January 2016 Surgeries
Comments
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Hi DecisionFreak. I'm so sorry to hear about your mother's decline. I have a lot of friends caring for their elderly parents, or trying to, and it is very rough going even in the best of circumstances. I hope she will be eligible for some home health care to take some of the burden off you. It's good news about your surgery continuing to heal, and about your cyst getting smaller. All you can do is what you're already doing - just take one day at a time and try not to let worry take over. Rest as much as you need to - the house will last a little longer and when you are in a better place physically you'll deal with it. Fatigue and worry is what makes our lives miserable. Take it easy on yourself!
Bjsmiller, hope you are doing okay with the arimidex!
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DecisionFreak - I am sorry to hear about your mother's prognosis! She is very lucky to have you looking out for her, but I hope that you are able to get home health care as Moondust suggested. Hospice is another option. My mother passed away a few years ago and was able to be in her own home with the help of hospice nurses. She spent many of her working years fighting for the rights of elderly in rural communities where services were limited. If you are unsure of where to find services for your mother, the Office for the Aging is a great place to start. I'm not sure what state you are in, but if you PM me I would be honored to help you locate services for your mother.
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Popping in to say hello. I have been spending my time on the March chemo boards when I can. I went back to work full-time on 3/7, 6 weeks out from my right mastectomy. I just started chemo yesterday. I'm not sure how working full-time is going to go with every other week chemo treatments.
Grandma3x, great news on the oncotype!
Decisionfreak, sorry to hear about hour mom. Sending hugs!
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Hi, grandma3X, thank you for offering to assist. We have had home health for about a year. We have been through four home health agencies since mother's diagnosis of Stage IV breast cancer. The only good home health nurse we had apparently never told the family doctor about my mother's complaints about her breathing problems. My mother's X-Rays show scar tissue indicating the problem was long-running so her doctor and her home health nurse did not detect pneumonia or another lung problem. We will have home health again when my Mom returns, though it is a huge load of work to keep the house in order because of my arthritis and fibromyalgia.
I have gone through an analytical computer program with the local branch of the Council on Aging to determine our eligibility for help. We are eligible for very little assistance.
My mother is becoming a little bit more alert now. She thinks she is going to walk again but my brother does not want to upset her by explaining that the rehab facility can probably only get her to wheelchair status before she leaves. The extra 50 pounds in water weight is going to make things difficult. If we get hospice now, my mother will not be allowed to have any physical or occupational therapy at home. We are not going to have hospice yet to allow our Mom to have home PT and OT.
The bath aide from our current home health agency violated my mother's HIPPA rights in a most upsetting and flagrant manner. We did not allow her in the house because the violation had the potential to cause serious problems for my Mom. We can change home health agencies again, but this agency has done a better job than the other three. Three of the agencies failed to detect serious and potentially life-threatening health problems that my mother was having.
We will provide most of the care for my mother unless we place her in home hospice. Medicare is rolling out a new program that allows patients with terminal illnesses to receive a wide range of services without being in hospice. This program permits aggressive or palliative chemotherapy and perhaps other services such at PT but I don't know if it is available in our county yet.
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Hello to Balthus and DecisionFreak, and anyone else who kept losing posts: that has been fixed!
Hi Mominator,
We just wanted to update you that the lost post issue you were seeing should be resolved now -- the tech team found a bug they were able to squash, so all should be well. Please let us know if you continue to see any issues!
--The Mods.
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Thanks, Mominator!
I went in for my post-op (NAC excision) on Tues. Everything is healing well. I also met with a cancer nutritionist, which turned out to be kind of a waste of time. She normally treats clients who are going through chemo or rads, or need help with weight loss, so she was at a loss as to what to do with me. I had specific questions that I feel she should have known the answer to, like should I take vit. K2 with my Vit. D3 supplement (which my PCP advised me to take). Every question I had, she just googled it and then read whatever website popped up. I could have done that on my own
Anyway, I'm looking forward to having my prophylactic MX done on the right side in May, and then maybe can get on with my life. The BS said she would also do the SLN biopsy, even though it's a prophylactic MX and there is no sign of cancer (I think I mentioned this in one of my earlier posts). I keep going back and forth about whether I really want the lymph node taken. On one hand, it may not be necessary, but then if they do find cancer in the good breast, they would have to go back and take out the SLN. I'd like to avoid the additional surgery if possible.
