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Your advice is greatly appreciated....

maestro099
Posts: 7
Joined: Jul 2001

My mom was just diagnosed with BC today, and I am racing to find out as much information as possible in order to make informed decisions. Any help is greatly appreciated. I know that there are few doctors, if any, on this board, so I am relying on the advice of BC survivors.

Here are my questions:

1. Has anyone gotten a second opinion for their diagnosis? My thought is that once the cancer is diagnosed, it's final. Why then would anyone need a second opinion?

2. The cancer is stage 1 and we have not determined whether it has spread to the lymph node yet. The doctor is recommending a complete removal of the breast and lymph node or removal of lymph and radiation therapy. He said that either scenario would yield the same effect, but a removal of the breast would ensure about a 95% chance that cancer would not sprout up in breast again as opposed to a 79% chance of cancer elimination with radiotherapy. Any thoughts on pros/cons.

3. What's worse: tamox or chemo, in terms of side effects? Or is this avoidable with benign lymphs and mastectomy? I don't want my mom to physically suffer during her cancer treatment.

4.For homornal therapy, would removing your ovaries be an alternative to receiving tamoxi, and would be the desired effect be the same? Are there side effects to ovarian removal?

5. Is it possible to return to work during or after your cancer treatment? My mom works as a room attendent and the work can be strenuous at times. Considering this, if she underwent radiation therapy each day, would she be able to go to work afterwards? That is, would she be physically weaker b/c of the radiation? I am seeking advice from those who have had this dilemma. What about the effects of chemo or tamoxi on body? Has anyone recovered enough after such treatments to go back to work? I know that Lance Armstrong is an inspiration to all of us, seeing how he's able to win the Tour over other healthy males, but is his example an anomaly?

6. Along the same lines as previous question, for those who have undergone a complete mastectomy with removal of lymph nodes, what were the side effects? Was there loss of strength and or permanent damage to the affected arm? My mom wants to return to work after or during her cancer treatment, and this is a consideration in opting for either therapy (mastectomy, or radiotherpy).

7. Regarding insurance coverage, has anyone been diagonsed during their time at work? Did your insurance fully cover the cancer treatment and drug therapy? Were there any out of pocket costs? What did your employer think? How much time did you take off, and did your boss have any problem with it? Has anyone been fired because the company did not want to cover the your coverage anymore?

My desired goal in any decision is for my mom to have the same life/functionality as she did before? Is this possible to return to your former self after chemo/surgery?
Perhaps, I'm naive, but I would greatly appreciate any input. I am so confused right now, but I am optimistic that we will get over this. Thanks.

jbeardslee's picture
jbeardslee
Posts: 76
Joined: Jul 2001

Hi! I'm sorry to hear your mom's news but you are right, you will get thru this. I can respond to some of your questions. First the 2nd opinion I got was basically to help me decide between radiation and a mastectomy. Both doctors told me the treatments were equal and I chose the surgery for my own peace of mind. Since my cancer was a slow growing one and there was no lymph node involvement, my remaining treatment is tamoxifin for 5 years. The med does have some side effects and since I've only been on it since June 5th, I can't offer much about those. I did expereince hot flashes for the first few days. I have had some tightness in my arm since surgery but it's coming along better now. Several ladies on this network posted exercises for me to try and they are helping. I did not suffer any loss of strength but there is a small area on the back of the arm that is still numb. I'm a self-employed bookkeeper and my work was never affected; however my surgery was on the right side and I'm left-handed. I was able to return to my bowling within a week and able to resume all other activities in two weeks. We'll keep you and your mom in our prayers. Good luck and keep us posted on the decisions and progress.
love, judy

maestro099
Posts: 7
Joined: Jul 2001

Thanks for your thoughts, Judy. Your progress is encouraging. I was wondering if you have sought advice from an oncologist on how to proceed with treatment. I'm glad that you were able to regain stength in your arm. My mom is around 50, and this is a concern of mine. Also, was the tamoxi an option, or was it required? Could you have gone without drug or hormonal treatment after the mastectomy?
Warmest wishes,
Eddie

jbeardslee's picture
jbeardslee
Posts: 76
Joined: Jul 2001

Hi Eddie, I saw an oncologist only once....before I made my decision to have the mastectomy. It was basically to confirm that both the surgery and radiation would provide me the same medical benefits and to also hear from a second doctor that my cancer was a slow growing type. Ironically both doctors said they would advise their wives to have radiation and yet I made the opposite choice. It was something I felt more comfortable with and I'm happy with my decision. I am 54 and have good use of my arm. the doctors advised me ahead of time to be sure and use it for combing my hair, brushing my teeth, hanging laundry etc. I haven't had any actual swelling, just the tightness I mentioned before. But exercises are helping a lot. My type of cancer was estrogen receptive so the doctors (including the oncologist) agreed that it was best for me to take tamoxifen, probably for 5 years. I do know a lady who had surgery prior to tamoxifen being on the market and she leads a healthy active life. She's a 14 year survivor! But I do think most doctors today recommend tamoxifen if the cancer tests estrogen receptive; I also spoke with a lady recently who said her doctor had read that tamoxifen can be beneficial with all breast cancer and he started her on the med as well.
Take care and keep in touch.
love, Judy

