1. < Breast Cancer

Lumpectomy or mastectomy that is the dilema. Any insight would help.

Posted by mjmac @mjmac, Aug 8 5:52pm

Hello,
I have been reading posts since shortly after I was diagnosed in early June with ILC. It has been quite informative, has made me hopeful, and I am greatful that this sight and you all exist to help with the feelings of helplessness an uncertainy when diagnosed with BC.
It has taken this long to get all of my tests and I am now to the point of making a decision about treatment. My bone & PT scans were clear, 3 lymph nodes tested positive and my onco score is 11. The tumor is border line for lumpectomy and my surgeon has given me a choice of staying on Letrozole and shrinking tumor size for lumpectomy or having a L breast mastectomy. Everything in me just wants the cancer out of my body but is that the best solution? Any input on both procedures would be most helpful. Thank you!

Interested in more discussions like this? Go to the Breast Cancer Support Group.

mjmac | @mjmac | Aug 10 11:50am
In reply to @tullynut "Getting rid of the cancer is what we all want, but there is rarely any single..." + (show)
@tullynut

Getting rid of the cancer is what we all want, but there is rarely any single procedure that will give us that guarantee. Sometimes shrinking a tumor may actually be the best option because if it’s eventually removed in a smaller more contained state, there may be less likelihood of a spread. There’s no guarantee in anything and by having a mastectomy or any surgical procedure is not a guarantee that something is gone. Me that was one of the hardest parts of adjusting to my new life as a cancer patient. I am over five years post mastectomy, I continue to have lots of doctor visits as they monitor a spot on my kidney, cloudiness in my lungs that seems to be the result of radiation, and of course the breast cancer folks will continue to see me for the rest of my life. I think my outcome is a pretty good one, but I am still a cancer patient. I will always be a cancer patient. It was really hard for me to adjust to a wait and see attitude following procedures. I so much wanted something to just cut it out burn it off get rid of it. It may happen for some cancer patients, but I doubt that it happens for most or all of us. I would pay attention to what your doctors advice. Even if they ultimately are going to remove the mass, it may well be a more successful attempt. If the mass they are removing is smaller rather than larger. Talk to them about that. Talk to your family about accepting the fact that you have carefully researched and discussed with the experts the appropriate next steps and that there’s no simple just cut it out and it’ll be gone! Hope that helps

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Thank you for your honesty! I know there really is no “cut it out and be done” and that this is my life now. It’s just a scary thought to sit and wait for months to see if and how much the tumor shrinks. More research and conversations with my doctors is in order. However did you adjust to the wait and see aspect of all of this? I also am having a hard time with that. Congrats, it sounds like you are in a good place now considering.

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mjmac | @mjmac | Aug 10 11:53am
In reply to @stars7 "Getting the cancer out of your body with clear margins is the most important thing. There..." + (show)
@stars7

Getting the cancer out of your body with clear margins is the most important thing. There are many options with mastectomy. Depending on the tumor location a nipple sparing could be possible with immediate reconstruction with implants or autologous or a combination. You can also have both breasts removed and reconstruction to have symmetry or have the other breast modified for symmetry later. A lumpectomy may leave you with an odd shape, it depends on how much tissue they take and how you heal. Also if you need radiation that will compromise the skin for later surgeries.
I had invasive ductal carcinoma and I opted for lumpectomy, chemo and radiation. If I could go back in time, I would have the bilateral mastectomy and reconstruction with implants. I went against the recommended big surgery because it scared me at the time. My surgeon is still recommending we go back and do the bilateral but now they have to graft from my back muscle (lat) and possibly can’t save the left nipple. I had residual cancer show up on my PET scan and that’s why she wants to go back and remove all the breast tissue.
Way your options carefully and talk to your surgeons and oncologist.

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Good luck with your journey.

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mjmac | @mjmac | Aug 10 11:59am
In reply to @katgob "I joined bc.org after i had started treatment. For me, I was not given an AI..." + (show)
@katgob

I joined bc.org after i had started treatment. For me, I was not given an AI to shrink my tumor, but rather Chemo. It was 5cm. After this decision was made, I got my genetic test back. I carried the BRCA2 mutation. The chemo was supposed to shrink the tumor. It did, but only by 1/2. The margin needed to remove it would still make a lumpectomy a no go. I need to add that not being large breasted, I never thought breast cancer would happen. Skin cancer yes. This was from 2021. I know today that getting info from bc.org and Mayo provided me with the courage to ask questions and how to be an advocate for myself. I had 3 sentinel nodes with no cancer. A result that is different among many of us.
There is so much research out there now. More knowledge will give more acceptance for your own choice.

