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Topic: Others “reactions” to poss. cancer or cancer

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jun 29, 2019 08:28AM - edited Jun 29, 2019 08:29AM by Trying2staypositive

Trying2staypositive wrote:

So I wasn't sure exactly where to post this or what board. I chose this one since I am still not officially diagnosed with anything other than high-risk conditions (adh/alh) and I'm still undergoing a second biopsy and probably a surgical biopsy of both places after I'm done. I have a very strong family history of bc. This post is mostly to address how weird some of my closest friends and certain family members have acted ever since this has started and I thought that I could have breast cancer. It's suddenly like it's contagious?? And suddenly they go MIA. I don't mean to make light of it it's just kind of ridiculous. If nothing else possibly dealing with something serious really does show you the true colors of others and their ability to handle anything serious in life EVEN WHEN ITS NOT THEM. Maybe they just can't handle the thought of dealing with their own mortality or anything that reminds them of it? In any case this has been the hardest part for me to deal with especially because best case I'm considering prophylactic mastectomy. My mother had a very serious stage 4 invasive ductal carcinoma, my grandmother had a less serious stage, and my aunt also has ADH. I'm very dense so I really don't plan on sitting around and waiting for this turn into something else assuming it hasn't already. Just really don't know how to deal with the way certain other people are reacting. Any advice? Before this my husband and I were also already considering divorce, so of course this complicates matters and delays thingsplus my husband really can't deal with it emotionally or offer support. (Hes dealing with his own issues). Hopefully somebody has something encouraging to say, because Let me tell you this journey is lonely.

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 29, 2019 09:48AM Sherri000 wrote:

Last year my mammo showed amorphous grouped microcalcifications listed as birad 4. I wasn't able to do the standard biopsy as I am disabled and can't lay on the table with my head turned. So i had to have an excisional biopsy instead. Pathology came back as ADH. Fast forward 6 months. I read here and in other places that for ADH you should alternate from Breast MRI and 3d mammogram every 6 months so I told my BS I wanted a breast MRI at the 6 month point. MRI showed a mass in the same breast but in a different area so I was sent for a second look 3d mammogram and ultrasound.

The mammogram couldn't really show the mass as it was hidden in dense tissue. They found it on ultrasound because they knew where to look based on the MRI. It is very possible this mass was there the whole time and missed on previous mammograms and ultrasound. I just had an US guided vacuum biopsy done the other day, got a huge hematoma, and am now awaiting the results.

My previous relationship (almost 10 years) ended at the beginning of last year so I have been facing all of this alone. I have some help from my parents but they are aging with their own health problems. Everyone I talk to about it really doesn't want to discuss it and just says the typical things like, just stay positive and try not to worry about it.

We know this already though, that stressing over things doesn't improve the situation. But denial isn't something that comes easy to me. I do what I can to try to relax and keep busy to not dwell on it. It would be nice to feel like you have someone there for you, to listen and to care. I guess really for some of us this is a journey we have to walk alone. We can find people to talk to, or therapists. We can talk online. But none of that is the same as having those close to you in it with you.

I wish I had better advice or something uplifting to add. I've just been trying to lift myself up and have faith that I can handle whatever comes next. I think most people are going through life the best they can and even if it seems like they have it all together they are most likely functioning at their max for their own personal issues. It becomes difficult for most people to try to be there for someone else with something so big and so serious. I also think that until it is actually cancer, most people don't have room for our fears and concerns. I guess that is fair to some extent. We have to learn to be our own rock, for now anyway.

This group helps me a bit and I know that if I do end up with cancer there will be some resources and support available somewhere. Good luck on your journey. Though you may feel alone there are others out here in similar situations, if that helps in any way.

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Jun 29, 2019 10:00AM Trying2staypositive wrote:

Thanks Sherri, and I’m really sorry to hear you are in a similar boat. I just hadn't seen any posts on this but sure there may be some in the diagnosed group. Maybe what bothers me most is that I dont want to necessarily talk about my breast issues with my friends...its more that some of my closest friends suddenly dont even contact me hardly all since I told them what Im going through just to do or even talk about normal stuff. Its like I suddenly got the plague. Lol If that makes sense.

Married or not it is hard for sure when you dont have emotional support for any reason so I sympathize. And I agree you’re right...everyones got their own “stuff.” I am thankful for the women here too because it does make you feel less alone. I think for me its the burden of considering a mastectomy and how I would do it all alone emotionally although I could prob. figure it out practically (im also a mom).

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 29, 2019 10:08AM Sherri000 wrote:

It probably is that it is too difficult to face these types of issues and so it is easier for friends to be "busy" and not call. They don't want to think about it or deal with it and if they call you may want to talk about it. I don't think that is being a very good friend but that's how it goes sometimes. It stinks.

I've been thinking about mastectomy as well. Given I am disabled and already have so much going on, if it's cancer, I will probably only do surgery. I don't think I could tolerate chemo or radiation, or even hormone therapy. I don't do well with most medications and I will have no one to drive me or help me. I might be able to get help for aftercare if I have a mastectomy but I'm not sure. Maybe some sort of care facility but that probably costs too much money. It is difficult to think about but I do have cancer in my family so I need to think about it.

I don't know about the emotional component. It really is hard without support. I'm thinking I will need to get a therapist to help with that part. There is only so much we can do to help ourselves. Sometimes we just need someone to care and listen. If I have to pay for it then I will.