cruf
Posts: 931
Joined: Oct 2000

Sorry your mom has to go through all this. I was Dx. with DCIS, noninvasive stage 0 BC in July 2000. No lumph node involvement. I'm almost 50. I didn't feel the need for a 2nd opinion because this MD. has a great reputation and I felt comfortable with him. I had a lumpectomy with plans for 6 weeks of radiation. When the path. report came back, the lateral margin showed there were still cells . I had a choice of having radiation and hoping all the cells were gone (no way to really know) or having a mastectomy where all the breast tissue is removed so all the cells are gone. I chose the mastectomy with immediate reconstruction. I had a tramflap which is where they take the abdominal muscles from your stomach and tunnel them under the chest and form a breast. No implants needed. You get a tummy tuck at the same time(I lost 20lbs.--2 pant sizes down) I was out of work for 7 weeks. I'm a physical therapist in a nursing home and do very heavy lifting. I returned to work on light duty for 2 more weeks. After 7 weeks I also returned to the tennis courts. It has been uncomfortable but life goes on. I went out of network so my insurance didn't cover alot. I was lucky because my plastic surgeon has been willing to accept what the insurance has alloted him. I still have anesthesology bills, hospital bills etc. I've had 2 revisions of my reconstruction and just had my final stage, the tatoo of color on my aerola and nipple. I will be taking Tamoxifen for 5 years. I've been on it since Oct. 2000. The only side effect I've had is hot flashes which haven't been too bad,and increased density in my natural breast.My period ended immed. upon starting the meds but it came back this month(10 mos later)I have residule numbness up my abdomen around my breast and into my right scapula. I did not lose any strength or dexterity from my surgery. If I had to do it again, I would do exactly the same thing. Good luck to your mom! Contact me if you have any more questions. Cathy

akpatterson
Posts: 12
Joined: Feb 2001

I'm 44 and was diagnosed with BC in Feb. 2001. My surgeon explained that the decision between lumpectomy w/ radiation or mastectomy provided the same results. I went for a 2nd opinion. That doctor recommeneded the lumpectomy/radiation. I had heard of several people who had the lumpectomy but had to have more surgery. I met with a plastic surgeon and decided to have a mastectomy and reconstruction in the same surgery. Fortunately, my lymph nodes were clear, so I thought that I would not have to have radiation. Based on the size of the tumor (2.5 cm), my BC was stage II and I had to have 4 AC chemo treatments. (This was a real lesson in checking yourself EVERY month. If I had found it sooner and smaller, I might have avoided the chemo.) I will be going back to work on Aug 6th. So far insurance has covered everything and my company has been very supportive of me being out during chemo. I did find out that I need to have radiation. But this was only because the tumor was on the edge of my breast tissue, under my arm. The mastectomy removed all breast tissue, but there wasn't enough "margin" to declare the margins clear. I have not regretted my decision at all. I have not experienced any problems with my left arm after surgery. I actually went back to playing tennis about 7 weeks after my surgery. I was able to continue playing tennis about 1 week after each chemo treatment. I haven't started radiation yet, so I don't have any input for you. But I will look back on this, and know that I did everything possible to fight this disease. You and your family will get through this. Just remember that the side effects from surgery, chemo, and radiation are all temporary. You are a very special person for trying to gather this info for your Mom. Good luck to you and your Mom.
Angie

maestro099
Posts: 7
Joined: Jul 2001

I greatly appreciate each and everyone of your replies. Friends really do make the world go round!

pcarver
Posts: 19
Joined: Jul 2001

Hi,

Four years ago I was diagnoised with cancer of the right breast. I had breast and 29 lymph nodes removed. None of the lymph nodes were involved, but the doctor still recommended that I take chemo because the tumor was very large. So I took six months of chemo. Two weeks after having my breast removed I went to Disneyworld in Florida. It was also in July. It was not the most enjoyable vacation I had ever had, but the doctor insisted that I go. I think he was worried about my emotional state. I began taking chemo two weeks before the school year began ( I am a high school teacher). I began the school year on time and only missed on the days that I had chemo or doctor appointments. So your mom can go back to work. First of all, she will have to want to and also have a very positive attitude.

As far as regaining use of my arm, it did take awhile for that. Although, not very long. As a teacher, I did have to write on the board a lot and was able to do this without too much pain. Although, I would be lying to you if I said that there is not going to be pain. There will be, and it will be quite a bit, but she can make it. Just be very supportive for her.

I did have insurance with my employer at the time, and they paid very well.

Unfortunately, Wednesday I am having my left breast removed because a tumor that was just removed was found to be cancerous. Luckily, it was very small--only one-half inch in diameter, so the outlook is very good for me. Not sure if I will have to take chemo again or not. But I will if I have to.

I wish the best of luck to your mom. Tell her to put her faith in the Lord, and that writing her feelings down in a journal really helps. This is a way to vent her feelings.

May God bless,
pcarver

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