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Yes, knowledge is power.
Thank you for reminding me of that. Best wishes to you on your journey.

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drummergirl | @drummergirl | Aug 10 12:35pm

MJ-
I had triple negative breast cancer, no lymph node involvement and the ATM gene.
If you have not been tested, I recommend it. I had no family history. My sister did not have it, but my daughter does, which means she can be tested every 6 months.
I elected a double mastectomy even tho I was only diagnosed in my left. One of the things I found out post surgery that no medical person ever mentioned is the thing call lymphovascular invasion. As I understand it, this indicates that there were cells that were starting to travel. My oncologist later said that the mastectomy was a good choice as it removes all that tissue. I also had some microscopic DCIS in the tissue and now that is all gone. My point is that you can’t be certain as to what is going on in there. I also did not reconstruct and I believe that I can more readily feel any changes. I wear a very good comfortable prosthesis and feel just fine about it.

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hopeful2024 | @hopeful2024 | Aug 10 5:02pm

Hello courageous,brave,woman
Keep driving the bus!
I had a double mastectomy last October and I am happy I made that choice!
My mother at my exact age had a
Mastectomy on right breast
5 years master the left same exact cancer !!!
I am flat as a pancake and am grateful no further treatment !!
Sail on my friend do what is peaceful to you
We are your team and are with you !!
Hopeful 2024

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eaglewings22 | @eaglewings22 | Aug 11 11:20am

You have lots of good info from many here. I'll add my experience and hope that you will come to a decision that seems right to you. I remember being in your situation and going back and forth many times! My initial strong response to my diagnosis was to have a total mastectomy, which my medical team did not think was necessary or advisable. It took the surgeon talking to me a long time to help me understand that the mastectomy was not more protective of future recurrences, and that a smaller surgery was more likely to minimize infection/additional side effects. I'm grateful they were so straightforward with me and cited so much research to back their recommendations to help me settle down about it!

I was dx with ILC (4.2 cm), Stage 1, Grade 1, sentinel node plus 3 nodes all negative. I decided to have a lumpectomy using oncoplasty (breast surgeon plus plastic surgeon). My surgical breast tissue was "fluffed up" to fill in the lumpectomy site via a small incision around half of my nipple, and then a breast lift using the same incision was done. The plastic surgeon did a breast lift for symmetry on the opposite breast, using the same type of incision. I am very happy with the outcome and after a year and a half, the scars are barely visible. I received 15 radiation treatments, plus 7 boosts of the tumor bed, which over time did make the radiated breast slightly smaller...

I was treated at MD Anderson in Houston and very happy with my medical team. Sending love and wishes for increased clarity to my ILC sister! Good luck!

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1 reply
zeerj | @zeerj | Aug 11 11:39am
In reply to @tullynut "Getting rid of the cancer is what we all want, but there is rarely any single..." + (show)
@tullynut

Getting rid of the cancer is what we all want, but there is rarely any single procedure that will give us that guarantee. Sometimes shrinking a tumor may actually be the best option because if it’s eventually removed in a smaller more contained state, there may be less likelihood of a spread. There’s no guarantee in anything and by having a mastectomy or any surgical procedure is not a guarantee that something is gone. Me that was one of the hardest parts of adjusting to my new life as a cancer patient. I am over five years post mastectomy, I continue to have lots of doctor visits as they monitor a spot on my kidney, cloudiness in my lungs that seems to be the result of radiation, and of course the breast cancer folks will continue to see me for the rest of my life. I think my outcome is a pretty good one, but I am still a cancer patient. I will always be a cancer patient. It was really hard for me to adjust to a wait and see attitude following procedures. I so much wanted something to just cut it out burn it off get rid of it. It may happen for some cancer patients, but I doubt that it happens for most or all of us. I would pay attention to what your doctors advice. Even if they ultimately are going to remove the mass, it may well be a more successful attempt. If the mass they are removing is smaller rather than larger. Talk to them about that. Talk to your family about accepting the fact that you have carefully researched and discussed with the experts the appropriate next steps and that there’s no simple just cut it out and it’ll be gone! Hope that helps

