newly diagnosed

Lee · Guest

Sharon,
Please don't feel guilty about anything. I was on HRT for 16 years.so I know what you mean when you say you feel guilty. I do know it fed the tumor. So I live with that, wondering would I have gotten BC if I had not taken HRT ? I will never know and I can't drive myself crazy with this because it won't help and it won't undo the fact that I had BC.
I wish you only the very best and will say a prayer for you.

Stay strong.
Lee

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Sharon ~ I forgot to mention. I NEVER took any HRT and still got BC at the age of 52. Sooooooo.......you never know. They just do NOT know what causes it.

Hugs,

Margie

Sharon · Guest

What a difference a few days make.. The anxiety is still present but much of it has lessened. I saw the surgeon yesterday. She is wonderful. I taped it and my husband came with me. I am going to be presented at the Tumor Board tomorrow. I will then make a decision regarding surgery, but am leaning towards a lumpectomy with sentinel node biopsy and follow up radiation. I am Er/pr positive. They did not do a Her2 test. Should I have one? Hopefully, the surgery date can be schedule with the next 7-14 days. You are all my inspiration....offering hope and such wonderful support. In gratitude, Sharon

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Sharon,

I thought the HER2neu test was standard. If it were me, I would ask for one. It's really important to know this information.

Sounds like you're doing pretty good, under the circumstances. ER/PR positive is very good because you'll respond to hormonals, which can decrease your risk of recurrence.

We will say a prayer and keep you in our thoughts for a very successful surgery.

Hugs,

Margie

Lee · Guest

Sharon,
I will say a prayer that all goes well with your surgery. You are in my thoughts as you all are. If there is anything I can do to help let me know.
Best to you.
Lee

sharon · Guest

Tomorrow is the surgery date. I will have dye for the sentinel node injected at 7:30 and then go to Xray for the wire placement and surgery is scheduled for 10:30. I can't believe it is finally here. I have to remember to remind the surgeon to do the Her2. She will order it. Now I will just have to wait for the pathology report and hope for the best. I have an appointment with an oncologist next week. Connecting here has been a tremendous support. At times I feel like I have joined a club of very special people. I know you will be here what ever the outcome. I know I am just beginning this journey. Blessings, Sharon

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Sharon ~ Good luck with your surgery. Afterwards, remember to take it easy and pamper yourself for a while. We are all here for you saying a prayer and keeping good thoughts for you. Let us know how it goes when you feel up to posting.

Hugs,

Margie

Sharon · Guest

Well, I had the surgery yesterday. The worst part was injecting the dye for the sentinel node biopsy. Then I had wires inserted, followed by two more mammograms and then the lumpectomy. All looked and went well. The surgeon felt strongly that the margins were clean by 1 cm and the node looked clean. She called me today with the bad news. The node was not clean and held a 5 mm metastic lesion. It was walled off if I remember correctly. The orginial tumor was just 8mm. However, she feels that it is aggressive. I am ER/PR positive and she is still testing the Her2 status. Needless to say, I am devastated after yesterday. She felt like she might need to take the other lymph nodes, but the oncologist is saying that the chemo will take care of them. She said if she did an axillary dissection and then radiation it would almost quarentee lymphedema. There is no angiogenis which I quess is good. This is definetly the worst roller coaster ride I have ever been on. This is the only place I felt safe to vent my bad news. She is suggesting Adriamycin/cytoxin/ and taxol via a port, Any thoughts, feelings, or suggestions.....and the battle goes on. Sharon

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Sharon

Sorry to hear the bad news. Try to be strong and stay strong. It is a difficult treatment but you will succeed.

regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

MuttsMom · Guest

I've heard of having chemo and then removing lymph nodes or like in my case, I had the MRM and nodes removed before chemo/rads. I personally have never heard of having a positive lymph node(s) and not removing at least more to see if they are positive or not.

I'm sure Leo can tell you for sure, but I was dx 2/14/02 and I've never heard of the nodes being left in and letting the chemo "take care of it" and never removing them.

This is an emotinal roller coaster ride from hell, but it does get easier the more time that passes after treatment and your follow up appts. are good.

Prayers and best of luck
Nancy

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Sharon,

Sorry to hear about the node, but glad to hear you came through the surgery fine.

The good news is that you are ER PR positive and you should respond to hormonal treatment, which has a good track record.

I did Adriamycin/Cytoxan but did not have a port. I'd be glad to give you some tips on coping with that when you get that far along, as I'm sure the other ladies will too.

Prayers and take care.

