Frustrated and Scared

Veeder14

Hi,

I'm just so frustrated as I'm trying to get in to see the breast surgeon asap and I have an urgent referral. I'm going to a large University Hospital and I know there's protocols. They insist I have to go through the New Patient Referrals even though I had a consult with this surgeon last year, and was a patient of the cancer center for Melanoma treatment last year. The surgeon only sees patients for consults on Mondays and of course Christmas and New Year's were Mondays, and this week no Monday, so no consults.

I'm desperately trying to get an app't this coming Monday since the following Monday is again a Holiday and no consults that week. I've placed many calls and finally got the New Patient Referral to send an email to the surgeon. So far he hasn't opened it and is in surgery today, and not working tomorrow. I've also emailed directly to the surgeon as soon as I got the diagnosis. I'm thinking what is the point of early diagnosis if you can't get in to see the surgeon. I really don't want this cancer to become system-wide while I'm waiting to be seen. I worked in hospitals for 30 years and I worked on Holidays but this place just doesn't. UGH. Thanks for listening.

Spookiesmom

Breathe!!!!

The cancer has been there a while, a few days or weeks won’t make that much difference.

Yes it’s a shock to hear those words, and now you want it out yesterday.

The whole deal is hurry up and wait. For appointments or results.

It does get better once you have a plan for treatment. Stay away from Dr Google, he is NOT your friend. If you need some short term help with anxiety call your PCP.

AND BREATHE.

Veeder14

Hi Spookiesmom,

Thanks for your post. Today after speaking directly to the new pt referral person she said that technically I'm not a new patient and today gave me the surgeon's first available app't for a new pt in advance of him responding back to emails (he's been in surgery for 2 days). She will email the surgeon to remind him that I had a consult 13 months ago and request a sooner app't. At least I feel better having an app't time. Whew. With the Melanoma last year I also got caught in the holiday delays and an urgent referral took 3 weeks.

Georgia1

So glad to hear you got an appointment. The constant waiting is so hard and it's hard to focus on anything else. But I hope you can take some time this weekend to do something nice for yourself! You certainly deserve it.

Pink2017

Hi, was recently diagnosed with invasive ductal carcinoma right breast. My doctor recommended a mastectomy because the cancer is in the whole upper outer right quadrant of the breast and also reconstruction. My question is should I have both breast removed for reconstruction or if anyone could give me guidance. I am totally lost and scared. I know it my opinion but would just like some opinions if anyone is similar to my case. Thank you for taking the time to listen.

Veeder14

Hi Pink2017,

Sorry to hear you need to be here. I'm totally new at all of this but I do know my sister decided to have a double mastectomy before she got cancer (smarter than me waiting). It's a good question as to whether they can do a single mastectomy. Hopefully, someone with experience will comment. I haven't had a surgeon consult yet but I'm sure they are going to recommend double mastectomy for me due to my BRAC 2 status even though the cancer is only in one breast. I know I couldn't live being lopsided with only one breast and no prosthesis or construction on the other side due to my spine issues. I'm scared also but mainly about whether this has spread or not.

Georgia1,

Thanks for your support, it's always comforting. I'll do something fun tomorrow.

Spookiesmom

Hi V, glad things are happening for you. Keep us updated.

Pink you will get more comments if you start a new thread.

Georgia1

Hi there Pink. I don't have experience to share, but I'd recommend you repost this question by starting a new topic; that way someone with experience will see and respond to the post. Also if you search for "masectomy" or "BMX" using the search function you should find some good info.

My friend had just a single masectomy because she had no family history of breast cancer and did not want to lose both breasts. But if you have an aggressive cancer, high risk of recurrence, or simply would feel less worried with a double masectomy that may be the right choice. Best of luck to you

Snickersmom

Hi Pink - Sorry we had to meet this way, but this is a wonderful place for information and support. We have all been in or darned close to your shoes.

I was supposed to have a lumpectomy last spring but because I had suspicious areas in 3 different quadrants of one breast, my surgeon told me he was afraid he might not be able to get it all by doing a lumpectomy - the 3 were too far apart. So he told me that he would have to do a mastectomy. I told him to take the other breast as well because I didn't want to have to worry about cancer in that breast. So I had a BMX (bilateral mastectomy) and have not regretted that decision even for a minute. I turned 70 3 weeks after my surgery. I did not once consider reconstruction, partly because of my age and also because I did not want to go through more surgeries. I also didn't want to have to worry about more cancer. I don't regret that decision either.

You need to take some time to just sit quietly, review your options, and do what you feel is right in your heart for you. Nobody can tell you what to do, It's your body. I can only tell you what was right for me. Maybe if I had been 30 or 40 I would have considered reconstruction but I'm not so sure. I have mastectomy bras, camisoles, and sports bras with pockets. I used to wear them for a few months after my BMX. But since our Florida summers are so hot, I discovered pretty quickly that I was much more comfortable wearing nothing but a shirt. I always hated bras anyway, so I sure haven't missed them. That caused a minor problem because I had a lot of shirts, tops, golf shirts, etc. that I could not wear without a bra or camisole. They were too thin, too low-cut, etc. I have just finally finished the final "cut" of my closet and I am in the process of replenishing with more comfortable tops.

