How to decidide between estrogen supressors and mastectomy?
I am 61 years old. I had a lumpectomy for DCIS in October, and the post surgery pathology report said a microinvasion was also present. I was supposed to have radiation, but 3 radiation oncologists and 20 weeks after surgery later, I still couldn't overcome the fear of radiation, so I didn't have it. Now it is too late for me to have it anyway. The two options I have left are either endocrine therapy or mastectomy. The results of my bone density tests aren't back yet, so the medical oncologist still doesn't know if she will be prescribing tamoxifan or an aromatase inhibitor. The potential side effects of both classes of drugs are pretty scary. I have had uterine fibroids in the past, so tamoxifan scares me a little more then the aromatase inhibitors. Mastectomy on the other hand, I think has it's own drawbacks. But if I had the mastectomy' I wouldn't have to take any kind of pills. How do I choose between the life changing side effects of endocrine therapy vs. the life changing effects of what amounts to amputation?
If there is anyone who has both had a mastectomy plus taken estrogen supressors, I would especially like to hear from you(because you know the effects of both therapies first hand), but any and all who have had a mastectomy, or taken antiestrogen pills I would also like to hear about your experience and your opinion of it.
Comments
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I had a mastectomy and DIEP reconstruction, also I did 4 years of AI and I don't think I will take the pill again. I was told no permanent side effects from pills I don't believe it. My mo is interested in preventing recurrence not how I feel.
The surgery was no problem at all for me, AIs I think my health suffered.
I hate cancer and the treatment.
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Meow13, which AI did you take? Did you have bone loss? If you did, was it permanent, or does it regenerate when you stop taking the pills?
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Hi Skeptic, whether you have lumpectomy or mastectomy, hormone therapy is considered advisable if your tumour is ER+ and PR+. Estrogen is still made in our adrenal glands and fat cells so even if you are post-menopausal it is prescribed if you have this kind of BC to hopefully prevent mets to other parts of the body (and the other breast). Your MO and BS will explain all this to you at your next appointment. I took Tamoxifen for two years but couldn't tolerate it and now take letrozole also known as Femara. I'm having a few side effects but so far they are tolerable. I started with very good bone density, and haven't had it retested yet. As far as mastectomy is concerned, I haven't had reconstruction and have got used to wearing a prosthesis.
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Those choices don't make any sense. Estrogen suppressors are recommended for ALL women who are estrogen positive whether they have a lumpectomy OR a mastectomy. Estrogen is not made in the breasts, it's produced by the adrenal glands (for postmenopausal women). If you are postmenopausal, you will want an aromatase inhibitor (unless your bones are very, very bad) as they generally have less severe and serious side effects than tamoxifen can have. Must people do not have bad side effects, it is just normal that the ones having trouble with it are the ones talking about it.
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My bone density scan was considered "normal" for 57 year old. I have degenerative arthritis in my neck I think was a side effect. Achy ankles still, ringing ear and my right eye is super dry. Nothing earth shattering.
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Hi, Skeptic - ruthbru is right.... it's not a choice between mastectomy and AIs. (She's our AI Cheerleader!)
When I went in for my BMX I had no idea if I would need chemo or rads, until the final path report came back. Turns out I didn't need either one.
But since we knew that my tumors were 100% ER+, I still had to take the Aromatase Inhibitors. I spent a year on Arimidex, took a two month vacation due to side effects, then spent six months on Femara.
Because the cancer was so tiny, and I had diligently lost 60 pounds of belly fat (where estrogen is still produced after menopause and hysterectomy), my MO said she felt very comfortable letting me stop the drugs.
But it wasn't a choice between MX and AIs.
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Blessings20 and ruthbru,
My medical oncologist has stated that if I had a mastectomy, she probably wouldn't prescribe anything. (she didn't bring up mastectomy, I did). I asked her which of the two would be more effective, and she said for survival rate, that both the pills, and mastectomy are equal. She didn't prescribe anything immediately after I had the lumpectomy either, because she thought the odds of potential side effects were greater then the potential benefit. But she did think I should have the radiation, which I have explained I couldn't bring myself to do. Apparently systemic therapy, which endocrine therapy is, is more for distant control, and because the cancer I had was so small, being a microinvasion, that local control is what I need. So apparently radiation and mastectomy are better local control options. We are revisiting endocrine therapy only because I did not have radiation. So, if I understand my medical oncologist correctly, I think I really do have an either/or situation. Although I do think that if a post mastectomy pathology showed a big invasive cancer in that breast that wasn't previously seen, that the opinion might change. I have an appointment with my surgeon next to get her opinion.
