making appointments, doing research, trying to find funding when I have to change meds, insurance issues, updating friends and close relatives as things change. I've sort of gotten used to it but at the same time, it is not a full-time job that I relish. I guess I am sort of stating the obvious here, again it's sort of built up and I just have to get it off my chest. I didn't realize I made a pun there, get it off my chest LOL
Insurance may cover home health care to come and empty the drain until it comes out. I definitely would ask. Explain that you live alone. Mine was in two weeks. Blessings Hannah
When I had my right mastectomy ( mine was with immediate implant reconstruction and axillary clearance) at the end of 2017 I was in hospital for 3 nights and then I had the district nurse come to visit me at home for a couple of days to empty my 2 drains . Once they were out the recovery was good . Then at the end of 2018 I had a breast reduction on the unaffected left side and this was done as a day patient while I was undertaking ibrance / Letrozole treatment . I wouldn’t worry too much about the op as you will feel much better once it is done ( just noticed we are the same age too !) . When I had a scan not long after I was unable to lift my arm right up but it was ok to have one arm down my side . Wish you well x
I can completely relate to the planning part of your post. I think it shows caring for family and friends to have some plans made. My sister had made no plans and had not made her wishes known so I just had to "make it up" and purchase a funeral package with no input. I would encourage everyone to have this done in advance regardless of your diagnosis.
I have been taking stuff to Goodwill for donations, I make a trip every time I am feeling a little blue just trying to get rid of all of the extra "stuff" I don't need to so my husband doesn't have to. That's my strange little therapy.
God bless you!
I also have a wound that won't heal. Been nursing it for 2 months now. I was so depressed because I was told it would likely never heal and my radiation doctor thought surgery wasn't an option. My new oncologist, who is very nice and efficient but way to busy and didn't offer any opinion. Just monitoring my start up on Fulvestrant/Ibrance. I was referred to a surgeon however and I am so thankful. I was worried she would say no surgery. Whoopee! She took one look and said yes she could do the surgery and it would heal after. She is not touching the lymph nodes as they are not very large. So it will be day surgery, a drain for a 4-5 days with no problem. She was very positive and I left her office feeling very jubilant. I am scheduled for Jan. 3rd, Stitches will dissolve on their own. I don't like hospitals, needles or surgery but the alternative was to awful to think about! Good idea to plan your demise to make it easy on those left behind and I understand from friends that these companies that help you are very good and comforting, like Peaceful Transitions. They look after much of the small details. You probably won't need them for quite some time but good to have in place.
Cheers, June S.
As soon as I was diagnosed with stage iv, I made all my arrangements. I never married, have no siblings, or even family. My oldest friend who lives in FL promised she would be willing to take care of things for me. My own mother died when I was four and she had no family or was not talking to them (never found any family at all for her) and nobody claimed her body when she died at 25 and Catholic Charities buried her and the baby (she died while 7 months pregnant). I did not want to leave a mess bc it costs money and although I have friends, they have elderly parents, grandkids, full time jobs.....but my friend and her husband who are in their 60s said they would take care of it. Luckily my cancer center has a volunteer attorney that comes two days a week and she was a blessing. I made a last will and testament which is a joke bc I own nothing of value but its a legal document and I made my friend the executor so that she could come in and empty my apartment and take whatever she wants. I made her my health care proxy and she knows no life-saving measure and I also told her I wanted to be cremated with no memorial service bc I don't have life insurance. I also made her payable upon death so that when it is my time, she can with a copy of her ID and a copy of my death certificate, can go and take whatever is left in my checking account. I only have a bit under $10,000 and try hard not to touch it bc I don't want it to have to cost them a penny. I wrote her a folder of numbers she would need to call social security, the pooled trust fund, my social worker at the cancer center who will help her and other things she may need to know about my rent, security, etc. Even though I am not planning to go any time soon, I sleep better at night knowing that things are taken care of. Because it would be a mess if several of my different friends tried to do something this way I gave her all the power legally and even though she lives in FL, she can immediately take my money out of my checking account in FL, fly here with her husband, rent a u-haul, and will have the legal backing to do so.
