Anyone else w/no treatment after mastectomy?

cathyp

Hi all,
Just wondering if anyone else fits my profile? I most likely got my breast cancer from radiation treatments I received from treatment for Hodgkins Disease. BC was stage 1, node negative, ER positive. Because I had previous radiation and chemo for the Hodgkins, they were not an option for me. I had an Oncotype score of 8 based on taking tamoxifen. I had to stop Tamoxifen after gyno issues surfaced 2 mos later. Recentl, I most possibly suffered a TIA also....SO...the only "treatment" I've has is a double mastectomy. BC was was invasive in one and LCIS in the other breast (thank God I had the double!) ANyone else w/no other treatment? It's a frightening thing!

crselby

mastectomy with no further treatment
My very dear friend had a diagnosis of Ductal carcinoma in situ (DCIS) and lobular carcinoma. There was something found in each breast so she had a double mastectomy at age 54. That was over a year ago. She had expanders put in immediately and loves her new chest. Her doctors have not followed up on her at all. She believes she does not need any further mammograms or "they would have told her so". She had no chemo, no rads, etc. In fact, the path report found no evidence of cancer. I'm very confused by what she tells me... she is a smart lady so the misunderstanding must be on my end. But she has had no follow up of any kind. I doubt that this helps you, but...
~~Connie~~

helen e

Cathy
I had a mast. w/recon. just recently but will not need rads. or chemo. (stage 1, my onco score was 14, neg. nodes, pos. ER) I will however, be on Tamoxifen. I know that there's someone else here who doesn't have to have any chemo or rads either. My tumor was invasive but didn't spread and then found out my margins weren't clear and had DCIS throughout so had to go back and take my breast. I was worried but am also relieved that I don't have to go through anymore treatments. If you want to talk or have more ?'s pm me.

cathyp

helen e said:

Cathy
I had a mast. w/recon. just recently but will not need rads. or chemo. (stage 1, my onco score was 14, neg. nodes, pos. ER) I will however, be on Tamoxifen. I know that there's someone else here who doesn't have to have any chemo or rads either. My tumor was invasive but didn't spread and then found out my margins weren't clear and had DCIS throughout so had to go back and take my breast. I was worried but am also relieved that I don't have to go through anymore treatments. If you want to talk or have more ?'s pm me.

Thanks for the info
Thanks, it's a strange feeling, knowing that I'm in a minority who really can't have any other treatment. Great to hear from others. It may seem like a relief not to go through anymore treatments but it's always in the back of your mind, when or will the BC showup again? Reconstruction was strongly discouraged for me because of my previous rad treatment and also because it is another major surgery. I get tired of wearing the fake ones, sometimes i go flat chested!

jikaras

cathyp said:

Thanks for the info
Thanks, it's a strange feeling, knowing that I'm in a minority who really can't have any other treatment. Great to hear from others. It may seem like a relief not to go through anymore treatments but it's always in the back of your mind, when or will the BC showup again? Reconstruction was strongly discouraged for me because of my previous rad treatment and also because it is another major surgery. I get tired of wearing the fake ones, sometimes i go flat chested!

DCIS
Cathy, I had a bilateral mastectomy due to DCIS in both breasts. I didn't need any radiation, nor any chemo.

I did have the reconstruction though. The jury is still out if I really enjoy having my implants. I sometimes wish that I could just not wear any undergarments.....but for now, I've got to.

I ALWAYS think that the cancer is going to show up somewhere else, as I think it is for everyone else on this site. I still cringe when I have to follow-up with my surgeon. She has me coming back once a year for the next 5 years just for a breast check; so I'm in good hands there, as she's very thorough....

Jill

Calleen

jikaras said:

DCIS
Cathy, I had a bilateral mastectomy due to DCIS in both breasts. I didn't need any radiation, nor any chemo.

I did have the reconstruction though. The jury is still out if I really enjoy having my implants. I sometimes wish that I could just not wear any undergarments.....but for now, I've got to.

I ALWAYS think that the cancer is going to show up somewhere else, as I think it is for everyone else on this site. I still cringe when I have to follow-up with my surgeon. She has me coming back once a year for the next 5 years just for a breast check; so I'm in good hands there, as she's very thorough....

