Deciding which type of surgery based on other medical problems…

SoozyCue

I have ILC and LCIS in my right breast. My surgeon recommends lumpectomy with tamoxifen or similar, but because of the LCIS and my other medical issues, also agrees that a bilateral mastectomy is reasonable.

I already have 2/3 other chronic conditions. I have serious digestive problems that debilitate me on a weekly basis and about every other year are bad enough to require hospitalization so an NG tube can drain my stomach during recuperation. Because of those issues, I have grade four hemorrhoids that the colorectal surgeon is afraid to remove because insurance will not pay for the week as an inpatient that my digestive issues would require. I also have seizures every 4 to 6 weeks that once a year or so temporarily affect my legs requiring the use of a wheelchair for a week or so.

It has long been a source of frustration for me that there is no cure for any of these, no end in sight. Both mentally, because I just don't even want to think about a fourth problem hanging over my head for the rest of my life, and physically, because I am already unable to keep up with all of the appointments, tests, and everything else I need for my other three conditions around all of my downtime spent in bed due to them, I am considering a bilateral mastectomy instead of the lumpectomy. Even though the chance for recurrence is still very small with a lumpectomy and not completely eliminated with a mastectomy, I still feel like I will have closure with a mastectomy, not to mention less monitoring in future years.

If the colorectal surgeon had just performed the surgery a year ago, regardless how “brutal" and “inhumane" it would have been, I wouldn't still be dealing with tearing, pain, bleeding, and lengthy bathroom visits several times a week. I'm afraid I will feel the same way in a year or two if I only have a lumpectomy. At the same time, I am aware that they are apples and oranges, and I don't want to act irrationally on the comparison knowing that is the case.

Has anyone else faced a similar decision? What did you decide? Are you happy with that decision or do you have regrets?

dtad

SoozyCue...I have a similar situation. I do not have your specific medical issues but my health was not good when I was diagnosed. I have multiple autoimmune disease. The worst being polyneuropathy which is very painful. Ive been on disability for 15 years. My poor health definitely influenced my treatment decisions. To start I decided on a BMX mostly because of difficult screening. My ILC was not picked up on 3D mammo or U/S. Only on a pre op MRI for IDC. I also decided on a direct to implant reconstruction to avoid the TEs, fills and a second surgery. I also decided to decline anti hormone therapy because I could not afford to have any further negative impact on my QOL. I'm a little more than 3 years NED. So far so good. Please feel free to private message me if you would like to talk more. We are in a unique situation that not all understand. Good luck and keep us posted.

couragement

Dear SoozyCue,

I am very sorry that you find yourself here and in this situation. It is indeed rough going. I also have several autoimmune illness', further co-morbidities, and have been disabled and exhausted by these illness for over 15 years (and off and on since age 13). This all influenced by decisions greatly. My greatest focus is on quality of life and I must repeat this to my physicians almost every time I see them (particularly my new ones in the breast cancer world). Since I had bilateral breast cancer a double mastectomy was my best choice. I could have had a lumpectomy on one side, which I would have liked for the lesser surgery, but then I would have needed radiation, and almost all my doctors who know me well felt that radiation would have been a difficult process for me. Exactly one half of the tumor board felt that given my lymph node status I should have radiation and the other half agreed that with my health situation it might not be my best bet. So I declined radiation. You did not mention radiation so I am not sure if you were told it would be needed with a lumpectomy or not, but generally speaking it is standard of care with a lumpectomy.

I also opted for supra pectoral implants for my reconstructive option. Looking back I think I would have chosen to go flat, but here I am with some implants and I am uncomfortable, but not in a high level of pain. If I thought that not having radiation was out of the question then I would have gone flat. The supra pectoral implants (they also require a whole new paradigm for screening) were suggested as a way to avoid a lot more pain, as I generally have chronic pain. I am exactly one year out from my reconstruction and the uncomfortable feelings continue to diminish almost monthly. If this is what I am left with then I am okay with that.

Like dtad (hi dtad, nice to see you!), I also declined AIs from the outset. I was not willing to risk any further quality of life (I am extremely sensitive to medications). I am comfortable with the risk I am taking, although the acceptance did not happen overnight. I do practice time restricted feeding (fasting for over 14 hours in the evening... which has been shown to greatly reduce recurrence), as well as using other supplements, diet, and movement to support myself without AIs.

Although I was overwhelmed and unprepared for an entirely new illness, I did my best to bring all my self care, knowledge of the medical system, and knowledge of self to this new rodeo (but not my first!). I pace myself, and care for myself in ways that I did not before and interestingly my friends and family rallied more than I anticipated. I thought they would be as exhausted as I, but interestingly this was one illness they could understand, as well as fear, and they really showed up in strong ways.

Please let us know how you are doing, and feel free to ask any more questions. I will be thinking of you and wishing you peace and comfort.

May we all be well.

Icietla

Welcome, SoozyCue. I am so sorry about your breast cancer diagnosis and your other ailments.

While you are deciding on your treatment surgery type, please take a read through this linked thread here and the other content linked therein. Some Doctors do not inform their ILC patients of how sneaky ILC can be. You should know more about ILC before you decide on a surgery type.

https://community.breastcancer.org/forum/71/topics/862161?page=1

I had bilateral mastectomy surgery without reconstruction. I did not need chemotherapy, nor radiation treatment. I have not had any mammograms since. Self-examinations and clinical examinations of my chest are easier than they were with breasts.

