Lumpectomy Lounge....let's talk!
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Hi All -
May I introduce a new topic here in this forum? Has anyone had an a rash from radiation that kinds looks like a prickly heat rash. It is only on the right side of my body - which makes sense as that is the side that is being radiated Pretty sure it is not related to any changes in medications. I am using simple soaps - the Aveeno line - either the regular bar of soap, or the baby body wash. Tomorrow I have to see the PCP to see what they think it could be or not be in any case.
Any thoughts?
MarieBernice6234
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Hi everyone.Last Monday I finally made up my mind that if the plastic surgeon had any openings left this year( he only operates twice a month) if he had any openings I would go ahead and have my bad girl fat grafted,
Imagine my surprise when I call this Monday and they tell me they had an opening this very Wednesday!! So its been a whirlwind- My GP who is an hour from me did my pre-op. The next day I went to the cancer center for blood work since I was already having a lot of the tests my GP just ordered his through the Cancer Center in Grand Forks. which is 2 hours from me. My new oncologist who is subbing in for this winter out of retirement is a hoot- but he is also very old school as he is in his 70's. He also oked my surgery and told me that the Plastic Surgeon had to do a disclaimer to tell all that was wrong with the surgery. My new olcologist said it was fine to have!
Wed bright and early I want to the Plastic surgery suite and had my fat grafting done. Took about an hour but I did great. I love love love those little patches behind the ear for surgery. I didn't get nauseated at all!!
I took a sneak peek at my bruised up girl but she already looks better!! They took the fat from my tummy. I had hoped for 3 or 4 pounds but he said 3 or 4 ounces was enough. My tummy hurts worse than the girl but they gave me so narcotics and I am doing ok.
Now I wait to see if the fat took, if I need to redue it or fix it more It can be done at 3 or 4 months!!
So fello lumpies if you chose to fix your girl. fat grafting is an option and its not that bad of surgery. One hour you get to have a nice nap and I didn't wake up in a lot of pain at all.
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Marieberniece - no idea about the rash but I sure hope you get some solid answers tomorrow!
Ndgrrl - Thanks a lot for the info on the fat grafting - that's both useful and encouraging. With luck I won't need to use it but I'm glad to know this.
It does sound like it was a whirlwind but it's great that you got in so quickly and didn't have to wait. It's always encouraging when things go so well for a change! Take care of yourself and enjoy your new look!
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MarieBernice, as I mentioned on the Fall Rads forum, I think you are experiencing punctation - irritation of the hair follicles. That was the first side effect I experienced and I didn't even notice it - the NP pointed it out. Aquaphor was the treatment recommended. And I was fine. Give it a try!
NGGrrl, nice to know that the fat grafting worked for you. Right now i can't face the thought of more surgery. Not sure I'll do anything anyway but I'll tuck your info away in case I change my mind.
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bixxli, call your doctor. Doesn't sound right to me. Maybe an infection?
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bixlii...I would definitely call the surgeon...especially if it's "weepy".
KKay...I don't remember if you said you were going to PT? It's so hard to know which doc to see, or where to go for the different issues with bc and symptoms!! Chording gets fixed by a specialized lymphedema pt...women's physical therapy...surgeon should be able to refer you.
Did you call the surgeon? Whenever I had a problem I called the nurse directly and told her my story...I could usually get in pretty quick...but now maybe it's because of holiday time that is the reason you have to wait til December!! If you are already hooked up with PT call them maybe....good luck girl! Rosie
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ndgrrl: happy to hear you got right in for your surgery and that it all went well for you.
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Thanks Rosie. It is hard to know who to call. I called the surgeon first and it was Dec. 5th…that's when I called the Oncologist. After that I cried…."nobody cares that I have cancer" HA..after that moment of pitty, I sucked it up and reassessed my issue. I think that since it doesn't seem to be an infection I can wait till I see doc on Tuesday. I just wanted immediate gratification!! It's a full time job to stay positive all the time :-)
Ndgrrl - I was wondering about the possibility of using fat to fill in breast. That's great news as I have plenty of fat to use :-) I will certainly put this in my memory bank as I still have to get thru radiation therapy - ends Dec. 31.
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KKay...so you will see someone this Tuesday? That would be good. When do you start rads? Rosie
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Hi,I was told it takes about a year to heal from radiation so can not do fat grafting til then. So it will give you all something to think about for the future. I am doing ok. Tummy is more sore than breast but the girl seems to look ok but time will tell. 30 percent of the fat can be lost and the rest takes awhile to grow. I can redue in 3 to 6 months if I choose to at that time.
This surgery was diff for me- It was a surgery that I didn't have to do. It wasn't like the surgeries I had for breast cancer and to insert the balloon for internal radiation. Those I had to do. This one is all about me. and making myself feel good. That part has been hard on me. Doing something just for me.
Good luck everyone wherever your jouney takes you. If anyone has questions about any of the procedures I have had feel free to send a PM.