Jill

I had
a double masectomy July 29th with immediate reconstruction using my belly fat.. and have had no further treatments or follow ups. My oncotype score was 10 so no chemo. and I have chosen not to take Tamoxifen.. I know I need to do my follow ups but was wanting to put this year behind me and start over fresh..

mom62

Treatment
Hi,

I had a radical masectomy in 2003 with 4 rounds of A/C and 4 of Taxol. I then was on Arimidex (sp?) and when I got my period back was put on Tamoxafin. I was on it for 5 years and had a recurrance with the bc attached to my sternum and ribs on the same side. I had surgery again and just finished 6 rounds of cytoxan and taxotere. I know you can't have radiation twice in the same sight but didn't know you couldn't have chemo again. Are you sure that is the case with the chemo? Just asking as non-hogkins is usually treated with retuxin (sp?) and I can't imagine you can't have a different chemo if necessary.

kimber10

mom62 said:

Treatment
Hi,

I had a radical masectomy in 2003 with 4 rounds of A/C and 4 of Taxol. I then was on Arimidex (sp?) and when I got my period back was put on Tamoxafin. I was on it for 5 years and had a recurrance with the bc attached to my sternum and ribs on the same side. I had surgery again and just finished 6 rounds of cytoxan and taxotere. I know you can't have radiation twice in the same sight but didn't know you couldn't have chemo again. Are you sure that is the case with the chemo? Just asking as non-hogkins is usually treated with retuxin (sp?) and I can't imagine you can't have a different chemo if necessary.

I had a bilat mastectomy in
I had a bilat mastectomy in july no reconstuction no radiation no chemo I do take tamoxifin and see my oncologist every 3 months

cathyp

mom62 said:

Treatment
Hi,

I had a radical masectomy in 2003 with 4 rounds of A/C and 4 of Taxol. I then was on Arimidex (sp?) and when I got my period back was put on Tamoxafin. I was on it for 5 years and had a recurrance with the bc attached to my sternum and ribs on the same side. I had surgery again and just finished 6 rounds of cytoxan and taxotere. I know you can't have radiation twice in the same sight but didn't know you couldn't have chemo again. Are you sure that is the case with the chemo? Just asking as non-hogkins is usually treated with retuxin (sp?) and I can't imagine you can't have a different chemo if necessary.

no chemo again
the chemo used for my Hodgkins was ABVD which consists of drugs that are harsh to your heart and pulmonary functions. If I did proceed w/some sort of chemo for the BC, it would have reduced my reoccurence rate by 1-2%. I decided, it wasn't worth it. As a Hodgkins survivor, we have a lot of late effects of treatment to deal with that show up 10-15-20 yrs out from treatment.
Thanks for all your responses!

Joy B

cathyp said:

no chemo again
the chemo used for my Hodgkins was ABVD which consists of drugs that are harsh to your heart and pulmonary functions. If I did proceed w/some sort of chemo for the BC, it would have reduced my reoccurence rate by 1-2%. I decided, it wasn't worth it. As a Hodgkins survivor, we have a lot of late effects of treatment to deal with that show up 10-15-20 yrs out from treatment.
Thanks for all your responses!

undecided
Cathy, I'm hoping you are still doing well now alomost a year after you posted this. Hodgkins treatment deffinitely put a different spin on other cancer treatment options.

I had radiation therapy for HL 27 years ago. Had multinodular thyroid removed last April thankfully no cancer there but was recently diagnosed with BC. Had a mastectomy left breast,T1b N0 er+. I am trying to decide if it is worth it to undergo "optional" chemo to improve the reoccurence rate by 1-2% as well as possible hormone therapy.

Curious to know if you have encountered other hodgkins survivors who opted not to do chemo and or hormone therapy for BC?

Annette 11

Cathy
My mother had BC when she was 80 yrs old, she is 95 now. She had mastectomy on one breast, did not have chemo or rads. She just took Tamoxifen for 5 years and did well.

criptupnana

Annette 11 said:

Cathy
My mother had BC when she was 80 yrs old, she is 95 now. She had mastectomy on one breast, did not have chemo or rads. She just took Tamoxifen for 5 years and did well.

