ADH...need some help

Hi Arizonawarrior,

Even though a general surgeon is very capable of removing those areas I personally would go with a specialist Breast Surgeon. They are the ones that deal with the breast on a day to day basis. Your PCP may think that would be overkill but in reality it is not his body that needs the surgery so it really is what you want.

I know that hearing that you have DCIS or any other diagnosis of cancer is absolutely mind blowing and if you have difficulty mentally in the first place this can make things even worse. Having said that, what our minds can talk us into without knowing all the pro and cons can do more damage to us psychologically and that is why it's important to actually know what is going on as it really does make it easier to deal with.

We all would prefer not to have to do any of the treatments, in fact we all would prefer not to have cancer in the first place but sometimes the fates have a different path for us. We all fear what the treatment will do to us, what side effects we will need to endure etc but the bottom line really is we all have an enormous will to live and so end up doing all the things we fear in order to extend our lives. Is there a particular reason why you fear radiation and hormonal treatment? If there is, perhaps I can help allay those fears. Just keep posting here and I will look out for you.

The 'watch and wait' stance is okay for some but not for others..........I'm afraid I'm one of the others as it seems are you. I prefer to absolutely know what's going on so it can be dealt with.

I didn't have a lumpectomy as for me it had gone too far for that but there are many who are just fine after a couple of weeks. Always when checking out discussion boards and Mr Google it always seems to be the worse case scenarios that keep popping up and the common sense thing for that is that those who have no problems don't need to post. Believe me, there are way more with good stories than there are bad.

I'm hoping this has give you a little bit more peace of mind and I wish you well with your decisions.

Love n hugs. Chrissy

Arizonawarrior that is exactly what I needed from you.......truth. Yes the current treatments for cancer are still a little on the barbaric side and having to watch an older relative go through all the SE's when a child can leave some pretty damning images in your head and on your heart........so I really do get your fear.

I am stage IV, have bone mets so a lot of the fear has gone for me but I do remember vividly. Yes, menopause can be pretty terrible but in general the symptoms are not all that bad now as there are a lot of things both natural and chemical that can help us cope with them. First time around for me was pretty horrific, I'm missing a gene that helps the liver process chemo so after the first one my onc refused to give me more saying that if he did he would kill me a lot faster that the cancer would. Pretty heavy words when you are told in the first place that you need to have it to kill the cancer........that was my first time of hearing 'it's called quality of life not quantity'.........all very well for him to say, it was my life not his. My next treatment was Tamoxifen as I was at that stage not menopausal..........that one didn't do well for me either........I was put in hospital because of a suspected heart attack due to a rare SE of Tamoxifen. I'm not telling you this to frighten you more, what I am trying to do is let you know that it is possible to have all these horrible things and still be okay.

Okay? I hear you exclaim........yes, okay. All that happened twelve and a half years ago........yes, I am stage IV now (seven years) and yes I am taking an AI (Femara) and yes, I am NED (no evidence of active disease) and have been that way for five years. For someone who is allergic to so many things I am tolerating Femara........other than the occasional hot flush I have no other side effects. At the beginning I had more but they never lasted long before my body adjusted. Whether you have hormonal treatment or not you would still, because you are female, have to face menopause and whether it is naturally started or chemically started it will happen and it's not really worth all the fears that we have.

I know about the older relatives and the complaints they had when going through menopause, I heard it often from my mother and aunts and yes, like you, I also had a fear of it but have found that it is not all that bad.

Radiation makes you terribly fatigued and can damage the skin but the fatigue passes and the damage heals and yes it can be terribly painful while it's doing all that. Unlike years ago, there is now a lot more understanding of the why and how and what to do to alleviate the worst of these things so again, time has done a good job of allowing us the learn a lot more.

All final decisions are yours and no one else's and that includes having treatment or not but if fear is the thing that holds you back the most, learning more can give you the power to overcome those fears and if counselling is necessary that is also an option to help you through as long as it's with someone who deals with cancer patients.

There are a lot of women who journal and thy say that it helps them come to terms with what had happened and the thing that need to be endured in order to achieve a certain outcome so if that would make it easier for you then do it.

Love n hugs. Chrissy

Arizona, as another chronically anxious person dx'ed with ADH, I unfortunately have some experience with this.

I concur with everyone above that you should see a breast surgeon, not a general surgeon. Breast surgeons spend everyday looking at/thinking about/operating on breasts, as opposed to general surgeons who deal with an array of things. I also think that the "watch and wait" plan is not for you, as it would just add to your anxiety.

You should know that ADH is upgraded only approx 20% of the time to DCIS, so the odds are most definitely in your favor. I totally understand your fears of chemo, but evenin the unlikely event that you were upgraded to DCIS, chemo is NEVER indicated for that-- so, you are getting way ahead of yourself (I get it-- I do the same thing...)

Lumpectomy is an easy surgery. I had mine done early in the morning and was back home by the early afternoon. Incision was about 1.5 ". I took pain meds for a day or two and then, although the area was tender and bruised, I could pretty much go about my business as usual. Btw, I don't really understand the recommendation that you consult with a plastic surgeon, as any kind of reconstruction usually isn't necessary after a lumpectomy. As for seeing an oncologist, should this be needed, it will take place after the surgery and the pathology results-- not now.

Feel free to PM me if you've got more questions. Unfortunately, I've learned quite a bit about this topic.

Best wishes to you!

ArizonaWarrior, ask anyone you know, and try searching healthgrades.com (I think that's it)--search by zip and specialty and you can also see ratings & reviews of docs.

Good luck!

I just had two lumpectomies, one in each breast, on the 26th. It didn't hurt at all. I took no pain meds. It's been a little itchy, that's all. Part of my pathology came back and in addition to the LCIS in both breasts, they found ADH on the left. They found the LCIS in both on the stereotactic biopsy but did not find the ADH.

Hi Specter55,

Your post gave me a lot to think about. I think I'm facing the same thing you had since it appears my ADH is directly behind the nipple, judging from the mammogram and where they injected the vacuum gun during stereotactic biopsy. And based on several online questionnaires, my risk is quite high for development of carcinoma. So I've been combing these boards to gather questions to ask my surgical oncologist. You were really a champ to go ahead and get a double mastectomy--and it's something that has crossed my mind several times. Treatment options are likely going to be limited on me no matter what they find, mainly due to my medical history of blood clots and other factors, plus my age. So I feel they're going to clean out a large area on me. I'm actually wondering if that's going to be the case, why not get off the treatment/worry train over ADH for rest of my life and get a pair of perky new breasts out of the deal instead. Or have them reconstruct a breast for me from a tummy tuck (which I'd love to have) since they have several plastic surgeons on board to do it.