Happy St. Patrick's Day!
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Grandma3X, I would vote for not taking the node! It's more chance of LE and more putting up with discomfort when healing. My SLN scar was the most uncomfortable place after my lumpectomy. My shoulder still grumbles when I lift my arm completely over my head. If they don't find cancer then you won't be missing the node I know it's a tough decision, but that's what I would do.
Not good about the nutritionist, but unfortunately I think she is typical. We are having a lively vitamin/mineral discussion on the Winter Rads forum because doctors give all kinds of conflicting advice. I'm still confused about whether I should be taking Vit D during rads. My doctor did not mention to not take it, yet it is an anti-oxidant and is especially good at helping DNA repair.
Happy St Patty's to you too!
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Hi Grandma3X, since you have been diagnosed with ILC, the chance of finding BC in your other breast is much higher than someone diagnosed with IDC. Given that, I can see why your BS is suggesting a SLNB. Once your breast has been removed, if cancer is suspected in the future, they can't do a SLNB anymore, only an ALND which is much more invasive. I don't have the option of a SLNB because the cancer was found in my lymph system already, so it's ALND for me.
All the best,
Jacklin
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Grandmax3- hmmm... Decisions, decisions...hate all these decisions! My SLN disection went well for me with my MX, so I think I personally would do to avoid a possible second surgery.
My nutritionist must have gone to school with yours. I paid $26 out of pocket to sit and educate her on Vitamin D and Iodine supplements. 😳
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Just wanted to do a quick check in and see how everyone is doing and to share my oncotype score with my January sisters. I could tell it was good when my breast navigator called, she has such a giveaway voice! I got lucky "13"! One less hurdle on this road. I'm healing well since the artery repair, back to work.
Take care all of you
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GREAT news Merymete!!
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Congratulations, Merymete!
Nolagirl - my nutritionist graduated from the same university I teach at (different disciplines!). My sister is also a registered dietitian at another hospital and works with kidney transplant patients. I think she is much more knowledgeable about cancer nutrition than the woman I saw, even though it's not her specialty.
The SLN biopsy is a hard decision. Jacklin, I wanted my BS to localize the SLN before my MX so that she would be able to find it later if necessary, but you're right about the higher probability of finding ILC in the other breast. I would like to avoid it as Moondust noted because it was the most painful part of my recovery. However, the thought of having additional surgery is enough to make me go through with the SLN dissection anyway. I only had 1 node removed during my first surgery and no LE (so far). Anyway, I do have another 6 weeks to come to a decision.
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I thiink that would be a good compromise, Grandma3X. If your BS could mark the sentinel node so that it could be removed later, it would solve the problem. I don't understand very much about mastectomy. Once the breast tissue is gone, would the nodes drain the chest wall area in the same manner, so that the sentinel node would still be the sentinel node? There are some breast surgeon podcasts I found that I will listen to - maybe they discuss this issue in one of them.
The podcasts can be found here. Anyone interested, look for the Breast Cancer Update series, and Breast Cancer Update for Surgeons on that page. He interviews different oncologists and surgeons, and they discuss various topics and cases.
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Moondust - they would have to localize the SLN before mastectomy because the lymph drainage would be altered by MX. I would have the lymph node injection, then they would find the SLN and mark it with a biopsy clip or by non-dissolveable stitch during surgery so that they can go back later and remove it. This may still require an incision (if they use a non-dissolveable stitch) and further surgery if they find cancer in the breast tissue. With ILC, I have about 15-30% chance of having cancer in the other breast, so I'm leaning toward having the SLN biopsy during surgery to avoid the possibility of having more surgery soon after the MX. Thanks for the link to the podcasts! I've listened to a few and found them helpful.
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GREAT news Merymete!!
Grandma3x: tough decision on the SLN! I remember one of the other ladies posted a link to marking the SN prior to or during MX, leaving the option to go back for the biopsy later. Seems like the marker was different than the stitch or clip.