That is a good idea that you got all of that taken care of very specifically so your friend knows what to do. I'm trying to get the energy up little by little to get everything done you certainly gave me some good ideas. It sounds like you are very organized, it is always good to leave things with the feeling that you did your part to finish it so to speak. I am also single, you have certainly give me incentive to organize my affairs. I did not know you can make someone payable on death so they can access your checking account. I do have mutual fund that they can transfer on death to a family member, though I need to rethink that. All part of that full-time cancer job which none of us want.
Thanks. First I worked as a legal assistant in NY large firms for over 30 years so that is why I think of these things. Plus, I have seen what happens when a parent does not leave a will and has several adult children. Families completely stop talking over the stupidest thing like who gets the china. Yes, the POD (Payable upon Death) is very easy. I bank at Chase. I went into Brooklyn, NY and the man gave me a form and I wrote down her name, phone number and address and he signed it and he gave me two copies (one for me and one to send her). He also explained that when I died, as soon as she had a real death certificate (not a copy, but she would need to order like three originals anyway), she can even go into a Chase bank in FL, show them the paper and my original death certificate and can have everything that is in my checking account at that time even from FL. It was the easiest part of it. Took me less than 20 minutes. So this way, she does not even have to lay out her own money. Go into whatever bank you bank at, and explain you want to do a POD. Really simple and basic form. That is exactly what I feel like. Having cancer is a full-time job.
I went on Medicare in August of this year. What a horror, they expected me to day $2,437.00 a month towards my meds, plus I had to hit a deductible, I would not have been able to live. So this same lawyer help me set up a pooled trust fund. I get $2,440.00 per month. In NY as a single person I can only have $879 ($20 offset for people on SSDI) to qualify for Medicaid (I was on Medicaid before I was forced onto Medicare....they immediately started docking it in August. In NY, you have to put the excess income over the limit of $879 into a pooled trust spend down. I put in $1,565 (my excess income) and the non-profit organization, Center for Disabilities Rights in NY (CDR) handles the trust. They will not give me any of that money, but it is set up so that they have been paying my rent, my Verizon/internet bill, they charge only $20 a month for four withdrawals and I have $115.00 left for them to pay my credit card bill. (They DO NOT pay debit cards). They need a copy of your statement. So at the end of each money I have about $10 left in there (If you die, they get to keep what is left in there). You can go on vacation on your credit card, go out to dinner, buy clothes...it is my money but they will only pay the third party vendor directly. Once all the trust documents were set up and I had my first deduction go into the trust, the trust documents were sent to Medicaid. Medicaid approved it and not only do I now have full Medicaid as my secondary insurer which means whatever Medicaid does not pay, they will, I also qualified for the Medicare Savings Plan and as of this month, (which is why I added more to the fund), Medicaid is paying my Plan B of $135.50 a month Plus paying my $37.90 towards my Plan D (Rx) plan of $37.90 per month and I have been reimbursed already for the first three months when they were taking it out. I was accepted by Medicaid in October and they backtracked my Medicaid date to August when I had to go on Medicare and paid all outstanding bills, copayments and reimbursed me for what was taken out.
Believe me that was a job in itself. But now I have medicare as my primary, medicaid as my secondary insurance so whatever Medicare does not pay, Medicaid will. My copayment went from $2,437.00 for my cancer meds to $3.80 plus I get free private car service to and from all doctor visits, not just cancer. It was stressful but finally, its done and I got my medicare and medicaid card. Since I do not drive having free car service pick me up and also arrange for return trips back home is a blessing in itself.
It really is like a full-time job but now I do not have to worry. They mail out my rent check to my LL directly on a reoccurring monthly basis and I just scan them the other two bills and they pay them within 3-5 days. So far working out great. They also charge $20 a month for four withdrawals per month.
I made her a booklet with names and phone numbers and how to close down the pooled trust fund and who to call, etc. and about my security deposit so that she knows exactly what needs to be done.
The pooled trust I can only have $879 for myself. Medicaid does NOT count the money in the pooled trust. But even if I get an increase in cost of living, I have to add that amount to the trust bc I cannot get even for one month more than $879 coming to me to keep Medicaid. But I charge food on my credit card and send the bill in. If the bill is more than I have left that month in my trust (say I have $115 but my credit card bill is $300) I can only have the trust pay the $115 and I pay the rest out of my own money.
Well that is quite an interesting report you gave on the finances and Trust. It sounds like you have a very good setup now. I may be looking into that in the not-too-distant future. As treatment options Move Along, of course with targeted therapy meds are more expensive it appears. Thank you so much for sharing all of that oh, I started Medicare a few months ago and what a daunting process! I'm going to check with the cancer agency near me to find out if there is an attorney nearby who handles these things. Thank you again!
