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Breast Cancer 2nd time and hysterectomy

Posted by tduser2023 @tduser2023, Feb 9 12:05am

Hi All, Hope all are doing good.

I am diagnosed with breast cancer in left breast in Oct last year and Mastectomy was done Nov last year. In 2019 I was first diagnosed with breast cancer right side and mastectomy was done. Both time ER/PR + and Her2-. Onco Type score was very low so no chemo on both time. I was on tamoxifen after 1st occurrence but I diagnosed again in last year so oncologist suggest to have ovaries removed.

I am 45 years and I do not have plan for kids. I am kind of decided get ovaries removed. So I went ahead and met with surgeon and he suggested to have remove uterus as well. Reason he gave is there are chances of cancer or other infections keeping uterus. I checked with oncologist on same and he also kind of inclined removing uterus (hysterectomy) along with ovaries.

I did some research and I found that removing ovaries make more sense as cancer came back 2nd for me. And I was on tamoxifen so that can play role in re-occurrence. And with ovary suppression I have to take shots every month for almost 10 years or so. And that may bring some of side effects.

Now here I am not able to make my mind on

1. Should I go ahead remove uterus as well along with overlies or keep uterus and just remove ovaries?
2. If I go with removing uterus will there be more side effects in longer term which may affect quality of life?

3. Or should I just consider Ovarian Suppression only by taking shots and not to remove any organ which I will not get back once they are removed.

As this junction of life me and my husband want quality of life instead of dealing with this again and again. It has been very ruff since 2019. So please share your experience, advise and suggestions.

God bless you all

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cjs123172 | @cjs123172 | Feb 9 5:08am

I'm on ovarian suppression and doing quite well with it. I have shots every three months. My oncologist prefers this route to surgery.

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Zebra | @californiazebra | Feb 10 1:44am

Hi @tduser2023
Sorry to hear of your cancer journey especially at your young age.

Did you have genetic testing to see if you have the BRCA 1/2 mutation putting you at higher risk for ovarian cancer? That might help with your decision.

The first time I had breast cancer at 54, I had a double mastectomy and I had my ovaries and tubes removed due to the BRCA 2 mutation. Like you, I wanted to minimize the risk of future cancer battles so I requested my uterus be removed as long as he was there. My OB/GYN wouldn’t do it without a medical reason because he said the uterus has the highest risk of bleeding and complications during a hysterectomy. Darn. That’s just one doctor’s opinion. If you ask your surgeon that question, I’d love to know his opinion on that. I wish they had removed it since I’m done with it.

Prayers for your decision and future health.

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Feb 10 10:21am

I can’t tell you what you should do, everyone’s answer to that will be a little different. The choices you make will be your own.
I can urge you to get all the information you can and maybe get a second opinion or even talk to your primary doctor, and/or your OBGYN. Just to be sure you making the best decision for you. Some people take shots with no problems, some people really hate them.
I was not given the option, I had complete hysterectomy, and I took tamoxifen for 5 years followed by anastrazole. Like you I was young, and premenopausal. I think as younger women who relapse, we need to make different decisions than someone who starts the journey later in life.
There is another conversation that came to mind, here is a link to it.
https://connect.mayoclinic.org/discussion/shot-in-ovaries/
Have you made a list of questions about this and a list of YOUR priorities in the decision process? When your cancer returns, I believe we have to make some hard decisions about living with side effects to prevent dying with cancer. In my case they have been worth every bit. Have you thought about what side effects you might tolerate and still have your quality of life?

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mulkey518 | @mulkey518 | Feb 10 2:30pm

to tduser2023. I am so sorry to hear about your cancer dilemma. I've had one myself in October 2023 when I found out that I had Angiosarcoma (a radiation induced cancer from a prior breast cancer treatment with 30 rounds of radiation). Angiosarcoma is a rare and agressive cancer. You can find my story under (mulkey@518).
I'm speaking as if I was in your situation. I always get a couple of other doctor's opionions. - I read a lot about the type of cancer I have and the potential treatment suggested. I pray a lot and ask God in the name of Jesus to help me thru what I have to go through with this cancer siagnosis. What I see here with your provided information - I certainly would remove my uterus, fallopian tubes and ovaries. I would take the Aromatase Inhibiter - Femara (Letrozole) for the next 5 years and continue with my mammograms, ultrasounds and whatever Scans that is offered. Meanwhile stay put with your support groups and get a mentor from other groups that have the exact type of cancer that you have. One support group that I joined with my cancer was
the ABCD Group (After Breast Cancer Diagnosis). I had a perfect and enjoyable mentor that I stayed with for about three (3) years. May God continue to Bless you. Mulkey@518