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I've had bilateral mastectomy and take Tamoxifen. While both have effects, neither is unmanageable.
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Skeptic - thanks for the clarification.... I had missed the part about DCIS in your initial post, and while I was perusing the board late last night, I saw some information about the difference in treatment options between DCIS and IDC diagnoses. I meant to come back here and amend my post.
One thing about oral medication is that you always have the option to stop it.
There's no turning back with a MX, just the decision to move forward with reconstruction if so desired.
You're smart to gather as much information as you can. As you've undoubtedly noticed, there's never a "one-size-fits-all" solution.
Wishing you the best.....
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I will point out that just about everyone seems to have a different experience with anti-hormonal treatments - some women do very well with tamoxifen, others don't. There are several different A/I s available. In my mind, the opportunity to fine-tune treatment with anti-hormonals is a big plus, particularly compared to mastectomy, in which case the breast is gone and there's no going back.
My inclination would be to start on an anti-hormonal and see how it goes - you may be one of those who has no issues (there are some of us out there!).
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Mastectomy is mutilating, permanent and can leave you with ongoing pain and nerve issues quite apart from the emotional aspect, lack of symmetry etc. It also is only a local solution not a systemic one.
If I had had the choice I would have taken the anti hormonals before any surgery to see what impact they have. You can always stop the pills and there are lots of things you can do to help with side effects. A micro invasión is the risk element here and a mastectomy for this seems a major trauma to your body and psyche when anti hormonals could easily deal with this AND any potential cells lurking elsewhere........
Good move to refuse radiotherapy, I so wish I had refused it but I am now damaged forever from it.
Hope this helps.......
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There are MANY of us who are ER+ who have had UMX (or BMX) are on estrogen blockers. Some of us for years and with no (or minor) SEs. I've been on Femara/letrozole for 6+ years (will be 'forever') with no issues that could be directly attributed to it. I was 63 when DXd 6 1/2 yrs ago and had arthritis in upper back and had been osteopenia for years (thanks to huge family HX on both sides) so it was a foregone conclusion that it would eventually become osteoporosis anyway. It did but it's kept under control with Fosamax/alendronate and plenty of exercise.Is the lumpectomy the only TX you've had/done? No Chemo? You mentioned refusing Rads but did you do neoadjuvant chemo to shrink it? Or adjuvant chemo? For some, it is not at all unusual to do neoadjuvant and adjuvant Chemo, a UMX/BMX, rads and estrogen blockers to get the best results.
Not being DCIS, I know very little to nothing about the TX plans or prognosis but there are others who do.
It would help for people to comment on what pertains to you if you would fill in your 'Profile' which will let them easily see what your DX is and what TXs you have done. There are so many different possibilities with TX plans with the different types and ER/PR & HER2 status among other 'things'. We are each unique and not all our individual experiences are pertinent to everyone else.
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Wanted to add: a second opinion with another MO might be a good idea for more input from a Specialist. It might be a good idea to also talk with your Surgeon.
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I would definitely try the pills before I underwent a major surgery with all the associated risks. If you are considering reconstruction, then you are talking about a long drawn out process with no guarantee of good results.
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Everyone will have their own personal opinions, but their situations may not even be relevant to your situation. If you have one mx, then some still chose tamoxifan or an Al to prevent bc in the other breast. I had a mx with no reconstruction and it was a very easy surgery for me. Absolutely no complications and no SE's. But I did not even actually have a choice due to the size of the DCIS and my small breast size. I was not recommended an estrogen suppressor due to the small advantage versus possibility of SE's. But some do very well on them. No one can make this decision for you and unless our situation exactly reflects yours, then our experiences are not all that helpful. These decisions can be gut retching and often there is no right answer. So go with all the info about your situation you can gather and then add your gut feeling and try to make the best decision for you. Good luck!
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Very well said, TB90!