The support of all of you has been so helpful:) I wish to play it forward if I can. 0 -
NDgrll, nice to know someone who has had that surgery done. I don't think I will have it done. But who knows, I may decide to do it for me. I have tummy fat I'd be glad to "donate" . Now that DH is in a nursing home, I can see where it possibly would work for me to have additional surgery. Many hugs and much healing with GREAT results!
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MarieBernice6234; 20 Nov 2014 post
RE: rash from radiation (AKA: sunburn/sun poisoning recall or rads poisoning)
I had this rash appear 3rd week into rads, it was not a topical rash brought on by soap/creams/lotions, etc. or considered a common side effect for rads. It does look like heat rash. Was diag by my rad onc MD dept head as 'sun poisoning/burn recall' AKA: rads poisoning. As explained to me by my MD...if you have ever experienced sun exposure poisoning from being in the sun to long, had a severe burn, overexposure or heat rash, you developed a sun burn rash (as a child I spent summers on the beach in FL, 8 hours a day) the rash was red (looked like a sunburn) with raised bumps (very tiny) but you could feel the rash (about 600 hundred bumps on chest where the rads beam exited my body), between breasts and started to increase down to my navel area.
Recall is when you have rads for medical treatment (cancer, tumors, etc.), your body has stored the memory of the trauma from the sun, rads cause this to 'recall' the memory and you have the sun poisoning all over again as the rads pull the memory from your body, thus the recall. It took four medical specialists to look at me and misdiagnose what was happening, I did not accept that I was okay, it was normal and was nothing to worry about; three different RNs, one CNP (formerly a OBGYN RN). I refused to leave the breast center until the medical dept head MD looked at me. When she took a look at my skin, took her 10 seconds to know exactly what it was. She's an international onc MD for rads. They ordered a topical cream (script) to calm the burn and stop the itching. It's not normally in stock at your pharmacy and will have to be ordered. Aquaphor will do nothing for this type of skin irritation and trauma, it causes it to be more irritated. All the skin that was burnt by the rads fell off eventually (after rads were completed) but it was painful during the process and emotionally upsetting that four medical onc specialists could be so wrong because they didn't want to be bothered by asking someone above them what was wrong with my skin. There is nothing in the NIH, ACS, hospital or general booklets that describe this condition.
Fluocinolone 0.025%
Mfgr: Fougera
(pharmacy had to order it from a military supplier who had it in stock locally)
I went to one of my dermatologists and had a follow-up exam to explain what happened, the intake RN was eager to learn more about recall as it was not something she was taught in school or learned in OJT. They don't see many cancer patients who have rads.
Hope this helps other BC patients out there that can't get a straight answer when you need the truth and someone who is experienced and has the knowledge; finding something to ease the pain and itch is not an easy fix.
Be your own advocate and demand answers that make sense and support you the cancer patient to have some quality of life while going through treatments when experiencing side effects that can and should be properly diagnosed.
Wishing everyone a quality, safe and supported recovery plan.
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Rosie - I go to the RO on Tuesday, but think I will call my surgeon on Monday and request a referral to the PT. I have used my cousin (PT) for other issues, but think I'll go to the Womens Center for this. Now that I look, feel and think about it, you can really feel the twisted "rope" in my breast and I couldn't figure out why it would be coming from beneath my breast….well, I think it actually is coming from above and running all the way to my ribs.
I start Rads on Dec. 1st, but go the 21st for dry run.
ndgrrl - thanks for the info!
yogi girl - Thank you for the information on recall. That is very interesting as I am (was) in nursing school and they certainly don't teach you anything like that. Experience is the best teacher.
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Yoga Girl - good for you for pushing until you got answers. This condition may not effect many, but it is still so helpful to read how you got your answers and pushed through, not accepting just the nurse's comments. It's also encouraging to me to know you are on the other side of rads and made it through even those difficulties - way to go! Thanks for sharing your story
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If we can comfort just one person who will come after us in this journey, then we have accomplished what this site is here for, helping each other, day by day, one patient at a time, story by story. . .
I am so thankful to have patients reach out and share, feeling safe to ask anything, this site has made a world of difference in my treatment options and recovery plan.
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I learned so much from this site. I really felt informed when visiting my various oncs and that I was asking the right questions. Thank you one and all!
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I am nauseated - any thoughts?
Hi, I had my 2nd radiation tx yesterday.
I am very, very feeling very nauseated. It started last night, about 6 hours after treatment. It lasted about two hours, felt a little better, and I fell asleep.
Woke up and still feeling same nauseated way.
I really wanted to read some comments on this forum, respond to some - but I can't - I feel too bad.
I did apply the Fruit of the Earth gel yesterday and have no evidence of any skin reaction. I know others wrote they are allergic to Aloe, but it does not make sense my nauseated feeling is an allergy to Aloe.
So, does it seem I could be so nauseated from just two radiation treatments?
thanks in advance for your thoughts.
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Yikes, I have been nauseous all week. I asked the nurse about it. She said it wasn't from the radiation but that I probably had a stomach bug that has been going around. My fiance came down with it a couple of days later.