Yes, I have had my share of meltdowns - mostly because of the clothing situation and also when walking through the bra department of stores - but it is definitely getting easier. This community forum has been such a huge help to me and I think you will find it is for you, too. I have met about 15 in my area at a get-together and I love knowing that they - and everyone else on this forum - is here for me, no matter what.

You will come through this, and you will survive. You need to sit and breathe, and then consider your options. You will make the right decision that's right for you. Be guided but don't let anyone tell you what to do. And make sure you come here often for advice, information, and support. We are all in this together.

Please keep us posted

Mrs_Beasley

Morning....@pink2017....I had IDC in my left breast and I chose to have a bmx in my attempt to never deal with this again. It was an upsetting and horrifying prospect to consider but 10 weeks post surgery, no regrets whatsoever. In fact, I felt a huge relief when I woke up post surgery and still feel that today. Also, for me, I never wanted to look back and say “I should have done blah blah”. Tough decision and I’m with you in spirit.

Joleen_joyce_mineo1868

im going through the same thing, except I haven't been diagnosed yet, but I'm pretty sure it is cancer with im 36 yes old 2 amazing boys but-- I have 3 lumps on my left breast a Nasty rash under it and I'm sore to the touch not where the lumps are though it's under and on the left side. There's a hard pea sized one above my left nipple then I found another one under my breast on the right side, then this morning I found one on the upper right side of my left breast. I called Thursday to get in to see the cancer surgeon and I told them everything and I have to wait untill Tuesday. That's 4-5 days away!! So I went to the ER last night and they said I have cellulitis and gave me antibiotics, marked it with a marker and said if it doesn't go down or gets bigger then come in asap, As far as the lumps He felt the bottom one and said "oh yeah I feel it, not to big but not small either, then my nipple one and said yeah I feel it. So my cousin asked him "could it be cancer?" this son of a son of a b***h Replied "Could it be cancer....(long pause) well yes it could be hi probability but they don't treat it there so make sure I send the Dr Tuesday." And left...that's it ? Really?? I can't believe not MRI X- RAY- CAT SCAN NOTHING!! So the nurse came in to discharge me and I asked her " If it is cancer will I be ok till Tuesday, she said yes you'll be fine, the problem is we don't treat it, we don't do biopsies here" at that point I was so pi**ed off I just wanted to leave..so I'm feeling more scared leaving the ER then I was when I walked in. So can anyone help me or just talk to me pls? Everyone around me keeps saying ur fine it's not cancer...but I no in my heart it is.....so and advise would help

Joleen_joyce_mineo1868

im going through the same thing, except I haven't been diagnosed yet, but I'm pretty sure it is cancer with im 36 yes old 2 amazing boys but-- I have 3 lumps on my left breast a Nasty rash under it and I'm sore to the touch not where the lumps are though it's under and on the left side. There's a hard pea sized one above my left nipple then I found another one under my breast on the right side, then this morning I found one on the upper right side of my left breast. I called Thursday to get in to see the cancer surgeon and I told them everything and I have to wait untill Tuesday. That's 4-5 days away!! So I went to the ER last night and they said I have cellulitis and gave me antibiotics, marked it with a marker and said if it doesn't go down or gets bigger then come in asap, As far as the lumps He felt the bottom one and said "oh yeah I feel it, not to big but not small either, then my nipple one and said yeah I feel it. So my cousin asked him "could it be cancer?" this son of a son of a b***h Replied "Could it be cancer....(long pause) well yes it could be hi probability but they don't treat it there so make sure I send the Dr Tuesday." And left...that's it ? Really?? I can't believe not MRI X- RAY- CAT SCAN NOTHING!! So the nurse came in to discharge me and I asked her " If it is cancer will I be ok till Tuesday, she said yes you'll be fine, the problem is we don't treat it, we don't do biopsies here" at that point I was so pi**ed off I just wanted to leave..so I'm feeling more scared leaving the ER then I was when I walked in. So can anyone help me or just talk to me pls? Everyone around me keeps saying ur fine it's not cancer...but I no in my heart it is.....so and advise would help

Veeder14

Hi Joyleen_Joyce,

I'm sorry to hear about your situation. It is really scary and I can relate. You will be fine until Tuesday if it cancer, however the cellulitis should be treated. Do you feel physically ill? I had cellulitis after my Melanoma surgery (didn't know what it was at the time) and got chills, with a high fever, and passed out. Cellulitis is a skin infection and mine infected the seromas left by the surgery so it went systemic overnight. I went to the hospital by 911 and blood was taken, and I received IV antibiotics then released (shouldn't have been released based on blood test results). I'm not trying to scare you but if you start feeling ill, I'd got back to the ER. Depending on how bad the cellulitis is, the pills may hold you over until you see the surgeon. Let us know how your doing.

Getting in to see a surgeon in 4-5 days is record time. I'm still waiting and have 3 weeks to go. Sounds the ER Hospital you went to doesn't treat Cancer (if you even have it) then they wouldn't pursue scans etc., Let us know how your doing after taking the antibiotics.