I had to do this bc I have no family and this is life-long treatment. Again, the lawyer at my cancer center told me about it. You cannot have more than $15,000 in the bank. But there are several kinds of trust. Last time I went to pick up my non-cancer meds, I had a zero copayment. So I still have medicare as my primary, but FULL medicaid as my secondary to pay whatever Medicaid does not. The best part is that they no longer deduct the $135.50 for Medicare Plan B (2020 it is going to up $144.00) and they pay my premium for my Medicare Plan D which is $37.90 and I got that money coming back into my SSDI PLUS I was reimbursed for the three months they deducted it. It was a stressful time and its all done with now and I feel so relieved. The private car service I needed as I live alone, don't drive and am far from public transportation. It was costing me $18 each way to get to cancer center for those three months bc the breast cancer is in my lungs and public transportation was too much. From start to finish, 3 months. The lawyer also volunteers two days a week at another cancer center. She estimates she does about 500 of these pooled trust a month. Medicaid realizes that people cannot live with expensive chronic conditions so they do not count what is in the pool trust fund as income. Getting it started and waiting for CDR to approve and then Medicaid to approve was the stressful time but then once you are in, Once a year Medicaid will require the yearly statement from CDR to show that I still in the pool and it will renew each year. I was getting bills right and left for three months but was told by the attorney NOT to pay them bc she knew I would be approved and that Medicaid would pay them which they did.
I am sure they have somebody but if they do not you, you can have help medicaid help you. Medicare is federal, Medicaid is state so the amount you may able to keep and still quality my differ. I am in NY. I also now have dental and vision. The very first step that I had to do was go to to Medicaid office and apply for Medicaid. Then they sent me a letter stating that I was over the income and that my excess was $________ in order to qualify. That was the first step bc the non-profit that you choose will need that letter. My cancer center recommended CDR for me to us as they do all their patients. They only charge $20 a month whereas some other pooled trusts can charge you up to $150.000 each month which is stupid bc that is like a full bill.
Thank you again aamkearns. I had no idea that this all existed and you gave such a good substantive specific report, I'm sure others on the blog will find it useful. You have given me peace of mind, I always am concerned about financing the medications. So I will start asking around in my state and see what comes up. Bless you for passing this all along.
Hi there,
I just had a right mastectomy. I was diagnosed stage 4 from the get go also in Nov 2018. We found that the breast tumors were er+ her2- but Mets were the opposite er- pr- her2+. I was on Ibrance first before we had the lung biopsy and found out it was different so then I was put on taxotere herceptin perjeta. The taxotere worked good on both but as soon as I quit the taxotere it stared growing back in my breast. Therefore I had a modified radical mastectomy on the right side on Oct 17, 2019 (almost a year after I was diagnosed). They took all my lymph nodes on that side too. I’m still recovering. I’m doing much better now but it still hurts 7 weeks out. It was outpatient and the drains were aggravating but they really aren’t the things that cause the pain. I had some nerve pain on the under side of my arm. It looked normal but it burned like h___! The area of the breast is numb feeling and still has a burn sensation some times especially when I try and stretch up my arm. I really don’t like anything to touch it. I have limited motion in that arm now but I’m working on it. I think eventually it will get back to normal. It’s no fun but you can do it!!! Anyway... now I’m only dealing with the one type and the herceptin and perjeta seem to be working. I had no idea of what to expect. I bought some stick on pockets that stuck on the inside of my pjs. They worked well holding the drains. I had 2 coming out on the right side. They are easy to empty. Take something to the hospital with you or they will just safety pin them to your wrapping. I also like the silky satin pjs instead of cotton. The cotton just seemed to “catch” on the incision place. Maybe my imagine but it gave me the “Heebee geebees”. That may be a southern expression. Haha. Wishing you a speedy recovery when you decide to have it.
PS. Some of my casual friends are saying “I would’ve taken them both off” which gets on my last nerve. My closest friends don’t. Having one off was hard enough and my doc says it’s rare for it to go to the other Breast. I’ll do that one if or when I have too.