Since you have already had one SLN removed you know how much recovery that will be vs how much you want to avoid the surgery.
I'm sure you'll be thinking this one thoroughly over the next six weeks.
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Grandma3X: decisions, decisions......that's a wonderful idea to have your BS mark the SLN. And, for sure we'd like to avoid any and all 'additional' surgeries at all times. You are wise in your thoughts. Thankfully you have some more time to reach your final decision. Much strength you as work that through and my thoughts are with you. Keep us posted, ok? I'd be interested to learn what your final decision is.
Jacklin
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Moondust: Thank you so much for posting the link to these podcasts, they're excellent and I look forward to listening to more of them. I do appreciate you posting this. Have an excellent day,
Jacklin
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You are most welcome, Jacklin I have listened to some of them more than once - so informative.
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So, everybody, my incisions have been slow to heal but I am getting a little more energy. I have had to delay meeting with the medical oncologist due to my mother's health status. I am supposed to meet with the MO in April at the comprehensive cancer care treatment center where I has my surgery to discuss AI drugs. I have great bones and I don't want them to dissolve. I need significant and somewhat expensive dental work (on my limited disability income) if I am going to have bone drugs injections, but there may be one bone drug that does not cause jaw necrosis that I could take for two years while I get the dental work done. It is all so complicated. Yes, decisions, decisions, decisions. I think I picked the right nickname when I joined BCO.
My mother who has Stage IV breast cancer and who endured lung collapse in February is 100 percent dependant on other people to survive. She cannot even walk now. It requires a Hoyer lift to get my mother out of bed and hoisted up in a sling and placed into a wheelchair. With her agreement, my brother and I have decided to place my mother in home hospice. She needs so much equipment and requires so much space that I am clearing out the clutter in the living room that will serve as her place of care and comfort until she passes. It has been an agonizing decision to choose home hospice, and I have cried buckets of tears. I do not visualize my mother recovering from her stay in the acute care hospital where she declined rapidly. We will give her all the love and support that we can, and she will be under the care of an interdisciplinary hospice team with her primary care physician providing oversight of her medical care. It is very unlikely that my mother will be well enough to receive chemotherapy but miracles can happen.
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DecisionFreak, I'm so sorry for all that you are going through. I do believe that once your mother is home and hospice is involved, and she is as comfortable as can be and surrounded by her home and family and love, you and she both will feel very good about your decision. Hang in there, my heart is with you.
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Thank you, BlueHeron. I appreciate your vote of confidence. I forgot to mention that the home hospice company can arrange for five days of caregiver respite at a facility if I or my brother start getting caregiver burnout!
Grandma3X, you are clearly a woman of considerable intelligence but you do face a difficult decision. If I were in your shoes, I would consider whether or not I would wake up in the night and worry in my dark hours about having breast cancer in the good breast if I did not have the SLN biopsy. Since I did not even qualify for radiation after my second surgery, I have locked up my worries about recurrence or new cancers and thrown away the key. I will try the AI drugs if I can get the bone issues squared away, and then I will keep living. I have a very high tolerance for risk, but most women are risk averse. It really does come down to your personal level of comfort, I believe. I think that you will have a flash of insight or hear that voice inside you that tells you what is best that will help you make this tough decision.
Speaking of risk, I would have had a nervous break down if I had known ahead of time that the plastic surgeon would have to do flap surgery after the partial mastectomy. I am about six weeks out of surgery, and it appears that the tissue is alive and starting to blend into my right my right breast. I didn't get obsessive, but I did look at the breasts every two or three days for signs of tissue death. Ugh. This is not the kind of thing that I can discuss with anyone I know except those on this site that understand the fears that come after breast surgery.
My brother and I have been watching Midsomer Murders, the British TV series now available on Netflix, for stress relief. There is something cathartic about good ole murder mysteries, and it is a great way to distract my mind. We have also been watching Doc Martin.
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Just been prescribed Dronabinol/Marinol. I've lost almost 30 pounds since starting chemo in January. Vomiting, nausea and diarrhea have been my worst side effects. Anyone have experience with this drug?
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mltdd, I'm so sorry to hear of your misery with the side effects of your chemo.