I had a friend who had a
I had a friend who had a friend who did the same thing. No chemo, no rads and just aromatase inhibitor, which she refuses to take.... scary

mmmaryl

breast cancer
Hi, I had a similar situation to you, Kathy. I had Hodgkin’s disease at the age of 16, in 1981, along with upper mantle radiation and no chemo. I was cured, but I ended up getting premenapausal BC on the left side in 1996, and on the right side in 1997 and I got mastectomies each time, although no reconstruction. I do want reconstruction now, and was considering silicone implants, but now that I have read about women with chronic pain after silicone implants following upper mantle radiation, I am wondering if that is a good idea to go the implant route. The problem is that I have no good donor sites for natural reconstruction like diep, or gap flaps, because I am very thin.
Have you or anyone heard about any BC/Hodgkin’s survivors who had upper mantle radiation who have had success or failures with their implants and want to share about pain level/etc?

mmmaryl

breast cancer
Hi, I had a similar situation to you, Kathy. I had Hodgkin’s disease at the age of 16, in 1981, along with upper mantle radiation and no chemo. I was cured, but I ended up getting premenapausal BC on the left side in 1996, and on the right side in 1997 and I got mastectomies each time, although no reconstruction. I do want reconstruction now, and was considering silicone implants, but now that I have read about women with chronic pain after silicone implants following upper mantle radiation, I am wondering if that is a good idea to go the implant route. The problem is that I have no good donor sites for natural reconstruction like diep, or gap flaps, because I am very thin.
Have you or anyone heard about any BC/Hodgkin’s survivors who had upper mantle radiation who have had success or failures with their implants and want to share about pain level/etc?

RozHopkins

After Masentomy
Hi - had bilateral one year ago. Infiltrating Lobular both sides. Four chemos no rads and Tamaxofen. Reconstruction done several times, (long story) last op this May, ER. Looking good now.

Funny enough I asked my Oncol just yesterday if I could have an MRI as it was a year after the first diagnosis. Just really to make me feel confident everything is OK. Because, yes, sadly now and again I feel something could be brewing in the chest or arm, whats this twinge and that twinge. He said no MRI is necessary unless something needs checking out, dont get mamos now (mamos and scan didn't pick up both my cancers anyway). Apparently my Oncol thinks I should stay on Tamoxifen for between 5 - 10 years, he isn't happy yet with all the trials on newer drugs. 10 years is a horrible thought, however, my mum got breast cancer back two more times when she stopped taking this drug. Naturally, everyone is different but I am surprised how many ladies after mastectomies have problems later in their chest wall, always a worry.

Hope we both are rid of this illness for good. Take care.

cathyp

mmmaryl said:

breast cancer
Hi, I had a similar situation to you, Kathy. I had Hodgkin’s disease at the age of 16, in 1981, along with upper mantle radiation and no chemo. I was cured, but I ended up getting premenapausal BC on the left side in 1996, and on the right side in 1997 and I got mastectomies each time, although no reconstruction. I do want reconstruction now, and was considering silicone implants, but now that I have read about women with chronic pain after silicone implants following upper mantle radiation, I am wondering if that is a good idea to go the implant route. The problem is that I have no good donor sites for natural reconstruction like diep, or gap flaps, because I am very thin.
Have you or anyone heard about any BC/Hodgkin’s survivors who had upper mantle radiation who have had success or failures with their implants and want to share about pain level/etc?

I am aware of other Hodgkin Lymphoma survivors treated w/radiation that had reconstruction after dx'd w/breast cancer. Also, there are HL survivors that have had prophylactic mastectomy (before any BC dx) and reconstruction. I'll let you know where to read of their experiences!

Cathy

JudyMR

No treatment after surgery

It looks like all of these posts are quite old. Hope all of y'all are still doing well!

I am 63 years old and had a single mastectomy 4 months ago, with no sign of cancer in the remaining breast. It was diagnosed as IDC and although the surgeon removed all of the cancer and the lymph nodes were clear of cancer, both radiation and chemo were recommended. The tumor measured 4.7 mm. Radiation oncologists (2 of them) said radiation wasn't needed. Oncologists (also 2 of them) wanted radiation AND chemo, but told me the decision was mine. My oncotype score was 8 with a reoccurance of 3% and indicated that chemo would only improve the outlook by less than 1%. Needless to say, I passed on the pleasure of chemo and my oncologist was very, very upset with me. She said the size of the tumor, while it doesn't REQUIRE chemo, should be treated with chemo and that my response would be noted as AMA. I know what that means, but it came across as a threat. So, needless to say, I won't be going there for any further treatment and have decided to roll the dice with regular checkups. I don't have any other health issues aside from a mild case of COPD, but have quit smoking as that's the only treatment available for that issue. 