Hugs,
Stacy
Hi Stacy, thank you for that very descriptive and helpful synopsis of your recent surgery. That is exactly what I was looking for, glad to hear your recovery is going reasonably well. It's good that you told me what to expect and did not sugarcoat it. I absolutely agree with you about not getting them both taken off if it's not necessary. Everyone has their opinion on this. I feel better knowing what's ahead, a little apprehensive but I appreciate you letting me know your experience. The part about the underarm being uncomfortable will probably bother me if I have a similar sensation . I appreciate your tips. All the best on your recovery!
I had a friend who had stage ii in one breast. She insisted that she wanted both her breasts removed. The doctor told her that that was not necessary, that the one would be enough and it was overkill. But she was so terrified that she insisted he remove both, so the doctor did so.
I know your feelings too well as I am sure many of us do. I am sorry for the progression you have; I am so glad you are doing genomic testing- I did it in sept. So glad I did. I only had 9 months on ibrance/ faslodex- had allergic reactions that were getting worse and my scans were mixed-some progression in spine, some stable. So now on infusion targeted therapy. Had to get port.
I was so upset when meds were changed. Took a while to absorb and get past it all. And yes wanted to make funeral arrangements- still haven’t done it. I know I need to.
Maybe it’s denial- don’t know. I know I hate all this with vengeance and that’s probably where my fight comes from.
Keep on going sister warriors. The change may just kill the damn beast off!!♥️♥️♥️♥️💪😍💪
May I ask what your current infusion med is, Francesca? I just finished 9 cycles of ibrance oh, so I am a bit anxious about what the genomics will show, whether there will be a mutation and perhaps targeted therapy. If not, I guess it is General chemo from there.
Now is Herceptin and perjeta. Because of my bad reactions to drugs my onc broke protocol. First treatment was just Herceptin. Second was Herceptin and perjeta- each three hours to reduce reaction risk. Today was one hour each one.
The genomic testing/liquid biopsy will show your br ca mutations. They test for about 100 mutations. They will find yours.♥️😍♥️
Hi Frances... how are you feeling? How was the liquid biopsy done?
Hi Happy New Year
The liquid biopsy is a blood test.
Right now treatment suspended because of an insurance issue. Not sad about it-I have to have monthly echo done because my heart not doing well from treatments and am on cardiac meds now.
Thanks for asking♥️♥️
Hi Wolverine -
Thank you for your post...
Regarding the surgery, as others have noted it's not that bad. Does it hurt afterwards? Yeah. But that went away pretty quickly for me and I took fistfuls of Motrin rather than the pain pills...
Regarding the funeral planning and related thoughts, I would not worry about being a "downer"....if we can't discuss that here, where can we? I feel that literally no one other than us (we?) can truly understand that aspect of our experience. Lots of people try to imagine how they would feel and react -- I certainly did, pre-dx -- but until you're there, I mean HERE, it's just speculation.
I really do admire your balanced approach. I do the same, and find that facing reality gives me a sense of peace that I think I would not have if all of my mental energy went into being in denial. Regarding planning, my sister (similarly afflicted) and I have talked about this over the years....and I actually keep a folder of ideas. I've drafted my obituary, made email notification lists (separated out by who's invited vs. just for information purposes), etc. I have a note to login and notify folks on this site, too! 
I've seen some interesting ideas over the years, e.g. "Eternal Reefs" where cremation remains are made part of a reef that will bring new undersea life. I really liked that one, but there was something in the specifics - it's almost like a cement form - that triggered my claustrophobia! But as the years have gone on, my final wishes have become very, very simple.
It's great that you're planning but hopefully you will find new treatments that put those events far in the future...
Good luck with the surgery, and the genomic testing...take care,
Lynn
I am sorry I didn’t address your fear of surgery. I had original left breast cancer in 2009. I opted for bilateral mastectomy without reconstruction. I was 55 and going to college full time for RN degree/license.
The jp drains did not bother me. Sometimes there was little flow and I had to “milk” tubing. My surgeon mandated I do wall excercise with both arms to try preventing lymphedema. That was rough but I followed his directions. When jp drains came out the left side would build with fluid and he would drain it in office - I felt nothing because nerves are cut with mastectomy. Was back in college two weeks after the surgery. Draining was for about once weekly for three weeks.
Honestly, the biopsy I had the month before was worse than the surgery/ the surgery was a breeze compared to the biopsy.
