I had routine mammo 4 wks ago, had biopsy 2 wks ago/also general surgeon, had mri 1 wk ago, and visited medical oncologist today...up til now I was doing fine --thinking "I have breast cancer, I'll have lumpectomy, radiation, maybe chemo, life goes on...hey, I probably won't even miss much work." Today the oncologist tells me I'm not a candidate for Mammosite, I may not be able to have lumpectomy because there is not only the one lesion the mammo showed, but two others the mri indicated. I have to wait for consult between the other drs. Looks like mastectomy and chemo are more likely. I'm negative for ER/PR and HER2. I think I understand what's going on, but I'm not sure... I decided not to go to work for the rest of the day! I've been reading -- so glad I found this site. Any words of wisdom from experience for a newbie on the journey?
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AnnNYC Joined: Aug 2007 Posts: 1875 |
May 12, 2008 02:28 pm
AnnNYC wrote:
ryjuem, I'm so sorry you've had to look for this site, but I'm glad you found us. This time between getting a diagnosis and getting a treatment plan is a difficult one. You sound like you're taking it as it comes -- good for you for taking the rest of the day off from work. I will let others who are "triple negative" speak in more detail about their treatments, including chemo, but I can share my experience with mastectomy. It was a blow that I "let in" in stages -- I wish it hadn't had to happen, but I'm living with it, and now, a year later, I feel very "friendly" toward my silicon-implanted reconstructed left breast. Advice? For starters, I would say ask for and keep copies of all reports, bring a notebook with you to appointments, write down questions as you think of them and bring the written questions to appointments. If you have some kind of tape recorder to bring, that's very good. Bring someone with you to appointments if there's someone you feel comfortable having in that role, who can do it. (I myself am kind of a loner, so going alone to appointments felt fine to me -- but even I enlisted friends to come along when I had surgical procedures!) I know you will be getting a lot more information and excellent suggestions from the women on this board (probably even before I click to post this!) -- and also a ton of support and empathy. With my best wishes, Ann Dx 3/9/2007, IDC, <1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2- |
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Wink333 Joined: Feb 2008 Posts: 112 |
May 12, 2008 02:42 pm
Wink333 wrote:
ryjuem, I agree with everything Ann said above. Write questions down and take time in front of the dr to write the answers too or you won't remember when you get home. Definitely get copies of all blood work, scans, pathology reports. Get a large 3-4 inch 3 ring binder and dividers to keep everything organized in. Put things in as you get them. Ask questions, ask questions, etc. I am triple negative also. There are good and bad things about every different type of bc. The good thing about trip neg is that it is thought to be more sensitive to chemo than others. Bad thing is that there is no hormonal treatment for us after we finish chemo and rads. It is doable though. I'm sorry you are going through this but this site can help a lot. Some threads you will want to stay away from and others you will want to frequent. I'm sure others will be along shortly with more help. Good luck to you! Wink Wink333
Dx 2/28/2007, 2cm, Stage IIIc, Grade 3, 11/25 nodes, ER-/PR-, HER2- |
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Sierra Joined: Feb 2004 Posts: 4630 |
May 14, 2008 03:10 pm, edited May 14, 2008 03:11 PM
by Sierra
Sierra wrote:
Hello to you:
The time is NOW!
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Lenky Joined: May 2008 Posts: 23 |
May 14, 2008 03:59 pm
Lenky wrote:
Hi, this is my first time on site, and I'm not really computer literate. I have just registered tonight. I had 2 grade 3 tumours removed - along with my left boob 3 weeks ago. Some days I feel really good - almost strangely calm, but then have weepy periods too. I'm waiting to see my oncologist - so far I've been told I will need chemo and probably radiotherapy - the good news was that only 1 of 11 lymph nodes was infected. I didn't think to ask about my prognosis, if that's the right word - I'll have to ask the onc, when I see her. The best advice from everyone I've read so far seems to be to just take one day at a time. |
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marejo Joined: Jul 2005 Posts: 189 |
May 14, 2008 04:18 pm
marejo wrote:
Hello Lenky, That is good advice you are hearing. One day at time. That's all any of us can do. Whether you have cancer or not. No one knows what their tomorrow holds. No one that is but God. So, one day at a time, is best. Also, don't get too wrapped up in your prognosis. It is only a guess, backed up by statistical date. But, it is only a prognosis. That too, no one knows. I also had a grade 3 tumor that was 4 cm in size. I had 1 sentinal node positive of the 2 that were removed. I did the chemo, radiation and year of herceptin. I am fast approaching my 3 year NED anniversary. I am well - and you will be too. Love and God's protection to you as you go through treatment. Hugs, Mary Jo Dx 6/24/2005, IDC, 4cm, Stage IIb, Grade 3, 1/2 nodes, ER-/PR-, HER2+ |
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AnnNYC Joined: Aug 2007 Posts: 1875 |
May 14, 2008 04:22 pm
AnnNYC wrote:
Hi Lenky, I'm glad you found us (but sorry you had to). One day at a time is good. Strangely calm alternating with weepy -- that sounds very familiar to me! For me there would also be moments of panic and anger -- not necessarily about my health but just about taking care of everything ELSE in my life. You will become more computer-literate every day -- just as you have already learned a lot more about cancer in the past month than you ever expected to, or wanted to. At least learning more about COMPUTERS is probably something you might have WANTED to do! Please keep coming here, asking questions as you feel like it, or just telling us whatever you want to tell. Best, Ann Dx 3/9/2007, IDC, <1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2- |
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Lenky Joined: May 2008 Posts: 23 |
May 15, 2008 04:25 pm
Lenky wrote:
Marejo it's overwhelming trying to take in all the information. I'm gong to write a list of things to ask the ongologist - like how long the treatment will last - so I can focus on planning a holiday or something nice to celebrate arriving at the other side of this particular journey. I think the positive thing I've learned is just as you said, none of us know what tomorrow holds for us - but at least I do know who holds my tomorrows. God Bless and thank you - it's encouraging to know you are through to life on the other side of cancer. |
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Lenky Joined: May 2008 Posts: 23 |
May 15, 2008 04:31 pm
Lenky wrote:
AnnNYC Thank you for your encouragement. I guess sometimes, we do seem to be able to hold it all together and then lose all the ends. My panic was over the treatment more than the mastectomy. I dreaded the chemo and radiotherapy. Can't say I'm leaping for joy at the thought, but at least I've come to terms with it. I think a lot of it is because as you said, we suddenly have to learn more in a couple of weeks about something we never thought or wanted to know ANYTHING about. And, you're right, I did want to know more about computers - that is definitely a plus for me as I intend to keep on the chat rooms. You really can't talk to friends who understand, unless they've been there. Thanks again. take care |
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