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Jun 29, 2019 10:22AM WC3 wrote:

I think a lot of times people just don't know how to respond, so they avoid. Sometimes they just need someone to tell them they can resume their normal interactions with you.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Jun 29, 2019 10:30AM AliceBastable wrote:

I got to a few steps beyond where you are now (lumpectomy and radiation). I didn't discuss it with anyone until the evening before my actual surgery, when I did a FB post (I only have real life friends and relatives on it). I think I told my sister a few days before that, but only because she was nagging me to help her with something. I had to have a few more surgeries last year, and same thing, one FB announcement for each, and I kept it light and humorous. I didn't discuss any details with anyone except my husband, except for one acquaintance who has had a different cancer for several years, and she became a mentor and close friend through this connection. For the most part, family and friends never got back to me beyond an initial "Oh, bummer, thinking of you" response. Maybe it's the social media age where people feel they have to tell everyone everything. No, you don't. And most people really don't want to hear it. I have another potentially serious medical condition, but it's in the watch and wait category before surgery will be necessary. I wouldn't dream of telling anyone about it, unless they ask me to lift something heavy, which I can't do. Even then, I wouldn't give them details. Maybe don't cash in on people's capacity for sympathy before (and until) you really need it?

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jun 29, 2019 10:43AM Trying2staypositive wrote:

Thanks for the replies. Maybe they do need to be told be normal? Frankly there are 2 people that based on this I believe I just need to move on from. Not everyone will be there for you no matter what you've endured with them-thats true.

For the record, I have only told a few close friends and the family that it has affected because they share the same genes and may also have a higher risk. I wouldn’t dream of posting something like this on FB or any social media site. Still laughing at “cashing in on someones sympathy before I need it.” I dont want their sympathy, I just want them to be normal. And what I have said so far merely insinuates a problem and a preventative surgery maybe....but obviously the few people to whom Im referring to know about what my mom had been through...so I guess if anyone of them feels an “early need to render sympathy” they wish to recoil from its likely because they remember what she went through and they dont want to be around for that. Nothing Ive done or said. Also maybe your situation is a little different as you had a husband who cares to tell and give you support. And a sister for that matter....
Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 29, 2019 10:45AM - edited Jun 29, 2019 10:45AM by Trying2staypositive

Btw Alice, I like your tag line. Lol

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 29, 2019 11:26AM AliceBastable wrote:

Oh, I didn't mean you were asking for sympathy - but other people may have only a limited supply to give, and they might run out - and then just run. On the risk - I'd have assumed I was high risk genetically, because of family history and my own cancer history (4). My breast surgeon had me do genetic testing. Nothing. That's one I probably did discuss with my niece and sister, but the niece is actually a genetics researcher (her specialty is Alzheimer's), so the topic comes up at most family gatherings, in an academic rather than personal way. But some people, at even the merest hint of a whisper of the possibility of cancer, freeze up or get weird.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jun 29, 2019 12:15PM Salamandra wrote:

A lot of people really need to be explicitly told what you want/need from them. Also don't discount the possibility of coincidence. If something is going on for them right now that's challenging them, they may not want to tell you because they don't want to add more stress to you or seem like they're comparing your stress to theirs, and that might also look like withdrawing.

Some people really are not good in times of need. It's up to you to decide whether they're good enough in times of fun that it's worth accepting.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 29, 2019 12:27PM Trying2staypositive wrote:

True. Very good points. Considering one of these people was my childhood best friend its especially hard for me to take. If there is anything I learned its better to just keep all more serious things to yourself....and just deal with it.

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 29, 2019 06:49PM countdooku wrote:

Most people want to be supportive, but don't know how to react. so they might be staying away out of fear of saying something that will upset you. I've run across this myself. My way of dealing with that was to give nicknames to the cancerous breast. So I called it Darth Boob. Because it started out on the good side of the Force (Annakin Skywalker) and then turned to the Dark Side. That has helped crack the ice and I and my friends have a good laugh about it and then they open up more. I had a double mastectomy a week ago.

Dx 5/21/2019, DCIS, Right, 3cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 6/18/2019 Mastectomy: Right; Prophylactic mastectomy: Left
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Jun 29, 2019 08:35PM - edited Jun 29, 2019 08:35PM by Trying2staypositive

Countdooku thats just AWESOME, Im also a Star Wars fan. That truly made me LOL! What a great sense of humor you have!! I hope you are recovering well from your double mastectomy and not in too much pain. Hows it been for you so far??

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 30, 2019 03:10PM countdooku wrote:

Trying2stay - recovery from the surgery hasn't been too bad. Recovering from a C-section was a lot harder. My surgery was actually on 6/19, so it's about a week and a half ago now. The first 5 days I was pretty tired and worn out all the time and my energy levels went up by the 7 day post-surgery mark. I still have drains in because the reconstructive surgeon keeps those in for 2 weeks for all of his patients. Dealing with the drains hasn't been as bad as I thought it would be. I'm taking penicillin as a prophylactic antibiotic for 2 weeks.

Dx 5/21/2019, DCIS, Right, 3cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 6/18/2019 Mastectomy: Right; Prophylactic mastectomy: Left
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Jun 30, 2019 04:08PM Trying2staypositive wrote:

Countdooku, so glad you sound like you are doing well!!! Hopefully the drains havent been too much of a pain. Hugs to you keep letting us know how you are doing. Are you going to be taking any hormone blockers after this do you think? Also how did you decide on the reconstructive surgeon? Or did you just go with the person your bs recommended?
Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

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