You will do well- nurses teach you what to do. If you need help just ask- we are all here for you♥️♥️♥️🙏🏻🙏🏻🙏🏻
Thank you Francesca, you brought up another point I failed to mention. My onc also wants me to have a biopsy, I forget where, but just to make sure my cancer type has not changed. I was kind of thinking that maybe they could do that at the same time as the surgery though I have not asked about it. But maybe you just answered the question, maybe that is a totally different ball game and it can't be done at the same time. But I will inquire about that. Also you said you were 55, that is my age as well. It really helps to hear what other people have been through, I guess I should prepare mentally for some pain. Thus far I have not had much pain other than mild irritation of my breast wound occasionally.
I didn’t have pain with the mastectomy. They loaded me with steroids during surgery because the dye they use I never had and I am allergic to iodine dye. I asked him to stitch me- I didn’t want staples. He was shocked- but when I had the biopsy I had staples and got infection and they hurt. I insisted on stitches and he did it.
You will be okay. Have faith. Trust in your good. ♥️♥️♥️♥️
They do pathology usually with surgery to determine br ca status. They test tissue for estrogen, progesterone, her/neu-all three tested for neg or positive status. The genomic tests go further-it goes deep into what mutations are present within br ca. Does that help? Hope I explained it sensibly🥰
I am very grateful for your post. One of the reasons I like this board is the unfiltered explanation of what this process entails. Although I feel ok now, I am under no illusions either. I know from family who’ve passed on what a challenge it can be to figure out what to do at forks in the road, and how to weigh certain risks versus the payoff, I am sincerely sorry you’re in this predicament.
A few months after I was diagnosed I visited a nearby hospice center with my sister. It was a relief seeing what a nice place it is. I want to take that burden off my husband daughter and other loved ones when the time nears. Like you, it’s actually a relief to me to get ahead of things so I’m not forced to make decisions down the road without known factors. It’s not pessimistic of either of us. It’s another way of having some control over a tough situation.
I wish you relief with wound care. Please reach out whenever you need us.
One other thing about post mastectomy. When I had mine in 2004, I didn’t realize that they lay your arm way over your head to access the surgical area. Having my arm extended that long caused a lot of soreness and some triceps numbness. Acupuncture helped with the triceps area and the numbness went away.
Another really good tip you offered up, Martha, maybe I will ask the surgeon if there's anything they can do to relieve that before the surgery. And you express your last post very well. One lady I know who I sometimes see at a Cancer Center near me has all her arrangements made and the way she put it to her relatives was, all you have to do is close the lid to the coffin everything else is done. That would be ideal.
Stay strong my Sister you got this. One thing that I have learned from this site, is that we are all fighters and determination is the key
I just saw this post even though it was 14 days ago. Everybody is different and I don't know if surgeons make a difference or not. I had a double mastectomy and tissue expanders put in at the same time. Spent one night in the hospital. The morning after surgery I raised my arms above my head and combed my hair with no pain. I had 4 drainage tubes that had to be emptied twice daily and I had to measure how much fluid I emptied with each tube. My husband helped me but I could have done it by myself. The surgery really wasn't that bad. My tubes were in for a week and then the surgeon took them out. The most frustrating part was I could only shower from the waist down. Doing that was frustrating as I had to pin up 4 drainage tubes.
As far as your thoughts on your demise, I th oh no we all probably go there. I know I do, especially when they think the medicine may have quit working and your pet scan is coming up. Mine in January so I'm having those thoughts. Is this my last Christmas with my husband. It's tough. I feel for all of us. Even though I have a relationship with the Lord and know I will be in heaven, I'm still human and want to live. Well I've kind of unloaded on your post instead of helping you. Sorry about that. You will be in my prayers.
Thank you selmac, that is amazing that you were able to put both your arms over your head after surgery and comb your hair. My perception was that it would be very limiting initially. My surgeon's office did not call me back though it has been two weeks so I have a feeling it's going to be March before I have the surgery. And yes, I think the same thing about whether this might be my last Christmas. In a way, it makes experiences more enriching when you think about things like that. I don't feel really sad right now, more of a resigned acceptance what will be will be, it doesn't mean I will die but sooner or later yes that is going to happen. That's why each time I change meds I try to do something regarding my funeral. I don't like doing things all at once. Thank you so much for your post and thoughts when the time comes I will post how my surgery goes. Happy Holidays to you!
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