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Can you tell me about the cloudiness on your lungs? I’ve been dealing with that for over 18months now. It was a cycle of on prednisone, taper down, hospitalized couple times when I get down to 5mg. My pulmonologist added antibiotics with the last round. My xray was all clear when I went down to 1mg. When I stopped, cloudiness came back. Lab work is fine. Staying off prednisone for now as I don’t have symptoms. I had mastectomy, radiation. Have expanders and still waiting to remove them due to the prednisone. What’s your treatment plan for your lungs?

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1 reply
gooch34 | @gooch34 | Aug 11 11:40am

Hi, in April 2024 I had a right breast mastectomy for stage 0 DCIS. I have issues with AFib & diabetes, so decided to just remove it & I wouldn't need chemo or radiation treatments. They actually found a stage 1 inside the breast tissue that was removed & said good thing I opted for the mastectomy, which was my choice& went flat. Im 70 yrs. & rather be safe. Now I'm having to take Anastrozole for 5yrs. I started a few weeks ago & am having lower back pain, sciatic with my leg actually giving out pain & am thinking of stopping the medication. I'm reading to many side effects!! I also had a full right knee replacement surgery 2 months ago, just after the mastectomy. What should I do about this Anastrozole for cancer? I'm tired & scared of all the side effects that's a possibility of getting.

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2 replies
tullynut | @tullynut | Aug 11 11:50am
In reply to @zeerj "Can you tell me about the cloudiness on your lungs? I’ve been dealing with that for..." + (show)
@zeerj

Can you tell me about the cloudiness on your lungs? I’ve been dealing with that for over 18months now. It was a cycle of on prednisone, taper down, hospitalized couple times when I get down to 5mg. My pulmonologist added antibiotics with the last round. My xray was all clear when I went down to 1mg. When I stopped, cloudiness came back. Lab work is fine. Staying off prednisone for now as I don’t have symptoms. I had mastectomy, radiation. Have expanders and still waiting to remove them due to the prednisone. What’s your treatment plan for your lungs?

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It has always been attributed to radiation and showed up on my fist scan after chemo/radiation ended. At first they said it would go away. It didn’t, however I have good lung function, no cough. So I don’t need to see pulmonologist unless I develop symptoms For a time they were suspecting radiation induced lung injury but no longer. I found one study of breast cancer patients who had a lung scan sometime after radiation. They found a group like me who looked like they had RILI but were otherwise asymptomatic.

If you have pulmonary symptoms the pulmonologist should have an idea if radiation induced lung ng injury is at hand If you had pulmonologist nary symptoms before, radiation may not be a factor?

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2 replies
hopeful2024 | @hopeful2024 | Aug 11 12:16pm
In reply to @meg55 "I’m sorry you are going through this… it’s scary for sure. So nice to have this..." + (show)
@meg55

I’m sorry you are going through this… it’s scary for sure. So nice to have this connection with others!
I was diagnosed with right breast DCIS in Feb. No lymph node involvement . A little over 3cm and grade3. I had a lumpectomy but did not get clear margins and they found a little invasive ( which they said was common) so they scheduled another lumpectomy. That one did not get a clear margin on one side! I figured 3rd time’s the charm! Nope. Third lumpectomy, still one unclear margin and also some lobular ( LCIS). I also developed a Seroma and have to pack my incision with gauze daily. I decided this is enough…as I have dense breast tissue and I had a questionable area on my left side a while back as well. It biopsied ok but made me nervous. So now I’m scheduled for a bilateral mastectomy in October. I’ve decided to go flat as I’m 55 and the idea is a little “ freeing” to me. I’ve know several women with implant issues and I’ve already had 3 surgeries, so that’s not for me. Others I know who’ve had DCIS said “ oh it will be one and done!” in the beginning of this process…what I’ve learned is not to expect anything but hope for the best, since you just don’t know. Every step of the way is different. I’m hoping this decision will give me peace of mind in the future and though it will be an emotional transition, I feel sure it’s the right one for me.

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Wishing a positive journey !
I also have had both removed and am flat and happy !
I pray for you to have the same result of cancer free!!
Hopeful 2024

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