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1 reply
Zebra | @californiazebra | Feb 11 9:40am
In reply to @mulkey518 "to tduser2023. I am so sorry to hear about your cancer dilemma. I've had one myself..." + (show)
@mulkey518

to tduser2023. I am so sorry to hear about your cancer dilemma. I've had one myself in October 2023 when I found out that I had Angiosarcoma (a radiation induced cancer from a prior breast cancer treatment with 30 rounds of radiation). Angiosarcoma is a rare and agressive cancer. You can find my story under (mulkey@518).
I'm speaking as if I was in your situation. I always get a couple of other doctor's opionions. - I read a lot about the type of cancer I have and the potential treatment suggested. I pray a lot and ask God in the name of Jesus to help me thru what I have to go through with this cancer siagnosis. What I see here with your provided information - I certainly would remove my uterus, fallopian tubes and ovaries. I would take the Aromatase Inhibiter - Femara (Letrozole) for the next 5 years and continue with my mammograms, ultrasounds and whatever Scans that is offered. Meanwhile stay put with your support groups and get a mentor from other groups that have the exact type of cancer that you have. One support group that I joined with my cancer was
the ABCD Group (After Breast Cancer Diagnosis). I had a perfect and enjoyable mentor that I stayed with for about three (3) years. May God continue to Bless you. Mulkey@518

Jump to this post

@mulkey518
So sorry to hear about your rare cancer. How long after your radiation treatments did it appear?

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mulkey518 | @mulkey518 | Feb 11 4:03pm

I initially had cancer in 2014 -
Had a lumpectomy & 30 rounds of radiation and took Letrozole for 5 years (initially wanted my breast removed back then but doctor said it wasn’t necessary). Then in April 2023 (9 years later) I was diagnosed with ANGIOSARCOMA of the blood vessels ( which was a delayed radiation cancer). I was flabbergasted. I had a Mastectomy to remove the cancer in November 2023. Now I am 73 years old - can’t take Chemo because it’s too intense for people over 60 and we know radiation is not an option. So now I’m just being monitored which I have to take scans every 3-4 months. If I had followed my gut 9 years ago I would have insisted on having the Mastectomy done and I wouldn’t have had to take radiation back then.

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1 reply
Zebra | @californiazebra | Feb 12 1:42am
In reply to @mulkey518 "I initially had cancer in 2014 - Had a lumpectomy & 30 rounds of radiation and..." + (show)
@mulkey518

I initially had cancer in 2014 -
Had a lumpectomy & 30 rounds of radiation and took Letrozole for 5 years (initially wanted my breast removed back then but doctor said it wasn’t necessary). Then in April 2023 (9 years later) I was diagnosed with ANGIOSARCOMA of the blood vessels ( which was a delayed radiation cancer). I was flabbergasted. I had a Mastectomy to remove the cancer in November 2023. Now I am 73 years old - can’t take Chemo because it’s too intense for people over 60 and we know radiation is not an option. So now I’m just being monitored which I have to take scans every 3-4 months. If I had followed my gut 9 years ago I would have insisted on having the Mastectomy done and I wouldn’t have had to take radiation back then.

Jump to this post

@mulkey518
Thank you for responding and sharing your details. I just looked up treatments for Angiosarcoma on Mayo’s website and it lists targeted therapy and immunotherapy as possible treatments. Have you discussed those with your oncology team?

I can’t do chemo due to pre-existing neuropathy, but I’m receiving targeted therapy for 2 types of cancer. Not without side effects, but they seem to be working for the past three years.

Prayers for you.

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Mar 2 10:22am

@tduser2023 I noticed you haven’t come back to engage in this conversation. I wanted to check in with you and see how you were doing, and if you decided on surgery or not.
I know the decisions you make now have a lot of impact since you are so young, I understand as I was under 40 at my diagnosis.
Are you comfortable sharing what you decided? How that decision has worked out for you?

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