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Hi Jeanelle,
thank you for your response. I am sort of happy that it may not be from radiation but not happy you and your finance have a stomach bug!
My nauseated feeling is still here, so will see if anything else develops.
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Yikes, I don't think it's from the rads either. Bad case of nerves? Tummy bug? Those are more likely, I'd think. HUGS!
Jeanelle, sorry you're sick
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Thank you PontiacPeggy - yes, could be nerves , tummy bug . I'll see if continues into tomorrow.
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yikes...I get nauseous from time to time.....drinking seltzer water helps me. I'm having one now. Hope you feel better soon.
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to MarieBernice6234
I finally found your response to my concerns by doing a search! So thank you for your response. Well, if Effexor causes constipation I am going to have some major issues. I was told I will start Tamoxifen after my radiation is done, and I started the radiation tx on Nov. 20, 2014. I did start tapering down the zoloft. I started radiation the day after my tattoos, and was not ready for it, and am the person so concerned with what to put on my skin. I also am nauseated. I think you and I will start Tamoxifen around the same time.
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Hi Yoga_girl -
Thank you so much for the explanation you offered about the sunburn recall. It sounds exactly like the situation I have here at this time. My rash does look like a heat rash with the abundance of bumps just like you mentioned. What is surprising though is the fact that my radiation oncologist was definitely certain that it wasn't from the treatment. It was actually a nurse practitioner within the primary care office that diagnosed it. Going on the premise that you offered, I wouldn't think it would go away until some time after the end of treatment. The strength of the radiation will probably increase a bit more until the end. The person I saw for this gave me a prescription for Hydrocortisone 2.0 or 20% and Benedryl 50 mg. Even in my non-medical orientation I could not divorce the fact that the radiation and reaction were both on the same side. Just knowing that I wasn't totally off base makes me feel better.
Once again thanks for your help
MarieBernice6234
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Wow that was a lot of information on the last couple pages. I don't have much to add, but appreciate learning from you all. I actually have been reading about mastectomy bra fitting for lumpectomy patients. I'm thinking of getting a partial form just to fill in the space that is missing in order to keep my bra in place. Now the larger girl drags the bra sideways or opens it up (front close). I'm a plus size person but am not ready for a reduction surgery to make them them same size. Seems like that would be much more drastic than the fat grafting described above. Thanks for the info.
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Hello ladies. I was DX one year ago yesterday. Since then I have had one lumpectomy (and two re-incisions) on my left breast, followed by RADS and Tamoxifen. Had my one year mammogram, and everything looks fine-yay!
However I have this big, hard lump right where my incision was. I know it isn't cancer and the RO didn't seem concerned.
I just wondered if anyone else had this. And if there is something I could do to make it go away or if I am stuck with it.
Thanks!
Andrea
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Hi, Andrea--
Congratulations on your 1-year success. I am just a year ahead of you (almost exactly, according to our stats)--had my second clean mammo report last week--but since the lumpectomy have had a hard spot where the tumor was. In fact, the radiologist who read last week's mammo (3D) asked for magnified 2D pictures of that area, so that he could thoroughly check out the tissue. While the extra dose of radiation didn't thrill me, the news that the area looked fine did!
My surgeon says it is scar tissue, and he always checks its size at my 6-month visits. (It is now a lot smaller than it was the first year.) He has also said he wants an MRI next, so that he can check out the whole area in a different way, just to be sure. Bring the lump up with your surgeon when you see him next, since he/she is the one to determine what it is. With the lumpectomy plus 2 re-excisions you seem like a likely candidate for scar tissue buildup.
You asked about what anyone does about this, Well, while this experience is far from scientifically grounded nor intentional on my part, I did notice this summer that after spending a week in a resort where we used the hot tub on our balcony every day after hiking, the lump seemed to decrease in size more noticeably But who knows, maybe it wasn't the hot soaks at all, just the passing of time--but the soaks were great anyway! Certainly taking a nice hot (but not too hot) soak shouldn't cause any dire side effects!
TG
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Miminiemi - go for the fitting and get the form...I love mine...just went for a new bra this week:))) makes a big difference!
Andrea - my SND is a hard scar...no amount of Vit E massaged into ski has made a difference...BS said mi e was normal. Yes, our new normals
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My SND isn't hard. But I had fewer nodes removed than you did RMlulu. Maybe that matters. I am still putting Aquaphor on it since I'm still putting it on my breast, figure I might as well.
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andreaj and tgtg...I will be at a year on January 3 for surgery...I also have a lump...PT always said to massage area which we should still be doing with moisturizer...vitamin e fruit of the earth...not sure if it helps but I do it and my stretches!
I may be wrong but I thought I read somewhere that hot tubs are not recommended for people prone to lymphedema....which sucks if it's true...anyone else read that? And why? The extreme heat ? MY RO said I should stretch in the shower with the warm water on the area so I would think hot tubs are ok....love going in them with a nice beverage when at a hotel!! Hahaha...Rosie
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