I have been on an Aromatase Inhibitor, a daily little anti-hormonal pill, since shortly after my mastectomy surgery. It has been an easy treatment for me. It is contemplated that I will take it for The Duration or for as long as it works for me.

https://community.breastcancer.org/forum/78/topics/854403?page=1

I have limited ability to walk, very limited ability to stand in place, and limited arm use. All my abilities are variable but limited. I use mobility appliances much of the time, and I must rest most of the time.

SoozyCue

Thank you all. I have been reading these forums for hours every night, so the links above gave me tonight's reading. :-)

I have talked with my family doctor and my aunt who is a doctor. They both recommended a bilateral mastectomy and said that is what they would do in my situation. Then I started polling other family and friends, and so far it is unanimous

Further, both doctors agree that the risk of recurrence is higher than statistics say and that recurrence is often worse. They also agree that my surgeon is being too conservative and suggesting a lumpectomy only because there have recently been a lot of lawsuits because surgeons were doing too many mastectomies on IDC. They are a lot more concerned about the LCIS than my surgeon has seemed.

So, unless compelling new information comes up between now and next Friday, that is what I am planning to do. I suspect surgery will be the week the 16th based on my doctor, but I don't know if the plastic surgeon schedules as fast as my surgeon does.

I am a DDD and don't care what I wind up with as long as there is something there, so m surgeon believes that I won't need tissue expanders and they can implant smaller cup sizes in the same surgery as the mastectomy. If all goes well, I will only need ome surgery total.

Why would AIs still be needed after a BMX? Nodes?

As an added plus, my breast surgeon doesn't understand why the colorectal surgeon won't perform surgery, and they are friends, so he is going to speak with him. My husband joked to the surgeon yesterday and then my family doctor made the same joke to me today… They wish that the hemorrhoidectomy could just be performed during the same surgery. The surgeon actually would have considered it, but because of the bacteriinvolved in the hemorrhoidectomy, it would be very risky to do with new implants.

Meow13

AI drugs will protect you if cancer got passed into other areas of your body. You should talk to your doctors about that. Having a bmx won't guarantee you won't get a recurrence, having one surgery is great but I wouldn't dismiss taking AI drugs.

dtad

Meow...I agree but when you have poor QOL before your diagnosis treatment decisions are affected. Everyone has to make their own informed decisions and have piece of mind no matter what the future brings.

Meow13

Very true dtad, I am so glad I'm off the drugs feel so much better.

SoozyCue

I have no objection to taking whatever is needed. I just didn’t understand what they are needed for if the cancer is removed

Icietla

It is believed that any invasive cancer is capable of shedding circulating tumor cells (CTCs).

The mastectomy surgery is incapable of removing every little bit/speck of breast tissue. It will get all the visible breast tissue, but there will doubtless be left behind some breast tissue cells, diseased or not, all of them holographic in that they could re/produce a tumor if they are or were to become diseased.

In addition, by some chemistry means, the body can produce estrogen, even without functioning ovaries. I expect that you will be advised to take a long course (at least years) of medicine -- either to block your estrogen from (any stray) breast cancer cells, or to interfere with your body's other means of producing estrogen.

windingshores

I have many health issues including lupus, atrial fibrillation, spinal damage- others- and I take aromatase inhibitors. I am in my 4th year now and the side effects have been a little better- and were never horrible.

I am very sensitive to meds and other things too. The day I decided against chemo I bought a bottle of flavored seltzer in the cafeteria and reacted to it!  I told my oncologist that if seltzer caused problems, imagine what chemo might do.

I cannot take generic AI's. I have immediate neuro reactions- which is different from a side effect. However brand name Femara has been absolutely fine.

I understand the   QOL issue but I would try it if you can.

SoozyCue

I had digested the advice here and read more in the forums and had decided to embrace AIs. Since, though, my HER2 came back positive, so now, of course, we'll discuss chemo, etc. I'm a lot more concerned about that because of my digestive issues. Vomiting from a stomach bug often causes my system to seize up, necessitating hospitalization. I can't imagine trying to dodge that through chemo. I'm making an appointment this week to discuss everything with my PCP, who watches over all of my issues and their interaction.

Icietla

SoozyCue, is your wheelchair the typical manually-powered type? I am doubtful that you could operate that type soon after BMX surgery. I think after your drains have been removed and a few weeks have passed, you could likely operate one having a left-hand drive feature. Unless your chair is electrically powered, you will need your caregiver to operate your wheelchair or a transport chair for you if that need arises before you have recovered your arm use.

This thread linked here and the content linked therein will give you a good deal of information as to what you can expect with your surgery and recovery.

https://community.breastcancer.org/forum/71/topics/861298?page=1

SoozyCue

Thank you very much. I don't always use a wheelchair. It's only necessary a few times a year when I have a seizure bad enough to affect my legs for about a week.

MCBaker

I have peripheral neuropathy, I think it is one of the hereditary ones. A year ago I had a really difficult time with it, and ended up with a brace for my right ankle. There seemed to be no trigger for it, and I think that is when the rogue cells started stealing blood supply. My neurologist ordered an MRI from top of head to hips, and could not see anything.

So I have made my decision based on fears of further problems. Asked about direct to implant, but PS nixed it. Concern, I think, about getting equal weight, and getting insurance to pay for some transfer of fatty tissues from left to right. I had a biopsy on righty when I was 18, so perhaps when he is done I will not have to struggle with posture. My BS is also aware of my concerns about the sentinel node part of the surgery.

Surgery, of course, will be another trigger for problems, but at least I have strong hopes of avoiding chemo and/or radiation.