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Thanks to everyone for your responses. After talking to both my medical oncologist and my surgeon, I have decided to try hormone therapy first. Then, if I have unbearable side effects, I can revisit the idea of mastectomy at that point. I don't know which drug will be prescribed yet because we're still waiting for the results of the blood tests and the bone density scan.
To Kicks, yes, lumpectomy is currently the only treatment I have had. When I look at the radio button choices for diagnosis in the profile options, I do not see what I had, which is DCIS with one focus of microinvasion. The microinvasion makes it neither stage 0 or stage 1, it is an odd in between category that even the doctors seem confused about.
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You have to go to 'My Profile' to put your info in. Or go to 'Menu'.
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Hi:
Regarding staging, although the diagnosis of "DCIS-MI" tends to have a very favorable prognosis, the presence of (node-negative) invasion means it is T1 disease, specifically T1mi, and is Stage IA. Beesie has explained it in her Layperson's post (see original post at top of page):
A Layperson's Guide to DCIS:
https://community.breastcancer.org/forum/68/topics...
'- "DCIS with a microinvasion" is a fairly common diagnosis. Although usually grouped in with DCIS, this diagnosis is actually a subset of IDC; DCIS with a microinvasion, called "DCIS-Mi", is Stage I - it is the earliest possible diagnosis of invasive cancer. By definition a microinvasion is an invasive tumor that is no larger than 1mm in size; it is called a T1mic tumor. An invasive tumor any larger than 1mm in size moves on to be a T1a tumor (or T1b, etc.) and the diagnosis is no longer DCIS-Mi but is IDC."
Beesie's information is consistent with AJCC staging information, summarized here:
https://cancerstaging.org/references-tools/quickre...
See page 1, top, center for "T" sizes, including T1mi:
T1mi Tumor ≤ 1 mm in greatest dimension
Next, see the chart / grid entitled "ANATOMIC STAGE/PROGNOSTIC GROUPS" on page 1, bottom, center. See line 2 of the chart, and the first note at right, indicating that "T1 includes T1mi", such that micro-invasive disease is considered Stage IA:
Stage IA: T1* N0 M0, where T1 includes T1mi.
BarredOwl
Age 52 at diagnosis - Synchronous bilateral breast cancer - Stage IA IDC
Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.
Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).
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I had a double Mastectomy with reconstruction. I had two of the best surgeons in my city, and everything went smoothly. My scars are uniquely placed, and they allowed me to keep my nipples since they were important to *me*.
I should eventually share my pictures. I do have some PG ones.
That is my football team logo. So they cut the lower part of my areola, and then extended the incision back towards my side. You would never know anything happened when I wear a bikini. My scars did very well, but I am a non smoker, I do not tan, and I ate 100 grams of protein every day to help healing.
A mastectomy is a deeply personal decision, but I did, and still do, feel good about it.
This was 2 weeks post expander swap, which was easy peasy.
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I had a bmx and got to skip both burn and poison. The bmx was March 7. It was and has been tough. On a side note, the post-surgical path report showed that I had multiple areas of dcis and lcis in the diagnosed breast and more in the supposedly "clear" breast. None of this showed up on any of the many scans, biopsies, etc I had after diagnosis. If I had followed the doc's advice and had radiation in the right breast, followed by hormone therapy, I would have been a sitting duck for the previously undiagnosed cancer in the left breast, not to mention the previously undiagnosed cancers in my right breast.
The bmx was tough, but I'm already beginning to feel human again. And I'm out of the box, hopefully forever. I am glad I made the decisions I made. I'm proud of myself for standing up to the docs and doing what I knew was right for me. I think I may have saved my own life.
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I chose a mastectomy because I 100% did not want radiation, and that surgery was the best bet for someone that would refuse radiation. I was node negative, but I would have declined if I was node positive.
It is not wonderful that both of your breasts ended up with involvement of malignancy, but it is wonderful that you were able to make a choice that literally saved your life.
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skeptic, I'm 48 years old, was initially diagnosed with DCIS with a possible borderline micro invasion, and I opted for a BMX. Two reasons, strong family history of BC, and I wanted to avoid radiation. IDC was found in pathology, so I'm happy I did something radical. I've been on tamoxifen since July, with very few SEs, all manageable. I also have fibroids on my uterus, and expressed concern about this to my MO before starting Tamo. He said that the benefits of Tamoxifen outweigh the chances of uterine or endometrial cancer
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