Hugs,

Margie

Sharon · Guest

Thank you for your responses..After a very fitfill night despite Ativan, my thoughts this morning are to have a mastectomy with nodes removed. The thought of something lurking in the other nodes is scarey. If I did that then maybe I would not have to have radiation. What do you think? The chemo a/c/t sounds heavy duty. I felt so relieved after the surgery and now everything is crashing down again. It doesn't really matter what the odds are if you are in the affective group. Does my reasoning for more surgery sound wise? I wish there was a test for the lymph nodes like the mammogram. This is a test of endurance for sure. The surgeon said that with such a small tumor the odds of node involvement was only 5-7%. Would a CT scan show if I had metatasis? This is hell. Sharon

MuttsMom · Guest

HI Sharon,
Unfortunately, only you can make that decision. You have to do what is right for you and what you feel at peace with.
This is different, but I opted for a simple mastectomy on the other breast because of mine being Lobular, which is prone to mirror itself in the other breast. With being Stage III, 5.5 cm tumor and 9+ nodes/16, it was the right decision for me to have the other breast removed to help my chances of not having a reoccurence as much as possible. I'm sure some wouldn't have done it and others would. I've never regretted my decision and not to say that me doing that is the reason, but Valentine's Day will be 3 years that I was dx and my last check up, was a couple of weeks ago and I'm still hanging with NED (No Evidence of Disease)

You might consider a 3rd opinion. This disease is so screwy as it is, it much be hell having 2 docs recommending 2 different things. They all have had different experiences with patients and no doubt, feel what they are saying is what they feel is best for you, but that doesn't stop the emotional roller coaster ride your on.

We're here if you need us
Nancy

BFagan2067 · Experienced user Joined: 07 Oct 2004 Posts: 54

Sharon, I have not read all of the posts on this thread... but I have read the most recent ones. I am sorry about your delima that you are facing now in terms of the decision of having a full node removal etc... I am going to throw my 2 cents into the pot here too... not really known for keeping my mouth shut Very Happy

.... here goes... Did she not take the sentinel node out because it showed up as uptaking indicative of the cancer? and the fact that the other nodes did not lite up does that not mean that the chances of having cancer in them is not probable. When I had my initial diagnosis it was 6 years ago, next month... senitnel node biopsies were just in the trial phase at that time. When they remove the nodes, as they did miine, they just basically scooped as many nodes as they could get, in my case they took 28 nodes... and 5 of them tested positive... the number only helped to determine the course of treatment... the number along with the size of my lesion 5.2cm helped to determine the stage and the treatment. One of my questions was what if there were nodes left that had cancer in them, the answer was the chemo and the radiation would take care of them. I did have A/C, rads and taxol.... I also have a port, I say have cause I still have mine in... my choice due to other health issues and a great dislike of IV's... I highly recommend a port for anyone who is going to be having chemo and hates the IV's as much as I do... it also helps to save your veins as that the a/c does a job on your veins. Also less sticks for blood work etc. The port is very easy to maintain with monthly flushes... and there is even a cream (emla) so as that I feel no pain what so ever... it has made all of this so much easier for me. I will also tell you that I had rads despite having a mastectomy, which many think that if you have a mastectomy you do not have to have rads...not always true... I also have lymphedema.... If given my druthers I would do anything to avoid the lymphedema... and I had to trust that the chemo and rads did their thing on any lymph nodes that I may have felt unsure of. I also know of people who have had enlarged lymph nodes that have been biopsied and found to contain cancer that their doctors have left in and used as a way to see if their chemo has been effective. The other thing that you must take into consideration is that the surgeon unless they are an oncologist knows about surgery, your oncologist knows about the cancer and you have to decide which doctor you think knows the most about your cancer treatment. So... I am not sure that any of this has helped you in any way but at the very least I can say that I have done the protocol that you are looking at, I have a port and have lymphedema, but I am 6 years NED and if there is anything that I can help you with feel free to email me BFagan2067@aol.com....just put from the BC Forum in the subject line... I dont open mail that I am not sure of... best of luck to you... a hard decision but once you have made it you will know that it is the best decision for you!
HUGS!
Barbara

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Sharon,

I had my choice of lumpectomy or mastectomy and I chose mastectomy. It all depends on what comfort level you can live with. But even if one opts for a mastectomy, there can still be a recurrence later on. The survival stats are the same for mastectomy and lumpectomy + radiation. The recurrence rate is a bit higher, though, for the lumpectomy + radiation. But I felt I could deal with it. Be aware that even if they do a mastectomy they can never cut out all of the breast tissue and there is still a chance of a recurrence later on in the scar tissue or in the chest wall, I believe. So....no matter what you choose, there is no guarantee. That is what makes this whole ordeal so difficult.

The radiation part for me was not difficult at all. It was just an inconvenience going there every day. Also, I believe that if one has a mastectomy and has 4 or more positive lymph nodes they will still recommend radiation.

The chemo sounds worse than it really is. It is very doable if you go into it with a positive, can-do kick-butt attitude! And I think you CAN do this!

Keep us posted. Good luck and prayers.

Hugs,

Margie

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