I hope you are getting the support you need. Although many ladies here are doing chemo, you may get more responses in the
Forum: Chemotherapy - Before, During, and After
https://community.breastcancer.org/forum/69
Best wishes on your journey,
Mominator
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Hi virginia123, I see you had the Biozorb inserted with your lumpectomy. I had my lumpectomy this past Friday 4/8/2016 with Biozorb inserted as well. I do feel some discomfort where I believe the Biozorb is located but it really depends on my movement at this point. I'm still sore in general. Did you notice any improvement with Bizorb pain since your initial post about it? Currently waiting for test results and doing a ton of praying! Thanks for any information you can share
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Hello January sisters. Hope everyone is doing well. My 3-month anniversary was yesterday. Home sick with the crud going around but otherwise doing OK I guess. Good days and not so good ones. It's sure been a process.
Still seeing a PT for ROM and cording issues. Not happy with my lumpy nasty bits & dog ear left but will decide later what if anything to do about those. Not wearing prothesis yet. Too much overall chest tightness and soreness. Stocked up on $9.99 Genie bras. Freaked out on my first flight last month but opted not to wear sleeves as I have no signs yet of LE.
Joined a fitness center & bought a Fitbit & determined to get 30+ pounds and my middle off of me this year. Have lost 10 pounds already. Everyone who sees me says I look great & am doing well. My scars are healing well but I'd like to find something that will make the scars less red. Anyone come across anything yet.
Life is pretty much to what it was pre-op in terms of work, life, family, etc. I don't see my BS or MO until end of July & found my own PT as as I hated the one at the center where my doctors are.
Just wanted to say hello!
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Hello Balthus,
It is great to hear that you are getting back to pre-op norm. It is hard to believe I hit my 3 month anniversary today. Looking back to the days of surgery it seemed that life would never be normal again but now I can see the light. I am a week post op from exchange surgery and feeling so much better and more like my "old" self if that is possible. I am returning to work next week after being out since January surgery. I am a little nervous but also excited to start back to my old routine. I am so thankful I was able to take this time off because I needed the time mentally to wrap my head around everything that has happened in the past year. I do not have to go back to the bs and mo till July so I guess we are on the same follow up schedule.
I was back to walking almost two miles prior to my exchange surgery and hoping to be starting back to walking after next Tuesdays follow up appointment.
Sending out good thoughts to everyone and hoping that spring has finally sprung here in NJ . It figures that the weather is finally supposed to warm up once I go back to work.
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Welcome, jws! Please keep us posted on your progress and test results. We're thinking of you!
--The Mods
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Jr114 and Balthus - good to hear you from you! It is my 3 month anniversary today and I was just thinking about our surgery group and wondering how things were going. I know some have moved on to the radiation and chemo groups. I hope they are doing well. I started on AIs a month ago and so far so good. I have always had some joint pain so it's hard to say whether the pain is caused by the meds or just my everyday background pain
It usually dissipates after I've been up and moving for a few minutes, so no real complaints. I am scheduled for a PMX of my right side next month. Anxious to get it over with, but not nearly as freaked out about the whole thing as I was for my last MX!Balthus - I also use a Fitbit - it's a good way to motivate myself to get up and move. Like you, I have dropped 10+ pounds since surgery. My eating habits have totally changed- I'm trying to eat a lot more fruits and veggies and I'm staying away from bread and sweets (so hard to do!!). That, along with the walking is melting the pounds away.
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Hi everyone, Just checking in since I've haven't in a while. My husband and I have been doing some traveling in between my fills. It sure has been nice to not worry about myself and insurance crap while traveling. I'm thankfully back on track and am looking forward to my exchange surgery scheduled on May 6.
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Gardengirls -- glad to hear you are doing good and getting some traveling in. After my last fill and before my exchange surgery my husband took me to Myrtle Beach for a couple days. Our first alone vacation since having kids (which was along time coming since they are19 & 15). It was great for me to just not have to think about cancer, surgeries etc.
Grandma3x - glad to hear from you. I am hoping there is a lot less anxiety with your surgery in May. Glad to hear the ai aren't giving you too many se.
I hope everyone else in our group is doing well
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