Has anyone else gone AMA and said no treatment? Sometimes I wake up at 3 a.m. and lay there wondering if cancer is coursing through my body and if I should find an oncologist willing to use hormone therapy without chemo. Has anyone done this? 

Thank you.

thora

https://csn.cancer.org/discussion/comment/1689174#Comment_1689174

Hi Judy, I can't believe that you were recommended to have chemo for such a small tumor with no node involvement. I just had a 7mm IDC removed and sentinel node was negative, and I am refusing radiation. Waiting for my oncotype results, but pretty sure I won't need chemo. Yes, I was told to do radiation, but decided against it. I had DCIS in my other breast and the IDC is in the opposite breast, so treating the breast with radiation would not have helped me at all. I am not sure whether to do hormone therapy although that is widely suggested.

JudyMR

Hi Thora!

I used to work with a lady named Thora. When I saw your name it made me smile! Thanks for that.

I did end up going back to the second-opinion oncologist shortly after I wrote the post. The constant worry that I should be doing more was draining my energy, so I asked about hormone therapy. She prescribed Anastrozole 1mg daily and said there were a few immediate side-effects, but nothing too bad--the long-term effects are different for everyone, and some are not so great. I've been on them since late October and so far, so good. I go in for bloodwork in mid-April, so will learn more then.

I hope you get your Oncotype score soon. When I saw that I was finally able to draw a deep breath.

Good Luck!

Judy

thora

https://csn.cancer.org/discussion/comment/1693384#Comment_1693384

https://csn.cancer.org/discussion/comment/1693384#Comment_1693384

Thank you, Judy. Good luck to you as well.

https://csn.cancer.org/discussion/comment/1693384#Comment_1693384

I just got my oncotype score and it is 26 - chemo was recommended. But the cutoff is 25. I decided not to do it. My oncologist prescribed anastrozole, same as you, and will see how it affects me. Encouraging that you are tolerating it well. I have been told by her to not ingest soy products or take flax seed - both of which is my daily diet. Now I am researching all this phytoestrogens and its affect on BC. I came across studies where they actually say to add flax seed to the diet for BC patients. I think I will continue my diet as before..it's such a rabbit hole when you start down this road. Doing a dexascan next week to have a base line on bone health.

Thanks

cathyp

https://csn.cancer.org/discussion/comment/1689174#Comment_1689174

Hi Judy. I can’t believe I wrote this post in 2010 and here it is 2022, 32 years into my Hodgkin’s Lymphoma survivorship and 14 years as an Invasive BC survivor. All is well on the BC front but I’m going for a breast MRI as my new oncologist feels Brest tissue was left behind and my surgeon did not respect my wishes of being flat, now called aesthetic flat closure. My “flat” chest is a mess because he thought I’d change my mind. Anyway the MRI will help me decide wether to have a revision.

Hodgkin’s cardiac and pulmonary late effects are the more pressing issues as the years go by among many other things like suspicious thyroid and lung nodules.

I am still curious about my original question as it seems if you “only” have BC in your hx they seem to be very aggressive with treatment regardless of the size and oncotype score etc. I go to a large teaching cancer center and they are so easy going saying no we wouldn’t treat your Invasive , DCIS and LCIS cancer you had a mastectomy.

Regarding Flax and soy I see an Integrative Med Doc too and you are correct. Small amounts of the least processed soy is actually protective against recurrence. It use to be off limits.

Thora, I have senile osteoporosis from my Hodgkin’s treatments so good luck with your Dexa Scan. I do Reclast injections about every 2 years. They wanted to do Evista that has protection against BC recurrence but I can’t take due to blood clotting gene. Something to keep in mind but hopefully you are good with home health.

So yes the original post is 12 years old and here I am virtually no treatment but BMX for Invasive BC 14?years later and looking forward to getting old too, 62 this summer.

All the best To Judy and Thora and of course all the above who graciously shared their experiences with me❤️❤️❤️